Synopsis

http://leaux.net/URLS/Synopses/5A71EB3B079C385D77612EE96779F088.html

Examining the file media/Synopses/E1E7C98544042A411A34EC881D1753FE.html:

This file was generated: 2020-02-01 15:45:26

Indicators in focus are typically shown highlighted in yellow; Peer Indicators (that share the same Vulnerability association) are shown highlighted in pink; "Outside" Indicators (those that do NOT share the same Vulnerability association) are shown highlighted in green; Trigger Words/Phrases are shown highlighted in gray.

Link to Appendix (Indicator List, Indicator Peers, Trigger Words, Type/Vulnerability/Indicator Overlay, Document Map)


Economic / Economic/Poverty

Searching for indicator economic:

(return to top)
...
000013 p.000300: gray.
000014 p.000300:
000015 p.000300: Link to Appendix (Indicator List, Indicator Peers, Trigger Words, Type/Vulnerability/Indicator Overlay, Document Map)
000016 p.000300:
000017 p.000300:
000018 p.000300: Economic / Economic/Poverty
000019 p.000300: Searching for indicator economic:
000020 p.000300:
000021 p.000300: (return to top)
000022 p.000300: ...
000023 p.000300: 000031 p.000033: Appendix E: Example of ethical information in ESRC proposal 50
000024 p.000300: 000032 p.000033: Example of a completed Ethical Information section on ESRC proposal 50
000025 p.000300: 000033 p.000001: 1
000026 p.000300: 000034 p.000001:
000027 p.000300: 000035 p.000001: Introduction
000028 p.000300: 000036 p.000001: The Economic and Social Research Council (ESRC), in facilitating innovative and high quality research, expects that
000029 p.000300: the
000030 p.000300: 000037 p.000001: research we support will be carried out to a high ethical standard. By establishing the Framework for Research Ethics
000031 p.000300: 000038 p.000001: (FRE) we confirm our commitment to a process of regular review through consultation with the research community
000032 p.000300: and
...

...
000039 p.000300: 000650 p.000016: resources, including recognition in workload planning and the allocation of academic responsibilities, to carry out
000040 p.000300: 000651 p.000016: reviews with due care and attention; and to attend meetings of the REC. Any additional resourcing for these
000041 p.000300: 000652 p.000016: requirements should fall within a RO’s own budget. However, it should be remembered that the additional costs
000042 p.000300: incurred
000043 p.000300: 000653 p.000016: by the host RO in carrying out ethics review specifically for ESRC-funded research are eligible costs under the
000044 p.000300: 000654 p.000016: arrangements for Research Councils to meet a proportion of the full economic costs of research.
000045 p.000300: 000655 p.000016:
000046 p.000300: 000656 p.000016: Successful implementation of the FRE relies in a large part on the degree to which individual ROs have built
000047 p.000300: 000657 p.000016: appropriate structures and a culture that recognises the central place that engaging in ethical reflection occupies in
000048 p.000300: 000658 p.000016: good research practice. Encouraging a mindset towards a robust ethics culture and provision of training plays a
...

...
000055 p.000300: 001132 p.000027: This might arise for two reasons. First, as is recognised elsewhere (see Tri-Council of Canada, 2002
000056 p.000300: 001133 p.000027: (http://www.pre.ethics.gc.ca/English/policystatement/introduction.cfm)) research may be ‘deliberately and
000057 p.000300: legitimately
000058 p.000300: 001134 p.000027: opposed to the interests of the research participants or organisations’ in cases where the objectives of the
000059 p.000300: research
000060 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
000061 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
000062 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
000063 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
000064 p.000300: on
000065 p.000300: 001139 p.000027: some of the research participants/organisations. Principles of justice should, however, mean that researchers would
...

...
000070 p.000300: 001896 p.000045: • International Visual Sociology Association (2009). Code of Research Ethics and Guidelines
000071 p.000300: 001897 p.000045: http://visualsociology.org/about/ethics-and-guidelines.html
000072 p.000300: 001898 p.000045: • Market Research Society (2014). Code of Conduct https://www.mrs.org.uk/standards/code_of_conduct/
000073 p.000300: 001899 p.000045: • Nuffield Council on Bioethics (2009). Dementia: Ethical Issues
000074 p.000300: 001900 p.000045: http://nuffieldbioethics.org/wp-content/uploads/2014/07/Dementia-report-Oct-09.pdf
000075 p.000300: 001901 p.000045: • Respect Project (2004). An EU code of Ethics for socio-economic research
000076 p.000300: www.respectproject.org/code/index.php
000077 p.000300: 001902 p.000045: • Social Research Association (2003). Ethics Guidelines http://the-sra.org.uk/research- ethics/ethics-guidelines/
000078 p.000300: 001903 p.000045: • UK Data Service ethics advice: http://ukdataservice.ac.uk/manage-data/legal-ethical.aspx
000079 p.000300: 001904 p.000045: • UKRIO Code of Practice for Research www.ukrio.org/what-we-do/code-of-practice- for-research
...

...
000084 p.000300: 002093 p.000050: confidentially is afforded. Where necessary, the project information sheet will be translated, although it is
000085 p.000300: 002094 p.000050: anticipated that English will be the lingua franca. Participation in the research will be voluntary, and informed
000086 p.000300: 002095 p.000050: consent will be discussed with all participants. However, it is anticipated, particularly in the street surveys, that
000087 p.000300: 002096 p.000050: verbal as opposed to signed consent, will be more readily obtainable.
000088 p.000300: 002097 p.000050:
000089 p.000300: 002098 p.000050: The first stage of data collection involves a socio-economic and spatial survey of a multi- ethnic street in each
000090 p.000300: 002099 p.000050: respective city. Each shop unit is given a tracking code to relate the GIS spatial position to the survey material.
000091 p.000300: 002100 p.000050: Personal identifiers are removed and the anonymity of participants will be secured through both research unit codes
000092 p.000300: and
000093 p.000300: 002101 p.000050: pseudonyms. The raw data of each street survey will be collated in password protected computers and accessed by
...

...
000111 p.000300: 000732 p.000018: research participants with the contact details of a responsible officer within the RO who is independent of specific
000112 p.000300: 000733 p.000018: research projects and is empowered to instigate appropriate investigation of any complaints in a timely manner.
000113 p.000300: 000734 p.000018:
000114 p.000300: ...
000115 p.000300:
000116 p.000300: Economic / Welfare Recipient
000117 p.000300: Searching for indicator welfare:
000118 p.000300:
000119 p.000300: (return to top)
000120 p.000300: ...
...

...
000211 p.000300: 001132 p.000027: This might arise for two reasons. First, as is recognised elsewhere (see Tri-Council of Canada, 2002
000212 p.000300: 001133 p.000027: (http://www.pre.ethics.gc.ca/English/policystatement/introduction.cfm)) research may be ‘deliberately and
000213 p.000300: legitimately
000214 p.000300: 001134 p.000027: opposed to the interests of the research participants or organisations’ in cases where the objectives of the
000215 p.000300: research
000216 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
000217 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
000218 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
000219 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
000220 p.000300: on
000221 p.000300: 001139 p.000027: some of the research participants/organisations. Principles of justice should, however, mean that researchers would
...

...
000227 p.000300: (return to top)
000228 p.000300: ...
000229 p.000300: 000652 p.000016: requirements should fall within a RO’s own budget. However, it should be remembered that the additional costs
000230 p.000300: incurred
000231 p.000300: 000653 p.000016: by the host RO in carrying out ethics review specifically for ESRC-funded research are eligible costs under the
000232 p.000300: 000654 p.000016: arrangements for Research Councils to meet a proportion of the full economic costs of research.
000233 p.000300: 000655 p.000016:
000234 p.000300: 000656 p.000016: Successful implementation of the FRE relies in a large part on the degree to which individual ROs have built
000235 p.000300: 000657 p.000016: appropriate structures and a culture that recognises the central place that engaging in ethical reflection occupies in
000236 p.000300: 000658 p.000016: good research practice. Encouraging a mindset towards a robust ethics culture and provision of training plays a
...

...
001340 p.000300: 001796 p.000042: Research: Research is defined as any form of disciplined inquiry that aims to contribute to a body of knowledge or
001341 p.000300: ...
001342 p.000300:
001343 p.000300: ...
001344 p.000300: 001900 p.000045: http://nuffieldbioethics.org/wp-content/uploads/2014/07/Dementia-report-Oct-09.pdf
001345 p.000300: 001901 p.000045: • Respect Project (2004). An EU code of Ethics for socio-economic research
001346 p.000300: www.respectproject.org/code/index.php
001347 p.000300: 001902 p.000045: • Social Research Association (2003). Ethics Guidelines http://the-sra.org.uk/research- ethics/ethics-guidelines/
001348 p.000300: 001903 p.000045: • UK Data Service ethics advice: http://ukdataservice.ac.uk/manage-data/legal-ethical.aspx
001349 p.000300: 001904 p.000045: • UKRIO Code of Practice for Research www.ukrio.org/what-we-do/code-of-practice- for-research
...

...
001667 p.000300: 001132 p.000027: This might arise for two reasons. First, as is recognised elsewhere (see Tri-Council of Canada, 2002
001668 p.000300: 001133 p.000027: (http://www.pre.ethics.gc.ca/English/policystatement/introduction.cfm)) research may be ‘deliberately and
001669 p.000300: legitimately
001670 p.000300: 001134 p.000027: opposed to the interests of the research participants or organisations’ in cases where the objectives of the
001671 p.000300: research
001672 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
001673 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
001674 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
001675 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
001676 p.000300: on
001677 p.000300: 001139 p.000027: some of the research participants/organisations. Principles of justice should, however, mean that researchers would
...

...
002071 p.000300:
002072 p.000300: (return to top)
002073 p.000300: ...
002074 p.000300: 001134 p.000027: opposed to the interests of the research participants or organisations’ in cases where the objectives of the
002075 p.000300: research
002076 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
002077 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
002078 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
002079 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
002080 p.000300: on
002081 p.000300: 001139 p.000027: some of the research participants/organisations. Principles of justice should, however, mean that researchers would
...

...
002720 p.000300: 002093 p.000050: confidentially is afforded. Where necessary, the project information sheet will be translated, although it is
002721 p.000300: 002094 p.000050: anticipated that English will be the lingua franca. Participation in the research will be voluntary, and informed
002722 p.000300: 002095 p.000050: consent will be discussed with all participants. However, it is anticipated, particularly in the street surveys, that
002723 p.000300: 002096 p.000050: verbal as opposed to signed consent, will be more readily obtainable.
002724 p.000300: 002097 p.000050:
002725 p.000300: 002098 p.000050: The first stage of data collection involves a socio-economic and spatial survey of a multi- ethnic street in each
002726 p.000300: 002099 p.000050: respective city. Each shop unit is given a tracking code to relate the GIS spatial position to the survey material.
002727 p.000300: 002100 p.000050: Personal identifiers are removed and the anonymity of participants will be secured through both research unit codes
002728 p.000300: and
002729 p.000300: 002101 p.000050: pseudonyms. The raw data of each street survey will be collated in password protected computers and accessed by
...

...
003340 p.000300: 000031 p.000033: Appendix E: Example of ethical information in ESRC proposal 50
003341 p.000300: 000032 p.000033: Example of a completed Ethical Information section on ESRC proposal 50
003342 p.000300: 000033 p.000001: 1
003343 p.000300: 000034 p.000001:
003344 p.000300: 000035 p.000001: Introduction
003345 p.000300: 000036 p.000001: The Economic and Social Research Council (ESRC), in facilitating innovative and high quality research, expects that
003346 p.000300: the
003347 p.000300: 000037 p.000001: research we support will be carried out to a high ethical standard. By establishing the Framework for Research Ethics
003348 p.000300: 000038 p.000001: (FRE) we confirm our commitment to a process of regular review through consultation with the research community
003349 p.000300: and
...

...
003603 p.000300: 001132 p.000027: This might arise for two reasons. First, as is recognised elsewhere (see Tri-Council of Canada, 2002
003604 p.000300: 001133 p.000027: (http://www.pre.ethics.gc.ca/English/policystatement/introduction.cfm)) research may be ‘deliberately and
003605 p.000300: legitimately
003606 p.000300: 001134 p.000027: opposed to the interests of the research participants or organisations’ in cases where the objectives of the
003607 p.000300: research
003608 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
003609 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
003610 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
003611 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
003612 p.000300: on
003613 p.000300: 001139 p.000027: some of the research participants/organisations. Principles of justice should, however, mean that researchers would
...

...
003753 p.000300: ...
003754 p.000300: 001897 p.000045: http://visualsociology.org/about/ethics-and-guidelines.html
003755 p.000300: 001898 p.000045: • Market Research Society (2014). Code of Conduct https://www.mrs.org.uk/standards/code_of_conduct/
003756 p.000300: 001899 p.000045: • Nuffield Council on Bioethics (2009). Dementia: Ethical Issues
003757 p.000300: 001900 p.000045: http://nuffieldbioethics.org/wp-content/uploads/2014/07/Dementia-report-Oct-09.pdf
003758 p.000300: 001901 p.000045: • Respect Project (2004). An EU code of Ethics for socio-economic research
003759 p.000300: www.respectproject.org/code/index.php
003760 p.000300: 001902 p.000045: • Social Research Association (2003). Ethics Guidelines http://the-sra.org.uk/research- ethics/ethics-guidelines/
003761 p.000300: 001903 p.000045: • UK Data Service ethics advice: http://ukdataservice.ac.uk/manage-data/legal-ethical.aspx
003762 p.000300: 001904 p.000045: • UKRIO Code of Practice for Research www.ukrio.org/what-we-do/code-of-practice- for-research
...

...
004046 p.000300: deceased Linguistic Proficiency
004047 p.000300: dependence Drug Dependence
004048 p.000300: dependent Dependent
004049 p.000300: disability Mentally Disabled
004050 p.000300: drug Drug Usage
004051 p.000300: economic Economic/Poverty
004052 p.000300: education Educational
004053 p.000300: educational Educational
004054 p.000300: elderly Elderly
004055 p.000300: engaged Marital Status
...

...
004074 p.000300: opinion
004075 p.000300: Opinion
004076 p.000300: party Political
004077 p.000300: physically LGBTQ+ Status
004078 p.000300: political Political
004079 p.000300: poor Economic/Poverty
004080 p.000300: racial Racial Minority
004081 p.000300: religious Religion
004082 p.000300: restricted Incarcerated
004083 p.000300: single Marital Status
...

...
004102 p.000300: cognitive ['cognitive impairment', 'impairment', 'impaired']
004103 p.000300: cognitive impairment ['cognitive', 'impairment', 'impaired']
004104 p.000300: cultural ['culture']
004105 p.000300: culture ['cultural']
004106 p.000300: drug ['influence']
004107 p.000300: economic ['poor']
004108 p.000300: education ['educational']
004109 p.000300: educational ['education']
004110 p.000300: engaged ['single']
004111 p.000300: ['cognitive', 'cognitive impairment',
...

...
004113 p.000300: 'impairment']
004114 p.000300: impairment ['cognitive', 'cognitive impairment', 'impaired']
004115 p.000300: influence ['drug']
004116 p.000300: party ['political']
004117 p.000300: political ['party']
004118 p.000300: poor ['economic']
004119 p.000300: religious ['special']
004120 p.000300: single ['engaged']
004121 p.000300: special ['religious']
004122 p.000300: vulnerable ['child', 'children']
...

...
004146 p.000300:
004147 p.000300: Applicable Type / Vulnerability / Indicator Overlay for this Input
004148 p.000300: Vulnerability
004149 p.000300: Vulnerability Indicator
004150 p.000300: Type
004151 p.000300: Economic Economic/Poverty economic
004152 p.000300: Economic Economic/Poverty poor
004153 p.000300: Economic Welfare Recipient welfare
004154 p.000300: General/Other Cultural Differences cultural
004155 p.000300: General/Other Cultural Differences culture
004156 p.000300: General/Other Dependent dependent
004157 p.000300: General/Other Diminished Autonomy age
...

Searching for indicator poor:

(return to top)
...
000093 p.000300: 002101 p.000050: pseudonyms. The raw data of each street survey will be collated in password protected computers and accessed by
000094 p.000300: the
000095 p.000300: 002102 p.000050: principal investigator and the two research assistants. The data will then be systematised and stored in two
000096 p.000300: ...
000097 p.000300:
000098 p.000300: Searching for indicator poor:
000099 p.000300:
000100 p.000300: (return to top)
000101 p.000300: ...
000102 p.000300: 000725 p.000018: available should we wish to see them.
000103 p.000300: 000726 p.000018:
000104 p.000300: 000727 p.000018: 1.6 Complaints, appeals and conflict of interest procedures should be in place
000105 p.000300: 000728 p.000018: Complaints - ROs should publish procedures and mechanisms for receiving and addressing, in a timely manner,
000106 p.000300: complaints
000107 p.000300: 000729 p.000018: or expressions of concern about the conduct of research carried out under their auspices. Such complaints would
000108 p.000300: 000730 p.000018: normally be regarded as allegations of either poor performance or unethical conduct and would appropriately be
000109 p.000300: 000731 p.000018: addressed through the RO’s procedures for dealing with such allegations. Such mechanisms might include
000110 p.000300: providing
000111 p.000300: 000732 p.000018: research participants with the contact details of a responsible officer within the RO who is independent of specific
000112 p.000300: 000733 p.000018: research projects and is empowered to instigate appropriate investigation of any complaints in a timely manner.
...

...
003224 p.000300: ...
003225 p.000300: 000727 p.000018: 1.6 Complaints, appeals and conflict of interest procedures should be in place
003226 p.000300: 000728 p.000018: Complaints - ROs should publish procedures and mechanisms for receiving and addressing, in a timely manner,
003227 p.000300: complaints
003228 p.000300: 000729 p.000018: or expressions of concern about the conduct of research carried out under their auspices. Such complaints would
003229 p.000300: 000730 p.000018: normally be regarded as allegations of either poor performance or unethical conduct and would appropriately be
003230 p.000300: 000731 p.000018: addressed through the RO’s procedures for dealing with such allegations. Such mechanisms might include
003231 p.000300: providing
003232 p.000300: 000732 p.000018: research participants with the contact details of a responsible officer within the RO who is independent of specific
003233 p.000300: 000733 p.000018: research projects and is empowered to instigate appropriate investigation of any complaints in a timely manner.
...

...
004074 p.000300: opinion
004075 p.000300: Opinion
004076 p.000300: party Political
004077 p.000300: physically LGBTQ+ Status
004078 p.000300: political Political
004079 p.000300: poor Economic/Poverty
004080 p.000300: racial Racial Minority
004081 p.000300: religious Religion
004082 p.000300: restricted Incarcerated
004083 p.000300: single Marital Status
...

...
004102 p.000300: cognitive ['cognitive impairment', 'impairment', 'impaired']
004103 p.000300: cognitive impairment ['cognitive', 'impairment', 'impaired']
004104 p.000300: cultural ['culture']
004105 p.000300: culture ['cultural']
004106 p.000300: drug ['influence']
004107 p.000300: economic ['poor']
004108 p.000300: education ['educational']
004109 p.000300: educational ['education']
004110 p.000300: engaged ['single']
004111 p.000300: ['cognitive', 'cognitive impairment',
...

...
004113 p.000300: 'impairment']
004114 p.000300: impairment ['cognitive', 'cognitive impairment', 'impaired']
004115 p.000300: influence ['drug']
004116 p.000300: party ['political']
004117 p.000300: political ['party']
004118 p.000300: poor ['economic']
004119 p.000300: religious ['special']
004120 p.000300: single ['engaged']
004121 p.000300: special ['religious']
004122 p.000300: vulnerable ['child', 'children']
...

...
004146 p.000300:
004147 p.000300: Applicable Type / Vulnerability / Indicator Overlay for this Input
004148 p.000300: Vulnerability
004149 p.000300: Vulnerability Indicator
004150 p.000300: Type
004151 p.000300: Economic Economic/Poverty economic
004152 p.000300: Economic Economic/Poverty poor
004153 p.000300: Economic Welfare Recipient welfare
004154 p.000300: General/Other Cultural Differences cultural
004155 p.000300: General/Other Cultural Differences culture
004156 p.000300: General/Other Dependent dependent
004157 p.000300: General/Other Diminished Autonomy age
...

Searching for indicator poverty:

(return to top)
...
000013 p.000300: gray.
000014 p.000300:
000015 p.000300: Link to Appendix (Indicator List, Indicator Peers, Trigger Words, Type/Vulnerability/Indicator Overlay, Document Map)
000016 p.000300:
000017 p.000300:
000018 p.000300: Economic / Economic/Poverty
000019 p.000300: Searching for indicator economic:
000020 p.000300:
000021 p.000300: (return to top)
000022 p.000300: ...
000023 p.000300: 000031 p.000033: Appendix E: Example of ethical information in ESRC proposal 50
...

...
004046 p.000300: deceased Linguistic Proficiency
004047 p.000300: dependence Drug Dependence
004048 p.000300: dependent Dependent
004049 p.000300: disability Mentally Disabled
004050 p.000300: drug Drug Usage
004051 p.000300: economic Economic/Poverty
004052 p.000300: education Educational
004053 p.000300: educational Educational
004054 p.000300: elderly Elderly
004055 p.000300: engaged Marital Status
...

...
004074 p.000300: opinion
004075 p.000300: Opinion
004076 p.000300: party Political
004077 p.000300: physically LGBTQ+ Status
004078 p.000300: political Political
004079 p.000300: poor Economic/Poverty
004080 p.000300: racial Racial Minority
004081 p.000300: religious Religion
004082 p.000300: restricted Incarcerated
004083 p.000300: single Marital Status
...

...
004146 p.000300:
004147 p.000300: Applicable Type / Vulnerability / Indicator Overlay for this Input
004148 p.000300: Vulnerability
004149 p.000300: Vulnerability Indicator
004150 p.000300: Type
004151 p.000300: Economic Economic/Poverty economic
004152 p.000300: Economic Economic/Poverty poor
004153 p.000300: Economic Welfare Recipient welfare
004154 p.000300: General/Other Cultural Differences cultural
004155 p.000300: General/Other Cultural Differences culture
004156 p.000300: General/Other Dependent dependent
004157 p.000300: General/Other Diminished Autonomy age
...

Economic / Welfare Recipient

Searching for indicator welfare:

(return to top)
...
000111 p.000300: 000732 p.000018: research participants with the contact details of a responsible officer within the RO who is independent of specific
000112 p.000300: 000733 p.000018: research projects and is empowered to instigate appropriate investigation of any complaints in a timely manner.
000113 p.000300: 000734 p.000018:
000114 p.000300: ...
000115 p.000300:
000116 p.000300: Economic / Welfare Recipient
000117 p.000300: Searching for indicator welfare:
000118 p.000300:
000119 p.000300: (return to top)
000120 p.000300: ...
000121 p.000300: 000537 p.000013: competent and timely. In some circumstances RECs may authorise other sub-committees or their chair to conduct
000122 p.000300: reviews
000123 p.000300: 000538 p.000013: on research involving minimal risk on their behalf. These sub-committees and chair will have no conflicts of interest
000124 p.000300: 000539 p.000013: with the project and will be accountable to the REC and through it to the appropriate organisational authorities for
000125 p.000300: 000540 p.000013: the decisions they make.
000126 p.000300: 000541 p.000013:
000127 p.000300: 000542 p.000013: The primary role of a REC is to protect the dignity, rights and welfare of research participants. RECs should also give
000128 p.000300: 000543 p.000013: due regard to the consequences of the proposed research for others directly affected by it, and to the interests of
000129 p.000300: 000544 p.000013: those who do not take part in the research but who might benefit or suffer from its outcomes in the future. RECs also
000130 p.000300: 000545 p.000013: need to consider the safety of researchers, especially where they are working in covert situations and/or conducting
000131 p.000300: 000546 p.000013: lone fieldwork in settings that may pose risk to their safety, nationally and internationally.
...

...
000136 p.000300: 000705 p.000017: concerns about the ethics in the conduct of the study, it should request a full and detailed account of the research
000137 p.000300: 000706 p.000017: for full ethics review by the responsible REC.
000138 p.000300: 000707 p.000017:
000139 p.000300: 000708 p.000017: Where a REC or designated sub-committee considers that a study is being conducted in a way which is not in accord
000140 p.000300: with
000141 p.000300: 000709 p.000017: the conditions of its review or in a way which does not appropriately protect the rights, dignity and welfare of
000142 p.000300: 000710 p.000017: research participants, it should initially bring together a meeting of all those concerned with a view to resolving the
000143 p.000300: 000711 p.000017: difficulties. In an extreme situation, the REC may withdraw its support, and require that the research be suspended or
000144 p.000300: 000712 p.000017: discontinued. The ESRC should be informed of this decision and reserves the right to recoup its grant funding in
000145 p.000300: 000713 p.000017: extreme cases of ethics and research misconduct, pending further investigation.
...

...
000151 p.000300: 001318 p.000032: who knows the person well who lacks capacity to make a decision, but is not a professional or paid care worker; this
000152 p.000300: 001319 p.000032: does not include family members receiving some of the person’s pension or other benefits as a payment towards
000153 p.000300: their
000154 p.000300: 001320 p.000032: share of the household expenses. The guidance states that it should be someone whom the person who lacks
000155 p.000300: capacity to
000156 p.000300: 001321 p.000032: make a decision would trust with important decisions about their welfare.
000157 p.000300: 001322 p.000032: Thus, a personal consultee could be a family member or close friend of the person.
000158 p.000300: 001323 p.000032:
000159 p.000300: 001324 p.000032: If no personal consultee can be identified, a nominated consultee should be proposed by the researcher. This is
000160 p.000300: someone
...

...
000178 p.000300: 001801 p.000042: exchange and impact activities after the research has been published.
000179 p.000300: 001802 p.000042:
000180 p.000300: 001803 p.000043: 43
000181 p.000300: 001804 p.000043:
000182 p.000300: 001805 p.000043: Research Ethics Committee: A Research Ethics Committee (REC) is defined as a multidisciplinary, independent body
000183 p.000300: 001806 p.000043: charged with reviewing research involving human participants to ensure that their dignity, rights and welfare are
000184 p.000300: 001807 p.000043: protected. The independence of a REC is founded on its membership, on strict rules regarding conflict of interests, and
000185 p.000300: 001808 p.000043: on regular monitoring of and accountability for its decisions.
000186 p.000300: 001809 p.000043:
000187 p.000300: 001810 p.000043: Research project lifecycle: includes the planning stage, the period of funding for the project and all activities that
...

...
001479 p.000300: 001318 p.000032: who knows the person well who lacks capacity to make a decision, but is not a professional or paid care worker; this
001480 p.000300: 001319 p.000032: does not include family members receiving some of the person’s pension or other benefits as a payment towards
001481 p.000300: their
001482 p.000300: 001320 p.000032: share of the household expenses. The guidance states that it should be someone whom the person who lacks
001483 p.000300: capacity to
001484 p.000300: 001321 p.000032: make a decision would trust with important decisions about their welfare.
001485 p.000300: 001322 p.000032: Thus, a personal consultee could be a family member or close friend of the person.
001486 p.000300: 001323 p.000032:
001487 p.000300: 001324 p.000032: If no personal consultee can be identified, a nominated consultee should be proposed by the researcher. This is
001488 p.000300: someone
...

...
002873 p.000300: 001318 p.000032: who knows the person well who lacks capacity to make a decision, but is not a professional or paid care worker; this
002874 p.000300: 001319 p.000032: does not include family members receiving some of the person’s pension or other benefits as a payment towards
002875 p.000300: their
002876 p.000300: 001320 p.000032: share of the household expenses. The guidance states that it should be someone whom the person who lacks
002877 p.000300: capacity to
002878 p.000300: 001321 p.000032: make a decision would trust with important decisions about their welfare.
002879 p.000300: 001322 p.000032: Thus, a personal consultee could be a family member or close friend of the person.
002880 p.000300: 001323 p.000032:
002881 p.000300: 001324 p.000032: If no personal consultee can be identified, a nominated consultee should be proposed by the researcher. This is
002882 p.000300: someone
...

...
004089 p.000300: undue influence Undue Influence
004090 p.000300: union Trade Union Membership
004091 p.000300: usage Laboratory Staff
004092 p.000300: violence Threat of Violence
004093 p.000300: vulnerable Child
004094 p.000300: welfare Welfare Recipient
004095 p.000300: women Women
004096 p.000300:
004097 p.000300:
004098 p.000300: Indicator Peers (Indicators in Same Vulnerabilty)
...

...
004148 p.000300: Vulnerability
004149 p.000300: Vulnerability Indicator
004150 p.000300: Type
004151 p.000300: Economic Economic/Poverty economic
004152 p.000300: Economic Economic/Poverty poor
004153 p.000300: Economic Welfare Recipient welfare
004154 p.000300: General/Other Cultural Differences cultural
004155 p.000300: General/Other Cultural Differences culture
004156 p.000300: General/Other Dependent dependent
004157 p.000300: General/Other Diminished Autonomy age
...

Searching for indicator welfare recipient:

(return to top)
...
000111 p.000300: 000732 p.000018: research participants with the contact details of a responsible officer within the RO who is independent of specific
000112 p.000300: 000733 p.000018: research projects and is empowered to instigate appropriate investigation of any complaints in a timely manner.
000113 p.000300: 000734 p.000018:
000114 p.000300: ...
000115 p.000300:
000116 p.000300: Economic / Welfare Recipient
000117 p.000300: Searching for indicator welfare:
000118 p.000300:
000119 p.000300: (return to top)
000120 p.000300: ...
000121 p.000300: 000537 p.000013: competent and timely. In some circumstances RECs may authorise other sub-committees or their chair to conduct
...

...
004089 p.000300: undue influence Undue Influence
004090 p.000300: union Trade Union Membership
004091 p.000300: usage Laboratory Staff
004092 p.000300: violence Threat of Violence
004093 p.000300: vulnerable Child
004094 p.000300: welfare Welfare Recipient
004095 p.000300: women Women
004096 p.000300:
004097 p.000300:
004098 p.000300: Indicator Peers (Indicators in Same Vulnerabilty)
...

...
004148 p.000300: Vulnerability
004149 p.000300: Vulnerability Indicator
004150 p.000300: Type
004151 p.000300: Economic Economic/Poverty economic
004152 p.000300: Economic Economic/Poverty poor
004153 p.000300: Economic Welfare Recipient welfare
004154 p.000300: General/Other Cultural Differences cultural
004155 p.000300: General/Other Cultural Differences culture
004156 p.000300: General/Other Dependent dependent
004157 p.000300: General/Other Diminished Autonomy age
...

General/Other / Cultural Differences

Searching for indicator cultural:

(return to top)
...
000055 p.000300: 001132 p.000027: This might arise for two reasons. First, as is recognised elsewhere (see Tri-Council of Canada, 2002
000056 p.000300: 001133 p.000027: (http://www.pre.ethics.gc.ca/English/policystatement/introduction.cfm)) research may be ‘deliberately and
000057 p.000300: legitimately
000058 p.000300: 001134 p.000027: opposed to the interests of the research participants or organisations’ in cases where the objectives of the
000059 p.000300: research
000060 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
000061 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
000062 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
000063 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
000064 p.000300: on
000065 p.000300: 001139 p.000027: some of the research participants/organisations. Principles of justice should, however, mean that researchers would
...

...
000185 p.000300: 001808 p.000043: on regular monitoring of and accountability for its decisions.
000186 p.000300: 001809 p.000043:
000187 p.000300: 001810 p.000043: Research project lifecycle: includes the planning stage, the period of funding for the project and all activities that
000188 p.000300: ...
000189 p.000300:
000190 p.000300: General/Other / Cultural Differences
000191 p.000300: Searching for indicator cultural:
000192 p.000300:
000193 p.000300: (return to top)
000194 p.000300: ...
000195 p.000300: 000839 p.000020: developing and undertaking the research. Legal and ethical requirements for all the partner countries must be
000196 p.000300: ensured.
000197 p.000300: 000840 p.000020:
000198 p.000300: 000841 p.000020: There are several considerations here:
000199 p.000300: 000842 p.000020:
000200 p.000300: 000843 p.000020: • inequities in regard to access to research resources
000201 p.000300: 000844 p.000020: • political and cultural considerations with regard to professional training and oversight; differingethics
000202 p.000300: 000845 p.000020: traditions in research
000203 p.000300: 000846 p.000020: • increased risk to researchers and participants where they are working remotely
000204 p.000300: 000847 p.000021: 21
000205 p.000300: 000848 p.000021:
...

...
000211 p.000300: 001132 p.000027: This might arise for two reasons. First, as is recognised elsewhere (see Tri-Council of Canada, 2002
000212 p.000300: 001133 p.000027: (http://www.pre.ethics.gc.ca/English/policystatement/introduction.cfm)) research may be ‘deliberately and
000213 p.000300: legitimately
000214 p.000300: 001134 p.000027: opposed to the interests of the research participants or organisations’ in cases where the objectives of the
000215 p.000300: research
000216 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
000217 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
000218 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
000219 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
000220 p.000300: on
000221 p.000300: 001139 p.000027: some of the research participants/organisations. Principles of justice should, however, mean that researchers would
...

...
001638 p.000300: ensured.
001639 p.000300: 000840 p.000020:
001640 p.000300: 000841 p.000020: There are several considerations here:
001641 p.000300: 000842 p.000020:
001642 p.000300: 000843 p.000020: • inequities in regard to access to research resources
001643 p.000300: 000844 p.000020: • political and cultural considerations with regard to professional training and oversight; differingethics
001644 p.000300: 000845 p.000020: traditions in research
001645 p.000300: 000846 p.000020: • increased risk to researchers and participants where they are working remotely
001646 p.000300: 000847 p.000021: 21
001647 p.000300: 000848 p.000021:
...

...
001667 p.000300: 001132 p.000027: This might arise for two reasons. First, as is recognised elsewhere (see Tri-Council of Canada, 2002
001668 p.000300: 001133 p.000027: (http://www.pre.ethics.gc.ca/English/policystatement/introduction.cfm)) research may be ‘deliberately and
001669 p.000300: legitimately
001670 p.000300: 001134 p.000027: opposed to the interests of the research participants or organisations’ in cases where the objectives of the
001671 p.000300: research
001672 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
001673 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
001674 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
001675 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
001676 p.000300: on
001677 p.000300: 001139 p.000027: some of the research participants/organisations. Principles of justice should, however, mean that researchers would
...

...
001885 p.000300: ensured.
001886 p.000300: 000840 p.000020:
001887 p.000300: 000841 p.000020: There are several considerations here:
001888 p.000300: 000842 p.000020:
001889 p.000300: 000843 p.000020: • inequities in regard to access to research resources
001890 p.000300: 000844 p.000020: • political and cultural considerations with regard to professional training and oversight; differingethics
001891 p.000300: 000845 p.000020: traditions in research
001892 p.000300: 000846 p.000020: • increased risk to researchers and participants where they are working remotely
001893 p.000300: 000847 p.000021: 21
001894 p.000300: 000848 p.000021:
...

...
002071 p.000300:
002072 p.000300: (return to top)
002073 p.000300: ...
002074 p.000300: 001134 p.000027: opposed to the interests of the research participants or organisations’ in cases where the objectives of the
002075 p.000300: research
002076 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
002077 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
002078 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
002079 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
002080 p.000300: on
002081 p.000300: 001139 p.000027: some of the research participants/organisations. Principles of justice should, however, mean that researchers would
...

...
003603 p.000300: 001132 p.000027: This might arise for two reasons. First, as is recognised elsewhere (see Tri-Council of Canada, 2002
003604 p.000300: 001133 p.000027: (http://www.pre.ethics.gc.ca/English/policystatement/introduction.cfm)) research may be ‘deliberately and
003605 p.000300: legitimately
003606 p.000300: 001134 p.000027: opposed to the interests of the research participants or organisations’ in cases where the objectives of the
003607 p.000300: research
003608 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
003609 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
003610 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
003611 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
003612 p.000300: on
003613 p.000300: 001139 p.000027: some of the research participants/organisations. Principles of justice should, however, mean that researchers would
...

...
004039 p.000300: child Child
004040 p.000300: children Child
004041 p.000300: coercion Presence of Coercion
004042 p.000300: cognitive Cognitive Impairment
004043 p.000300: cognitive impairment Cognitive Impairment
004044 p.000300: cultural Cultural Differences
004045 p.000300: culture Cultural Differences
004046 p.000300: deceased Linguistic Proficiency
004047 p.000300: dependence Drug Dependence
004048 p.000300: dependent Dependent
004049 p.000300: disability Mentally Disabled
...

...
004099 p.000300: Indicator Peers
004100 p.000300: child ['children', 'vulnerable']
004101 p.000300: children ['child', 'vulnerable']
004102 p.000300: cognitive ['cognitive impairment', 'impairment', 'impaired']
004103 p.000300: cognitive impairment ['cognitive', 'impairment', 'impaired']
004104 p.000300: cultural ['culture']
004105 p.000300: culture ['cultural']
004106 p.000300: drug ['influence']
004107 p.000300: economic ['poor']
004108 p.000300: education ['educational']
004109 p.000300: educational ['education']
...

...
004149 p.000300: Vulnerability Indicator
004150 p.000300: Type
004151 p.000300: Economic Economic/Poverty economic
004152 p.000300: Economic Economic/Poverty poor
004153 p.000300: Economic Welfare Recipient welfare
004154 p.000300: General/Other Cultural Differences cultural
004155 p.000300: General/Other Cultural Differences culture
004156 p.000300: General/Other Dependent dependent
004157 p.000300: General/Other Diminished Autonomy age
004158 p.000300: General/Other Impaired Autonomy autonomy
004159 p.000300: General/Other Incapacitated incapacity
...

Searching for indicator culture:

(return to top)
...
000042 p.000300: incurred
000043 p.000300: 000653 p.000016: by the host RO in carrying out ethics review specifically for ESRC-funded research are eligible costs under the
000044 p.000300: 000654 p.000016: arrangements for Research Councils to meet a proportion of the full economic costs of research.
000045 p.000300: 000655 p.000016:
000046 p.000300: 000656 p.000016: Successful implementation of the FRE relies in a large part on the degree to which individual ROs have built
000047 p.000300: 000657 p.000016: appropriate structures and a culture that recognises the central place that engaging in ethical reflection occupies in
000048 p.000300: 000658 p.000016: good research practice. Encouraging a mindset towards a robust ethics culture and provision of training plays a
000049 p.000300: central
000050 p.000300: ...
000051 p.000300:
000052 p.000300: ...
...

...
000220 p.000300: on
000221 p.000300: 001139 p.000027: some of the research participants/organisations. Principles of justice should, however, mean that researchers would
000222 p.000300: 001140 p.000027: seek to minimise any personal harm to individuals. Secondly, researchers should also consider how to balance the
000223 p.000300: ...
000224 p.000300:
000225 p.000300: Searching for indicator culture:
000226 p.000300:
000227 p.000300: (return to top)
000228 p.000300: ...
000229 p.000300: 000652 p.000016: requirements should fall within a RO’s own budget. However, it should be remembered that the additional costs
000230 p.000300: incurred
000231 p.000300: 000653 p.000016: by the host RO in carrying out ethics review specifically for ESRC-funded research are eligible costs under the
000232 p.000300: 000654 p.000016: arrangements for Research Councils to meet a proportion of the full economic costs of research.
000233 p.000300: 000655 p.000016:
000234 p.000300: 000656 p.000016: Successful implementation of the FRE relies in a large part on the degree to which individual ROs have built
000235 p.000300: 000657 p.000016: appropriate structures and a culture that recognises the central place that engaging in ethical reflection occupies in
000236 p.000300: 000658 p.000016: good research practice. Encouraging a mindset towards a robust ethics culture and provision of training plays a
000237 p.000300: central
000238 p.000300: 000659 p.000016: role in this process. Such training should be ongoing and become an integral part of research practice, given the
000239 p.000300: 000660 p.000016: changing ethics environment (see section 1.7)
000240 p.000300: 000661 p.000016:
...

...
000247 p.000300: 000685 p.000017: 17
000248 p.000300: 000686 p.000017:
000249 p.000300: 000687 p.000017: 1.5 ROs should establish procedures for monitoring research
000250 p.000300: 000688 p.000017: ROs should establish and publish working practices and procedures for monitoring research which encourage a
000251 p.000300: grassroots
000252 p.000300: 000689 p.000017: culture of robust collective governance.
000253 p.000300: 000690 p.000017:
000254 p.000300: 000691 p.000017: Where a study design is emergent, the REC should agree procedures for ongoing ethics review (for example through
000255 p.000300: a
000256 p.000300: 000692 p.000017: Project Advisory Group) with the researchers. Where the study design is largely fixed in advance, procedures for
...

...
000263 p.000300: reference
000264 p.000300: 000805 p.000019: to training in ethics and legal matters. ROs should ensure that training programmes they provide incorporate the range
000265 p.000300: 000806 p.000019: of issues addressed in
000266 p.000300: 000807 p.000020: 20
000267 p.000300: 000808 p.000020:
000268 p.000300: 000809 p.000020: the main framework document so that students embrace an ethics culture from the start of their research careers.
000269 p.000300: 000810 p.000020: Doctoral Training Centres should detail the ethics training that they provide for their students.
000270 p.000300: 000811 p.000020:
000271 p.000300: 000812 p.000020: 1.9 Arrangements should be made for collaborative research
000272 p.000300: 000813 p.000020: The FRE guidelines should be drawn to the attention of all proposed collaborators or project partners, providing
...

...
004039 p.000300: child Child
004040 p.000300: children Child
004041 p.000300: coercion Presence of Coercion
004042 p.000300: cognitive Cognitive Impairment
004043 p.000300: cognitive impairment Cognitive Impairment
004044 p.000300: cultural Cultural Differences
004045 p.000300: culture Cultural Differences
004046 p.000300: deceased Linguistic Proficiency
004047 p.000300: dependence Drug Dependence
004048 p.000300: dependent Dependent
004049 p.000300: disability Mentally Disabled
...

...
004099 p.000300: Indicator Peers
004100 p.000300: child ['children', 'vulnerable']
004101 p.000300: children ['child', 'vulnerable']
004102 p.000300: cognitive ['cognitive impairment', 'impairment', 'impaired']
004103 p.000300: cognitive impairment ['cognitive', 'impairment', 'impaired']
004104 p.000300: cultural ['culture']
004105 p.000300: culture ['cultural']
004106 p.000300: drug ['influence']
004107 p.000300: economic ['poor']
004108 p.000300: education ['educational']
004109 p.000300: educational ['education']
...

...
004149 p.000300: Vulnerability Indicator
004150 p.000300: Type
004151 p.000300: Economic Economic/Poverty economic
004152 p.000300: Economic Economic/Poverty poor
004153 p.000300: Economic Welfare Recipient welfare
004154 p.000300: General/Other Cultural Differences cultural
004155 p.000300: General/Other Cultural Differences culture
004156 p.000300: General/Other Dependent dependent
004157 p.000300: General/Other Diminished Autonomy age
004158 p.000300: General/Other Impaired Autonomy autonomy
004159 p.000300: General/Other Incapacitated incapacity
...

General/Other / Dependent

Searching for indicator dependent:

(return to top)
...
000270 p.000300: 000811 p.000020:
000271 p.000300: 000812 p.000020: 1.9 Arrangements should be made for collaborative research
000272 p.000300: 000813 p.000020: The FRE guidelines should be drawn to the attention of all proposed collaborators or project partners, providing
000273 p.000300: ...
000274 p.000300:
000275 p.000300: General/Other / Dependent
000276 p.000300: Searching for indicator dependent:
000277 p.000300:
000278 p.000300: (return to top)
000279 p.000300: ...
000280 p.000300: 000307 p.000007:
000281 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000282 p.000300: 000309 p.000007: Research involving:
000283 p.000300: 000310 p.000007:
000284 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000285 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000286 p.000300: 000313 p.000007:
000287 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000288 p.000300: research
000289 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
000294 p.000300: 000345 p.000008:
000295 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
000296 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
000297 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
000298 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
000299 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
000300 p.000300: gatekeeper
000301 p.000300: 000351 p.000008: (eg employees recruited through their workplace). Permission for access to other groups, for example participants in a
000302 p.000300: 000352 p.000008: long term cohort study, may also need to be requested from a data producer who controls access to the group.
000303 p.000300: 000353 p.000008:
...

...
000309 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
000310 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
000311 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
000312 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
000313 p.000300: 001188 p.000028:
000314 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
000315 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
000316 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
000317 p.000300: 001192 p.000029: 29
000318 p.000300: 001193 p.000029:
...

...
000323 p.000300: review
000324 p.000300: 002113 p.000050: approaches to participation, confidentiality and dissemination. Feedback on workshop findings will be offered to local
000325 p.000300: 002114 p.000050: authorities and associations through a summary report. More generally, participants will be able to view project
000326 p.000300: 002115 p.000050: information and findings on the 'Superdiverse streets' online project pages.
000327 p.000300: 002116 p.000050:
000328 p.000300: 002117 p.000050: In sum, for all stages of research dependent on research participants, I will submit anEthics Review Questionnaire
000329 p.000300: for
000330 p.000300: 002118 p.000050: Researchers to the LSE Research Ethics Committee, which operates in accordance with the ESRC ResearchEthics
000331 p.000300: Framework.
000332 p.000300: 002119 p.000050:
...

...
000915 p.000300: 000307 p.000007:
000916 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000917 p.000300: 000309 p.000007: Research involving:
000918 p.000300: 000310 p.000007:
000919 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000920 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000921 p.000300: 000313 p.000007:
000922 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000923 p.000300: research
000924 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
000946 p.000300: 000307 p.000007:
000947 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000948 p.000300: 000309 p.000007: Research involving:
000949 p.000300: 000310 p.000007:
000950 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000951 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000952 p.000300: 000313 p.000007:
000953 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000954 p.000300: research
000955 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
000996 p.000300: 000307 p.000007:
000997 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000998 p.000300: 000309 p.000007: Research involving:
000999 p.000300: 000310 p.000007:
001000 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
001001 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
001002 p.000300: 000313 p.000007:
001003 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001004 p.000300: research
001005 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
001417 p.000300: 000307 p.000007:
001418 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
001419 p.000300: 000309 p.000007: Research involving:
001420 p.000300: 000310 p.000007:
001421 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
001422 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
001423 p.000300: 000313 p.000007:
001424 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001425 p.000300: research
001426 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
001448 p.000300: 000345 p.000008:
001449 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
001450 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
001451 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
001452 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
001453 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
001454 p.000300: gatekeeper
001455 p.000300: 000351 p.000008: (eg employees recruited through their workplace). Permission for access to other groups, for example participants in a
001456 p.000300: 000352 p.000008: long term cohort study, may also need to be requested from a data producer who controls access to the group.
001457 p.000300: 000353 p.000008:
...

...
001804 p.000300: 000345 p.000008:
001805 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
001806 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
001807 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
001808 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
001809 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
001810 p.000300: gatekeeper
001811 p.000300: 000351 p.000008: (eg employees recruited through their workplace). Permission for access to other groups, for example participants in a
001812 p.000300: 000352 p.000008: long term cohort study, may also need to be requested from a data producer who controls access to the group.
001813 p.000300: 000353 p.000008:
...

...
001974 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
001975 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
001976 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
001977 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
001978 p.000300: 001188 p.000028:
001979 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
001980 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
001981 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
001982 p.000300: 001192 p.000029: 29
001983 p.000300: 001193 p.000029:
...

...
002108 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
002109 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
002110 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
002111 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
002112 p.000300: 001188 p.000028:
002113 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
002114 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
002115 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
002116 p.000300: 001192 p.000029: 29
002117 p.000300: 001193 p.000029:
...

...
002164 p.000300: 000307 p.000007:
002165 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
002166 p.000300: 000309 p.000007: Research involving:
002167 p.000300: 000310 p.000007:
002168 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002169 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002170 p.000300: 000313 p.000007:
002171 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002172 p.000300: research
002173 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
002181 p.000300: 000345 p.000008:
002182 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
002183 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
002184 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
002185 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
002186 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
002187 p.000300: gatekeeper
002188 p.000300: 000351 p.000008: (eg employees recruited through their workplace). Permission for access to other groups, for example participants in a
002189 p.000300: ...
002190 p.000300:
...

...
002250 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
002251 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
002252 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
002253 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
002254 p.000300: 001188 p.000028:
002255 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
002256 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
002257 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
002258 p.000300: 001192 p.000029: 29
002259 p.000300: 001193 p.000029:
...

...
002400 p.000300: 000307 p.000007:
002401 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
002402 p.000300: 000309 p.000007: Research involving:
002403 p.000300: 000310 p.000007:
002404 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002405 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002406 p.000300: 000313 p.000007:
002407 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002408 p.000300: research
002409 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
002470 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
002471 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
002472 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
002473 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
002474 p.000300: 001188 p.000028:
002475 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
002476 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
002477 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
002478 p.000300: 001192 p.000029: 29
002479 p.000300: 001193 p.000029:
...

...
002631 p.000300: 000345 p.000008:
002632 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
002633 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
002634 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
002635 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
002636 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
002637 p.000300: gatekeeper
002638 p.000300: 000351 p.000008: (eg employees recruited through their workplace). Permission for access to other groups, for example participants in a
002639 p.000300: 000352 p.000008: long term cohort study, may also need to be requested from a data producer who controls access to the group.
002640 p.000300: ...
...

...
002737 p.000300: (return to top)
002738 p.000300: ...
002739 p.000300: 000309 p.000007: Research involving:
002740 p.000300: 000310 p.000007:
002741 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002742 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002743 p.000300: 000313 p.000007:
002744 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002745 p.000300: research
002746 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
003047 p.000300: Social / Literacy
003048 p.000300: Searching for indicator literate:
003049 p.000300:
003050 p.000300: (return to top)
003051 p.000300: ...
003052 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
003053 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
003054 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
003055 p.000300: 001192 p.000029: 29
003056 p.000300: 001193 p.000029:
...

...
004043 p.000300: cognitive impairment Cognitive Impairment
004044 p.000300: cultural Cultural Differences
004045 p.000300: culture Cultural Differences
004046 p.000300: deceased Linguistic Proficiency
004047 p.000300: dependence Drug Dependence
004048 p.000300: dependent Dependent
004049 p.000300: disability Mentally Disabled
004050 p.000300: drug Drug Usage
004051 p.000300: economic Economic/Poverty
004052 p.000300: education Educational
...

...
004151 p.000300: Economic Economic/Poverty economic
004152 p.000300: Economic Economic/Poverty poor
004153 p.000300: Economic Welfare Recipient welfare
004154 p.000300: General/Other Cultural Differences cultural
004155 p.000300: General/Other Cultural Differences culture
004156 p.000300: General/Other Dependent dependent
004157 p.000300: General/Other Diminished Autonomy age
004158 p.000300: General/Other Impaired Autonomy autonomy
004159 p.000300: General/Other Incapacitated incapacity
004160 p.000300: General/Other Laboratory Staff usage
...

General/Other / Diminished Autonomy

Searching for indicator age:

(return to top)
...
000333 p.000300: 002120 p.000050:
000334 p.000300: 002121 p.000050:
000335 p.000300: ...
000336 p.000300:
000337 p.000300: General/Other / Diminished Autonomy
000338 p.000300: Searching for indicator age:
000339 p.000300:
000340 p.000300: (return to top)
000341 p.000300: ...
000342 p.000300: 000944 p.000023: Proxy consent
...

...
000345 p.000300: 000946 p.000023: research participants is necessary, the best interests of the vulnerable person should be of the highest importance.
000346 p.000300: 000947 p.000023: Proxy consent should only be used when participants are unable toconsent themselves or where it is legally
000347 p.000300: necessary.
000348 p.000300: 000948 p.000023: Care should be taken when consent cannot be sought from the participants, and it should not be assumed that
000349 p.000300: agreement
000350 p.000300: 000949 p.000023: cannot be sought from children because of their age.
000351 p.000300: 000950 p.000023: When proxy consent is used agreed criteria should be provided to confirm participants fully understands to what they
000352 p.000300: 000951 p.000023: are participating, and criteria identifying signs of participants’ unwillingness to take part or wishing to terminate
000353 p.000300: 000952 p.000023: the research interaction.
000354 p.000300: 000953 p.000023:
...

...
000359 p.000300: 001489 p.000035: Research that may need to be reviewed by NHS Research Ethics Committee or another external ethics committee (if
000360 p.000300: yes,
000361 p.000300: 001490 p.000035: please give brief details as an annex)
000362 p.000300: 001491 p.000035: Will the study involve recruitment of patients or staff through the NHS or the use of NHS data or premises and/or
000363 p.000300: 001492 p.000035: equipment?
000364 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
000365 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000366 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000367 p.000300: Scotland ‘A’
000368 p.000300: 001496 p.000035: REC).
...

...
000537 p.000300: 001489 p.000035: Research that may need to be reviewed by NHS Research Ethics Committee or another external ethics committee (if
000538 p.000300: yes,
000539 p.000300: 001490 p.000035: please give brief details as an annex)
000540 p.000300: 001491 p.000035: Will the study involve recruitment of patients or staff through the NHS or the use of NHS data or premises and/or
000541 p.000300: 001492 p.000035: equipment?
000542 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
000543 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000544 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000545 p.000300: Scotland ‘A’
000546 p.000300: 001496 p.000035: REC).
...

...
000924 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
000925 p.000300: 000316 p.000007:
000926 p.000300: ...
000927 p.000300:
000928 p.000300: ...
000929 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
000930 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000931 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000932 p.000300: Scotland ‘A’
000933 p.000300: 001496 p.000035: REC).
...

...
000955 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
000956 p.000300: 000316 p.000007:
000957 p.000300: ...
000958 p.000300:
000959 p.000300: ...
000960 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
000961 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000962 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000963 p.000300: Scotland ‘A’
000964 p.000300: 001496 p.000035: REC).
...

...
001024 p.000300: provisions for
001025 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
001026 p.000300: ...
001027 p.000300:
001028 p.000300: ...
001029 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
001030 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
001031 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
001032 p.000300: Scotland ‘A’
001033 p.000300: 001496 p.000035: REC).
...

...
002229 p.000300: 000946 p.000023: research participants is necessary, the best interests of the vulnerable person should be of the highest importance.
002230 p.000300: 000947 p.000023: Proxy consent should only be used when participants are unable toconsent themselves or where it is legally
002231 p.000300: necessary.
002232 p.000300: 000948 p.000023: Care should be taken when consent cannot be sought from the participants, and it should not be assumed that
002233 p.000300: agreement
002234 p.000300: 000949 p.000023: cannot be sought from children because of their age.
002235 p.000300: 000950 p.000023: When proxy consent is used agreed criteria should be provided to confirm participants fully understands to what they
002236 p.000300: 000951 p.000023: are participating, and criteria identifying signs of participants’ unwillingness to take part or wishing to terminate
002237 p.000300: 000952 p.000023: the research interaction.
002238 p.000300: 000953 p.000023:
...

...
002304 p.000300: 001297 p.000031: research into teenage sexuality or alcohol use). In such circumstances, researchers will need to regard the potential
002305 p.000300: 001298 p.000031: risk to the principal participants of the research as a priority.
002306 p.000300: 001299 p.000031:
002307 p.000300: ...
002308 p.000300: ...
002309 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
002310 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002311 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002312 p.000300: Scotland ‘A’
002313 p.000300: 001496 p.000035: REC).
...

...
002449 p.000300: 000946 p.000023: research participants is necessary, the best interests of the vulnerable person should be of the highest importance.
002450 p.000300: 000947 p.000023: Proxy consent should only be used when participants are unable toconsent themselves or where it is legally
002451 p.000300: necessary.
002452 p.000300: 000948 p.000023: Care should be taken when consent cannot be sought from the participants, and it should not be assumed that
002453 p.000300: agreement
002454 p.000300: 000949 p.000023: cannot be sought from children because of their age.
002455 p.000300: 000950 p.000023: When proxy consent is used agreed criteria should be provided to confirm participants fully understands to what they
002456 p.000300: 000951 p.000023: are participating, and criteria identifying signs of participants’ unwillingness to take part or wishing to terminate
002457 p.000300: 000952 p.000023: the research interaction.
002458 p.000300: 000953 p.000023:
...

...
002494 p.000300: 001289 p.000031: participants. Passive assent, including group assent (with consent given by a gatekeeper) should be avoided wherever
002495 p.000300: 001290 p.000031: possible, and every effort should be made to develop methods of seeking consent that are appropriate to the groups
002496 p.000300: ...
002497 p.000300:
002498 p.000300: ...
002499 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
002500 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002501 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002502 p.000300: Scotland ‘A’
002503 p.000300: 001496 p.000035: REC).
...

...
002886 p.000300: 001489 p.000035: Research that may need to be reviewed by NHS Research Ethics Committee or another external ethics committee (if
002887 p.000300: yes,
002888 p.000300: 001490 p.000035: please give brief details as an annex)
002889 p.000300: 001491 p.000035: Will the study involve recruitment of patients or staff through the NHS or the use of NHS data or premises and/or
002890 p.000300: 001492 p.000035: equipment?
002891 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
002892 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002893 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002894 p.000300: Scotland ‘A’
002895 p.000300: 001496 p.000035: REC).
...

...
004029 p.000300: Appendix
004030 p.000300: Indicator List
004031 p.000300: Indicator Vulnerability
004032 p.000300: abuse Victim of Abuse
004033 p.000300: access Access to Social Goods
004034 p.000300: age Diminished Autonomy
004035 p.000300: authority Relationship to Authority
004036 p.000300: autonomy Impaired Autonomy
004037 p.000300: cadavers Cadavers
004038 p.000300: capacity Fetus/Neonate
...

...
004152 p.000300: Economic Economic/Poverty poor
004153 p.000300: Economic Welfare Recipient welfare
004154 p.000300: General/Other Cultural Differences cultural
004155 p.000300: General/Other Cultural Differences culture
004156 p.000300: General/Other Dependent dependent
004157 p.000300: General/Other Diminished Autonomy age
004158 p.000300: General/Other Impaired Autonomy autonomy
004159 p.000300: General/Other Incapacitated incapacity
004160 p.000300: General/Other Laboratory Staff usage
004161 p.000300: General/Other Presence of Coercion coercion
...

General/Other / Impaired Autonomy

Searching for indicator autonomy:

(return to top)
...
000332 p.000300: 002119 p.000050:
000333 p.000300: 002120 p.000050:
000334 p.000300: 002121 p.000050:
000335 p.000300: ...
000336 p.000300:
000337 p.000300: General/Other / Diminished Autonomy
000338 p.000300: Searching for indicator age:
000339 p.000300:
000340 p.000300: (return to top)
000341 p.000300: ...
...

...
000367 p.000300: Scotland ‘A’
000368 p.000300: 001496 p.000035: REC).
000369 p.000300: 001497 p.000035: Research that may need a full review
000370 p.000300: ...
000371 p.000300:
000372 p.000300: General/Other / Impaired Autonomy
000373 p.000300: Searching for indicator autonomy:
000374 p.000300:
000375 p.000300: (return to top)
000376 p.000300: ...
000377 p.000300: 000128 p.000003:
000378 p.000300: 000129 p.000003: Our principles and expectations for ethical research
000379 p.000300: 000130 p.000003: There are six key principles of ethical research that we expect to be addressed:
000380 p.000300: 000131 p.000003:
000381 p.000300: 000132 p.000003: • Research participants should take part voluntarily, free from any coercion or undue influence, and their rights,
000382 p.000300: 000133 p.000003: dignity and (when possible) autonomy should be respected and appropriately protected.
000383 p.000300: 000134 p.000003:
000384 p.000300: 000135 p.000003: • Research should be worthwhile and provide value that outweighs any risk or harm. Researchers should aim to
000385 p.000300: 000136 p.000003: maximise the benefit of the research and minimise potential risk of harm to participants and researchers. All potential
000386 p.000300: 000137 p.000003: risk and harm should be mitigated by robust precautions.
...

...
000390 p.000300: 000164 p.000003:
000391 p.000300: 000165 p.000003: • ROs should have clear, transparent and effective procedures for ethics review and governance and appropriate
000392 p.000300: 000166 p.000003: mechanisms for monitoring.
000393 p.000300: 000167 p.000004: 4
000394 p.000300: 000168 p.000004:
000395 p.000300: 000169 p.000004: • Research should be designed in such a way that the dignity and (when possible) the autonomy of research
000396 p.000300: 000170 p.000004: participants is respected and appropriately protected.
000397 p.000300: 000171 p.000004:
000398 p.000300: 000172 p.000004: • Ethics review should always be proportionate to the potentialrisk. Where possible, risks should be minimised; for
000399 p.000300: 000173 p.000004: example, whether the research involves primary data collection or the re-use of existing data.
...

...
000619 p.000300: 000128 p.000003:
000620 p.000300: 000129 p.000003: Our principles and expectations for ethical research
000621 p.000300: 000130 p.000003: There are six key principles of ethical research that we expect to be addressed:
000622 p.000300: 000131 p.000003:
000623 p.000300: 000132 p.000003: • Research participants should take part voluntarily, free from any coercion or undue influence, and their rights,
000624 p.000300: 000133 p.000003: dignity and (when possible) autonomy should be respected and appropriately protected.
000625 p.000300: 000134 p.000003:
000626 p.000300: 000135 p.000003: • Research should be worthwhile and provide value that outweighs any risk or harm. Researchers should aim to
000627 p.000300: 000136 p.000003: maximise the benefit of the research and minimise potential risk of harm to participants and researchers. All potential
000628 p.000300: ...
...

...
000850 p.000300: 000128 p.000003:
000851 p.000300: 000129 p.000003: Our principles and expectations for ethical research
000852 p.000300: 000130 p.000003: There are six key principles of ethical research that we expect to be addressed:
000853 p.000300: 000131 p.000003:
000854 p.000300: 000132 p.000003: • Research participants should take part voluntarily, free from any coercion or undue influence, and their rights,
000855 p.000300: 000133 p.000003: dignity and (when possible) autonomy should be respected and appropriately protected.
000856 p.000300: 000134 p.000003:
000857 p.000300: 000135 p.000003: • Research should be worthwhile and provide value that outweighs any risk or harm. Researchers should aim to
000858 p.000300: 000136 p.000003: maximise the benefit of the research and minimise potential risk of harm to participants and researchers. All potential
000859 p.000300: ...
...

...
001102 p.000300: 000128 p.000003:
001103 p.000300: 000129 p.000003: Our principles and expectations for ethical research
001104 p.000300: 000130 p.000003: There are six key principles of ethical research that we expect to be addressed:
001105 p.000300: 000131 p.000003:
001106 p.000300: 000132 p.000003: • Research participants should take part voluntarily, free from any coercion or undue influence, and their rights,
001107 p.000300: 000133 p.000003: dignity and (when possible) autonomy should be respected and appropriately protected.
001108 p.000300: 000134 p.000003:
001109 p.000300: 000135 p.000003: • Research should be worthwhile and provide value that outweighs any risk or harm. Researchers should aim to
001110 p.000300: 000136 p.000003: maximise the benefit of the research and minimise potential risk of harm to participants and researchers. All potential
001111 p.000300: ...
...

...
004029 p.000300: Appendix
004030 p.000300: Indicator List
004031 p.000300: Indicator Vulnerability
004032 p.000300: abuse Victim of Abuse
004033 p.000300: access Access to Social Goods
004034 p.000300: age Diminished Autonomy
004035 p.000300: authority Relationship to Authority
004036 p.000300: autonomy Impaired Autonomy
004037 p.000300: cadavers Cadavers
004038 p.000300: capacity Fetus/Neonate
004039 p.000300: child Child
004040 p.000300: children Child
...

...
004152 p.000300: Economic Economic/Poverty poor
004153 p.000300: Economic Welfare Recipient welfare
004154 p.000300: General/Other Cultural Differences cultural
004155 p.000300: General/Other Cultural Differences culture
004156 p.000300: General/Other Dependent dependent
004157 p.000300: General/Other Diminished Autonomy age
004158 p.000300: General/Other Impaired Autonomy autonomy
004159 p.000300: General/Other Incapacitated incapacity
004160 p.000300: General/Other Laboratory Staff usage
004161 p.000300: General/Other Presence of Coercion coercion
004162 p.000300: General/Other Relationship to Authority authority
...

Searching for indicator diminished autonomy:

(return to top)
...
000332 p.000300: 002119 p.000050:
000333 p.000300: 002120 p.000050:
000334 p.000300: 002121 p.000050:
000335 p.000300: ...
000336 p.000300:
000337 p.000300: General/Other / Diminished Autonomy
000338 p.000300: Searching for indicator age:
000339 p.000300:
000340 p.000300: (return to top)
000341 p.000300: ...
...

...
004029 p.000300: Appendix
004030 p.000300: Indicator List
004031 p.000300: Indicator Vulnerability
004032 p.000300: abuse Victim of Abuse
004033 p.000300: access Access to Social Goods
004034 p.000300: age Diminished Autonomy
004035 p.000300: authority Relationship to Authority
004036 p.000300: autonomy Impaired Autonomy
004037 p.000300: cadavers Cadavers
004038 p.000300: capacity Fetus/Neonate
004039 p.000300: child Child
004040 p.000300: children Child
...

...
004152 p.000300: Economic Economic/Poverty poor
004153 p.000300: Economic Welfare Recipient welfare
004154 p.000300: General/Other Cultural Differences cultural
004155 p.000300: General/Other Cultural Differences culture
004156 p.000300: General/Other Dependent dependent
004157 p.000300: General/Other Diminished Autonomy age
004158 p.000300: General/Other Impaired Autonomy autonomy
004159 p.000300: General/Other Incapacitated incapacity
004160 p.000300: General/Other Laboratory Staff usage
004161 p.000300: General/Other Presence of Coercion coercion
004162 p.000300: General/Other Relationship to Authority authority
...

Searching for indicator impaired autonomy:

(return to top)
...
000367 p.000300: Scotland ‘A’
000368 p.000300: 001496 p.000035: REC).
000369 p.000300: 001497 p.000035: Research that may need a full review
000370 p.000300: ...
000371 p.000300:
000372 p.000300: General/Other / Impaired Autonomy
000373 p.000300: Searching for indicator autonomy:
000374 p.000300:
000375 p.000300: (return to top)
000376 p.000300: ...
000377 p.000300: 000128 p.000003:
...

...
004029 p.000300: Appendix
004030 p.000300: Indicator List
004031 p.000300: Indicator Vulnerability
004032 p.000300: abuse Victim of Abuse
004033 p.000300: access Access to Social Goods
004034 p.000300: age Diminished Autonomy
004035 p.000300: authority Relationship to Authority
004036 p.000300: autonomy Impaired Autonomy
004037 p.000300: cadavers Cadavers
004038 p.000300: capacity Fetus/Neonate
004039 p.000300: child Child
004040 p.000300: children Child
...

...
004152 p.000300: Economic Economic/Poverty poor
004153 p.000300: Economic Welfare Recipient welfare
004154 p.000300: General/Other Cultural Differences cultural
004155 p.000300: General/Other Cultural Differences culture
004156 p.000300: General/Other Dependent dependent
004157 p.000300: General/Other Diminished Autonomy age
004158 p.000300: General/Other Impaired Autonomy autonomy
004159 p.000300: General/Other Incapacitated incapacity
004160 p.000300: General/Other Laboratory Staff usage
004161 p.000300: General/Other Presence of Coercion coercion
004162 p.000300: General/Other Relationship to Authority authority
...

General/Other / Incapacitated

Searching for indicator incapacitated:

(return to top)
...
000397 p.000300: 000171 p.000004:
000398 p.000300: 000172 p.000004: • Ethics review should always be proportionate to the potentialrisk. Where possible, risks should be minimised; for
000399 p.000300: 000173 p.000004: example, whether the research involves primary data collection or the re-use of existing data.
000400 p.000300: ...
000401 p.000300:
000402 p.000300: General/Other / Incapacitated
000403 p.000300: Searching for indicator incapacity:
000404 p.000300:
000405 p.000300: (return to top)
000406 p.000300: ...
000407 p.000300: 000317 p.000007: • (http://www.legislation.gov.uk/ukpga/2005/9/contents ). Normally this will be a REC recognised by the Secretary of
...

...
004061 p.000300: home Property Ownership
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
004070 p.000300: minor Youth/Minors
...

...
004154 p.000300: General/Other Cultural Differences cultural
004155 p.000300: General/Other Cultural Differences culture
004156 p.000300: General/Other Dependent dependent
004157 p.000300: General/Other Diminished Autonomy age
004158 p.000300: General/Other Impaired Autonomy autonomy
004159 p.000300: General/Other Incapacitated incapacity
004160 p.000300: General/Other Laboratory Staff usage
004161 p.000300: General/Other Presence of Coercion coercion
004162 p.000300: General/Other Relationship to Authority authority
004163 p.000300: General/Other Undue Influence undue influence
...

Searching for indicator incapacity:

(return to top)
...
000162 p.000300: ...
000163 p.000300:
000164 p.000300: ...
000165 p.000300: 001329 p.000032:
000166 p.000300: 001330 p.000032: 2.3 Medical research
000167 p.000300: 001331 p.000032: The Adults with Incapacity (Scotland) Act (http://www.legislation.gov.uk/asp/2000/4/contents) states that any medical
000168 p.000300: 001332 p.000032: research or treatment should benefit the individual and such benefit will not be reasonably achieved without the
000169 p.000300: 001333 p.000032: intervention. The past and present wishes of the individual should be taken into account (by any methods of
000170 p.000300: 001334 p.000032: communication), and consent should be obtained by the closest relative or person with relevant powers (egwelfare
000171 p.000300: 001335 p.000032: attorney).
...

...
000360 p.000300: yes,
000361 p.000300: 001490 p.000035: please give brief details as an annex)
000362 p.000300: 001491 p.000035: Will the study involve recruitment of patients or staff through the NHS or the use of NHS data or premises and/or
000363 p.000300: 001492 p.000035: equipment?
000364 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
000365 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000366 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000367 p.000300: Scotland ‘A’
000368 p.000300: 001496 p.000035: REC).
000369 p.000300: 001497 p.000035: Research that may need a full review
...

...
000397 p.000300: 000171 p.000004:
000398 p.000300: 000172 p.000004: • Ethics review should always be proportionate to the potentialrisk. Where possible, risks should be minimised; for
000399 p.000300: 000173 p.000004: example, whether the research involves primary data collection or the re-use of existing data.
000400 p.000300: ...
000401 p.000300:
000402 p.000300: General/Other / Incapacitated
000403 p.000300: Searching for indicator incapacity:
000404 p.000300:
000405 p.000300: (return to top)
000406 p.000300: ...
000407 p.000300: 000317 p.000007: • (http://www.legislation.gov.uk/ukpga/2005/9/contents ). Normally this will be a REC recognised by the Secretary of
...

...
000410 p.000300: 000319 p.000007: Ethics Committees (GAfREC) (http://www.hra.nhs.uk/resources/research-legislation-and-
000411 p.000300: 000320 p.000007: governance/governance-arrangements-for-research-ethics- committees/#sthash.rH7OVRVy.dpuf). Research
000412 p.000300: conducted in
000413 p.000300: 000321 p.000007: Scotland should be reviewed by the Scotland ‘A’ REC
000414 p.000300: (http://www.nhsresearchscotland.org.uk/226_Research+Ethics.html)
000415 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
000416 p.000300: 000323 p.000008: 8
000417 p.000300: 000324 p.000008:
000418 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
000419 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
...

...
000424 p.000300: 000886 p.000021: NHS or Social Care services, and such research should be reviewed by a recognised and appropriate REC (see
000425 p.000300: Appendix D).
000426 p.000300: 000887 p.000022: 22
000427 p.000300: 000888 p.000022:
000428 p.000300: 000889 p.000022: In addition, research involving adults who come under the remit of the Mental Capacity Act 2005
000429 p.000300: 000890 p.000022: (http://www.legislation.gov.uk/ukpga/2005/9/contents) or the Adults with Incapacity (Scotland) Act 2000
000430 p.000300: 000891 p.000022: (http://www.legislation.gov.uk/asp/2000/4/contents) requires review by a recognised and appropriate REC operating
000431 p.000300: under
000432 p.000300: 000892 p.000022: the GAfREC (http://www.hra.nhs.uk/resources/research-legislation-and-governance/governance-
000433 p.000300: 000893 p.000022: arrangements-for-research-ethics-committees/) or Scotland ‘A’ REC. For a full list of the research which
...

...
000437 p.000300: 000895 p.000022: Scotland research ethics service (http://www.nhsresearchscotland.org.uk/226_Research+Ethics.html) also provide
000438 p.000300: guidance
000439 p.000300: 000896 p.000022: on the scope of the research provisions under the Mental Capacity Act 2005
000440 p.000300: 000897 p.000022: (http://www.hra.nhs.uk/resources/research-legislation-and-governance/questions-and- answers-mental-capacity-act-
000441 p.000300: 2005/)
000442 p.000300: 000898 p.000022: and Adults with Incapacity (Scotland) Act 2000 (http://www.legislation.gov.uk/asp/2000/4/contents).
000443 p.000300: 000899 p.000022:
000444 p.000300: 000900 p.000022: 1.11 Legal and data protection requirements should be met
000445 p.000300: 000901 p.000022: Data requirements
000446 p.000300: 000902 p.000022: ROs should ensure that appropriate practical arrangements are in place to maintain the integrity and security of
...

...
000451 p.000300: 001108 p.000026: ensure that potential participants have the capacity to understand the consequences (and risks) of
000452 p.000300: 001109 p.000027: 27
000453 p.000300: 001110 p.000027:
000454 p.000300: 001111 p.000027: participating in order to give valid consent. ‘Capacity’ is legally defined under the terms of the MentalCapacity
000455 p.000300: Act
000456 p.000300: 001112 p.000027: 2005 and the Adults with Incapacity (Scotland) Act 2000, and any projects that involve participants who fall under
000457 p.000300: 001113 p.000027: these Acts must be reviewed by a ‘recognised’ REC operating under the GAfREC
000458 p.000300: (http://www.ukbiobank.ac.uk/ethics/) or
000459 p.000300: 001114 p.000027: Scotland ‘A’ REC. The Mental Capacity Act 2005 applies to 16-17 year olds and adults (18 years and over)
000460 p.000300: who lack
...

...
000465 p.000300: the
000466 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
000467 p.000300: provisions for
000468 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
000469 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
000470 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
000471 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
000472 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
000473 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
000474 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
000475 p.000300: Capacity
000476 p.000300: 001126 p.000027: Act 2005 and consent for research
000477 p.000300: 001127 p.000027: (http://www.wales.gov.uk/dhss/publications/health/mentalhealth/mentalcapacityact/2117019
000478 p.000300: 001128 p.000027: /mcaconsente.pdf?lang=en) and Adults with Incapacity Act 2000- Code of Practice, Part 5
000479 p.000300: 001129 p.000027: (http://www.scotland.gov.uk/Publications/2010/10/20153801/4)).
000480 p.000300: 001130 p.000027:
000481 p.000300: 001131 p.000027: Is it legitimate to expose some research participants/organisations to risk?
000482 p.000300: 001132 p.000027: This might arise for two reasons. First, as is recognised elsewhere (see Tri-Council of Canada, 2002
...

...
000486 p.000300: 001282 p.000031: gatekeepers where necessary to undertake the research, for example from the relevant public sector organisation to
000487 p.000300: 001283 p.000031: undertake research on public sector property.
000488 p.000300: 001284 p.000031:
000489 p.000300: 001285 p.000031: How do you obtain consent from potentially vulnerable people?
000490 p.000300: 001286 p.000031: In cases where research involves potentially vulnerable groups, for example children, older persons or adults with
000491 p.000300: 001287 p.000031: learning disabilities (for those who fall under the remit of the Mental Capacity Act 2005/ Adults with Incapacity
000492 p.000300: 001288 p.000031: (Scotland) Act 2000 see below), every effort should be made to secure actively given informed consent from individual
000493 p.000300: 001289 p.000031: participants. Passive assent, including group assent (with consent given by a gatekeeper) should be avoided wherever
000494 p.000300: 001290 p.000031: possible, and every effort should be made to develop methods of seeking consent that are appropriate to the groups
000495 p.000300: 001291 p.000031: being studied, using expert advice, support and training where necessary.
...

...
000501 p.000300: 001296 p.000031: example there may be circumstances where seeking consent from parents could jeopardise the research (for
000502 p.000300: example, in
000503 p.000300: 001297 p.000031: research into teenage sexuality or alcohol use). In such circumstances, researchers will need to regard the potential
000504 p.000300: 001298 p.000031: risk to the principal participants of the research as a priority.
000505 p.000300: 001299 p.000031:
000506 p.000300: 001300 p.000031: How do you obtain consent from participants who fall under the MentalCapacity Act 2005/ Adults with Incapacity
000507 p.000300: 001301 p.000031: (Scotland) Act 2000?
000508 p.000300: 001302 p.000031: In the case of research with adults who lack capacity to make a decision under the terms of the MentalCapacity Act
000509 p.000300: 001303 p.000031: 2005 (http://www.legislation.gov.uk/ukpga/2005/9/contents) and Adults with Incapacity (Scotland) Act 2000
000510 p.000300: 001304 p.000031: (http://www.legislation.gov.uk/asp/2000/4/contents), these projects must be reviewed by a ‘recognised’ REC or
000511 p.000300: Scotland
000512 p.000300: 001305 p.000031: ‘A’ REC (Code of practice Mental Capacity Act 2005
000513 p.000300: (www.opsi.gov.uk/acts/acts2005/related/ukpgacop_20050009_en.pdf) and
000514 p.000300: 001306 p.000031: Adults with Incapacity (Scotland) Act 2000 (http://www.scotland.gov.uk/Publications/2010/10/20153801/0)).
000515 p.000300: 001307 p.000031:
000516 p.000300: 001308 p.000031: The Mental Capacity Act states that researchers should assume that a person has capacity to make a decision;
000517 p.000300: unless
000518 p.000300: 001309 p.000031: there is proof that they do not have capacity to make a specific decision, and that a potential participant must
...

...
000524 p.000300: 001327 p.000032: worker (and thus could not be a personal consultee), such as the person’s GP, social worker or carer, providing
000525 p.000300: they
000526 p.000300: 001328 p.000032: have no connection with the research project.
000527 p.000300: 001329 p.000032:
000528 p.000300: 001330 p.000032: 2.3 Medical research
000529 p.000300: 001331 p.000032: The Adults with Incapacity (Scotland) Act (http://www.legislation.gov.uk/asp/2000/4/contents) states that any medical
000530 p.000300: 001332 p.000032: research or treatment should benefit the individual and such benefit will not be reasonably achieved without the
000531 p.000300: 001333 p.000032: intervention. The past and present wishes of the individual should be taken into account (by any methods of
000532 p.000300: 001334 p.000032: communication), and consent should be obtained by the closest relative or person with relevant powers (egwelfare
000533 p.000300: 001335 p.000032: attorney).
...

...
000538 p.000300: yes,
000539 p.000300: 001490 p.000035: please give brief details as an annex)
000540 p.000300: 001491 p.000035: Will the study involve recruitment of patients or staff through the NHS or the use of NHS data or premises and/or
000541 p.000300: 001492 p.000035: equipment?
000542 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
000543 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000544 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000545 p.000300: Scotland ‘A’
000546 p.000300: 001496 p.000035: REC).
000547 p.000300: 001497 p.000035: Research that may need a full review
...

...
000553 p.000300: 001654 p.000039:
000554 p.000300: 001655 p.000039:
000555 p.000300: 001656 p.000039:
000556 p.000300: 001657 p.000039: Does the research involve NHS patients, records, equipment, premises or vulnerable people under the Mental
000557 p.000300: Capacity Act
000558 p.000300: 001658 p.000039: 2005 and Adults with Incapacity (Scotland) Act 2000?
000559 p.000300: 001659 p.000039:
000560 p.000300: 001660 p.000039:
000561 p.000300: 001661 p.000039:
000562 p.000300: 001662 p.000039:
...

...
000566 p.000300: 001816 p.000043: research), this is especially important.
000567 p.000300: 001817 p.000043:
000568 p.000300: 001818 p.000043: Valid consent: Consent is valid if it meets three conditions: participant has capacity to make a decision; the process
000569 p.000300: 001819 p.000043: is free from coercion; and the consent is informed. For consent to be ‘valid’ the participant must be capable of
000570 p.000300: 001820 p.000043: understanding all the potential risks involved. Where this may be in doubt, the Mental Capacity Act 2005 and Adults
000571 p.000300: 001821 p.000043: with Incapacity (Scotland) Act 2000 may apply (see Appendix D).
000572 p.000300: 001822 p.000043:
000573 p.000300: 001823 p.000043:
000574 p.000300: 001824 p.000043:
000575 p.000300: 001825 p.000043:
...

...
000578 p.000300: 001974 p.000047: https://www.gov.uk/government/publications/mental-capacity-act-code-of-practice
000579 p.000300: 001975 p.000047: • HRA Mental Capacity Act 2005-Questions and Answers
000580 p.000300: 001976 p.000047: www.hra.nhs.uk/resources/research-legislation-and-governance/questions-and-answers- mental-capacity-act-2005/
000581 p.000300: 001977 p.000047: • Department of Health Mental Capacity Act and consent for research
000582 p.000300: 001978 p.000047: http://wales.gov.uk/dhss/publications/health/mentalhealth/mentalcapacityact/2117019/m caconsente.pdf?lang=en
000583 p.000300: 001979 p.000047: • Adults with Incapacity (Scotland) Act 2000 www.legislation.gov.uk/asp/2000/4/section/10
000584 p.000300: 001980 p.000047: • Adults with Incapacity Act 2000: Code of practice (2010) For practitioners authorised to carry out medical
000585 p.000300: 001981 p.000047: treatment or research under Part 5 of the Act www.scotland.gov.uk/Publications/2010/10/20153801/0
000586 p.000300: 001982 p.000047: • Adults with Incapacity (Ethics Committee) Scotland Regulations 2002
000587 p.000300: 001983 p.000047: www.legislation.gov.uk/ssi/2002/190/contents/made
000588 p.000300: 001984 p.000047: • Rehabilitation of Offenders Act 1974 www.legislation.gov.uk/ukpga/1974/53
000589 p.000300: 001985 p.000047: • Rehabilitation of Offenders Act 1974 (Exceptions Order 1975)
000590 p.000300: www.legislation.gov.uk/uksi/2013/1198/contents/made
...

...
000692 p.000300: 001816 p.000043: research), this is especially important.
000693 p.000300: 001817 p.000043:
000694 p.000300: 001818 p.000043: Valid consent: Consent is valid if it meets three conditions: participant has capacity to make a decision; the process
000695 p.000300: 001819 p.000043: is free from coercion; and the consent is informed. For consent to be ‘valid’ the participant must be capable of
000696 p.000300: 001820 p.000043: understanding all the potential risks involved. Where this may be in doubt, the Mental Capacity Act 2005 and Adults
000697 p.000300: 001821 p.000043: with Incapacity (Scotland) Act 2000 may apply (see Appendix D).
000698 p.000300: 001822 p.000043:
000699 p.000300: 001823 p.000043:
000700 p.000300: ...
000701 p.000300:
...

...
000728 p.000300: 000319 p.000007: Ethics Committees (GAfREC) (http://www.hra.nhs.uk/resources/research-legislation-and-
000729 p.000300: 000320 p.000007: governance/governance-arrangements-for-research-ethics- committees/#sthash.rH7OVRVy.dpuf). Research
000730 p.000300: conducted in
000731 p.000300: 000321 p.000007: Scotland should be reviewed by the Scotland ‘A’ REC
000732 p.000300: (http://www.nhsresearchscotland.org.uk/226_Research+Ethics.html)
000733 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
000734 p.000300: ...
000735 p.000300:
000736 p.000300: ...
000737 p.000300: 000490 p.000012: applications per se. Wherever they are located, RECs should meet the requirements of this FRE, even at department
...

...
000925 p.000300: 000316 p.000007:
000926 p.000300: ...
000927 p.000300:
000928 p.000300: ...
000929 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
000930 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000931 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000932 p.000300: Scotland ‘A’
000933 p.000300: 001496 p.000035: REC).
000934 p.000300: 001497 p.000035: Research that may need a full review
...

...
000956 p.000300: 000316 p.000007:
000957 p.000300: ...
000958 p.000300:
000959 p.000300: ...
000960 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
000961 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000962 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000963 p.000300: Scotland ‘A’
000964 p.000300: 001496 p.000035: REC).
000965 p.000300: 001497 p.000035: Research that may need a full review
...

...
000979 p.000300: the
000980 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
000981 p.000300: provisions for
000982 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
000983 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
000984 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
000985 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
000986 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
000987 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
000988 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
000989 p.000300: Capacity
000990 p.000300: ...
000991 p.000300:
...

...
001008 p.000300:
001009 p.000300: ...
001010 p.000300: 001110 p.000027:
001011 p.000300: 001111 p.000027: participating in order to give valid consent. ‘Capacity’ is legally defined under the terms of the MentalCapacity
001012 p.000300: Act
001013 p.000300: 001112 p.000027: 2005 and the Adults with Incapacity (Scotland) Act 2000, and any projects that involve participants who fall under
001014 p.000300: 001113 p.000027: these Acts must be reviewed by a ‘recognised’ REC operating under the GAfREC
001015 p.000300: (http://www.ukbiobank.ac.uk/ethics/) or
001016 p.000300: 001114 p.000027: Scotland ‘A’ REC. The Mental Capacity Act 2005 applies to 16-17 year olds and adults (18 years and over)
001017 p.000300: who lack
...

...
001025 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
001026 p.000300: ...
001027 p.000300:
001028 p.000300: ...
001029 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
001030 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
001031 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
001032 p.000300: Scotland ‘A’
001033 p.000300: 001496 p.000035: REC).
001034 p.000300: 001497 p.000035: Research that may need a full review
...

...
001061 p.000300: Health / Drug Usage
001062 p.000300: Searching for indicator drug:
001063 p.000300:
001064 p.000300: (return to top)
001065 p.000300: ...
001066 p.000300: 001112 p.000027: 2005 and the Adults with Incapacity (Scotland) Act 2000, and any projects that involve participants who fall under
001067 p.000300: 001113 p.000027: these Acts must be reviewed by a ‘recognised’ REC operating under the GAfREC
001068 p.000300: (http://www.ukbiobank.ac.uk/ethics/) or
001069 p.000300: 001114 p.000027: Scotland ‘A’ REC. The Mental Capacity Act 2005 applies to 16-17 year olds and adults (18 years and over)
001070 p.000300: who lack
...

...
001075 p.000300: the
001076 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
001077 p.000300: provisions for
001078 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
001079 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
001080 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
001081 p.000300: ...
001082 p.000300:
001083 p.000300: ...
001084 p.000300: 001502 p.000036:
...

...
001175 p.000300: 000319 p.000007: Ethics Committees (GAfREC) (http://www.hra.nhs.uk/resources/research-legislation-and-
001176 p.000300: 000320 p.000007: governance/governance-arrangements-for-research-ethics- committees/#sthash.rH7OVRVy.dpuf). Research
001177 p.000300: conducted in
001178 p.000300: 000321 p.000007: Scotland should be reviewed by the Scotland ‘A’ REC
001179 p.000300: (http://www.nhsresearchscotland.org.uk/226_Research+Ethics.html)
001180 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001181 p.000300: 000323 p.000008: 8
001182 p.000300: 000324 p.000008:
001183 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001184 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
...

...
001281 p.000300: research
001282 p.000300: ...
001283 p.000300:
001284 p.000300: ...
001285 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
001286 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
001287 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
001288 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
001289 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
001290 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
001291 p.000300: Capacity
001292 p.000300: 001126 p.000027: Act 2005 and consent for research
001293 p.000300: 001127 p.000027: (http://www.wales.gov.uk/dhss/publications/health/mentalhealth/mentalcapacityact/2117019
001294 p.000300: 001128 p.000027: /mcaconsente.pdf?lang=en) and Adults with Incapacity Act 2000- Code of Practice, Part 5
001295 p.000300: 001129 p.000027: (http://www.scotland.gov.uk/Publications/2010/10/20153801/4)).
001296 p.000300: 001130 p.000027:
001297 p.000300: 001131 p.000027: Is it legitimate to expose some research participants/organisations to risk?
001298 p.000300: ...
...

...
001400 p.000300: 001974 p.000047: https://www.gov.uk/government/publications/mental-capacity-act-code-of-practice
001401 p.000300: 001975 p.000047: • HRA Mental Capacity Act 2005-Questions and Answers
001402 p.000300: 001976 p.000047: www.hra.nhs.uk/resources/research-legislation-and-governance/questions-and-answers- mental-capacity-act-2005/
001403 p.000300: 001977 p.000047: • Department of Health Mental Capacity Act and consent for research
001404 p.000300: 001978 p.000047: http://wales.gov.uk/dhss/publications/health/mentalhealth/mentalcapacityact/2117019/m caconsente.pdf?lang=en
001405 p.000300: 001979 p.000047: • Adults with Incapacity (Scotland) Act 2000 www.legislation.gov.uk/asp/2000/4/section/10
001406 p.000300: 001980 p.000047: • Adults with Incapacity Act 2000: Code of practice (2010) For practitioners authorised to carry out medical
001407 p.000300: 001981 p.000047: treatment or research under Part 5 of the Act www.scotland.gov.uk/Publications/2010/10/20153801/0
001408 p.000300: 001982 p.000047: • Adults with Incapacity (Ethics Committee) Scotland Regulations 2002
001409 p.000300: ...
001410 p.000300:
001411 p.000300: Health / Mentally Disabled
001412 p.000300: Searching for indicator disability:
...

...
001429 p.000300: Health / Motherhood/Family
001430 p.000300: Searching for indicator family:
001431 p.000300:
001432 p.000300: (return to top)
001433 p.000300: ...
001434 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001435 p.000300: 000323 p.000008: 8
001436 p.000300: 000324 p.000008:
001437 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001438 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
...

...
001499 p.000300: the
001500 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
001501 p.000300: provisions for
001502 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
001503 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
001504 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
001505 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
001506 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
001507 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
001508 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
001509 p.000300: Capacity
001510 p.000300: 001126 p.000027: Act 2005 and consent for research
001511 p.000300: ...
...

...
001514 p.000300:
001515 p.000300: (return to top)
001516 p.000300: ...
001517 p.000300: 000321 p.000007: Scotland should be reviewed by the Scotland ‘A’ REC
001518 p.000300: (http://www.nhsresearchscotland.org.uk/226_Research+Ethics.html)
001519 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001520 p.000300: 000323 p.000008: 8
001521 p.000300: 000324 p.000008:
001522 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001523 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
...

...
001607 p.000300:
001608 p.000300: (return to top)
001609 p.000300: ...
001610 p.000300: 000321 p.000007: Scotland should be reviewed by the Scotland ‘A’ REC
001611 p.000300: (http://www.nhsresearchscotland.org.uk/226_Research+Ethics.html)
001612 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001613 p.000300: 000323 p.000008: 8
001614 p.000300: 000324 p.000008:
001615 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001616 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
...

...
002285 p.000300: 001282 p.000031: gatekeepers where necessary to undertake the research, for example from the relevant public sector organisation to
002286 p.000300: 001283 p.000031: undertake research on public sector property.
002287 p.000300: 001284 p.000031:
002288 p.000300: 001285 p.000031: How do you obtain consent from potentially vulnerable people?
002289 p.000300: 001286 p.000031: In cases where research involves potentially vulnerable groups, for example children, older persons or adults with
002290 p.000300: 001287 p.000031: learning disabilities (for those who fall under the remit of the Mental Capacity Act 2005/ Adults with Incapacity
002291 p.000300: 001288 p.000031: (Scotland) Act 2000 see below), every effort should be made to secure actively given informed consent from individual
002292 p.000300: 001289 p.000031: participants. Passive assent, including group assent (with consent given by a gatekeeper) should be avoided wherever
002293 p.000300: 001290 p.000031: possible, and every effort should be made to develop methods of seeking consent that are appropriate to the groups
002294 p.000300: 001291 p.000031: being studied, using expert advice, support and training where necessary.
...

...
002305 p.000300: 001298 p.000031: risk to the principal participants of the research as a priority.
002306 p.000300: 001299 p.000031:
002307 p.000300: ...
002308 p.000300: ...
002309 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
002310 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002311 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002312 p.000300: Scotland ‘A’
002313 p.000300: 001496 p.000035: REC).
002314 p.000300: 001497 p.000035: Research that may need a full review
...

...
002487 p.000300: 001282 p.000031: gatekeepers where necessary to undertake the research, for example from the relevant public sector organisation to
002488 p.000300: 001283 p.000031: undertake research on public sector property.
002489 p.000300: 001284 p.000031:
002490 p.000300: 001285 p.000031: How do you obtain consent from potentially vulnerable people?
002491 p.000300: 001286 p.000031: In cases where research involves potentially vulnerable groups, for example children, older persons or adults with
002492 p.000300: 001287 p.000031: learning disabilities (for those who fall under the remit of the Mental Capacity Act 2005/ Adults with Incapacity
002493 p.000300: 001288 p.000031: (Scotland) Act 2000 see below), every effort should be made to secure actively given informed consent from individual
002494 p.000300: 001289 p.000031: participants. Passive assent, including group assent (with consent given by a gatekeeper) should be avoided wherever
002495 p.000300: 001290 p.000031: possible, and every effort should be made to develop methods of seeking consent that are appropriate to the groups
002496 p.000300: ...
002497 p.000300:
002498 p.000300: ...
002499 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
002500 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002501 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002502 p.000300: Scotland ‘A’
002503 p.000300: 001496 p.000035: REC).
002504 p.000300: 001497 p.000035: Research that may need a full review
...

...
002531 p.000300: 001654 p.000039:
002532 p.000300: 001655 p.000039:
002533 p.000300: 001656 p.000039:
002534 p.000300: 001657 p.000039: Does the research involve NHS patients, records, equipment, premises or vulnerable people under the Mental
002535 p.000300: Capacity Act
002536 p.000300: 001658 p.000039: 2005 and Adults with Incapacity (Scotland) Act 2000?
002537 p.000300: 001659 p.000039:
002538 p.000300: 001660 p.000039:
002539 p.000300: 001661 p.000039:
002540 p.000300: ...
...

...
002655 p.000300: Social / Ethnicity
002656 p.000300: Searching for indicator ethnic:
002657 p.000300:
002658 p.000300: (return to top)
002659 p.000300: ...
002660 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
002661 p.000300: 000323 p.000008: 8
002662 p.000300: 000324 p.000008:
002663 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
002664 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
...

...
002770 p.000300: 000886 p.000021: NHS or Social Care services, and such research should be reviewed by a recognised and appropriate REC (see
002771 p.000300: Appendix D).
002772 p.000300: 000887 p.000022: 22
002773 p.000300: 000888 p.000022:
002774 p.000300: 000889 p.000022: In addition, research involving adults who come under the remit of the Mental Capacity Act 2005
002775 p.000300: 000890 p.000022: (http://www.legislation.gov.uk/ukpga/2005/9/contents) or the Adults with Incapacity (Scotland) Act 2000
002776 p.000300: 000891 p.000022: (http://www.legislation.gov.uk/asp/2000/4/contents) requires review by a recognised and appropriate REC operating
002777 p.000300: under
002778 p.000300: 000892 p.000022: the GAfREC (http://www.hra.nhs.uk/resources/research-legislation-and-governance/governance-
002779 p.000300: 000893 p.000022: arrangements-for-research-ethics-committees/) or Scotland ‘A’ REC. For a full list of the research which
...

...
002783 p.000300: 000895 p.000022: Scotland research ethics service (http://www.nhsresearchscotland.org.uk/226_Research+Ethics.html) also provide
002784 p.000300: guidance
002785 p.000300: 000896 p.000022: on the scope of the research provisions under the Mental Capacity Act 2005
002786 p.000300: 000897 p.000022: (http://www.hra.nhs.uk/resources/research-legislation-and-governance/questions-and- answers-mental-capacity-act-
002787 p.000300: 2005/)
002788 p.000300: 000898 p.000022: and Adults with Incapacity (Scotland) Act 2000 (http://www.legislation.gov.uk/asp/2000/4/contents).
002789 p.000300: 000899 p.000022:
002790 p.000300: 000900 p.000022: 1.11 Legal and data protection requirements should be met
002791 p.000300: 000901 p.000022: Data requirements
002792 p.000300: ...
...

...
002800 p.000300: 001108 p.000026: ensure that potential participants have the capacity to understand the consequences (and risks) of
002801 p.000300: 001109 p.000027: 27
002802 p.000300: 001110 p.000027:
002803 p.000300: 001111 p.000027: participating in order to give valid consent. ‘Capacity’ is legally defined under the terms of the MentalCapacity
002804 p.000300: Act
002805 p.000300: 001112 p.000027: 2005 and the Adults with Incapacity (Scotland) Act 2000, and any projects that involve participants who fall under
002806 p.000300: 001113 p.000027: these Acts must be reviewed by a ‘recognised’ REC operating under the GAfREC
002807 p.000300: (http://www.ukbiobank.ac.uk/ethics/) or
002808 p.000300: 001114 p.000027: Scotland ‘A’ REC. The Mental Capacity Act 2005 applies to 16-17 year olds and adults (18 years and over)
002809 p.000300: who lack
...

...
002814 p.000300: the
002815 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
002816 p.000300: provisions for
002817 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
002818 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
002819 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
002820 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
002821 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
002822 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
002823 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
002824 p.000300: Capacity
002825 p.000300: 001126 p.000027: Act 2005 and consent for research
002826 p.000300: 001127 p.000027: (http://www.wales.gov.uk/dhss/publications/health/mentalhealth/mentalcapacityact/2117019
002827 p.000300: 001128 p.000027: /mcaconsente.pdf?lang=en) and Adults with Incapacity Act 2000- Code of Practice, Part 5
002828 p.000300: 001129 p.000027: (http://www.scotland.gov.uk/Publications/2010/10/20153801/4)).
002829 p.000300: ...
002830 p.000300:
002831 p.000300: ...
002832 p.000300: 001282 p.000031: gatekeepers where necessary to undertake the research, for example from the relevant public sector organisation to
002833 p.000300: 001283 p.000031: undertake research on public sector property.
002834 p.000300: 001284 p.000031:
002835 p.000300: 001285 p.000031: How do you obtain consent from potentially vulnerable people?
002836 p.000300: 001286 p.000031: In cases where research involves potentially vulnerable groups, for example children, older persons or adults with
002837 p.000300: 001287 p.000031: learning disabilities (for those who fall under the remit of the Mental Capacity Act 2005/ Adults with Incapacity
002838 p.000300: 001288 p.000031: (Scotland) Act 2000 see below), every effort should be made to secure actively given informed consent from individual
002839 p.000300: 001289 p.000031: participants. Passive assent, including group assent (with consent given by a gatekeeper) should be avoided wherever
002840 p.000300: 001290 p.000031: possible, and every effort should be made to develop methods of seeking consent that are appropriate to the groups
002841 p.000300: 001291 p.000031: being studied, using expert advice, support and training where necessary.
...

...
002847 p.000300: 001296 p.000031: example there may be circumstances where seeking consent from parents could jeopardise the research (for
002848 p.000300: example, in
002849 p.000300: 001297 p.000031: research into teenage sexuality or alcohol use). In such circumstances, researchers will need to regard the potential
002850 p.000300: 001298 p.000031: risk to the principal participants of the research as a priority.
002851 p.000300: 001299 p.000031:
002852 p.000300: 001300 p.000031: How do you obtain consent from participants who fall under the MentalCapacity Act 2005/ Adults with Incapacity
002853 p.000300: 001301 p.000031: (Scotland) Act 2000?
002854 p.000300: 001302 p.000031: In the case of research with adults who lack capacity to make a decision under the terms of the MentalCapacity Act
002855 p.000300: 001303 p.000031: 2005 (http://www.legislation.gov.uk/ukpga/2005/9/contents) and Adults with Incapacity (Scotland) Act 2000
002856 p.000300: 001304 p.000031: (http://www.legislation.gov.uk/asp/2000/4/contents), these projects must be reviewed by a ‘recognised’ REC or
002857 p.000300: Scotland
002858 p.000300: 001305 p.000031: ‘A’ REC (Code of practice Mental Capacity Act 2005
002859 p.000300: (www.opsi.gov.uk/acts/acts2005/related/ukpgacop_20050009_en.pdf) and
002860 p.000300: 001306 p.000031: Adults with Incapacity (Scotland) Act 2000 (http://www.scotland.gov.uk/Publications/2010/10/20153801/0)).
002861 p.000300: 001307 p.000031:
002862 p.000300: 001308 p.000031: The Mental Capacity Act states that researchers should assume that a person has capacity to make a decision;
002863 p.000300: unless
002864 p.000300: 001309 p.000031: there is proof that they do not have capacity to make a specific decision, and that a potential participant must
...

...
002887 p.000300: yes,
002888 p.000300: 001490 p.000035: please give brief details as an annex)
002889 p.000300: 001491 p.000035: Will the study involve recruitment of patients or staff through the NHS or the use of NHS data or premises and/or
002890 p.000300: 001492 p.000035: equipment?
002891 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
002892 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002893 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002894 p.000300: Scotland ‘A’
002895 p.000300: 001496 p.000035: REC).
002896 p.000300: 001497 p.000035: Research that may need a full review
...

...
002916 p.000300: 001654 p.000039:
002917 p.000300: 001655 p.000039:
002918 p.000300: 001656 p.000039:
002919 p.000300: 001657 p.000039: Does the research involve NHS patients, records, equipment, premises or vulnerable people under the Mental
002920 p.000300: Capacity Act
002921 p.000300: 001658 p.000039: 2005 and Adults with Incapacity (Scotland) Act 2000?
002922 p.000300: 001659 p.000039:
002923 p.000300: 001660 p.000039:
002924 p.000300: 001661 p.000039:
002925 p.000300: ...
...

...
002931 p.000300: 001816 p.000043: research), this is especially important.
002932 p.000300: 001817 p.000043:
002933 p.000300: 001818 p.000043: Valid consent: Consent is valid if it meets three conditions: participant has capacity to make a decision; the process
002934 p.000300: 001819 p.000043: is free from coercion; and the consent is informed. For consent to be ‘valid’ the participant must be capable of
002935 p.000300: 001820 p.000043: understanding all the potential risks involved. Where this may be in doubt, the Mental Capacity Act 2005 and Adults
002936 p.000300: 001821 p.000043: with Incapacity (Scotland) Act 2000 may apply (see Appendix D).
002937 p.000300: 001822 p.000043:
002938 p.000300: 001823 p.000043:
002939 p.000300: 001824 p.000043:
002940 p.000300: ...
...

...
002951 p.000300: 001974 p.000047: https://www.gov.uk/government/publications/mental-capacity-act-code-of-practice
002952 p.000300: 001975 p.000047: • HRA Mental Capacity Act 2005-Questions and Answers
002953 p.000300: 001976 p.000047: www.hra.nhs.uk/resources/research-legislation-and-governance/questions-and-answers- mental-capacity-act-2005/
002954 p.000300: 001977 p.000047: • Department of Health Mental Capacity Act and consent for research
002955 p.000300: 001978 p.000047: http://wales.gov.uk/dhss/publications/health/mentalhealth/mentalcapacityact/2117019/m caconsente.pdf?lang=en
002956 p.000300: 001979 p.000047: • Adults with Incapacity (Scotland) Act 2000 www.legislation.gov.uk/asp/2000/4/section/10
002957 p.000300: 001980 p.000047: • Adults with Incapacity Act 2000: Code of practice (2010) For practitioners authorised to carry out medical
002958 p.000300: 001981 p.000047: treatment or research under Part 5 of the Act www.scotland.gov.uk/Publications/2010/10/20153801/0
002959 p.000300: ...
002960 p.000300: Social / Gender
002961 p.000300: Searching for indicator gender:
002962 p.000300:
002963 p.000300: (return to top)
002964 p.000300: ...
002965 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
002966 p.000300: 000323 p.000008: 8
002967 p.000300: 000324 p.000008:
002968 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
002969 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
...

...
003485 p.000300: 000886 p.000021: NHS or Social Care services, and such research should be reviewed by a recognised and appropriate REC (see
003486 p.000300: Appendix D).
003487 p.000300: 000887 p.000022: 22
003488 p.000300: 000888 p.000022:
003489 p.000300: 000889 p.000022: In addition, research involving adults who come under the remit of the Mental Capacity Act 2005
003490 p.000300: 000890 p.000022: (http://www.legislation.gov.uk/ukpga/2005/9/contents) or the Adults with Incapacity (Scotland) Act 2000
003491 p.000300: ...
003492 p.000300:
003493 p.000300: ...
003494 p.000300: 000910 p.000022: ROs should be aware of the limits of the original consent given by participants. Transferring personal data to others
...

...
003655 p.000300: 001327 p.000032: worker (and thus could not be a personal consultee), such as the person’s GP, social worker or carer, providing
003656 p.000300: they
003657 p.000300: 001328 p.000032: have no connection with the research project.
003658 p.000300: 001329 p.000032:
003659 p.000300: 001330 p.000032: 2.3 Medical research
003660 p.000300: 001331 p.000032: The Adults with Incapacity (Scotland) Act (http://www.legislation.gov.uk/asp/2000/4/contents) states that any medical
003661 p.000300: ...
003662 p.000300:
003663 p.000300: ...
003664 p.000300: 001359 p.000033:
...

...
003958 p.000300: Social / Threat of Violence
003959 p.000300: Searching for indicator violence:
003960 p.000300:
003961 p.000300: (return to top)
003962 p.000300: ...
003963 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
003964 p.000300: 000323 p.000008: 8
003965 p.000300: 000324 p.000008:
003966 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003967 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
...

...
003975 p.000300: Social / Victim of Abuse
003976 p.000300: Searching for indicator abuse:
003977 p.000300:
003978 p.000300: (return to top)
003979 p.000300: ...
003980 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
003981 p.000300: 000323 p.000008: 8
003982 p.000300: 000324 p.000008:
003983 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003984 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
...

...
004061 p.000300: home Property Ownership
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
004070 p.000300: minor Youth/Minors
...

...
004154 p.000300: General/Other Cultural Differences cultural
004155 p.000300: General/Other Cultural Differences culture
004156 p.000300: General/Other Dependent dependent
004157 p.000300: General/Other Diminished Autonomy age
004158 p.000300: General/Other Impaired Autonomy autonomy
004159 p.000300: General/Other Incapacitated incapacity
004160 p.000300: General/Other Laboratory Staff usage
004161 p.000300: General/Other Presence of Coercion coercion
004162 p.000300: General/Other Relationship to Authority authority
004163 p.000300: General/Other Undue Influence undue influence
...

General/Other / Laboratory Staff

Searching for indicator usage:

(return to top)
...
000590 p.000300: www.legislation.gov.uk/uksi/2013/1198/contents/made
000591 p.000300: 001986 p.000047: • The Rehabilitation of Offenders Act 1974 (Exceptions) Order 1975 (Amendment) (England and Wales) Order 2013.
000592 p.000300: ...
000593 p.000300:
000594 p.000300: General/Other / Laboratory Staff
000595 p.000300: Searching for indicator usage:
000596 p.000300:
000597 p.000300: (return to top)
000598 p.000300: ...
000599 p.000300: 001704 p.000040: framework is ethics review of each specific research project by an independentethics committee as well as strategies
000600 p.000300: 001705 p.000040: to update regularly the biobank donor and ongoing withdrawal opportunities. If anything in the framework changes, the
000601 p.000300: 001706 p.000040: participant should re-consent.
000602 p.000300: 001707 p.000040:
000603 p.000300: 001708 p.000040: Controlled data: are data which may be identifiable and thus potentially disclosive but to which access may be granted
000604 p.000300: 001709 p.000040: to users who have been accredited and their data usage has been approved by a relevant Data Access Committee.
000605 p.000300: Data
000606 p.000300: 001710 p.000040: service providers may provide details of their policies regarding access to controlled data, for example the UK Data
000607 p.000300: 001711 p.000040: Service (http://ukdataservice.ac.uk/get-data/data-access-policy/controlled-data.aspx).
000608 p.000300: 001712 p.000040:
...

...
001056 p.000300: 000302 p.000007: disciplinary bodies and ROs to determine whether their project should be subject to a light-touch or full review.
001057 p.000300: 000303 p.000007: However, the REC is expected to ensure that the appropriate ethics review is undertaken. The following section
001058 p.000300: provides
001059 p.000300: ...
001060 p.000300:
001061 p.000300: Health / Drug Usage
001062 p.000300: Searching for indicator drug:
001063 p.000300:
001064 p.000300: (return to top)
001065 p.000300: ...
...

...
002002 p.000300: 001704 p.000040: framework is ethics review of each specific research project by an independentethics committee as well as strategies
002003 p.000300: 001705 p.000040: to update regularly the biobank donor and ongoing withdrawal opportunities. If anything in the framework changes, the
002004 p.000300: 001706 p.000040: participant should re-consent.
002005 p.000300: 001707 p.000040:
002006 p.000300: 001708 p.000040: Controlled data: are data which may be identifiable and thus potentially disclosive but to which access may be granted
002007 p.000300: 001709 p.000040: to users who have been accredited and their data usage has been approved by a relevant Data Access Committee.
002008 p.000300: Data
002009 p.000300: 001710 p.000040: service providers may provide details of their policies regarding access to controlled data, for example the UK Data
002010 p.000300: 001711 p.000040: Service (http://ukdataservice.ac.uk/get-data/data-access-policy/controlled-data.aspx).
002011 p.000300: 001712 p.000040:
...

...
004045 p.000300: culture Cultural Differences
004046 p.000300: deceased Linguistic Proficiency
004047 p.000300: dependence Drug Dependence
004048 p.000300: dependent Dependent
004049 p.000300: disability Mentally Disabled
004050 p.000300: drug Drug Usage
004051 p.000300: economic Economic/Poverty
004052 p.000300: education Educational
004053 p.000300: educational Educational
004054 p.000300: elderly Elderly
...

...
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
004070 p.000300: minor Youth/Minors
004071 p.000300: nursing home In Nursing Home
...

...
004086 p.000300: special Religion
004087 p.000300: student Student
004088 p.000300: threat Threat of Stigma
004089 p.000300: undue influence Undue Influence
004090 p.000300: union Trade Union Membership
004091 p.000300: usage Laboratory Staff
004092 p.000300: violence Threat of Violence
004093 p.000300: vulnerable Child
004094 p.000300: welfare Welfare Recipient
004095 p.000300: women Women
...

...
004155 p.000300: General/Other Cultural Differences culture
004156 p.000300: General/Other Dependent dependent
004157 p.000300: General/Other Diminished Autonomy age
004158 p.000300: General/Other Impaired Autonomy autonomy
004159 p.000300: General/Other Incapacitated incapacity
004160 p.000300: General/Other Laboratory Staff usage
004161 p.000300: General/Other Presence of Coercion coercion
004162 p.000300: General/Other Relationship to Authority authority
004163 p.000300: General/Other Undue Influence undue influence
004164 p.000300: Health Cadavers cadavers
004165 p.000300: Health Cognitive Impairment cognitive
004166 p.000300: Health Cognitive Impairment cognitive impairment
004167 p.000300: Health Cognitive Impairment impaired
004168 p.000300: Health Cognitive Impairment impairment
004169 p.000300: Health Drug Dependence dependence
004170 p.000300: Health Drug Usage drug
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
004174 p.000300: Health Mentally Disabled disability
004175 p.000300: Health Motherhood/Family family
...

General/Other / Other Country

Searching for indicator vulnerability:

(return to top)
...
000005 p.000300: This file was generated: 2020-02-01 15:37:44
000006 p.000300:
000007 p.000300: Trigger
000008 p.000300: Indicators in focus are Peer Indicators (that share the same "Outside" Indicators (those that do NOT share
000009 p.000300: Words/Phrases are
000010 p.000300: typically shown Vulnerability association) are shown the same Vulnerability association) are shown
000011 p.000300: shown highlighted in
000012 p.000300: highlighted in yellow; highlighted in pink; highlighted in green;
000013 p.000300: gray.
000014 p.000300:
000015 p.000300: Link to Appendix (Indicator List, Indicator Peers, Trigger Words, Type/Vulnerability/Indicator Overlay, Document Map)
000016 p.000300:
000017 p.000300:
000018 p.000300: Economic / Economic/Poverty
000019 p.000300: Searching for indicator economic:
...

...
004026 p.000300: 000222 p.000005:
004027 p.000300: 000223 p.000005: • The ESRC’s guidance and information for ESRC-funded students
004028 p.000300: ...
004029 p.000300: Appendix
004030 p.000300: Indicator List
004031 p.000300: Indicator Vulnerability
004032 p.000300: abuse Victim of Abuse
004033 p.000300: access Access to Social Goods
004034 p.000300: age Diminished Autonomy
004035 p.000300: authority Relationship to Authority
...

...
004142 p.000300: sensitive
004143 p.000300:
004144 p.000300: vulnerable
004145 p.000300:
004146 p.000300:
004147 p.000300: Applicable Type / Vulnerability / Indicator Overlay for this Input
004148 p.000300: Vulnerability
004149 p.000300: Vulnerability Indicator
004150 p.000300: Type
004151 p.000300: Economic Economic/Poverty economic
004152 p.000300: Economic Economic/Poverty poor
004153 p.000300: Economic Welfare Recipient welfare
...

General/Other / Presence of Coercion

Searching for indicator coercion:

(return to top)
...
000376 p.000300: ...
000377 p.000300: 000128 p.000003:
000378 p.000300: 000129 p.000003: Our principles and expectations for ethical research
000379 p.000300: 000130 p.000003: There are six key principles of ethical research that we expect to be addressed:
000380 p.000300: 000131 p.000003:
000381 p.000300: 000132 p.000003: • Research participants should take part voluntarily, free from any coercion or undue influence, and their rights,
000382 p.000300: 000133 p.000003: dignity and (when possible) autonomy should be respected and appropriately protected.
000383 p.000300: 000134 p.000003:
000384 p.000300: 000135 p.000003: • Research should be worthwhile and provide value that outweighs any risk or harm. Researchers should aim to
000385 p.000300: 000136 p.000003: maximise the benefit of the research and minimise potential risk of harm to participants and researchers. All potential
...

...
000564 p.000300:
000565 p.000300: ...
000566 p.000300: 001816 p.000043: research), this is especially important.
000567 p.000300: 001817 p.000043:
000568 p.000300: 001818 p.000043: Valid consent: Consent is valid if it meets three conditions: participant has capacity to make a decision; the process
000569 p.000300: 001819 p.000043: is free from coercion; and the consent is informed. For consent to be ‘valid’ the participant must be capable of
000570 p.000300: 001820 p.000043: understanding all the potential risks involved. Where this may be in doubt, the Mental Capacity Act 2005 and Adults
000571 p.000300: 001821 p.000043: with Incapacity (Scotland) Act 2000 may apply (see Appendix D).
000572 p.000300: 001822 p.000043:
000573 p.000300: 001823 p.000043:
...

...
000608 p.000300: 001712 p.000040:
000609 p.000300: 001713 p.000040: Data Custodian (Data Controller): is a person who determines the purposes for which and manner in which any
000610 p.000300: personal
000611 p.000300: ...
000612 p.000300:
000613 p.000300: General/Other / Presence of Coercion
000614 p.000300: Searching for indicator coercion:
000615 p.000300:
000616 p.000300: (return to top)
000617 p.000300: ...
000618 p.000300: 000127 p.000003: 3
000619 p.000300: 000128 p.000003:
000620 p.000300: 000129 p.000003: Our principles and expectations for ethical research
000621 p.000300: 000130 p.000003: There are six key principles of ethical research that we expect to be addressed:
000622 p.000300: 000131 p.000003:
000623 p.000300: 000132 p.000003: • Research participants should take part voluntarily, free from any coercion or undue influence, and their rights,
000624 p.000300: 000133 p.000003: dignity and (when possible) autonomy should be respected and appropriately protected.
000625 p.000300: 000134 p.000003:
000626 p.000300: 000135 p.000003: • Research should be worthwhile and provide value that outweighs any risk or harm. Researchers should aim to
000627 p.000300: 000136 p.000003: maximise the benefit of the research and minimise potential risk of harm to participants and researchers. All potential
...

...
000631 p.000300: 001178 p.000028: should be particularly careful in publishing and using information about third parties.
000632 p.000300: 001179 p.000028:
000633 p.000300: 001180 p.000028: 2.2 Consent
000634 p.000300: 001181 p.000028: What is informed consent?
000635 p.000300: 001182 p.000028: Informed consent entails giving sufficient information about the research and ensuring that there is no explicit or
000636 p.000300: 001183 p.000028: implicit coercion (see below) so that prospective participants can make an informed and free decision on their possible
000637 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
000638 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
000639 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
000640 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
...

...
000644 p.000300: 001209 p.000029:
000645 p.000300: 001210 p.000029: In some areas of research, particularly in facilitating biobank research, participants are asked to provide broad
000646 p.000300: 001211 p.000029: consent. This approach means that participants consent to a framework for future research of certain types, not just to
000647 p.000300: 001212 p.000029: consent for a particular project.
000648 p.000300: 001213 p.000029:
000649 p.000300: 001214 p.000029: What does it mean that research participants should participate voluntarily, free from any coercion?
000650 p.000300: 001215 p.000029: In all cases of research, researchers should inform participants of their right to refuse to participate or withdraw
000651 p.000300: 001216 p.000029: from the investigation whenever and for whatever reason they wish. There should be no coercion or undue influence
000652 p.000300: of
000653 p.000300: 001217 p.000029: research participants to take part in the research.
000654 p.000300: 001218 p.000029:
000655 p.000300: 001219 p.000029: Research participants, however, may be given small monetary reimbursement for their time and expenses involved.
...

...
000662 p.000300: 001227 p.000029: (https://www.mrs.org.uk/standards/downloads/2008-01-
000663 p.000300: 001228 p.000029: 18%20Incentives%20and%20Free%20Prize%20Draws.pdf?SESSID=hbt5j57mhnb2vrs0pfsrs2 hma0) has published
000664 p.000300: useful guidelines on
000665 p.000300: 001229 p.000029: using free prize draws. Where children are involved, it is often appropriate to acknowledge their help with personal
000666 p.000300: 001230 p.000029: gifts, for example gift vouchers or gifts to participating schools. Incentives may be permissible, but anything which
000667 p.000300: 001231 p.000029: implies coercion is not.
000668 p.000300: 001232 p.000029:
000669 p.000300: 001233 p.000029:
000670 p.000300: 001234 p.000030: 30
000671 p.000300: 001235 p.000030:
...

...
000676 p.000300: data and
000677 p.000300: 001754 p.000041: records (such as, but not restricted to medical, genetic, financial, personnel, criminal or administrative records and
000678 p.000300: 001755 p.000041: test results including scholastic achievements).
000679 p.000300: 001756 p.000041:
000680 p.000300: 001757 p.000041: Freely-given informed consent: Informed consent entails giving sufficient information about the research and ensuring
000681 p.000300: 001758 p.000041: that there is no explicit or implicit coercion so that prospective participants can make an informed and free decision
000682 p.000300: 001759 p.000041: on their possible involvement. Typically, the information should be provided in written form, time should be allowed
000683 p.000300: 001760 p.000041: for the participants to consider their choices and the forms should be signed off by the research participants to
000684 p.000300: 001761 p.000041: indicate consent. Where participants are not literate, verbal consent may be obtained but this should wherever
000685 p.000300: possible
...

...
000690 p.000300: 001814 p.000043: Transparency in research ethics: The full, accurate, and open disclosure of relevant information is always important.
000691 p.000300: 001815 p.000043: Where the research involves new and innovative methodologies which raise distinctive considerations (eg online
000692 p.000300: 001816 p.000043: research), this is especially important.
000693 p.000300: 001817 p.000043:
000694 p.000300: 001818 p.000043: Valid consent: Consent is valid if it meets three conditions: participant has capacity to make a decision; the process
000695 p.000300: 001819 p.000043: is free from coercion; and the consent is informed. For consent to be ‘valid’ the participant must be capable of
000696 p.000300: 001820 p.000043: understanding all the potential risks involved. Where this may be in doubt, the Mental Capacity Act 2005 and Adults
000697 p.000300: 001821 p.000043: with Incapacity (Scotland) Act 2000 may apply (see Appendix D).
000698 p.000300: 001822 p.000043:
000699 p.000300: 001823 p.000043:
...

...
000849 p.000300: 000127 p.000003: 3
000850 p.000300: 000128 p.000003:
000851 p.000300: 000129 p.000003: Our principles and expectations for ethical research
000852 p.000300: 000130 p.000003: There are six key principles of ethical research that we expect to be addressed:
000853 p.000300: 000131 p.000003:
000854 p.000300: 000132 p.000003: • Research participants should take part voluntarily, free from any coercion or undue influence, and their rights,
000855 p.000300: 000133 p.000003: dignity and (when possible) autonomy should be respected and appropriately protected.
000856 p.000300: 000134 p.000003:
000857 p.000300: 000135 p.000003: • Research should be worthwhile and provide value that outweighs any risk or harm. Researchers should aim to
000858 p.000300: 000136 p.000003: maximise the benefit of the research and minimise potential risk of harm to participants and researchers. All potential
...

...
000875 p.000300:
000876 p.000300: ...
000877 p.000300: 001211 p.000029: consent. This approach means that participants consent to a framework for future research of certain types, not just to
000878 p.000300: 001212 p.000029: consent for a particular project.
000879 p.000300: 001213 p.000029:
000880 p.000300: 001214 p.000029: What does it mean that research participants should participate voluntarily, free from any coercion?
000881 p.000300: 001215 p.000029: In all cases of research, researchers should inform participants of their right to refuse to participate or withdraw
000882 p.000300: 001216 p.000029: from the investigation whenever and for whatever reason they wish. There should be no coercion or undue influence
000883 p.000300: of
000884 p.000300: 001217 p.000029: research participants to take part in the research.
000885 p.000300: 001218 p.000029:
000886 p.000300: 001219 p.000029: Research participants, however, may be given small monetary reimbursement for their time and expenses involved.
...

...
001101 p.000300: 000127 p.000003: 3
001102 p.000300: 000128 p.000003:
001103 p.000300: 000129 p.000003: Our principles and expectations for ethical research
001104 p.000300: 000130 p.000003: There are six key principles of ethical research that we expect to be addressed:
001105 p.000300: 000131 p.000003:
001106 p.000300: 000132 p.000003: • Research participants should take part voluntarily, free from any coercion or undue influence, and their rights,
001107 p.000300: 000133 p.000003: dignity and (when possible) autonomy should be respected and appropriately protected.
001108 p.000300: 000134 p.000003:
001109 p.000300: 000135 p.000003: • Research should be worthwhile and provide value that outweighs any risk or harm. Researchers should aim to
001110 p.000300: 000136 p.000003: maximise the benefit of the research and minimise potential risk of harm to participants and researchers. All potential
...

...
001127 p.000300:
001128 p.000300: ...
001129 p.000300: 001211 p.000029: consent. This approach means that participants consent to a framework for future research of certain types, not just to
001130 p.000300: 001212 p.000029: consent for a particular project.
001131 p.000300: 001213 p.000029:
001132 p.000300: 001214 p.000029: What does it mean that research participants should participate voluntarily, free from any coercion?
001133 p.000300: 001215 p.000029: In all cases of research, researchers should inform participants of their right to refuse to participate or withdraw
001134 p.000300: 001216 p.000029: from the investigation whenever and for whatever reason they wish. There should be no coercion or undue influence
001135 p.000300: of
001136 p.000300: 001217 p.000029: research participants to take part in the research.
001137 p.000300: 001218 p.000029:
001138 p.000300: 001219 p.000029: Research participants, however, may be given small monetary reimbursement for their time and expenses involved.
...

...
001968 p.000300:
001969 p.000300: ...
001970 p.000300: 001180 p.000028: 2.2 Consent
001971 p.000300: 001181 p.000028: What is informed consent?
001972 p.000300: 001182 p.000028: Informed consent entails giving sufficient information about the research and ensuring that there is no explicit or
001973 p.000300: 001183 p.000028: implicit coercion (see below) so that prospective participants can make an informed and free decision on their possible
001974 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
001975 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
001976 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
001977 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
...

...
002272 p.000300: 001227 p.000029: (https://www.mrs.org.uk/standards/downloads/2008-01-
002273 p.000300: 001228 p.000029: 18%20Incentives%20and%20Free%20Prize%20Draws.pdf?SESSID=hbt5j57mhnb2vrs0pfsrs2 hma0) has published
002274 p.000300: useful guidelines on
002275 p.000300: 001229 p.000029: using free prize draws. Where children are involved, it is often appropriate to acknowledge their help with personal
002276 p.000300: 001230 p.000029: gifts, for example gift vouchers or gifts to participating schools. Incentives may be permissible, but anything which
002277 p.000300: 001231 p.000029: implies coercion is not.
002278 p.000300: 001232 p.000029:
002279 p.000300: 001233 p.000029:
002280 p.000300: ...
002281 p.000300:
...

...
002929 p.000300: 001814 p.000043: Transparency in research ethics: The full, accurate, and open disclosure of relevant information is always important.
002930 p.000300: 001815 p.000043: Where the research involves new and innovative methodologies which raise distinctive considerations (eg online
002931 p.000300: 001816 p.000043: research), this is especially important.
002932 p.000300: 001817 p.000043:
002933 p.000300: 001818 p.000043: Valid consent: Consent is valid if it meets three conditions: participant has capacity to make a decision; the process
002934 p.000300: 001819 p.000043: is free from coercion; and the consent is informed. For consent to be ‘valid’ the participant must be capable of
002935 p.000300: 001820 p.000043: understanding all the potential risks involved. Where this may be in doubt, the Mental Capacity Act 2005 and Adults
002936 p.000300: 001821 p.000043: with Incapacity (Scotland) Act 2000 may apply (see Appendix D).
002937 p.000300: 001822 p.000043:
002938 p.000300: 001823 p.000043:
...

...
003005 p.000300: data and
003006 p.000300: 001754 p.000041: records (such as, but not restricted to medical, genetic, financial, personnel, criminal or administrative records and
003007 p.000300: 001755 p.000041: test results including scholastic achievements).
003008 p.000300: 001756 p.000041:
003009 p.000300: 001757 p.000041: Freely-given informed consent: Informed consent entails giving sufficient information about the research and ensuring
003010 p.000300: 001758 p.000041: that there is no explicit or implicit coercion so that prospective participants can make an informed and free decision
003011 p.000300: ...
003012 p.000300:
003013 p.000300: Social / LGBTQ+ Status
003014 p.000300: Searching for indicator physically:
...

...
003062 p.000300: ...
003063 p.000300:
003064 p.000300: ...
003065 p.000300: 001756 p.000041:
003066 p.000300: 001757 p.000041: Freely-given informed consent: Informed consent entails giving sufficient information about the research and ensuring
003067 p.000300: 001758 p.000041: that there is no explicit or implicit coercion so that prospective participants can make an informed and free decision
003068 p.000300: 001759 p.000041: on their possible involvement. Typically, the information should be provided in written form, time should be allowed
003069 p.000300: 001760 p.000041: for the participants to consider their choices and the forms should be signed off by the research participants to
003070 p.000300: 001761 p.000041: indicate consent. Where participants are not literate, verbal consent may be obtained but this should wherever
003071 p.000300: possible
...

...
004036 p.000300: autonomy Impaired Autonomy
004037 p.000300: cadavers Cadavers
004038 p.000300: capacity Fetus/Neonate
004039 p.000300: child Child
004040 p.000300: children Child
004041 p.000300: coercion Presence of Coercion
004042 p.000300: cognitive Cognitive Impairment
004043 p.000300: cognitive impairment Cognitive Impairment
004044 p.000300: cultural Cultural Differences
004045 p.000300: culture Cultural Differences
...

...
004156 p.000300: General/Other Dependent dependent
004157 p.000300: General/Other Diminished Autonomy age
004158 p.000300: General/Other Impaired Autonomy autonomy
004159 p.000300: General/Other Incapacitated incapacity
004160 p.000300: General/Other Laboratory Staff usage
004161 p.000300: General/Other Presence of Coercion coercion
004162 p.000300: General/Other Relationship to Authority authority
004163 p.000300: General/Other Undue Influence undue influence
004164 p.000300: Health Cadavers cadavers
004165 p.000300: Health Cognitive Impairment cognitive
...

General/Other / Relationship to Authority

Searching for indicator authority:

(return to top)
...
000403 p.000300: Searching for indicator incapacity:
000404 p.000300:
000405 p.000300: (return to top)
000406 p.000300: ...
000407 p.000300: 000317 p.000007: • (http://www.legislation.gov.uk/ukpga/2005/9/contents ). Normally this will be a REC recognised by the Secretary of
000408 p.000300: 000318 p.000007: State and Welsh Ministers and operating under the Health Research Authority (HRA) Governance Arrangements for
000409 p.000300: Research
000410 p.000300: 000319 p.000007: Ethics Committees (GAfREC) (http://www.hra.nhs.uk/resources/research-legislation-and-
000411 p.000300: 000320 p.000007: governance/governance-arrangements-for-research-ethics- committees/#sthash.rH7OVRVy.dpuf). Research
000412 p.000300: conducted in
...

...
000697 p.000300: 001821 p.000043: with Incapacity (Scotland) Act 2000 may apply (see Appendix D).
000698 p.000300: 001822 p.000043:
000699 p.000300: 001823 p.000043:
000700 p.000300: ...
000701 p.000300:
000702 p.000300: General/Other / Relationship to Authority
000703 p.000300: Searching for indicator authority:
000704 p.000300:
000705 p.000300: (return to top)
000706 p.000300: ...
000707 p.000300: 000267 p.000006:
000708 p.000300: 000268 p.000006: RO policies and procedures for light-touch, expedited and full review should include a clear statement that addresses
000709 p.000300: 000269 p.000006: the following issues:
000710 p.000300: 000270 p.000006:
000711 p.000300: 000271 p.000006: • criteria for identifying research that involves more than minimal risks (see example descriptions below)
000712 p.000300: 000272 p.000006: • the system of review for such research, including the scope of the authority of those to whom responsibility for
000713 p.000300: 000273 p.000006: review has been ‘delegated’
000714 p.000300: 000274 p.000006: • forms and procedures for submitting applications for light-touch, expedited and full review
000715 p.000300: 000275 p.000006: • procedures for reporting decisions to the principal REC
000716 p.000300: 000276 p.000006: • procedures for periodic ad-hoc audit (of light-touch, full and expedited reviews by the principal REC)
...

...
000721 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000722 p.000300: research
000723 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
000724 p.000300: 000316 p.000007:
000725 p.000300: 000317 p.000007: • (http://www.legislation.gov.uk/ukpga/2005/9/contents ). Normally this will be a REC recognised by the Secretary of
000726 p.000300: 000318 p.000007: State and Welsh Ministers and operating under the Health Research Authority (HRA) Governance Arrangements for
000727 p.000300: Research
000728 p.000300: 000319 p.000007: Ethics Committees (GAfREC) (http://www.hra.nhs.uk/resources/research-legislation-and-
000729 p.000300: 000320 p.000007: governance/governance-arrangements-for-research-ethics- committees/#sthash.rH7OVRVy.dpuf). Research
000730 p.000300: conducted in
...

...
000738 p.000300: level
000739 p.000300: 000491 p.000012: if this is where the decision to review a project is to be taken. If checklists are used to identify the type of review
000740 p.000300: 000492 p.000012: required, the checklists may, if necessary, be overseen by an independent review body at faculty, school or department
000741 p.000300: 000493 p.000012: level.
000742 p.000300: 000494 p.000012:
000743 p.000300: 000495 p.000012: The authority of a REC should be delegated through the RO’s usual governance mechanisms. It should report to
000744 p.000300: the
000745 p.000300: 000496 p.000012: appropriate RO authority. In defining a REC’s mandate and authority, the organisation should make clear the
000746 p.000300: 000497 p.000012: jurisdiction of a REC and its relationship to other relevant bodies or authorities both within and outside the RO.
000747 p.000300: 000498 p.000012:
000748 p.000300: 000499 p.000012: ROs are expected to monitor the operation of RECs for which they are responsible and the decisions they take in
000749 p.000300: 000500 p.000012: relation to social science proposals, according to the standards and guidelines set out here.
...

...
000755 p.000300: 000533 p.000013: supportive reflection that promotes mutual learning for researchers and REC members. RECs are responsible for
000756 p.000300: reviewing
000757 p.000300: 000534 p.000013: all research involving human participants and personal data conducted under their auspices and undertaken by
000758 p.000300: 000535 p.000013: individuals employed by the organisation that does not come under the remit of the UK Health Departments and
000759 p.000300: Health
000760 p.000300: 000536 p.000013: Research Authority (http://www.hra.nhs.uk/). RECs should review research proposals in a way that is independent,
000761 p.000300: 000537 p.000013: competent and timely. In some circumstances RECs may authorise other sub-committees or their chair to conduct
000762 p.000300: reviews
000763 p.000300: 000538 p.000013: on research involving minimal risk on their behalf. These sub-committees and chair will have no conflicts of interest
000764 p.000300: 000539 p.000013: with the project and will be accountable to the REC and through it to the appropriate organisational authorities for
...

...
000769 p.000300: 001334 p.000032: communication), and consent should be obtained by the closest relative or person with relevant powers (egwelfare
000770 p.000300: 001335 p.000032: attorney).
000771 p.000300: 001336 p.000032:
000772 p.000300: 001337 p.000032: What happens when research involves tissue samples (including blood)?
000773 p.000300: 001338 p.000032: UK research involving human tissue (including blood) is subject to the Human Tissue Act 2004, or The Human Tissue
000774 p.000300: 001339 p.000032: (Scotland) Act 2006, and should adhere to the Codes of Practice issued by the Human Tissue Authority. Ethics
000775 p.000300: review
000776 p.000300: 001340 p.000032: should be obtained from a REC operating to the standards set out in the governance arrangements issued by the UK
000777 p.000300: Health
000778 p.000300: 001341 p.000032: Departments or other ethics committees for clinical trials of investigational medicinal products recognised by the
000779 p.000300: 001342 p.000032: United Kingdom Ethics Committee Authority (UKECA).
000780 p.000300: 001343 p.000032:
000781 p.000300: 001344 p.000032: Where research involves the need to secure tissue samples (including blood), participants should be informed of their
000782 p.000300: 001345 p.000032: rights over such samples and data derived from them, especially whether they have or do not have the right to retrieve
000783 p.000300: 001346 p.000032: such samples.
...

...
000787 p.000300: 001890 p.000045: • Department for Business, Innovation and Skills– Universal ethical code for scientists (2007)
000788 p.000300: 001891 p.000045: www.gov.uk/government/publications/universal-ethical-code-for-scientists
000789 p.000300: 001892 p.000045: • Ethical Research Involving Children (ERIC) www.childethics.com/
000790 p.000300: 001893 p.000045: • European Science Foundation (2011). European code of Conduct for Research Integrity
000791 p.000300: 001894 p.000045: www.esf.org/fileadmin/Public_documents/Publications/Code_Conduct_ResearchIntegri ty.pdf
000792 p.000300: 001895 p.000045: • Human Tissue Authority (2014). Code of Practice
000793 p.000300: www.hta.gov.uk/policiesandcodesofpractice/codesofpractice.cfm
000794 p.000300: 001896 p.000045: • International Visual Sociology Association (2009). Code of Research Ethics and Guidelines
000795 p.000300: 001897 p.000045: http://visualsociology.org/about/ethics-and-guidelines.html
000796 p.000300: 001898 p.000045: • Market Research Society (2014). Code of Conduct https://www.mrs.org.uk/standards/code_of_conduct/
...

...
000801 p.000300: 001906 p.000045: www.ucea.ac.uk/en/publications/index.cfm/guidance-on-health-and-safety- in-fieldwork
000802 p.000300: 001907 p.000045: • University of Durham and National Co-ordinating Centre for Public Engagement (NCCP) (2012) Community-based
000803 p.000300: 001908 p.000045: participatory research. A guide to ethical principles and practice.
000804 p.000300: 001909 p.000045: https://www.dur.ac.uk/resources/beacon/CBPREthicsGuidewebNovember20121.pdf
000805 p.000300: 001910 p.000045:
000806 p.000300: 001911 p.000045: Health research authority and NHS Research
000807 p.000300: 001912 p.000045: • Health Research Authority (HRA) www.hra.nhs.uk/
000808 p.000300: 001913 p.000045: • HRA guidance for applicants and research community www.hra.nhs.uk/research- community/
000809 p.000300: 001914 p.000045: • HRA decision tool (MRC/HRA): www.hra-decisiontools.org.uk/ethics
000810 p.000300: 001915 p.000045: • HRA Application process Flowchart www.hra.nhs.uk/documents/2014/05/rec-
000811 p.000300: 001916 p.000045: application-process-flowchart-v6-0-19-may-2014.pdf
...

...
000816 p.000300: 001926 p.000046: • Department of Health (2011). Governance arrangements for research ethics committees: a harmonised edition
000817 p.000300: (updated
000818 p.000300: 001927 p.000046: April 2012) www.gov.uk/government/publications/health-research-ethics-committees-governance- arrangements
000819 p.000300: 001928 p.000046: • UK Health Departments, Research Governance Frameworks
000820 p.000300: 001929 p.000046: www.hra.nhs.uk/resources/research-legislation-and-governance/research-governance- frameworks/
000821 p.000300: 001930 p.000046: • Health Research Authority, Standard Operating Procedures for Research Ethics Committees (2015)
000822 p.000300: 001931 p.000046: http://www.hra.nhs.uk/resources/research-legislation-and- governance/standard-operating-procedures/
000823 p.000300: 001932 p.000046: • The Ministry of Defense Research Ethics Committees (MODREC)
000824 p.000300: www.science.mod.uk/engagement/modrec/modrec.aspx
000825 p.000300: 001933 p.000046: • Social Care Research Ethics Committee www.screc.org.uk
...

...
000831 p.000300: 002079 p.000049: This research project will be conducted with full compliance of research ethics norms, and more specifically the codes
000832 p.000300: 002080 p.000049: and practices established in the British Sociological Association's Statement of Ethical Practice and the LSE Research
000833 p.000300: 002081 p.000049: Ethics Policy. The research will involve human participants, commencing with a face-to-face/ door-to-door survey of
000834 p.000300: the
000835 p.000300: 002082 p.000049: proprietors of each of the streets. In the second year of study, focus group workshops will be held with local
000836 p.000300: 002083 p.000049: authority officers and members, and trade associations and relevant local organisations associated with each street.
000837 p.000300: As
000838 p.000300: 002084 p.000049: principal investigator I will take core responsibility to explain, in appropriate detail, what the research is about to
000839 p.000300: 002085 p.000049: participants. Every research participant will be given a one-page 'project information sheet' that outlines the purpose
000840 p.000300: 002086 p.000049: of the study, who is undertaking and financing the study, and
...

...
001168 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001169 p.000300: research
001170 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
001171 p.000300: 000316 p.000007:
001172 p.000300: 000317 p.000007: • (http://www.legislation.gov.uk/ukpga/2005/9/contents ). Normally this will be a REC recognised by the Secretary of
001173 p.000300: 000318 p.000007: State and Welsh Ministers and operating under the Health Research Authority (HRA) Governance Arrangements for
001174 p.000300: Research
001175 p.000300: 000319 p.000007: Ethics Committees (GAfREC) (http://www.hra.nhs.uk/resources/research-legislation-and-
001176 p.000300: 000320 p.000007: governance/governance-arrangements-for-research-ethics- committees/#sthash.rH7OVRVy.dpuf). Research
001177 p.000300: conducted in
...

...
001213 p.000300: 000533 p.000013: supportive reflection that promotes mutual learning for researchers and REC members. RECs are responsible for
001214 p.000300: reviewing
001215 p.000300: 000534 p.000013: all research involving human participants and personal data conducted under their auspices and undertaken by
001216 p.000300: 000535 p.000013: individuals employed by the organisation that does not come under the remit of the UK Health Departments and
001217 p.000300: Health
001218 p.000300: 000536 p.000013: Research Authority (http://www.hra.nhs.uk/). RECs should review research proposals in a way that is independent,
001219 p.000300: 000537 p.000013: competent and timely. In some circumstances RECs may authorise other sub-committees or their chair to conduct
001220 p.000300: reviews
001221 p.000300: 000538 p.000013: on research involving minimal risk on their behalf. These sub-committees and chair will have no conflicts of interest
001222 p.000300: 000539 p.000013: with the project and will be accountable to the REC and through it to the appropriate organisational authorities for
...

...
001300 p.000300: ...
001301 p.000300: 001335 p.000032: attorney).
001302 p.000300: 001336 p.000032:
001303 p.000300: 001337 p.000032: What happens when research involves tissue samples (including blood)?
001304 p.000300: 001338 p.000032: UK research involving human tissue (including blood) is subject to the Human Tissue Act 2004, or The Human Tissue
001305 p.000300: 001339 p.000032: (Scotland) Act 2006, and should adhere to the Codes of Practice issued by the Human Tissue Authority. Ethics
001306 p.000300: review
001307 p.000300: 001340 p.000032: should be obtained from a REC operating to the standards set out in the governance arrangements issued by the UK
001308 p.000300: Health
001309 p.000300: 001341 p.000032: Departments or other ethics committees for clinical trials of investigational medicinal products recognised by the
001310 p.000300: 001342 p.000032: United Kingdom Ethics Committee Authority (UKECA).
001311 p.000300: 001343 p.000032:
001312 p.000300: 001344 p.000032: Where research involves the need to secure tissue samples (including blood), participants should be informed of their
001313 p.000300: ...
001314 p.000300:
...

...
001351 p.000300: 001906 p.000045: www.ucea.ac.uk/en/publications/index.cfm/guidance-on-health-and-safety- in-fieldwork
001352 p.000300: 001907 p.000045: • University of Durham and National Co-ordinating Centre for Public Engagement (NCCP) (2012) Community-based
001353 p.000300: 001908 p.000045: participatory research. A guide to ethical principles and practice.
001354 p.000300: 001909 p.000045: https://www.dur.ac.uk/resources/beacon/CBPREthicsGuidewebNovember20121.pdf
001355 p.000300: 001910 p.000045:
001356 p.000300: 001911 p.000045: Health research authority and NHS Research
001357 p.000300: 001912 p.000045: • Health Research Authority (HRA) www.hra.nhs.uk/
001358 p.000300: 001913 p.000045: • HRA guidance for applicants and research community www.hra.nhs.uk/research- community/
001359 p.000300: 001914 p.000045: • HRA decision tool (MRC/HRA): www.hra-decisiontools.org.uk/ethics
001360 p.000300: 001915 p.000045: • HRA Application process Flowchart www.hra.nhs.uk/documents/2014/05/rec-
001361 p.000300: 001916 p.000045: application-process-flowchart-v6-0-19-may-2014.pdf
...

...
001370 p.000300: 001926 p.000046: • Department of Health (2011). Governance arrangements for research ethics committees: a harmonised edition
001371 p.000300: (updated
001372 p.000300: 001927 p.000046: April 2012) www.gov.uk/government/publications/health-research-ethics-committees-governance- arrangements
001373 p.000300: 001928 p.000046: • UK Health Departments, Research Governance Frameworks
001374 p.000300: 001929 p.000046: www.hra.nhs.uk/resources/research-legislation-and-governance/research-governance- frameworks/
001375 p.000300: 001930 p.000046: • Health Research Authority, Standard Operating Procedures for Research Ethics Committees (2015)
001376 p.000300: 001931 p.000046: http://www.hra.nhs.uk/resources/research-legislation-and- governance/standard-operating-procedures/
001377 p.000300: 001932 p.000046: • The Ministry of Defense Research Ethics Committees (MODREC)
001378 p.000300: www.science.mod.uk/engagement/modrec/modrec.aspx
001379 p.000300: 001933 p.000046: • Social Care Research Ethics Committee www.screc.org.uk
...

...
002352 p.000300: 001890 p.000045: • Department for Business, Innovation and Skills– Universal ethical code for scientists (2007)
002353 p.000300: 001891 p.000045: www.gov.uk/government/publications/universal-ethical-code-for-scientists
002354 p.000300: 001892 p.000045: • Ethical Research Involving Children (ERIC) www.childethics.com/
002355 p.000300: 001893 p.000045: • European Science Foundation (2011). European code of Conduct for Research Integrity
002356 p.000300: 001894 p.000045: www.esf.org/fileadmin/Public_documents/Publications/Code_Conduct_ResearchIntegri ty.pdf
002357 p.000300: 001895 p.000045: • Human Tissue Authority (2014). Code of Practice
002358 p.000300: www.hta.gov.uk/policiesandcodesofpractice/codesofpractice.cfm
002359 p.000300: 001896 p.000045: • International Visual Sociology Association (2009). Code of Research Ethics and Guidelines
002360 p.000300: ...
002361 p.000300:
...

...
002744 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002745 p.000300: research
002746 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
002747 p.000300: 000316 p.000007:
002748 p.000300: 000317 p.000007: • (http://www.legislation.gov.uk/ukpga/2005/9/contents ). Normally this will be a REC recognised by the Secretary of
002749 p.000300: 000318 p.000007: State and Welsh Ministers and operating under the Health Research Authority (HRA) Governance Arrangements for
002750 p.000300: Research
002751 p.000300: 000319 p.000007: Ethics Committees (GAfREC) (http://www.hra.nhs.uk/resources/research-legislation-and-
002752 p.000300: ...
002753 p.000300:
...

...
003399 p.000300: 000471 p.000011:
003400 p.000300: 000472 p.000011: Research that involves anonymised records and datasets that exist in the public domain may only require a light-touch
003401 p.000300: ...
003402 p.000300:
003403 p.000300: ...
003404 p.000300: 000495 p.000012: The authority of a REC should be delegated through the RO’s usual governance mechanisms. It should report to
003405 p.000300: the
003406 p.000300: 000496 p.000012: appropriate RO authority. In defining a REC’s mandate and authority, the organisation should make clear the
003407 p.000300: 000497 p.000012: jurisdiction of a REC and its relationship to other relevant bodies or authorities both within and outside the RO.
003408 p.000300: 000498 p.000012:
003409 p.000300: 000499 p.000012: ROs are expected to monitor the operation of RECs for which they are responsible and the decisions they take in
003410 p.000300: 000500 p.000012: relation to social science proposals, according to the standards and guidelines set out here.
...

...
003765 p.000300: ...
003766 p.000300:
003767 p.000300: ...
003768 p.000300: 001928 p.000046: • UK Health Departments, Research Governance Frameworks
003769 p.000300: 001929 p.000046: www.hra.nhs.uk/resources/research-legislation-and-governance/research-governance- frameworks/
003770 p.000300: 001930 p.000046: • Health Research Authority, Standard Operating Procedures for Research Ethics Committees (2015)
003771 p.000300: 001931 p.000046: http://www.hra.nhs.uk/resources/research-legislation-and- governance/standard-operating-procedures/
003772 p.000300: 001932 p.000046: • The Ministry of Defense Research Ethics Committees (MODREC)
003773 p.000300: www.science.mod.uk/engagement/modrec/modrec.aspx
003774 p.000300: 001933 p.000046: • Social Care Research Ethics Committee www.screc.org.uk
...

...
004030 p.000300: Indicator List
004031 p.000300: Indicator Vulnerability
004032 p.000300: abuse Victim of Abuse
004033 p.000300: access Access to Social Goods
004034 p.000300: age Diminished Autonomy
004035 p.000300: authority Relationship to Authority
004036 p.000300: autonomy Impaired Autonomy
004037 p.000300: cadavers Cadavers
004038 p.000300: capacity Fetus/Neonate
004039 p.000300: child Child
...

...
004157 p.000300: General/Other Diminished Autonomy age
004158 p.000300: General/Other Impaired Autonomy autonomy
004159 p.000300: General/Other Incapacitated incapacity
004160 p.000300: General/Other Laboratory Staff usage
004161 p.000300: General/Other Presence of Coercion coercion
004162 p.000300: General/Other Relationship to Authority authority
004163 p.000300: General/Other Undue Influence undue influence
004164 p.000300: Health Cadavers cadavers
004165 p.000300: Health Cognitive Impairment cognitive
004166 p.000300: Health Cognitive Impairment cognitive impairment
...

Searching for indicator relationship to authority:

(return to top)
...
000697 p.000300: 001821 p.000043: with Incapacity (Scotland) Act 2000 may apply (see Appendix D).
000698 p.000300: 001822 p.000043:
000699 p.000300: 001823 p.000043:
000700 p.000300: ...
000701 p.000300:
000702 p.000300: General/Other / Relationship to Authority
000703 p.000300: Searching for indicator authority:
000704 p.000300:
000705 p.000300: (return to top)
000706 p.000300: ...
000707 p.000300: 000267 p.000006:
...

...
004030 p.000300: Indicator List
004031 p.000300: Indicator Vulnerability
004032 p.000300: abuse Victim of Abuse
004033 p.000300: access Access to Social Goods
004034 p.000300: age Diminished Autonomy
004035 p.000300: authority Relationship to Authority
004036 p.000300: autonomy Impaired Autonomy
004037 p.000300: cadavers Cadavers
004038 p.000300: capacity Fetus/Neonate
004039 p.000300: child Child
...

...
004157 p.000300: General/Other Diminished Autonomy age
004158 p.000300: General/Other Impaired Autonomy autonomy
004159 p.000300: General/Other Incapacitated incapacity
004160 p.000300: General/Other Laboratory Staff usage
004161 p.000300: General/Other Presence of Coercion coercion
004162 p.000300: General/Other Relationship to Authority authority
004163 p.000300: General/Other Undue Influence undue influence
004164 p.000300: Health Cadavers cadavers
004165 p.000300: Health Cognitive Impairment cognitive
004166 p.000300: Health Cognitive Impairment cognitive impairment
...

General/Other / Undue Influence

Searching for indicator undue influence:

(return to top)
...
000376 p.000300: ...
000377 p.000300: 000128 p.000003:
000378 p.000300: 000129 p.000003: Our principles and expectations for ethical research
000379 p.000300: 000130 p.000003: There are six key principles of ethical research that we expect to be addressed:
000380 p.000300: 000131 p.000003:
000381 p.000300: 000132 p.000003: • Research participants should take part voluntarily, free from any coercion or undue influence, and their rights,
000382 p.000300: 000133 p.000003: dignity and (when possible) autonomy should be respected and appropriately protected.
000383 p.000300: 000134 p.000003:
000384 p.000300: 000135 p.000003: • Research should be worthwhile and provide value that outweighs any risk or harm. Researchers should aim to
000385 p.000300: 000136 p.000003: maximise the benefit of the research and minimise potential risk of harm to participants and researchers. All potential
...

...
000618 p.000300: 000127 p.000003: 3
000619 p.000300: 000128 p.000003:
000620 p.000300: 000129 p.000003: Our principles and expectations for ethical research
000621 p.000300: 000130 p.000003: There are six key principles of ethical research that we expect to be addressed:
000622 p.000300: 000131 p.000003:
000623 p.000300: 000132 p.000003: • Research participants should take part voluntarily, free from any coercion or undue influence, and their rights,
000624 p.000300: 000133 p.000003: dignity and (when possible) autonomy should be respected and appropriately protected.
000625 p.000300: 000134 p.000003:
000626 p.000300: 000135 p.000003: • Research should be worthwhile and provide value that outweighs any risk or harm. Researchers should aim to
000627 p.000300: 000136 p.000003: maximise the benefit of the research and minimise potential risk of harm to participants and researchers. All potential
...

...
000646 p.000300: 001211 p.000029: consent. This approach means that participants consent to a framework for future research of certain types, not just to
000647 p.000300: 001212 p.000029: consent for a particular project.
000648 p.000300: 001213 p.000029:
000649 p.000300: 001214 p.000029: What does it mean that research participants should participate voluntarily, free from any coercion?
000650 p.000300: 001215 p.000029: In all cases of research, researchers should inform participants of their right to refuse to participate or withdraw
000651 p.000300: 001216 p.000029: from the investigation whenever and for whatever reason they wish. There should be no coercion or undue influence
000652 p.000300: of
000653 p.000300: 001217 p.000029: research participants to take part in the research.
000654 p.000300: 001218 p.000029:
000655 p.000300: 001219 p.000029: Research participants, however, may be given small monetary reimbursement for their time and expenses involved.
...

...
000839 p.000300: 002085 p.000049: participants. Every research participant will be given a one-page 'project information sheet' that outlines the purpose
000840 p.000300: 002086 p.000049: of the study, who is undertaking and financing the study, and
000841 p.000300: 002087 p.000050: 50
000842 p.000300: ...
000843 p.000300:
000844 p.000300: General/Other / Undue Influence
000845 p.000300: Searching for indicator undue influence:
000846 p.000300:
000847 p.000300: (return to top)
000848 p.000300: ...
000849 p.000300: 000127 p.000003: 3
000850 p.000300: 000128 p.000003:
000851 p.000300: 000129 p.000003: Our principles and expectations for ethical research
000852 p.000300: 000130 p.000003: There are six key principles of ethical research that we expect to be addressed:
000853 p.000300: 000131 p.000003:
000854 p.000300: 000132 p.000003: • Research participants should take part voluntarily, free from any coercion or undue influence, and their rights,
000855 p.000300: 000133 p.000003: dignity and (when possible) autonomy should be respected and appropriately protected.
000856 p.000300: 000134 p.000003:
000857 p.000300: 000135 p.000003: • Research should be worthwhile and provide value that outweighs any risk or harm. Researchers should aim to
000858 p.000300: 000136 p.000003: maximise the benefit of the research and minimise potential risk of harm to participants and researchers. All potential
...

...
000862 p.000300: 000499 p.000012: ROs are expected to monitor the operation of RECs for which they are responsible and the decisions they take in
000863 p.000300: 000500 p.000012: relation to social science proposals, according to the standards and guidelines set out here.
000864 p.000300: 000501 p.000012:
000865 p.000300: 000502 p.000012: Independence of Research Ethics Committees
000866 p.000300: 000503 p.000012: ROs are responsible for ensuring that the RECs within their organisation act independently. They should be free from
000867 p.000300: 000504 p.000012: bias and undue influence from the RO in which they are located, from the researchers whose proposals they consider
000868 p.000300: and
000869 p.000300: 000505 p.000012: from the personal or financial interests of their members. The independence of a REC is founded on their membership,
000870 p.000300: on
000871 p.000300: 000506 p.000012: strict rules regarding conflict of interests and on regular monitoring of and accountability for their decisions.
...

...
000877 p.000300: 001211 p.000029: consent. This approach means that participants consent to a framework for future research of certain types, not just to
000878 p.000300: 001212 p.000029: consent for a particular project.
000879 p.000300: 001213 p.000029:
000880 p.000300: 001214 p.000029: What does it mean that research participants should participate voluntarily, free from any coercion?
000881 p.000300: 001215 p.000029: In all cases of research, researchers should inform participants of their right to refuse to participate or withdraw
000882 p.000300: 001216 p.000029: from the investigation whenever and for whatever reason they wish. There should be no coercion or undue influence
000883 p.000300: of
000884 p.000300: 001217 p.000029: research participants to take part in the research.
000885 p.000300: 001218 p.000029:
000886 p.000300: 001219 p.000029: Research participants, however, may be given small monetary reimbursement for their time and expenses involved.
...

...
001101 p.000300: 000127 p.000003: 3
001102 p.000300: 000128 p.000003:
001103 p.000300: 000129 p.000003: Our principles and expectations for ethical research
001104 p.000300: 000130 p.000003: There are six key principles of ethical research that we expect to be addressed:
001105 p.000300: 000131 p.000003:
001106 p.000300: 000132 p.000003: • Research participants should take part voluntarily, free from any coercion or undue influence, and their rights,
001107 p.000300: 000133 p.000003: dignity and (when possible) autonomy should be respected and appropriately protected.
001108 p.000300: 000134 p.000003:
001109 p.000300: 000135 p.000003: • Research should be worthwhile and provide value that outweighs any risk or harm. Researchers should aim to
001110 p.000300: 000136 p.000003: maximise the benefit of the research and minimise potential risk of harm to participants and researchers. All potential
...

...
001114 p.000300: 000499 p.000012: ROs are expected to monitor the operation of RECs for which they are responsible and the decisions they take in
001115 p.000300: 000500 p.000012: relation to social science proposals, according to the standards and guidelines set out here.
001116 p.000300: 000501 p.000012:
001117 p.000300: 000502 p.000012: Independence of Research Ethics Committees
001118 p.000300: 000503 p.000012: ROs are responsible for ensuring that the RECs within their organisation act independently. They should be free from
001119 p.000300: 000504 p.000012: bias and undue influence from the RO in which they are located, from the researchers whose proposals they consider
001120 p.000300: and
001121 p.000300: 000505 p.000012: from the personal or financial interests of their members. The independence of a REC is founded on their membership,
001122 p.000300: on
001123 p.000300: 000506 p.000012: strict rules regarding conflict of interests and on regular monitoring of and accountability for their decisions.
...

...
001129 p.000300: 001211 p.000029: consent. This approach means that participants consent to a framework for future research of certain types, not just to
001130 p.000300: 001212 p.000029: consent for a particular project.
001131 p.000300: 001213 p.000029:
001132 p.000300: 001214 p.000029: What does it mean that research participants should participate voluntarily, free from any coercion?
001133 p.000300: 001215 p.000029: In all cases of research, researchers should inform participants of their right to refuse to participate or withdraw
001134 p.000300: 001216 p.000029: from the investigation whenever and for whatever reason they wish. There should be no coercion or undue influence
001135 p.000300: of
001136 p.000300: 001217 p.000029: research participants to take part in the research.
001137 p.000300: 001218 p.000029:
001138 p.000300: 001219 p.000029: Research participants, however, may be given small monetary reimbursement for their time and expenses involved.
...

...
003409 p.000300: 000499 p.000012: ROs are expected to monitor the operation of RECs for which they are responsible and the decisions they take in
003410 p.000300: 000500 p.000012: relation to social science proposals, according to the standards and guidelines set out here.
003411 p.000300: 000501 p.000012:
003412 p.000300: 000502 p.000012: Independence of Research Ethics Committees
003413 p.000300: 000503 p.000012: ROs are responsible for ensuring that the RECs within their organisation act independently. They should be free from
003414 p.000300: 000504 p.000012: bias and undue influence from the RO in which they are located, from the researchers whose proposals they consider
003415 p.000300: and
003416 p.000300: ...
003417 p.000300:
003418 p.000300: ...
...

...
004084 p.000300:
004085 p.000300: social Social
004086 p.000300: special Religion
004087 p.000300: student Student
004088 p.000300: threat Threat of Stigma
004089 p.000300: undue influence Undue Influence
004090 p.000300: union Trade Union Membership
004091 p.000300: usage Laboratory Staff
004092 p.000300: violence Threat of Violence
004093 p.000300: vulnerable Child
...

...
004158 p.000300: General/Other Impaired Autonomy autonomy
004159 p.000300: General/Other Incapacitated incapacity
004160 p.000300: General/Other Laboratory Staff usage
004161 p.000300: General/Other Presence of Coercion coercion
004162 p.000300: General/Other Relationship to Authority authority
004163 p.000300: General/Other Undue Influence undue influence
004164 p.000300: Health Cadavers cadavers
004165 p.000300: Health Cognitive Impairment cognitive
004166 p.000300: Health Cognitive Impairment cognitive impairment
004167 p.000300: Health Cognitive Impairment impaired
...

Health / Cadavers

Searching for indicator cadavers:

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...
000670 p.000300: 001234 p.000030: 30
000671 p.000300: 001235 p.000030:
000672 p.000300: ...
000673 p.000300:
000674 p.000300: ...
000675 p.000300: 001753 p.000041: died (cadavers, human remains and body parts), embryos and fetuses, human tissue and bodily fluids, and human
000676 p.000300: data and
000677 p.000300: 001754 p.000041: records (such as, but not restricted to medical, genetic, financial, personnel, criminal or administrative records and
000678 p.000300: 001755 p.000041: test results including scholastic achievements).
000679 p.000300: 001756 p.000041:
...

...
000886 p.000300: 001219 p.000029: Research participants, however, may be given small monetary reimbursement for their time and expenses involved.
000887 p.000300: Payment
000888 p.000300: 001220 p.000029: should not override the principles of freely given and fully informed consent. Participants should know before they
000889 p.000300: ...
000890 p.000300:
000891 p.000300: Health / Cadavers
000892 p.000300: Searching for indicator cadavers:
000893 p.000300:
000894 p.000300: (return to top)
000895 p.000300: ...
000896 p.000300: 001748 p.000041: Expedited review: In exceptional circumstances, it may be necessary for a proposal involving possible risk of harm to
000897 p.000300: 001749 p.000041: receive a full review at short notice. An expedited review is carried out by one or more members of a Research Ethics
000898 p.000300: 001750 p.000041: Committee (REC), commonly its chair, and not by a member of the department due to carry out the research.
000899 p.000300: 001751 p.000041:
000900 p.000300: 001752 p.000041: Human participants: Human participants are defined as including living human beings, human beings who have
000901 p.000300: recently
000902 p.000300: 001753 p.000041: died (cadavers, human remains and body parts), embryos and fetuses, human tissue and bodily fluids, and human
000903 p.000300: data and
000904 p.000300: 001754 p.000041: records (such as, but not restricted to medical, genetic, financial, personnel, criminal or administrative records and
000905 p.000300: 001755 p.000041: test results including scholastic achievements).
000906 p.000300: 001756 p.000041:
...

...
002999 p.000300: 001749 p.000041: receive a full review at short notice. An expedited review is carried out by one or more members of a Research Ethics
003000 p.000300: 001750 p.000041: Committee (REC), commonly its chair, and not by a member of the department due to carry out the research.
003001 p.000300: 001751 p.000041:
003002 p.000300: 001752 p.000041: Human participants: Human participants are defined as including living human beings, human beings who have
003003 p.000300: recently
003004 p.000300: 001753 p.000041: died (cadavers, human remains and body parts), embryos and fetuses, human tissue and bodily fluids, and human
003005 p.000300: data and
003006 p.000300: 001754 p.000041: records (such as, but not restricted to medical, genetic, financial, personnel, criminal or administrative records and
003007 p.000300: 001755 p.000041: test results including scholastic achievements).
003008 p.000300: 001756 p.000041:
...

...
004032 p.000300: abuse Victim of Abuse
004033 p.000300: access Access to Social Goods
004034 p.000300: age Diminished Autonomy
004035 p.000300: authority Relationship to Authority
004036 p.000300: autonomy Impaired Autonomy
004037 p.000300: cadavers Cadavers
004038 p.000300: capacity Fetus/Neonate
004039 p.000300: child Child
004040 p.000300: children Child
004041 p.000300: coercion Presence of Coercion
...

...
004159 p.000300: General/Other Incapacitated incapacity
004160 p.000300: General/Other Laboratory Staff usage
004161 p.000300: General/Other Presence of Coercion coercion
004162 p.000300: General/Other Relationship to Authority authority
004163 p.000300: General/Other Undue Influence undue influence
004164 p.000300: Health Cadavers cadavers
004165 p.000300: Health Cognitive Impairment cognitive
004166 p.000300: Health Cognitive Impairment cognitive impairment
004167 p.000300: Health Cognitive Impairment impaired
004168 p.000300: Health Cognitive Impairment impairment
...

Health / Cognitive Impairment

Searching for indicator cognitive:

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...
000280 p.000300: 000307 p.000007:
000281 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000282 p.000300: 000309 p.000007: Research involving:
000283 p.000300: 000310 p.000007:
000284 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000285 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000286 p.000300: 000313 p.000007:
000287 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000288 p.000300: research
000289 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
000543 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000544 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000545 p.000300: Scotland ‘A’
000546 p.000300: 001496 p.000035: REC).
000547 p.000300: 001497 p.000035: Research that may need a full review
000548 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
000549 p.000300: ...
000550 p.000300:
000551 p.000300: ...
000552 p.000300: 001653 p.000039: review by department REC
...

...
000905 p.000300: 001755 p.000041: test results including scholastic achievements).
000906 p.000300: 001756 p.000041:
000907 p.000300: 001757 p.000041: Freely-given informed consent: Informed consent entails giving sufficient information about the research and ensuring
000908 p.000300: ...
000909 p.000300:
000910 p.000300: Health / Cognitive Impairment
000911 p.000300: Searching for indicator cognitive:
000912 p.000300:
000913 p.000300: (return to top)
000914 p.000300: ...
000915 p.000300: 000307 p.000007:
000916 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000917 p.000300: 000309 p.000007: Research involving:
000918 p.000300: 000310 p.000007:
000919 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000920 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000921 p.000300: 000313 p.000007:
000922 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000923 p.000300: research
000924 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
000930 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000931 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000932 p.000300: Scotland ‘A’
000933 p.000300: 001496 p.000035: REC).
000934 p.000300: 001497 p.000035: Research that may need a full review
000935 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
000936 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
000937 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
000938 p.000300: 001501 p.000036: 36
000939 p.000300: 001502 p.000036:
000940 p.000300: ...
000941 p.000300:
000942 p.000300: Searching for indicator cognitive impairment:
000943 p.000300:
000944 p.000300: (return to top)
000945 p.000300: ...
000946 p.000300: 000307 p.000007:
000947 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000948 p.000300: 000309 p.000007: Research involving:
000949 p.000300: 000310 p.000007:
000950 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000951 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000952 p.000300: 000313 p.000007:
000953 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000954 p.000300: research
000955 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
000961 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000962 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000963 p.000300: Scotland ‘A’
000964 p.000300: 001496 p.000035: REC).
000965 p.000300: 001497 p.000035: Research that may need a full review
000966 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
000967 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
000968 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
000969 p.000300: 001501 p.000036: 36
000970 p.000300: 001502 p.000036:
...

...
000996 p.000300: 000307 p.000007:
000997 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000998 p.000300: 000309 p.000007: Research involving:
000999 p.000300: 000310 p.000007:
001000 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
001001 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
001002 p.000300: 000313 p.000007:
001003 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001004 p.000300: research
001005 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
001030 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
001031 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
001032 p.000300: Scotland ‘A’
001033 p.000300: 001496 p.000035: REC).
001034 p.000300: 001497 p.000035: Research that may need a full review
001035 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
001036 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
001037 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
001038 p.000300: 001501 p.000036: 36
001039 p.000300: 001502 p.000036:
...

...
001417 p.000300: 000307 p.000007:
001418 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
001419 p.000300: 000309 p.000007: Research involving:
001420 p.000300: 000310 p.000007:
001421 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
001422 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
001423 p.000300: 000313 p.000007:
001424 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001425 p.000300: research
001426 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
001983 p.000300: 001193 p.000029:
001984 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
001985 p.000300: ...
001986 p.000300:
001987 p.000300: ...
001988 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
001989 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
001990 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
001991 p.000300: 001501 p.000036: 36
001992 p.000300: 001502 p.000036:
...

...
002164 p.000300: 000307 p.000007:
002165 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
002166 p.000300: 000309 p.000007: Research involving:
002167 p.000300: 000310 p.000007:
002168 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002169 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002170 p.000300: 000313 p.000007:
002171 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002172 p.000300: research
002173 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
002310 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002311 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002312 p.000300: Scotland ‘A’
002313 p.000300: 001496 p.000035: REC).
002314 p.000300: 001497 p.000035: Research that may need a full review
002315 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
002316 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
002317 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
002318 p.000300: 001501 p.000036: 36
002319 p.000300: 001502 p.000036:
...

...
002400 p.000300: 000307 p.000007:
002401 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
002402 p.000300: 000309 p.000007: Research involving:
002403 p.000300: 000310 p.000007:
002404 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002405 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002406 p.000300: 000313 p.000007:
002407 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002408 p.000300: research
002409 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
002500 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002501 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002502 p.000300: Scotland ‘A’
002503 p.000300: 001496 p.000035: REC).
002504 p.000300: 001497 p.000035: Research that may need a full review
002505 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
002506 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
002507 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
002508 p.000300: 001501 p.000036: 36
002509 p.000300: 001502 p.000036:
...

...
002737 p.000300: (return to top)
002738 p.000300: ...
002739 p.000300: 000309 p.000007: Research involving:
002740 p.000300: 000310 p.000007:
002741 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002742 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002743 p.000300: 000313 p.000007:
002744 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002745 p.000300: research
002746 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
002892 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002893 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002894 p.000300: Scotland ‘A’
002895 p.000300: 001496 p.000035: REC).
002896 p.000300: 001497 p.000035: Research that may need a full review
002897 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
002898 p.000300: ...
002899 p.000300:
002900 p.000300: ...
002901 p.000300: 001515 p.000036: Will the study involve prolonged or repetitive testing?
...

...
004037 p.000300: cadavers Cadavers
004038 p.000300: capacity Fetus/Neonate
004039 p.000300: child Child
004040 p.000300: children Child
004041 p.000300: coercion Presence of Coercion
004042 p.000300: cognitive Cognitive Impairment
004043 p.000300: cognitive impairment Cognitive Impairment
004044 p.000300: cultural Cultural Differences
004045 p.000300: culture Cultural Differences
004046 p.000300: deceased Linguistic Proficiency
004047 p.000300: dependence Drug Dependence
...

...
004059 p.000300: health Health
004060 p.000300: hiv HIV/AIDS
004061 p.000300: home Property Ownership
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
...

...
004097 p.000300:
004098 p.000300: Indicator Peers (Indicators in Same Vulnerabilty)
004099 p.000300: Indicator Peers
004100 p.000300: child ['children', 'vulnerable']
004101 p.000300: children ['child', 'vulnerable']
004102 p.000300: cognitive ['cognitive impairment', 'impairment', 'impaired']
004103 p.000300: cognitive impairment ['cognitive', 'impairment', 'impaired']
004104 p.000300: cultural ['culture']
004105 p.000300: culture ['cultural']
004106 p.000300: drug ['influence']
004107 p.000300: economic ['poor']
004108 p.000300: education ['educational']
004109 p.000300: educational ['education']
004110 p.000300: engaged ['single']
004111 p.000300: ['cognitive', 'cognitive impairment',
004112 p.000300: impaired
004113 p.000300: 'impairment']
004114 p.000300: impairment ['cognitive', 'cognitive impairment', 'impaired']
004115 p.000300: influence ['drug']
004116 p.000300: party ['political']
004117 p.000300: political ['party']
004118 p.000300: poor ['economic']
...

...
004160 p.000300: General/Other Laboratory Staff usage
004161 p.000300: General/Other Presence of Coercion coercion
004162 p.000300: General/Other Relationship to Authority authority
004163 p.000300: General/Other Undue Influence undue influence
004164 p.000300: Health Cadavers cadavers
004165 p.000300: Health Cognitive Impairment cognitive
004166 p.000300: Health Cognitive Impairment cognitive impairment
004167 p.000300: Health Cognitive Impairment impaired
004168 p.000300: Health Cognitive Impairment impairment
004169 p.000300: Health Drug Dependence dependence
004170 p.000300: Health Drug Usage drug
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
...

Searching for indicator cognitive impairment:

(return to top)
...
000280 p.000300: 000307 p.000007:
000281 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000282 p.000300: 000309 p.000007: Research involving:
000283 p.000300: 000310 p.000007:
000284 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000285 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000286 p.000300: 000313 p.000007:
000287 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000288 p.000300: research
000289 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
000543 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000544 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000545 p.000300: Scotland ‘A’
000546 p.000300: 001496 p.000035: REC).
000547 p.000300: 001497 p.000035: Research that may need a full review
000548 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
000549 p.000300: ...
000550 p.000300:
000551 p.000300: ...
000552 p.000300: 001653 p.000039: review by department REC
...

...
000905 p.000300: 001755 p.000041: test results including scholastic achievements).
000906 p.000300: 001756 p.000041:
000907 p.000300: 001757 p.000041: Freely-given informed consent: Informed consent entails giving sufficient information about the research and ensuring
000908 p.000300: ...
000909 p.000300:
000910 p.000300: Health / Cognitive Impairment
000911 p.000300: Searching for indicator cognitive:
000912 p.000300:
000913 p.000300: (return to top)
000914 p.000300: ...
000915 p.000300: 000307 p.000007:
000916 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000917 p.000300: 000309 p.000007: Research involving:
000918 p.000300: 000310 p.000007:
000919 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000920 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000921 p.000300: 000313 p.000007:
000922 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000923 p.000300: research
000924 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
000930 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000931 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000932 p.000300: Scotland ‘A’
000933 p.000300: 001496 p.000035: REC).
000934 p.000300: 001497 p.000035: Research that may need a full review
000935 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
000936 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
000937 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
000938 p.000300: 001501 p.000036: 36
000939 p.000300: 001502 p.000036:
000940 p.000300: ...
000941 p.000300:
000942 p.000300: Searching for indicator cognitive impairment:
000943 p.000300:
000944 p.000300: (return to top)
000945 p.000300: ...
000946 p.000300: 000307 p.000007:
000947 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000948 p.000300: 000309 p.000007: Research involving:
000949 p.000300: 000310 p.000007:
000950 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000951 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000952 p.000300: 000313 p.000007:
000953 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000954 p.000300: research
000955 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
000961 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000962 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000963 p.000300: Scotland ‘A’
000964 p.000300: 001496 p.000035: REC).
000965 p.000300: 001497 p.000035: Research that may need a full review
000966 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
000967 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
000968 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
000969 p.000300: 001501 p.000036: 36
000970 p.000300: 001502 p.000036:
...

...
000996 p.000300: 000307 p.000007:
000997 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000998 p.000300: 000309 p.000007: Research involving:
000999 p.000300: 000310 p.000007:
001000 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
001001 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
001002 p.000300: 000313 p.000007:
001003 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001004 p.000300: research
001005 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
001030 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
001031 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
001032 p.000300: Scotland ‘A’
001033 p.000300: 001496 p.000035: REC).
001034 p.000300: 001497 p.000035: Research that may need a full review
001035 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
001036 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
001037 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
001038 p.000300: 001501 p.000036: 36
001039 p.000300: 001502 p.000036:
...

...
001417 p.000300: 000307 p.000007:
001418 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
001419 p.000300: 000309 p.000007: Research involving:
001420 p.000300: 000310 p.000007:
001421 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
001422 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
001423 p.000300: 000313 p.000007:
001424 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001425 p.000300: research
001426 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
001983 p.000300: 001193 p.000029:
001984 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
001985 p.000300: ...
001986 p.000300:
001987 p.000300: ...
001988 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
001989 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
001990 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
001991 p.000300: 001501 p.000036: 36
001992 p.000300: 001502 p.000036:
...

...
002164 p.000300: 000307 p.000007:
002165 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
002166 p.000300: 000309 p.000007: Research involving:
002167 p.000300: 000310 p.000007:
002168 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002169 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002170 p.000300: 000313 p.000007:
002171 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002172 p.000300: research
002173 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
002310 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002311 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002312 p.000300: Scotland ‘A’
002313 p.000300: 001496 p.000035: REC).
002314 p.000300: 001497 p.000035: Research that may need a full review
002315 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
002316 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
002317 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
002318 p.000300: 001501 p.000036: 36
002319 p.000300: 001502 p.000036:
...

...
002400 p.000300: 000307 p.000007:
002401 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
002402 p.000300: 000309 p.000007: Research involving:
002403 p.000300: 000310 p.000007:
002404 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002405 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002406 p.000300: 000313 p.000007:
002407 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002408 p.000300: research
002409 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
002500 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002501 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002502 p.000300: Scotland ‘A’
002503 p.000300: 001496 p.000035: REC).
002504 p.000300: 001497 p.000035: Research that may need a full review
002505 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
002506 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
002507 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
002508 p.000300: 001501 p.000036: 36
002509 p.000300: 001502 p.000036:
...

...
002737 p.000300: (return to top)
002738 p.000300: ...
002739 p.000300: 000309 p.000007: Research involving:
002740 p.000300: 000310 p.000007:
002741 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002742 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002743 p.000300: 000313 p.000007:
002744 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002745 p.000300: research
002746 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
002892 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002893 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002894 p.000300: Scotland ‘A’
002895 p.000300: 001496 p.000035: REC).
002896 p.000300: 001497 p.000035: Research that may need a full review
002897 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
002898 p.000300: ...
002899 p.000300:
002900 p.000300: ...
002901 p.000300: 001515 p.000036: Will the study involve prolonged or repetitive testing?
...

...
004037 p.000300: cadavers Cadavers
004038 p.000300: capacity Fetus/Neonate
004039 p.000300: child Child
004040 p.000300: children Child
004041 p.000300: coercion Presence of Coercion
004042 p.000300: cognitive Cognitive Impairment
004043 p.000300: cognitive impairment Cognitive Impairment
004044 p.000300: cultural Cultural Differences
004045 p.000300: culture Cultural Differences
004046 p.000300: deceased Linguistic Proficiency
004047 p.000300: dependence Drug Dependence
...

...
004059 p.000300: health Health
004060 p.000300: hiv HIV/AIDS
004061 p.000300: home Property Ownership
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
...

...
004097 p.000300:
004098 p.000300: Indicator Peers (Indicators in Same Vulnerabilty)
004099 p.000300: Indicator Peers
004100 p.000300: child ['children', 'vulnerable']
004101 p.000300: children ['child', 'vulnerable']
004102 p.000300: cognitive ['cognitive impairment', 'impairment', 'impaired']
004103 p.000300: cognitive impairment ['cognitive', 'impairment', 'impaired']
004104 p.000300: cultural ['culture']
004105 p.000300: culture ['cultural']
004106 p.000300: drug ['influence']
004107 p.000300: economic ['poor']
004108 p.000300: education ['educational']
004109 p.000300: educational ['education']
004110 p.000300: engaged ['single']
004111 p.000300: ['cognitive', 'cognitive impairment',
004112 p.000300: impaired
004113 p.000300: 'impairment']
004114 p.000300: impairment ['cognitive', 'cognitive impairment', 'impaired']
004115 p.000300: influence ['drug']
004116 p.000300: party ['political']
004117 p.000300: political ['party']
004118 p.000300: poor ['economic']
...

...
004160 p.000300: General/Other Laboratory Staff usage
004161 p.000300: General/Other Presence of Coercion coercion
004162 p.000300: General/Other Relationship to Authority authority
004163 p.000300: General/Other Undue Influence undue influence
004164 p.000300: Health Cadavers cadavers
004165 p.000300: Health Cognitive Impairment cognitive
004166 p.000300: Health Cognitive Impairment cognitive impairment
004167 p.000300: Health Cognitive Impairment impaired
004168 p.000300: Health Cognitive Impairment impairment
004169 p.000300: Health Drug Dependence dependence
004170 p.000300: Health Drug Usage drug
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
...

Searching for indicator impaired:

(return to top)
...
000367 p.000300: Scotland ‘A’
000368 p.000300: 001496 p.000035: REC).
000369 p.000300: 001497 p.000035: Research that may need a full review
000370 p.000300: ...
000371 p.000300:
000372 p.000300: General/Other / Impaired Autonomy
000373 p.000300: Searching for indicator autonomy:
000374 p.000300:
000375 p.000300: (return to top)
000376 p.000300: ...
...

...
000465 p.000300: the
000466 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
000467 p.000300: provisions for
000468 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
000469 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
000470 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
000471 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
000472 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
000473 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
000474 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
...

...
000968 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
000969 p.000300: 001501 p.000036: 36
000970 p.000300: 001502 p.000036:
000971 p.000300: ...
000972 p.000300:
000973 p.000300: Searching for indicator impaired:
000974 p.000300:
000975 p.000300: (return to top)
000976 p.000300: ...
000977 p.000300: 001116 p.000027: brain’. Guidance on the Mental Capacity Act notes that lack of capacity to make a decision may be permanent or
...

...
000979 p.000300: the
000980 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
000981 p.000300: provisions for
000982 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
000983 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
000984 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
000985 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
000986 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
000987 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
000988 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
...

...
001075 p.000300: the
001076 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
001077 p.000300: provisions for
001078 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
001079 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
001080 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
001081 p.000300: ...
001082 p.000300:
001083 p.000300: ...
001084 p.000300: 001502 p.000036:
...

...
001281 p.000300: research
001282 p.000300: ...
001283 p.000300:
001284 p.000300: ...
001285 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
001286 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
001287 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
001288 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
001289 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
001290 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
...

...
001499 p.000300: the
001500 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
001501 p.000300: provisions for
001502 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
001503 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
001504 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
001505 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
001506 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
001507 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
001508 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
...

...
002814 p.000300: the
002815 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
002816 p.000300: provisions for
002817 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
002818 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
002819 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
002820 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
002821 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
002822 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
002823 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
...

...
004031 p.000300: Indicator Vulnerability
004032 p.000300: abuse Victim of Abuse
004033 p.000300: access Access to Social Goods
004034 p.000300: age Diminished Autonomy
004035 p.000300: authority Relationship to Authority
004036 p.000300: autonomy Impaired Autonomy
004037 p.000300: cadavers Cadavers
004038 p.000300: capacity Fetus/Neonate
004039 p.000300: child Child
004040 p.000300: children Child
...

...
004059 p.000300: health Health
004060 p.000300: hiv HIV/AIDS
004061 p.000300: home Property Ownership
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
...

...
004097 p.000300:
004098 p.000300: Indicator Peers (Indicators in Same Vulnerabilty)
004099 p.000300: Indicator Peers
004100 p.000300: child ['children', 'vulnerable']
004101 p.000300: children ['child', 'vulnerable']
004102 p.000300: cognitive ['cognitive impairment', 'impairment', 'impaired']
004103 p.000300: cognitive impairment ['cognitive', 'impairment', 'impaired']
004104 p.000300: cultural ['culture']
004105 p.000300: culture ['cultural']
004106 p.000300: drug ['influence']
004107 p.000300: economic ['poor']
004108 p.000300: education ['educational']
004109 p.000300: educational ['education']
004110 p.000300: engaged ['single']
004111 p.000300: ['cognitive', 'cognitive impairment',
004112 p.000300: impaired
004113 p.000300: 'impairment']
004114 p.000300: impairment ['cognitive', 'cognitive impairment', 'impaired']
004115 p.000300: influence ['drug']
004116 p.000300: party ['political']
004117 p.000300: political ['party']
004118 p.000300: poor ['economic']
...

...
004153 p.000300: Economic Welfare Recipient welfare
004154 p.000300: General/Other Cultural Differences cultural
004155 p.000300: General/Other Cultural Differences culture
004156 p.000300: General/Other Dependent dependent
004157 p.000300: General/Other Diminished Autonomy age
004158 p.000300: General/Other Impaired Autonomy autonomy
004159 p.000300: General/Other Incapacitated incapacity
004160 p.000300: General/Other Laboratory Staff usage
004161 p.000300: General/Other Presence of Coercion coercion
004162 p.000300: General/Other Relationship to Authority authority
004163 p.000300: General/Other Undue Influence undue influence
004164 p.000300: Health Cadavers cadavers
004165 p.000300: Health Cognitive Impairment cognitive
004166 p.000300: Health Cognitive Impairment cognitive impairment
004167 p.000300: Health Cognitive Impairment impaired
004168 p.000300: Health Cognitive Impairment impairment
004169 p.000300: Health Drug Dependence dependence
004170 p.000300: Health Drug Usage drug
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
...

Health / Cognitive Impairment

Searching for indicator impairment:

(return to top)
...
000280 p.000300: 000307 p.000007:
000281 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000282 p.000300: 000309 p.000007: Research involving:
000283 p.000300: 000310 p.000007:
000284 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000285 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000286 p.000300: 000313 p.000007:
000287 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000288 p.000300: research
000289 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
000456 p.000300: 001112 p.000027: 2005 and the Adults with Incapacity (Scotland) Act 2000, and any projects that involve participants who fall under
000457 p.000300: 001113 p.000027: these Acts must be reviewed by a ‘recognised’ REC operating under the GAfREC
000458 p.000300: (http://www.ukbiobank.ac.uk/ethics/) or
000459 p.000300: 001114 p.000027: Scotland ‘A’ REC. The Mental Capacity Act 2005 applies to 16-17 year olds and adults (18 years and over)
000460 p.000300: who lack
000461 p.000300: 001115 p.000027: capacity to make decisions because of an impairment, mental disorder or ‘disturbance in the functioning of the
000462 p.000300: mind and
000463 p.000300: 001116 p.000027: brain’. Guidance on the Mental Capacity Act notes that lack of capacity to make a decision may be permanent or
000464 p.000300: 001117 p.000027: temporary. It could be state-related (eg due to drug or alcohol use, or because of the person’s emotional state at
000465 p.000300: the
...

...
000543 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000544 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000545 p.000300: Scotland ‘A’
000546 p.000300: 001496 p.000035: REC).
000547 p.000300: 001497 p.000035: Research that may need a full review
000548 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
000549 p.000300: ...
000550 p.000300:
000551 p.000300: ...
000552 p.000300: 001653 p.000039: review by department REC
...

...
000905 p.000300: 001755 p.000041: test results including scholastic achievements).
000906 p.000300: 001756 p.000041:
000907 p.000300: 001757 p.000041: Freely-given informed consent: Informed consent entails giving sufficient information about the research and ensuring
000908 p.000300: ...
000909 p.000300:
000910 p.000300: Health / Cognitive Impairment
000911 p.000300: Searching for indicator cognitive:
000912 p.000300:
000913 p.000300: (return to top)
000914 p.000300: ...
000915 p.000300: 000307 p.000007:
000916 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000917 p.000300: 000309 p.000007: Research involving:
000918 p.000300: 000310 p.000007:
000919 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000920 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000921 p.000300: 000313 p.000007:
000922 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000923 p.000300: research
000924 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
000930 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000931 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000932 p.000300: Scotland ‘A’
000933 p.000300: 001496 p.000035: REC).
000934 p.000300: 001497 p.000035: Research that may need a full review
000935 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
000936 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
000937 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
000938 p.000300: 001501 p.000036: 36
000939 p.000300: 001502 p.000036:
000940 p.000300: ...
000941 p.000300:
000942 p.000300: Searching for indicator cognitive impairment:
000943 p.000300:
000944 p.000300: (return to top)
000945 p.000300: ...
000946 p.000300: 000307 p.000007:
000947 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000948 p.000300: 000309 p.000007: Research involving:
000949 p.000300: 000310 p.000007:
000950 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000951 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000952 p.000300: 000313 p.000007:
000953 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000954 p.000300: research
000955 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
000961 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000962 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000963 p.000300: Scotland ‘A’
000964 p.000300: 001496 p.000035: REC).
000965 p.000300: 001497 p.000035: Research that may need a full review
000966 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
000967 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
000968 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
000969 p.000300: 001501 p.000036: 36
000970 p.000300: 001502 p.000036:
...

...
000987 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
000988 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
000989 p.000300: Capacity
000990 p.000300: ...
000991 p.000300:
000992 p.000300: Searching for indicator impairment:
000993 p.000300:
000994 p.000300: (return to top)
000995 p.000300: ...
000996 p.000300: 000307 p.000007:
000997 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000998 p.000300: 000309 p.000007: Research involving:
000999 p.000300: 000310 p.000007:
001000 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
001001 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
001002 p.000300: 000313 p.000007:
001003 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001004 p.000300: research
001005 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
001013 p.000300: 001112 p.000027: 2005 and the Adults with Incapacity (Scotland) Act 2000, and any projects that involve participants who fall under
001014 p.000300: 001113 p.000027: these Acts must be reviewed by a ‘recognised’ REC operating under the GAfREC
001015 p.000300: (http://www.ukbiobank.ac.uk/ethics/) or
001016 p.000300: 001114 p.000027: Scotland ‘A’ REC. The Mental Capacity Act 2005 applies to 16-17 year olds and adults (18 years and over)
001017 p.000300: who lack
001018 p.000300: 001115 p.000027: capacity to make decisions because of an impairment, mental disorder or ‘disturbance in the functioning of the
001019 p.000300: mind and
001020 p.000300: 001116 p.000027: brain’. Guidance on the Mental Capacity Act notes that lack of capacity to make a decision may be permanent or
001021 p.000300: 001117 p.000027: temporary. It could be state-related (eg due to drug or alcohol use, or because of the person’s emotional state at
001022 p.000300: the
...

...
001030 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
001031 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
001032 p.000300: Scotland ‘A’
001033 p.000300: 001496 p.000035: REC).
001034 p.000300: 001497 p.000035: Research that may need a full review
001035 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
001036 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
001037 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
001038 p.000300: 001501 p.000036: 36
001039 p.000300: 001502 p.000036:
...

...
001066 p.000300: 001112 p.000027: 2005 and the Adults with Incapacity (Scotland) Act 2000, and any projects that involve participants who fall under
001067 p.000300: 001113 p.000027: these Acts must be reviewed by a ‘recognised’ REC operating under the GAfREC
001068 p.000300: (http://www.ukbiobank.ac.uk/ethics/) or
001069 p.000300: 001114 p.000027: Scotland ‘A’ REC. The Mental Capacity Act 2005 applies to 16-17 year olds and adults (18 years and over)
001070 p.000300: who lack
001071 p.000300: 001115 p.000027: capacity to make decisions because of an impairment, mental disorder or ‘disturbance in the functioning of the
001072 p.000300: mind and
001073 p.000300: 001116 p.000027: brain’. Guidance on the Mental Capacity Act notes that lack of capacity to make a decision may be permanent or
001074 p.000300: 001117 p.000027: temporary. It could be state-related (eg due to drug or alcohol use, or because of the person’s emotional state at
001075 p.000300: the
...

...
001417 p.000300: 000307 p.000007:
001418 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
001419 p.000300: 000309 p.000007: Research involving:
001420 p.000300: 000310 p.000007:
001421 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
001422 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
001423 p.000300: 000313 p.000007:
001424 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001425 p.000300: research
001426 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
001983 p.000300: 001193 p.000029:
001984 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
001985 p.000300: ...
001986 p.000300:
001987 p.000300: ...
001988 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
001989 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
001990 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
001991 p.000300: 001501 p.000036: 36
001992 p.000300: 001502 p.000036:
...

...
002164 p.000300: 000307 p.000007:
002165 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
002166 p.000300: 000309 p.000007: Research involving:
002167 p.000300: 000310 p.000007:
002168 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002169 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002170 p.000300: 000313 p.000007:
002171 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002172 p.000300: research
002173 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
002310 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002311 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002312 p.000300: Scotland ‘A’
002313 p.000300: 001496 p.000035: REC).
002314 p.000300: 001497 p.000035: Research that may need a full review
002315 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
002316 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
002317 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
002318 p.000300: 001501 p.000036: 36
002319 p.000300: 001502 p.000036:
...

...
002400 p.000300: 000307 p.000007:
002401 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
002402 p.000300: 000309 p.000007: Research involving:
002403 p.000300: 000310 p.000007:
002404 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002405 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002406 p.000300: 000313 p.000007:
002407 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002408 p.000300: research
002409 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
002500 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002501 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002502 p.000300: Scotland ‘A’
002503 p.000300: 001496 p.000035: REC).
002504 p.000300: 001497 p.000035: Research that may need a full review
002505 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
002506 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
002507 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
002508 p.000300: 001501 p.000036: 36
002509 p.000300: 001502 p.000036:
...

...
002737 p.000300: (return to top)
002738 p.000300: ...
002739 p.000300: 000309 p.000007: Research involving:
002740 p.000300: 000310 p.000007:
002741 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002742 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002743 p.000300: 000313 p.000007:
002744 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002745 p.000300: research
002746 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
002805 p.000300: 001112 p.000027: 2005 and the Adults with Incapacity (Scotland) Act 2000, and any projects that involve participants who fall under
002806 p.000300: 001113 p.000027: these Acts must be reviewed by a ‘recognised’ REC operating under the GAfREC
002807 p.000300: (http://www.ukbiobank.ac.uk/ethics/) or
002808 p.000300: 001114 p.000027: Scotland ‘A’ REC. The Mental Capacity Act 2005 applies to 16-17 year olds and adults (18 years and over)
002809 p.000300: who lack
002810 p.000300: 001115 p.000027: capacity to make decisions because of an impairment, mental disorder or ‘disturbance in the functioning of the
002811 p.000300: mind and
002812 p.000300: 001116 p.000027: brain’. Guidance on the Mental Capacity Act notes that lack of capacity to make a decision may be permanent or
002813 p.000300: 001117 p.000027: temporary. It could be state-related (eg due to drug or alcohol use, or because of the person’s emotional state at
002814 p.000300: the
...

...
002892 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002893 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002894 p.000300: Scotland ‘A’
002895 p.000300: 001496 p.000035: REC).
002896 p.000300: 001497 p.000035: Research that may need a full review
002897 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
002898 p.000300: ...
002899 p.000300:
002900 p.000300: ...
002901 p.000300: 001515 p.000036: Will the study involve prolonged or repetitive testing?
...

...
004037 p.000300: cadavers Cadavers
004038 p.000300: capacity Fetus/Neonate
004039 p.000300: child Child
004040 p.000300: children Child
004041 p.000300: coercion Presence of Coercion
004042 p.000300: cognitive Cognitive Impairment
004043 p.000300: cognitive impairment Cognitive Impairment
004044 p.000300: cultural Cultural Differences
004045 p.000300: culture Cultural Differences
004046 p.000300: deceased Linguistic Proficiency
004047 p.000300: dependence Drug Dependence
...

...
004059 p.000300: health Health
004060 p.000300: hiv HIV/AIDS
004061 p.000300: home Property Ownership
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
...

...
004097 p.000300:
004098 p.000300: Indicator Peers (Indicators in Same Vulnerabilty)
004099 p.000300: Indicator Peers
004100 p.000300: child ['children', 'vulnerable']
004101 p.000300: children ['child', 'vulnerable']
004102 p.000300: cognitive ['cognitive impairment', 'impairment', 'impaired']
004103 p.000300: cognitive impairment ['cognitive', 'impairment', 'impaired']
004104 p.000300: cultural ['culture']
004105 p.000300: culture ['cultural']
004106 p.000300: drug ['influence']
004107 p.000300: economic ['poor']
004108 p.000300: education ['educational']
004109 p.000300: educational ['education']
004110 p.000300: engaged ['single']
004111 p.000300: ['cognitive', 'cognitive impairment',
004112 p.000300: impaired
004113 p.000300: 'impairment']
004114 p.000300: impairment ['cognitive', 'cognitive impairment', 'impaired']
004115 p.000300: influence ['drug']
004116 p.000300: party ['political']
004117 p.000300: political ['party']
004118 p.000300: poor ['economic']
...

...
004160 p.000300: General/Other Laboratory Staff usage
004161 p.000300: General/Other Presence of Coercion coercion
004162 p.000300: General/Other Relationship to Authority authority
004163 p.000300: General/Other Undue Influence undue influence
004164 p.000300: Health Cadavers cadavers
004165 p.000300: Health Cognitive Impairment cognitive
004166 p.000300: Health Cognitive Impairment cognitive impairment
004167 p.000300: Health Cognitive Impairment impaired
004168 p.000300: Health Cognitive Impairment impairment
004169 p.000300: Health Drug Dependence dependence
004170 p.000300: Health Drug Usage drug
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
...

Health / Drug Dependence

Searching for indicator dependence:

(return to top)
...
001037 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
001038 p.000300: 001501 p.000036: 36
001039 p.000300: 001502 p.000036:
001040 p.000300: ...
001041 p.000300:
001042 p.000300: Health / Drug Dependence
001043 p.000300: Searching for indicator dependence:
001044 p.000300:
001045 p.000300: (return to top)
001046 p.000300: ...
001047 p.000300: 000294 p.000007: a short lead time and are commissioned in response to a demand of pressing importance. Most RECs only permit
001048 p.000300: expedited
001049 p.000300: 000295 p.000007: review in exceptional and clearly justified cases. Such exceptions may include external drivers which are beyond the
001050 p.000300: 000296 p.000007: control of the researchers (eg access to a sample) which mean that ethics clearance is required within a short
001051 p.000300: 000297 p.000007: timescale, or when perhaps fieldwork is linked to a particular event or period that is outside the researcher’s
001052 p.000300: 000298 p.000007: control. An expedited review should meet the criteria required for a full review and should not be carried out by REC
001053 p.000300: 000299 p.000007: members who are in a position of dependence with the applicant which could be perceived as a conflict of interest.
001054 p.000300: 000300 p.000007:
001055 p.000300: 000301 p.000007: It is the responsibility of the researcher or research team, guided by standards set by their professional societies,
001056 p.000300: 000302 p.000007: disciplinary bodies and ROs to determine whether their project should be subject to a light-touch or full review.
001057 p.000300: 000303 p.000007: However, the REC is expected to ensure that the appropriate ethics review is undertaken. The following section
...

...
001791 p.000300: expedited
001792 p.000300: 000295 p.000007: review in exceptional and clearly justified cases. Such exceptions may include external drivers which are beyond the
001793 p.000300: 000296 p.000007: control of the researchers (eg access to a sample) which mean that ethics clearance is required within a short
001794 p.000300: 000297 p.000007: timescale, or when perhaps fieldwork is linked to a particular event or period that is outside the researcher’s
001795 p.000300: 000298 p.000007: control. An expedited review should meet the criteria required for a full review and should not be carried out by REC
001796 p.000300: 000299 p.000007: members who are in a position of dependence with the applicant which could be perceived as a conflict of interest.
001797 p.000300: 000300 p.000007:
001798 p.000300: ...
001799 p.000300: ...
001800 p.000300: 000341 p.000008:
...

...
004042 p.000300: cognitive Cognitive Impairment
004043 p.000300: cognitive impairment Cognitive Impairment
004044 p.000300: cultural Cultural Differences
004045 p.000300: culture Cultural Differences
004046 p.000300: deceased Linguistic Proficiency
004047 p.000300: dependence Drug Dependence
004048 p.000300: dependent Dependent
004049 p.000300: disability Mentally Disabled
004050 p.000300: drug Drug Usage
004051 p.000300: economic Economic/Poverty
...

...
004164 p.000300: Health Cadavers cadavers
004165 p.000300: Health Cognitive Impairment cognitive
004166 p.000300: Health Cognitive Impairment cognitive impairment
004167 p.000300: Health Cognitive Impairment impaired
004168 p.000300: Health Cognitive Impairment impairment
004169 p.000300: Health Drug Dependence dependence
004170 p.000300: Health Drug Usage drug
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
...

Health / Drug Usage

Searching for indicator drug:

(return to top)
...
000459 p.000300: 001114 p.000027: Scotland ‘A’ REC. The Mental Capacity Act 2005 applies to 16-17 year olds and adults (18 years and over)
000460 p.000300: who lack
000461 p.000300: 001115 p.000027: capacity to make decisions because of an impairment, mental disorder or ‘disturbance in the functioning of the
000462 p.000300: mind and
000463 p.000300: 001116 p.000027: brain’. Guidance on the Mental Capacity Act notes that lack of capacity to make a decision may be permanent or
000464 p.000300: 001117 p.000027: temporary. It could be state-related (eg due to drug or alcohol use, or because of the person’s emotional state at
000465 p.000300: the
000466 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
000467 p.000300: provisions for
000468 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
...

...
000973 p.000300: Searching for indicator impaired:
000974 p.000300:
000975 p.000300: (return to top)
000976 p.000300: ...
000977 p.000300: 001116 p.000027: brain’. Guidance on the Mental Capacity Act notes that lack of capacity to make a decision may be permanent or
000978 p.000300: 001117 p.000027: temporary. It could be state-related (eg due to drug or alcohol use, or because of the person’s emotional state at
000979 p.000300: the
000980 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
000981 p.000300: provisions for
000982 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
...

...
001016 p.000300: 001114 p.000027: Scotland ‘A’ REC. The Mental Capacity Act 2005 applies to 16-17 year olds and adults (18 years and over)
001017 p.000300: who lack
001018 p.000300: 001115 p.000027: capacity to make decisions because of an impairment, mental disorder or ‘disturbance in the functioning of the
001019 p.000300: mind and
001020 p.000300: 001116 p.000027: brain’. Guidance on the Mental Capacity Act notes that lack of capacity to make a decision may be permanent or
001021 p.000300: 001117 p.000027: temporary. It could be state-related (eg due to drug or alcohol use, or because of the person’s emotional state at
001022 p.000300: the
001023 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
001024 p.000300: provisions for
001025 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
...

...
001037 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
001038 p.000300: 001501 p.000036: 36
001039 p.000300: 001502 p.000036:
001040 p.000300: ...
001041 p.000300:
001042 p.000300: Health / Drug Dependence
001043 p.000300: Searching for indicator dependence:
001044 p.000300:
001045 p.000300: (return to top)
001046 p.000300: ...
...

...
001056 p.000300: 000302 p.000007: disciplinary bodies and ROs to determine whether their project should be subject to a light-touch or full review.
001057 p.000300: 000303 p.000007: However, the REC is expected to ensure that the appropriate ethics review is undertaken. The following section
001058 p.000300: provides
001059 p.000300: ...
001060 p.000300:
001061 p.000300: Health / Drug Usage
001062 p.000300: Searching for indicator drug:
001063 p.000300:
001064 p.000300: (return to top)
001065 p.000300: ...
001066 p.000300: 001112 p.000027: 2005 and the Adults with Incapacity (Scotland) Act 2000, and any projects that involve participants who fall under
...

...
001069 p.000300: 001114 p.000027: Scotland ‘A’ REC. The Mental Capacity Act 2005 applies to 16-17 year olds and adults (18 years and over)
001070 p.000300: who lack
001071 p.000300: 001115 p.000027: capacity to make decisions because of an impairment, mental disorder or ‘disturbance in the functioning of the
001072 p.000300: mind and
001073 p.000300: 001116 p.000027: brain’. Guidance on the Mental Capacity Act notes that lack of capacity to make a decision may be permanent or
001074 p.000300: 001117 p.000027: temporary. It could be state-related (eg due to drug or alcohol use, or because of the person’s emotional state at
001075 p.000300: the
001076 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
001077 p.000300: provisions for
001078 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
...

...
001084 p.000300: 001502 p.000036:
001085 p.000300: 001503 p.000036: access to the groups or individuals to be recruited? (eg employees, students at school, members of self- help group,
001086 p.000300: 001504 p.000036: residents of nursing home?)
001087 p.000300: 001505 p.000036: Will it be necessary for participants to take part in the study without their knowledge and consent at the time? (eg
001088 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
001089 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
001090 p.000300: 001508 p.000036: lives)
001091 p.000300: 001509 p.000036: Are drugs, placebos or other substances (eg food substances, vitamins) to be administered to the study participants,
001092 p.000300: or
001093 p.000300: 001510 p.000036: will the study involve invasive, intrusive or potentially harmful procedures of any kind?
...

...
001493 p.000300: Health / Physically Ill
001494 p.000300: Searching for indicator illness:
001495 p.000300:
001496 p.000300: (return to top)
001497 p.000300: ...
001498 p.000300: 001117 p.000027: temporary. It could be state-related (eg due to drug or alcohol use, or because of the person’s emotional state at
001499 p.000300: the
001500 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
001501 p.000300: provisions for
001502 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
...

...
001992 p.000300: 001502 p.000036:
001993 p.000300: 001503 p.000036: access to the groups or individuals to be recruited? (eg employees, students at school, members of self- help group,
001994 p.000300: 001504 p.000036: residents of nursing home?)
001995 p.000300: 001505 p.000036: Will it be necessary for participants to take part in the study without their knowledge and consent at the time? (eg
001996 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
001997 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
001998 p.000300: ...
001999 p.000300:
002000 p.000300: ...
002001 p.000300: 001703 p.000040: research. Broad consent means consenting to a framework for future research of certain types. Included in this
...

...
002808 p.000300: 001114 p.000027: Scotland ‘A’ REC. The Mental Capacity Act 2005 applies to 16-17 year olds and adults (18 years and over)
002809 p.000300: who lack
002810 p.000300: 001115 p.000027: capacity to make decisions because of an impairment, mental disorder or ‘disturbance in the functioning of the
002811 p.000300: mind and
002812 p.000300: 001116 p.000027: brain’. Guidance on the Mental Capacity Act notes that lack of capacity to make a decision may be permanent or
002813 p.000300: 001117 p.000027: temporary. It could be state-related (eg due to drug or alcohol use, or because of the person’s emotional state at
002814 p.000300: the
002815 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
002816 p.000300: provisions for
002817 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
...

...
002985 p.000300: 001502 p.000036:
002986 p.000300: 001503 p.000036: access to the groups or individuals to be recruited? (eg employees, students at school, members of self- help group,
002987 p.000300: 001504 p.000036: residents of nursing home?)
002988 p.000300: 001505 p.000036: Will it be necessary for participants to take part in the study without their knowledge and consent at the time? (eg
002989 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
002990 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
002991 p.000300: 001508 p.000036: lives)
002992 p.000300: ...
002993 p.000300:
002994 p.000300: Social / Incarcerated
...

...
003271 p.000300: 001502 p.000036:
003272 p.000300: 001503 p.000036: access to the groups or individuals to be recruited? (eg employees, students at school, members of self- help group,
003273 p.000300: 001504 p.000036: residents of nursing home?)
003274 p.000300: 001505 p.000036: Will it be necessary for participants to take part in the study without their knowledge and consent at the time? (eg
003275 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
003276 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
003277 p.000300: 001508 p.000036: lives)
003278 p.000300: ...
003279 p.000300:
003280 p.000300: Social / Racial Minority
...

...
004042 p.000300: cognitive Cognitive Impairment
004043 p.000300: cognitive impairment Cognitive Impairment
004044 p.000300: cultural Cultural Differences
004045 p.000300: culture Cultural Differences
004046 p.000300: deceased Linguistic Proficiency
004047 p.000300: dependence Drug Dependence
004048 p.000300: dependent Dependent
004049 p.000300: disability Mentally Disabled
004050 p.000300: drug Drug Usage
004051 p.000300: economic Economic/Poverty
004052 p.000300: education Educational
004053 p.000300: educational Educational
004054 p.000300: elderly Elderly
...

...
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
004070 p.000300: minor Youth/Minors
004071 p.000300: nursing home In Nursing Home
...

...
004101 p.000300: children ['child', 'vulnerable']
004102 p.000300: cognitive ['cognitive impairment', 'impairment', 'impaired']
004103 p.000300: cognitive impairment ['cognitive', 'impairment', 'impaired']
004104 p.000300: cultural ['culture']
004105 p.000300: culture ['cultural']
004106 p.000300: drug ['influence']
004107 p.000300: economic ['poor']
004108 p.000300: education ['educational']
004109 p.000300: educational ['education']
004110 p.000300: engaged ['single']
004111 p.000300: ['cognitive', 'cognitive impairment',
004112 p.000300: impaired
004113 p.000300: 'impairment']
004114 p.000300: impairment ['cognitive', 'cognitive impairment', 'impaired']
004115 p.000300: influence ['drug']
004116 p.000300: party ['political']
004117 p.000300: political ['party']
004118 p.000300: poor ['economic']
004119 p.000300: religious ['special']
...

...
004164 p.000300: Health Cadavers cadavers
004165 p.000300: Health Cognitive Impairment cognitive
004166 p.000300: Health Cognitive Impairment cognitive impairment
004167 p.000300: Health Cognitive Impairment impaired
004168 p.000300: Health Cognitive Impairment impairment
004169 p.000300: Health Drug Dependence dependence
004170 p.000300: Health Drug Usage drug
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
004174 p.000300: Health Mentally Disabled disability
004175 p.000300: Health Motherhood/Family family
...

Searching for indicator drug usage:

(return to top)
...
001056 p.000300: 000302 p.000007: disciplinary bodies and ROs to determine whether their project should be subject to a light-touch or full review.
001057 p.000300: 000303 p.000007: However, the REC is expected to ensure that the appropriate ethics review is undertaken. The following section
001058 p.000300: provides
001059 p.000300: ...
001060 p.000300:
001061 p.000300: Health / Drug Usage
001062 p.000300: Searching for indicator drug:
001063 p.000300:
001064 p.000300: (return to top)
001065 p.000300: ...
001066 p.000300: 001112 p.000027: 2005 and the Adults with Incapacity (Scotland) Act 2000, and any projects that involve participants who fall under
...

...
004042 p.000300: cognitive Cognitive Impairment
004043 p.000300: cognitive impairment Cognitive Impairment
004044 p.000300: cultural Cultural Differences
004045 p.000300: culture Cultural Differences
004046 p.000300: deceased Linguistic Proficiency
004047 p.000300: dependence Drug Dependence
004048 p.000300: dependent Dependent
004049 p.000300: disability Mentally Disabled
004050 p.000300: drug Drug Usage
004051 p.000300: economic Economic/Poverty
004052 p.000300: education Educational
004053 p.000300: educational Educational
004054 p.000300: elderly Elderly
...

...
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
004070 p.000300: minor Youth/Minors
004071 p.000300: nursing home In Nursing Home
...

...
004164 p.000300: Health Cadavers cadavers
004165 p.000300: Health Cognitive Impairment cognitive
004166 p.000300: Health Cognitive Impairment cognitive impairment
004167 p.000300: Health Cognitive Impairment impaired
004168 p.000300: Health Cognitive Impairment impairment
004169 p.000300: Health Drug Dependence dependence
004170 p.000300: Health Drug Usage drug
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
004174 p.000300: Health Mentally Disabled disability
004175 p.000300: Health Motherhood/Family family
...

Searching for indicator influence:

(return to top)
...
000376 p.000300: ...
000377 p.000300: 000128 p.000003:
000378 p.000300: 000129 p.000003: Our principles and expectations for ethical research
000379 p.000300: 000130 p.000003: There are six key principles of ethical research that we expect to be addressed:
000380 p.000300: 000131 p.000003:
000381 p.000300: 000132 p.000003: • Research participants should take part voluntarily, free from any coercion or undue influence, and their rights,
000382 p.000300: 000133 p.000003: dignity and (when possible) autonomy should be respected and appropriately protected.
000383 p.000300: 000134 p.000003:
000384 p.000300: 000135 p.000003: • Research should be worthwhile and provide value that outweighs any risk or harm. Researchers should aim to
000385 p.000300: 000136 p.000003: maximise the benefit of the research and minimise potential risk of harm to participants and researchers. All potential
...

...
000618 p.000300: 000127 p.000003: 3
000619 p.000300: 000128 p.000003:
000620 p.000300: 000129 p.000003: Our principles and expectations for ethical research
000621 p.000300: 000130 p.000003: There are six key principles of ethical research that we expect to be addressed:
000622 p.000300: 000131 p.000003:
000623 p.000300: 000132 p.000003: • Research participants should take part voluntarily, free from any coercion or undue influence, and their rights,
000624 p.000300: 000133 p.000003: dignity and (when possible) autonomy should be respected and appropriately protected.
000625 p.000300: 000134 p.000003:
000626 p.000300: 000135 p.000003: • Research should be worthwhile and provide value that outweighs any risk or harm. Researchers should aim to
000627 p.000300: 000136 p.000003: maximise the benefit of the research and minimise potential risk of harm to participants and researchers. All potential
...

...
000646 p.000300: 001211 p.000029: consent. This approach means that participants consent to a framework for future research of certain types, not just to
000647 p.000300: 001212 p.000029: consent for a particular project.
000648 p.000300: 001213 p.000029:
000649 p.000300: 001214 p.000029: What does it mean that research participants should participate voluntarily, free from any coercion?
000650 p.000300: 001215 p.000029: In all cases of research, researchers should inform participants of their right to refuse to participate or withdraw
000651 p.000300: 001216 p.000029: from the investigation whenever and for whatever reason they wish. There should be no coercion or undue influence
000652 p.000300: of
000653 p.000300: 001217 p.000029: research participants to take part in the research.
000654 p.000300: 001218 p.000029:
000655 p.000300: 001219 p.000029: Research participants, however, may be given small monetary reimbursement for their time and expenses involved.
...

...
000839 p.000300: 002085 p.000049: participants. Every research participant will be given a one-page 'project information sheet' that outlines the purpose
000840 p.000300: 002086 p.000049: of the study, who is undertaking and financing the study, and
000841 p.000300: 002087 p.000050: 50
000842 p.000300: ...
000843 p.000300:
000844 p.000300: General/Other / Undue Influence
000845 p.000300: Searching for indicator undue influence:
000846 p.000300:
000847 p.000300: (return to top)
000848 p.000300: ...
000849 p.000300: 000127 p.000003: 3
000850 p.000300: 000128 p.000003:
000851 p.000300: 000129 p.000003: Our principles and expectations for ethical research
000852 p.000300: 000130 p.000003: There are six key principles of ethical research that we expect to be addressed:
000853 p.000300: 000131 p.000003:
000854 p.000300: 000132 p.000003: • Research participants should take part voluntarily, free from any coercion or undue influence, and their rights,
000855 p.000300: 000133 p.000003: dignity and (when possible) autonomy should be respected and appropriately protected.
000856 p.000300: 000134 p.000003:
000857 p.000300: 000135 p.000003: • Research should be worthwhile and provide value that outweighs any risk or harm. Researchers should aim to
000858 p.000300: 000136 p.000003: maximise the benefit of the research and minimise potential risk of harm to participants and researchers. All potential
...

...
000862 p.000300: 000499 p.000012: ROs are expected to monitor the operation of RECs for which they are responsible and the decisions they take in
000863 p.000300: 000500 p.000012: relation to social science proposals, according to the standards and guidelines set out here.
000864 p.000300: 000501 p.000012:
000865 p.000300: 000502 p.000012: Independence of Research Ethics Committees
000866 p.000300: 000503 p.000012: ROs are responsible for ensuring that the RECs within their organisation act independently. They should be free from
000867 p.000300: 000504 p.000012: bias and undue influence from the RO in which they are located, from the researchers whose proposals they consider
000868 p.000300: and
000869 p.000300: 000505 p.000012: from the personal or financial interests of their members. The independence of a REC is founded on their membership,
000870 p.000300: on
000871 p.000300: 000506 p.000012: strict rules regarding conflict of interests and on regular monitoring of and accountability for their decisions.
...

...
000877 p.000300: 001211 p.000029: consent. This approach means that participants consent to a framework for future research of certain types, not just to
000878 p.000300: 001212 p.000029: consent for a particular project.
000879 p.000300: 001213 p.000029:
000880 p.000300: 001214 p.000029: What does it mean that research participants should participate voluntarily, free from any coercion?
000881 p.000300: 001215 p.000029: In all cases of research, researchers should inform participants of their right to refuse to participate or withdraw
000882 p.000300: 001216 p.000029: from the investigation whenever and for whatever reason they wish. There should be no coercion or undue influence
000883 p.000300: of
000884 p.000300: 001217 p.000029: research participants to take part in the research.
000885 p.000300: 001218 p.000029:
000886 p.000300: 001219 p.000029: Research participants, however, may be given small monetary reimbursement for their time and expenses involved.
...

...
001092 p.000300: or
001093 p.000300: 001510 p.000036: will the study involve invasive, intrusive or potentially harmful procedures of any kind?
001094 p.000300: 001511 p.000036: Will tissue samples (including blood or saliva) be obtained from participants?
001095 p.000300: ...
001096 p.000300:
001097 p.000300: Searching for indicator influence:
001098 p.000300:
001099 p.000300: (return to top)
001100 p.000300: ...
001101 p.000300: 000127 p.000003: 3
001102 p.000300: 000128 p.000003:
001103 p.000300: 000129 p.000003: Our principles and expectations for ethical research
001104 p.000300: 000130 p.000003: There are six key principles of ethical research that we expect to be addressed:
001105 p.000300: 000131 p.000003:
001106 p.000300: 000132 p.000003: • Research participants should take part voluntarily, free from any coercion or undue influence, and their rights,
001107 p.000300: 000133 p.000003: dignity and (when possible) autonomy should be respected and appropriately protected.
001108 p.000300: 000134 p.000003:
001109 p.000300: 000135 p.000003: • Research should be worthwhile and provide value that outweighs any risk or harm. Researchers should aim to
001110 p.000300: 000136 p.000003: maximise the benefit of the research and minimise potential risk of harm to participants and researchers. All potential
...

...
001114 p.000300: 000499 p.000012: ROs are expected to monitor the operation of RECs for which they are responsible and the decisions they take in
001115 p.000300: 000500 p.000012: relation to social science proposals, according to the standards and guidelines set out here.
001116 p.000300: 000501 p.000012:
001117 p.000300: 000502 p.000012: Independence of Research Ethics Committees
001118 p.000300: 000503 p.000012: ROs are responsible for ensuring that the RECs within their organisation act independently. They should be free from
001119 p.000300: 000504 p.000012: bias and undue influence from the RO in which they are located, from the researchers whose proposals they consider
001120 p.000300: and
001121 p.000300: 000505 p.000012: from the personal or financial interests of their members. The independence of a REC is founded on their membership,
001122 p.000300: on
001123 p.000300: 000506 p.000012: strict rules regarding conflict of interests and on regular monitoring of and accountability for their decisions.
...

...
001129 p.000300: 001211 p.000029: consent. This approach means that participants consent to a framework for future research of certain types, not just to
001130 p.000300: 001212 p.000029: consent for a particular project.
001131 p.000300: 001213 p.000029:
001132 p.000300: 001214 p.000029: What does it mean that research participants should participate voluntarily, free from any coercion?
001133 p.000300: 001215 p.000029: In all cases of research, researchers should inform participants of their right to refuse to participate or withdraw
001134 p.000300: 001216 p.000029: from the investigation whenever and for whatever reason they wish. There should be no coercion or undue influence
001135 p.000300: of
001136 p.000300: 001217 p.000029: research participants to take part in the research.
001137 p.000300: 001218 p.000029:
001138 p.000300: 001219 p.000029: Research participants, however, may be given small monetary reimbursement for their time and expenses involved.
...

...
003409 p.000300: 000499 p.000012: ROs are expected to monitor the operation of RECs for which they are responsible and the decisions they take in
003410 p.000300: 000500 p.000012: relation to social science proposals, according to the standards and guidelines set out here.
003411 p.000300: 000501 p.000012:
003412 p.000300: 000502 p.000012: Independence of Research Ethics Committees
003413 p.000300: 000503 p.000012: ROs are responsible for ensuring that the RECs within their organisation act independently. They should be free from
003414 p.000300: 000504 p.000012: bias and undue influence from the RO in which they are located, from the researchers whose proposals they consider
003415 p.000300: and
003416 p.000300: ...
003417 p.000300:
003418 p.000300: ...
...

...
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
004070 p.000300: minor Youth/Minors
004071 p.000300: nursing home In Nursing Home
...

...
004084 p.000300:
004085 p.000300: social Social
004086 p.000300: special Religion
004087 p.000300: student Student
004088 p.000300: threat Threat of Stigma
004089 p.000300: undue influence Undue Influence
004090 p.000300: union Trade Union Membership
004091 p.000300: usage Laboratory Staff
004092 p.000300: violence Threat of Violence
004093 p.000300: vulnerable Child
...

...
004101 p.000300: children ['child', 'vulnerable']
004102 p.000300: cognitive ['cognitive impairment', 'impairment', 'impaired']
004103 p.000300: cognitive impairment ['cognitive', 'impairment', 'impaired']
004104 p.000300: cultural ['culture']
004105 p.000300: culture ['cultural']
004106 p.000300: drug ['influence']
004107 p.000300: economic ['poor']
004108 p.000300: education ['educational']
004109 p.000300: educational ['education']
004110 p.000300: engaged ['single']
004111 p.000300: ['cognitive', 'cognitive impairment',
004112 p.000300: impaired
004113 p.000300: 'impairment']
004114 p.000300: impairment ['cognitive', 'cognitive impairment', 'impaired']
004115 p.000300: influence ['drug']
004116 p.000300: party ['political']
004117 p.000300: political ['party']
004118 p.000300: poor ['economic']
004119 p.000300: religious ['special']
...

...
004158 p.000300: General/Other Impaired Autonomy autonomy
004159 p.000300: General/Other Incapacitated incapacity
004160 p.000300: General/Other Laboratory Staff usage
004161 p.000300: General/Other Presence of Coercion coercion
004162 p.000300: General/Other Relationship to Authority authority
004163 p.000300: General/Other Undue Influence undue influence
004164 p.000300: Health Cadavers cadavers
004165 p.000300: Health Cognitive Impairment cognitive
004166 p.000300: Health Cognitive Impairment cognitive impairment
004167 p.000300: Health Cognitive Impairment impaired
004168 p.000300: Health Cognitive Impairment impairment
004169 p.000300: Health Drug Dependence dependence
004170 p.000300: Health Drug Usage drug
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
004174 p.000300: Health Mentally Disabled disability
004175 p.000300: Health Motherhood/Family family
...

Health / HIV/AIDS

Searching for indicator aids:

(return to top)
...
001138 p.000300: 001219 p.000029: Research participants, however, may be given small monetary reimbursement for their time and expenses involved.
001139 p.000300: Payment
001140 p.000300: 001220 p.000029: should not override the principles of freely given and fully informed consent. Participants should know before they
001141 p.000300: ...
001142 p.000300:
001143 p.000300: Health / HIV/AIDS
001144 p.000300: Searching for indicator hiv:
001145 p.000300:
001146 p.000300: (return to top)
001147 p.000300: ...
001148 p.000300: 001078 p.000026: generate. This is especially pertinent in the context of health-related research. But, in addition, social science
...

...
004053 p.000300: educational Educational
004054 p.000300: elderly Elderly
004055 p.000300: engaged Marital Status
004056 p.000300: ethnic Ethnicity
004057 p.000300: family Motherhood/Family
004058 p.000300: gender Gender
004059 p.000300: health Health
004060 p.000300: hiv HIV/AIDS
004061 p.000300: home Property Ownership
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
...

...
004167 p.000300: Health Cognitive Impairment impaired
004168 p.000300: Health Cognitive Impairment impairment
004169 p.000300: Health Drug Dependence dependence
004170 p.000300: Health Drug Usage drug
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
004174 p.000300: Health Mentally Disabled disability
004175 p.000300: Health Motherhood/Family family
004176 p.000300: Health Physically Ill illness
...

Searching for indicator hiv:

(return to top)
...
001138 p.000300: 001219 p.000029: Research participants, however, may be given small monetary reimbursement for their time and expenses involved.
001139 p.000300: Payment
001140 p.000300: 001220 p.000029: should not override the principles of freely given and fully informed consent. Participants should know before they
001141 p.000300: ...
001142 p.000300:
001143 p.000300: Health / HIV/AIDS
001144 p.000300: Searching for indicator hiv:
001145 p.000300:
001146 p.000300: (return to top)
001147 p.000300: ...
001148 p.000300: 001078 p.000026: generate. This is especially pertinent in the context of health-related research. But, in addition, social science
001149 p.000300: 001079 p.000026: raises a wider range of risks that needs to be considered by RECs. These include risk to a participant’s personal
001150 p.000300: 001080 p.000026: social standing, privacy, personal values and beliefs, their links tofamily and the wider community, and their
001151 p.000300: 001081 p.000026: position within occupational settings, as well as the adverse effects of revealing information that relates to illegal,
001152 p.000300: 001082 p.000026: sexual or deviant behaviour. Research, though it may carry no physical risk, can be disruptive and damaging to
001153 p.000300: research
001154 p.000300: 001083 p.000026: participants as individuals or to whole communities or categories of people, such as those with HIV infection.
001155 p.000300: 001084 p.000026:
001156 p.000300: 001085 p.000026: Can all risks be avoided?
001157 p.000300: 001086 p.000026: Not all risks can, or in some cases should, be avoided, but it is important that researchers and RECs develop
001158 p.000300: awareness
...

...
001465 p.000300: 001079 p.000026: raises a wider range of risks that needs to be considered by RECs. These include risk to a participant’s personal
001466 p.000300: 001080 p.000026: social standing, privacy, personal values and beliefs, their links tofamily and the wider community, and their
001467 p.000300: 001081 p.000026: position within occupational settings, as well as the adverse effects of revealing information that relates to illegal,
001468 p.000300: 001082 p.000026: sexual or deviant behaviour. Research, though it may carry no physical risk, can be disruptive and damaging to
001469 p.000300: research
001470 p.000300: 001083 p.000026: participants as individuals or to whole communities or categories of people, such as those with HIV infection.
001471 p.000300: 001084 p.000026:
001472 p.000300: ...
001473 p.000300:
001474 p.000300: ...
...

...
001562 p.000300: 001079 p.000026: raises a wider range of risks that needs to be considered by RECs. These include risk to a participant’s personal
001563 p.000300: 001080 p.000026: social standing, privacy, personal values and beliefs, their links tofamily and the wider community, and their
001564 p.000300: 001081 p.000026: position within occupational settings, as well as the adverse effects of revealing information that relates to illegal,
001565 p.000300: 001082 p.000026: sexual or deviant behaviour. Research, though it may carry no physical risk, can be disruptive and damaging to
001566 p.000300: research
001567 p.000300: 001083 p.000026: participants as individuals or to whole communities or categories of people, such as those with HIV infection.
001568 p.000300: 001084 p.000026:
001569 p.000300: 001085 p.000026: Can all risks be avoided?
001570 p.000300: ...
001571 p.000300:
...

...
003572 p.000300: 001079 p.000026: raises a wider range of risks that needs to be considered by RECs. These include risk to a participant’s personal
003573 p.000300: 001080 p.000026: social standing, privacy, personal values and beliefs, their links tofamily and the wider community, and their
003574 p.000300: 001081 p.000026: position within occupational settings, as well as the adverse effects of revealing information that relates to illegal,
003575 p.000300: 001082 p.000026: sexual or deviant behaviour. Research, though it may carry no physical risk, can be disruptive and damaging to
003576 p.000300: research
003577 p.000300: 001083 p.000026: participants as individuals or to whole communities or categories of people, such as those with HIV infection.
003578 p.000300: 001084 p.000026:
003579 p.000300: ...
003580 p.000300:
003581 p.000300: ...
...

...
004055 p.000300: engaged Marital Status
004056 p.000300: ethnic Ethnicity
004057 p.000300: family Motherhood/Family
004058 p.000300: gender Gender
004059 p.000300: health Health
004060 p.000300: hiv HIV/AIDS
004061 p.000300: home Property Ownership
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
...

...
004167 p.000300: Health Cognitive Impairment impaired
004168 p.000300: Health Cognitive Impairment impairment
004169 p.000300: Health Drug Dependence dependence
004170 p.000300: Health Drug Usage drug
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
004174 p.000300: Health Mentally Disabled disability
004175 p.000300: Health Motherhood/Family family
004176 p.000300: Health Physically Ill illness
...

Health / Health

Searching for indicator health:

(return to top)
...
000075 p.000300: 001901 p.000045: • Respect Project (2004). An EU code of Ethics for socio-economic research
000076 p.000300: www.respectproject.org/code/index.php
000077 p.000300: 001902 p.000045: • Social Research Association (2003). Ethics Guidelines http://the-sra.org.uk/research- ethics/ethics-guidelines/
000078 p.000300: 001903 p.000045: • UK Data Service ethics advice: http://ukdataservice.ac.uk/manage-data/legal-ethical.aspx
000079 p.000300: 001904 p.000045: • UKRIO Code of Practice for Research www.ukrio.org/what-we-do/code-of-practice- for-research
000080 p.000300: 001905 p.000045: • Universities and Colleges Employer Association (2011). Guidance on Health and Safety in Fieldwork
000081 p.000300: ...
000082 p.000300:
000083 p.000300: ...
000084 p.000300: 002093 p.000050: confidentially is afforded. Where necessary, the project information sheet will be translated, although it is
...

...
000403 p.000300: Searching for indicator incapacity:
000404 p.000300:
000405 p.000300: (return to top)
000406 p.000300: ...
000407 p.000300: 000317 p.000007: • (http://www.legislation.gov.uk/ukpga/2005/9/contents ). Normally this will be a REC recognised by the Secretary of
000408 p.000300: 000318 p.000007: State and Welsh Ministers and operating under the Health Research Authority (HRA) Governance Arrangements for
000409 p.000300: Research
000410 p.000300: 000319 p.000007: Ethics Committees (GAfREC) (http://www.hra.nhs.uk/resources/research-legislation-and-
000411 p.000300: 000320 p.000007: governance/governance-arrangements-for-research-ethics- committees/#sthash.rH7OVRVy.dpuf). Research
000412 p.000300: conducted in
...

...
000469 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
000470 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
000471 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
000472 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
000473 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
000474 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
000475 p.000300: Capacity
000476 p.000300: 001126 p.000027: Act 2005 and consent for research
000477 p.000300: 001127 p.000027: (http://www.wales.gov.uk/dhss/publications/health/mentalhealth/mentalcapacityact/2117019
000478 p.000300: 001128 p.000027: /mcaconsente.pdf?lang=en) and Adults with Incapacity Act 2000- Code of Practice, Part 5
000479 p.000300: 001129 p.000027: (http://www.scotland.gov.uk/Publications/2010/10/20153801/4)).
000480 p.000300: 001130 p.000027:
000481 p.000300: 001131 p.000027: Is it legitimate to expose some research participants/organisations to risk?
...

...
000576 p.000300: ...
000577 p.000300: ...
000578 p.000300: 001974 p.000047: https://www.gov.uk/government/publications/mental-capacity-act-code-of-practice
000579 p.000300: 001975 p.000047: • HRA Mental Capacity Act 2005-Questions and Answers
000580 p.000300: 001976 p.000047: www.hra.nhs.uk/resources/research-legislation-and-governance/questions-and-answers- mental-capacity-act-2005/
000581 p.000300: 001977 p.000047: • Department of Health Mental Capacity Act and consent for research
000582 p.000300: 001978 p.000047: http://wales.gov.uk/dhss/publications/health/mentalhealth/mentalcapacityact/2117019/m caconsente.pdf?lang=en
000583 p.000300: 001979 p.000047: • Adults with Incapacity (Scotland) Act 2000 www.legislation.gov.uk/asp/2000/4/section/10
000584 p.000300: 001980 p.000047: • Adults with Incapacity Act 2000: Code of practice (2010) For practitioners authorised to carry out medical
000585 p.000300: 001981 p.000047: treatment or research under Part 5 of the Act www.scotland.gov.uk/Publications/2010/10/20153801/0
000586 p.000300: 001982 p.000047: • Adults with Incapacity (Ethics Committee) Scotland Regulations 2002
...

...
000721 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000722 p.000300: research
000723 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
000724 p.000300: 000316 p.000007:
000725 p.000300: 000317 p.000007: • (http://www.legislation.gov.uk/ukpga/2005/9/contents ). Normally this will be a REC recognised by the Secretary of
000726 p.000300: 000318 p.000007: State and Welsh Ministers and operating under the Health Research Authority (HRA) Governance Arrangements for
000727 p.000300: Research
000728 p.000300: 000319 p.000007: Ethics Committees (GAfREC) (http://www.hra.nhs.uk/resources/research-legislation-and-
000729 p.000300: 000320 p.000007: governance/governance-arrangements-for-research-ethics- committees/#sthash.rH7OVRVy.dpuf). Research
000730 p.000300: conducted in
...

...
000753 p.000300: 000531 p.000013: Remit and responsibilities of Research Ethics Committees
000754 p.000300: 000532 p.000013: RECs should provide supportive, reflexive governance to researchers and operate a system of ongoing monitoring and
000755 p.000300: 000533 p.000013: supportive reflection that promotes mutual learning for researchers and REC members. RECs are responsible for
000756 p.000300: reviewing
000757 p.000300: 000534 p.000013: all research involving human participants and personal data conducted under their auspices and undertaken by
000758 p.000300: 000535 p.000013: individuals employed by the organisation that does not come under the remit of the UK Health Departments and
000759 p.000300: Health
000760 p.000300: 000536 p.000013: Research Authority (http://www.hra.nhs.uk/). RECs should review research proposals in a way that is independent,
000761 p.000300: 000537 p.000013: competent and timely. In some circumstances RECs may authorise other sub-committees or their chair to conduct
000762 p.000300: reviews
000763 p.000300: 000538 p.000013: on research involving minimal risk on their behalf. These sub-committees and chair will have no conflicts of interest
...

...
000772 p.000300: 001337 p.000032: What happens when research involves tissue samples (including blood)?
000773 p.000300: 001338 p.000032: UK research involving human tissue (including blood) is subject to the Human Tissue Act 2004, or The Human Tissue
000774 p.000300: 001339 p.000032: (Scotland) Act 2006, and should adhere to the Codes of Practice issued by the Human Tissue Authority. Ethics
000775 p.000300: review
000776 p.000300: 001340 p.000032: should be obtained from a REC operating to the standards set out in the governance arrangements issued by the UK
000777 p.000300: Health
000778 p.000300: 001341 p.000032: Departments or other ethics committees for clinical trials of investigational medicinal products recognised by the
000779 p.000300: 001342 p.000032: United Kingdom Ethics Committee Authority (UKECA).
000780 p.000300: 001343 p.000032:
000781 p.000300: 001344 p.000032: Where research involves the need to secure tissue samples (including blood), participants should be informed of their
...

...
000796 p.000300: 001898 p.000045: • Market Research Society (2014). Code of Conduct https://www.mrs.org.uk/standards/code_of_conduct/
000797 p.000300: 001899 p.000045: • Nuffield Council on Bioethics (2009). Dementia: Ethical Issues
000798 p.000300: ...
000799 p.000300:
000800 p.000300: ...
000801 p.000300: 001906 p.000045: www.ucea.ac.uk/en/publications/index.cfm/guidance-on-health-and-safety- in-fieldwork
000802 p.000300: 001907 p.000045: • University of Durham and National Co-ordinating Centre for Public Engagement (NCCP) (2012) Community-based
000803 p.000300: 001908 p.000045: participatory research. A guide to ethical principles and practice.
000804 p.000300: 001909 p.000045: https://www.dur.ac.uk/resources/beacon/CBPREthicsGuidewebNovember20121.pdf
000805 p.000300: 001910 p.000045:
000806 p.000300: 001911 p.000045: Health research authority and NHS Research
000807 p.000300: 001912 p.000045: • Health Research Authority (HRA) www.hra.nhs.uk/
000808 p.000300: 001913 p.000045: • HRA guidance for applicants and research community www.hra.nhs.uk/research- community/
000809 p.000300: 001914 p.000045: • HRA decision tool (MRC/HRA): www.hra-decisiontools.org.uk/ethics
000810 p.000300: 001915 p.000045: • HRA Application process Flowchart www.hra.nhs.uk/documents/2014/05/rec-
000811 p.000300: 001916 p.000045: application-process-flowchart-v6-0-19-may-2014.pdf
000812 p.000300: ...
000813 p.000300:
000814 p.000300: ...
000815 p.000300: 001925 p.000046: membership/12-11-13-framework-complete.pdf
000816 p.000300: 001926 p.000046: • Department of Health (2011). Governance arrangements for research ethics committees: a harmonised edition
000817 p.000300: (updated
000818 p.000300: 001927 p.000046: April 2012) www.gov.uk/government/publications/health-research-ethics-committees-governance- arrangements
000819 p.000300: 001928 p.000046: • UK Health Departments, Research Governance Frameworks
000820 p.000300: 001929 p.000046: www.hra.nhs.uk/resources/research-legislation-and-governance/research-governance- frameworks/
000821 p.000300: 001930 p.000046: • Health Research Authority, Standard Operating Procedures for Research Ethics Committees (2015)
000822 p.000300: 001931 p.000046: http://www.hra.nhs.uk/resources/research-legislation-and- governance/standard-operating-procedures/
000823 p.000300: 001932 p.000046: • The Ministry of Defense Research Ethics Committees (MODREC)
000824 p.000300: www.science.mod.uk/engagement/modrec/modrec.aspx
000825 p.000300: 001933 p.000046: • Social Care Research Ethics Committee www.screc.org.uk
...

...
000886 p.000300: 001219 p.000029: Research participants, however, may be given small monetary reimbursement for their time and expenses involved.
000887 p.000300: Payment
000888 p.000300: 001220 p.000029: should not override the principles of freely given and fully informed consent. Participants should know before they
000889 p.000300: ...
000890 p.000300:
000891 p.000300: Health / Cadavers
000892 p.000300: Searching for indicator cadavers:
000893 p.000300:
000894 p.000300: (return to top)
000895 p.000300: ...
...

...
000905 p.000300: 001755 p.000041: test results including scholastic achievements).
000906 p.000300: 001756 p.000041:
000907 p.000300: 001757 p.000041: Freely-given informed consent: Informed consent entails giving sufficient information about the research and ensuring
000908 p.000300: ...
000909 p.000300:
000910 p.000300: Health / Cognitive Impairment
000911 p.000300: Searching for indicator cognitive:
000912 p.000300:
000913 p.000300: (return to top)
000914 p.000300: ...
...

...
000983 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
000984 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
000985 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
000986 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
000987 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
000988 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
000989 p.000300: Capacity
000990 p.000300: ...
000991 p.000300:
000992 p.000300: Searching for indicator impairment:
...

...
001037 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
001038 p.000300: 001501 p.000036: 36
001039 p.000300: 001502 p.000036:
001040 p.000300: ...
001041 p.000300:
001042 p.000300: Health / Drug Dependence
001043 p.000300: Searching for indicator dependence:
001044 p.000300:
001045 p.000300: (return to top)
001046 p.000300: ...
...

...
001056 p.000300: 000302 p.000007: disciplinary bodies and ROs to determine whether their project should be subject to a light-touch or full review.
001057 p.000300: 000303 p.000007: However, the REC is expected to ensure that the appropriate ethics review is undertaken. The following section
001058 p.000300: provides
001059 p.000300: ...
001060 p.000300:
001061 p.000300: Health / Drug Usage
001062 p.000300: Searching for indicator drug:
001063 p.000300:
001064 p.000300: (return to top)
001065 p.000300: ...
...

...
001138 p.000300: 001219 p.000029: Research participants, however, may be given small monetary reimbursement for their time and expenses involved.
001139 p.000300: Payment
001140 p.000300: 001220 p.000029: should not override the principles of freely given and fully informed consent. Participants should know before they
001141 p.000300: ...
001142 p.000300:
001143 p.000300: Health / HIV/AIDS
001144 p.000300: Searching for indicator hiv:
001145 p.000300:
001146 p.000300: (return to top)
001147 p.000300: ...
001148 p.000300: 001078 p.000026: generate. This is especially pertinent in the context of health-related research. But, in addition, social science
001149 p.000300: 001079 p.000026: raises a wider range of risks that needs to be considered by RECs. These include risk to a participant’s personal
001150 p.000300: 001080 p.000026: social standing, privacy, personal values and beliefs, their links tofamily and the wider community, and their
001151 p.000300: 001081 p.000026: position within occupational settings, as well as the adverse effects of revealing information that relates to illegal,
001152 p.000300: 001082 p.000026: sexual or deviant behaviour. Research, though it may carry no physical risk, can be disruptive and damaging to
...

...
001157 p.000300: 001086 p.000026: Not all risks can, or in some cases should, be avoided, but it is important that researchers and RECs develop
001158 p.000300: awareness
001159 p.000300: 001087 p.000026: of potential risks. Such risks may be difficult or impossible to quantify or anticipate in full prior to the start of a
001160 p.000300: ...
001161 p.000300:
001162 p.000300: Health / Health
001163 p.000300: Searching for indicator health:
001164 p.000300:
001165 p.000300: (return to top)
001166 p.000300: ...
001167 p.000300: 000313 p.000007:
001168 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001169 p.000300: research
001170 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
001171 p.000300: 000316 p.000007:
001172 p.000300: 000317 p.000007: • (http://www.legislation.gov.uk/ukpga/2005/9/contents ). Normally this will be a REC recognised by the Secretary of
001173 p.000300: 000318 p.000007: State and Welsh Ministers and operating under the Health Research Authority (HRA) Governance Arrangements for
001174 p.000300: Research
001175 p.000300: 000319 p.000007: Ethics Committees (GAfREC) (http://www.hra.nhs.uk/resources/research-legislation-and-
001176 p.000300: 000320 p.000007: governance/governance-arrangements-for-research-ethics- committees/#sthash.rH7OVRVy.dpuf). Research
001177 p.000300: conducted in
...

...
001180 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001181 p.000300: 000323 p.000008: 8
001182 p.000300: 000324 p.000008:
001183 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001184 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001185 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001186 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001187 p.000300: 000329 p.000008:
001188 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001189 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
001196 p.000300: member with
001197 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
001198 p.000300: expertise
001199 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
001200 p.000300: research
001201 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
001202 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
001203 p.000300: 000520 p.000012: professional care or counselling, and individuals with specific methodological expertise (for example, quantitative or
001204 p.000300: 000521 p.000012: qualitative methods) relevant to the research they review. A REC should include among its membership people who
001205 p.000300: are
...

...
001211 p.000300: 000531 p.000013: Remit and responsibilities of Research Ethics Committees
001212 p.000300: 000532 p.000013: RECs should provide supportive, reflexive governance to researchers and operate a system of ongoing monitoring and
001213 p.000300: 000533 p.000013: supportive reflection that promotes mutual learning for researchers and REC members. RECs are responsible for
001214 p.000300: reviewing
001215 p.000300: 000534 p.000013: all research involving human participants and personal data conducted under their auspices and undertaken by
001216 p.000300: 000535 p.000013: individuals employed by the organisation that does not come under the remit of the UK Health Departments and
001217 p.000300: Health
001218 p.000300: 000536 p.000013: Research Authority (http://www.hra.nhs.uk/). RECs should review research proposals in a way that is independent,
001219 p.000300: 000537 p.000013: competent and timely. In some circumstances RECs may authorise other sub-committees or their chair to conduct
001220 p.000300: reviews
001221 p.000300: 000538 p.000013: on research involving minimal risk on their behalf. These sub-committees and chair will have no conflicts of interest
...

...
001225 p.000300: 000919 p.000022: protection (https://ico.org.uk/for-organisations/guide-to-data- protection/).
001226 p.000300: 000920 p.000022:
001227 p.000300: 000921 p.000022: Legal requirements
001228 p.000300: 000922 p.000022: ROs should comply with all relevant legal requirements and with the requirements of data custodians. The regulatory
001229 p.000300: 000923 p.000022: requirements which apply may vary depending on the locus of data collection, the location of the subjects of the
001230 p.000300: 000924 p.000022: research, where data are held, and the nature of the research involved. Privacy, health and safety, and intellectual
001231 p.000300: 000925 p.000022: property are especially likely to arise as ethics concerns in research, but all legal requirements should be met. In
001232 p.000300: 000926 p.000022: addition, careful consideration is needed in regard to the ethics implications that might be associated with the re-use
001233 p.000300: 000927 p.000022: and re-purposing of data. Where a principal investigator confirms that a full ethics review is not required, the
001234 p.000300: 000928 p.000022: research will still need to
...

...
001241 p.000300: 000987 p.000024: access the data, and may control access. This category of data may only be available via ‘safe settings’, see
001242 p.000300: for
001243 p.000300: 000988 p.000024: example ESRC’s Administrative Data Research Network (http://www.adrn.ac.uk/) and the Safe Haven Farr
001244 p.000300: Institute
001245 p.000300: 000989 p.000024: (http://www.ed.ac.uk/schools-departments/molecular-
001246 p.000300: 000990 p.000024: clinical-medicine/health-services-research-unit/projects/safe-haven) collaboration, which have been set up,
001247 p.000300: 000991 p.000024: respectively, to ensure the safe use of administrative data and patient and research data for medical research across
001248 p.000300: 000992 p.000024: all diseases.
001249 p.000300: 000993 p.000024: • Data such as the National Child Development Study (NCDS), where the inclusion of information such as a birth
001250 p.000300: date
...

...
001257 p.000300: 001006 p.000024: disclosive when linked with other data within the public domain. The licensing regime provided by ESRC’s Data
001258 p.000300: Service
001259 p.000300: 001007 p.000024: Providers mitigates this risk considerably.
001260 p.000300: 001008 p.000024:
001261 p.000300: 001009 p.000024: There are also specific ethics issues relating to large-scale and longitudinal surveys, such as the Millennium Cohort
001262 p.000300: 001010 p.000024: Study, where social and other health or medical data is secured.
001263 p.000300: 001011 p.000024: The REC should consider issues such as the relation between opting in and out of the study and consent, data
001264 p.000300: security
001265 p.000300: 001012 p.000024: of named files and data and the anonymisation of individual respondents. It should ensure that proposals involving
001266 p.000300: 001013 p.000024: third parties such as
...

...
001271 p.000300: 001073 p.000026: What is the meaning of risk?
001272 p.000300: 001074 p.000026: Proposals should be considered in the context of the risks of the project. Ethics scrutiny should be proportionate to
001273 p.000300: 001075 p.000026: the level of risk and appetite for risk in the specific context of the research proposed and its potential benefits.
001274 p.000300: 001076 p.000026: Risk is often defined by reference to the potential physical or psychologicalharm, discomfort, stress or reputational
001275 p.000300: 001077 p.000026: risk to human participants (and participating groups, organisations and funders) that a research project might
001276 p.000300: 001078 p.000026: generate. This is especially pertinent in the context of health-related research. But, in addition, social science
001277 p.000300: 001079 p.000026: raises a wider range of risks that needs to be considered by RECs. These include risk to a participant’s personal
001278 p.000300: 001080 p.000026: social standing, privacy, personal values and beliefs, their links tofamily and the wider community, and their
001279 p.000300: 001081 p.000026: position within occupational settings, as well as the adverse effects of revealing information that relates to illegal,
001280 p.000300: 001082 p.000026: sexual or deviant behaviour. Research, though it may carry no physical risk, can be disruptive and damaging to
...

...
001285 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
001286 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
001287 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
001288 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
001289 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
001290 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
001291 p.000300: Capacity
001292 p.000300: 001126 p.000027: Act 2005 and consent for research
001293 p.000300: 001127 p.000027: (http://www.wales.gov.uk/dhss/publications/health/mentalhealth/mentalcapacityact/2117019
001294 p.000300: 001128 p.000027: /mcaconsente.pdf?lang=en) and Adults with Incapacity Act 2000- Code of Practice, Part 5
001295 p.000300: 001129 p.000027: (http://www.scotland.gov.uk/Publications/2010/10/20153801/4)).
001296 p.000300: 001130 p.000027:
001297 p.000300: 001131 p.000027: Is it legitimate to expose some research participants/organisations to risk?
...

...
001303 p.000300: 001337 p.000032: What happens when research involves tissue samples (including blood)?
001304 p.000300: 001338 p.000032: UK research involving human tissue (including blood) is subject to the Human Tissue Act 2004, or The Human Tissue
001305 p.000300: 001339 p.000032: (Scotland) Act 2006, and should adhere to the Codes of Practice issued by the Human Tissue Authority. Ethics
001306 p.000300: review
001307 p.000300: 001340 p.000032: should be obtained from a REC operating to the standards set out in the governance arrangements issued by the UK
001308 p.000300: Health
001309 p.000300: 001341 p.000032: Departments or other ethics committees for clinical trials of investigational medicinal products recognised by the
001310 p.000300: 001342 p.000032: United Kingdom Ethics Committee Authority (UKECA).
001311 p.000300: 001343 p.000032:
001312 p.000300: 001344 p.000032: Where research involves the need to secure tissue samples (including blood), participants should be informed of their
...

...
001331 p.000300: 001788 p.000042:
001332 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
001333 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
001334 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
001335 p.000300: Act
001336 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
001337 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
001338 p.000300: 001794 p.000042: committed by him/her, the disposal of such proceedings or the sentence of any court in such proceedings.
001339 p.000300: 001795 p.000042:
001340 p.000300: 001796 p.000042: Research: Research is defined as any form of disciplined inquiry that aims to contribute to a body of knowledge or
...

...
001345 p.000300: 001901 p.000045: • Respect Project (2004). An EU code of Ethics for socio-economic research
001346 p.000300: www.respectproject.org/code/index.php
001347 p.000300: 001902 p.000045: • Social Research Association (2003). Ethics Guidelines http://the-sra.org.uk/research- ethics/ethics-guidelines/
001348 p.000300: 001903 p.000045: • UK Data Service ethics advice: http://ukdataservice.ac.uk/manage-data/legal-ethical.aspx
001349 p.000300: 001904 p.000045: • UKRIO Code of Practice for Research www.ukrio.org/what-we-do/code-of-practice- for-research
001350 p.000300: 001905 p.000045: • Universities and Colleges Employer Association (2011). Guidance on Health and Safety in Fieldwork
001351 p.000300: 001906 p.000045: www.ucea.ac.uk/en/publications/index.cfm/guidance-on-health-and-safety- in-fieldwork
001352 p.000300: 001907 p.000045: • University of Durham and National Co-ordinating Centre for Public Engagement (NCCP) (2012) Community-based
001353 p.000300: 001908 p.000045: participatory research. A guide to ethical principles and practice.
001354 p.000300: 001909 p.000045: https://www.dur.ac.uk/resources/beacon/CBPREthicsGuidewebNovember20121.pdf
001355 p.000300: 001910 p.000045:
001356 p.000300: 001911 p.000045: Health research authority and NHS Research
001357 p.000300: 001912 p.000045: • Health Research Authority (HRA) www.hra.nhs.uk/
001358 p.000300: 001913 p.000045: • HRA guidance for applicants and research community www.hra.nhs.uk/research- community/
001359 p.000300: 001914 p.000045: • HRA decision tool (MRC/HRA): www.hra-decisiontools.org.uk/ethics
001360 p.000300: 001915 p.000045: • HRA Application process Flowchart www.hra.nhs.uk/documents/2014/05/rec-
001361 p.000300: 001916 p.000045: application-process-flowchart-v6-0-19-may-2014.pdf
...

...
001365 p.000300: 001921 p.000045: • AREC (2013). A Framework of Policies and Procedures for University Research Ethics Committees
001366 p.000300: 001922 p.000045: http://s3.spanglefish.com/s/21217/documents/independent-
001367 p.000300: 001923 p.000046: 46
001368 p.000300: 001924 p.000046:
001369 p.000300: 001925 p.000046: membership/12-11-13-framework-complete.pdf
001370 p.000300: 001926 p.000046: • Department of Health (2011). Governance arrangements for research ethics committees: a harmonised edition
001371 p.000300: (updated
001372 p.000300: 001927 p.000046: April 2012) www.gov.uk/government/publications/health-research-ethics-committees-governance- arrangements
001373 p.000300: 001928 p.000046: • UK Health Departments, Research Governance Frameworks
001374 p.000300: 001929 p.000046: www.hra.nhs.uk/resources/research-legislation-and-governance/research-governance- frameworks/
001375 p.000300: 001930 p.000046: • Health Research Authority, Standard Operating Procedures for Research Ethics Committees (2015)
001376 p.000300: 001931 p.000046: http://www.hra.nhs.uk/resources/research-legislation-and- governance/standard-operating-procedures/
001377 p.000300: 001932 p.000046: • The Ministry of Defense Research Ethics Committees (MODREC)
001378 p.000300: www.science.mod.uk/engagement/modrec/modrec.aspx
001379 p.000300: 001933 p.000046: • Social Care Research Ethics Committee www.screc.org.uk
...

...
001384 p.000300: 001959 p.000046: • The National Archives. Making a freedom of information request
001385 p.000300: 001960 p.000046: http://apps.nationalarchives.gov.uk/foi/requests.htm
001386 p.000300: 001961 p.000047: 47
001387 p.000300: 001962 p.000047:
001388 p.000300: 001963 p.000047: • Freedom of Information (Scotland) Act 2002 www.legislation.gov.uk/asp/2002/13/contents
001389 p.000300: 001964 p.000047: • Health and Social Care Act 2008 www.legislation.gov.uk/ukpga/2008/14/contents
001390 p.000300: 001965 p.000047: • Health and Social Care Act 2012 www.legislation.gov.uk/ukpga/2012/7/contents
001391 p.000300: 001966 p.000047: • Human Rights Act 1998 www.legislation.gov.uk/ukpga/1998/42/contents
001392 p.000300: 001967 p.000047: • Human Tissue Act 2004 www.legislation.gov.uk/ukpga/2004/30/contents
001393 p.000300: 001968 p.000047: • HRA Human Tissue Act 2004-Questions and Answers
001394 p.000300: 001969 p.000047: www.hra.nhs.uk/resources/research-legislation-and-governance/questions-and-answers- the-human-tissue-act-2004/
...

...
001398 p.000300: 001972 p.000047: • Mental Capacity Act 2005 www.legislation.gov.uk/ukpga/2005/9/contents
001399 p.000300: 001973 p.000047: • Office of the Public Guardian (2014) Mental Capacity Act 2005: Code of Practice
001400 p.000300: 001974 p.000047: https://www.gov.uk/government/publications/mental-capacity-act-code-of-practice
001401 p.000300: 001975 p.000047: • HRA Mental Capacity Act 2005-Questions and Answers
001402 p.000300: 001976 p.000047: www.hra.nhs.uk/resources/research-legislation-and-governance/questions-and-answers- mental-capacity-act-2005/
001403 p.000300: 001977 p.000047: • Department of Health Mental Capacity Act and consent for research
001404 p.000300: 001978 p.000047: http://wales.gov.uk/dhss/publications/health/mentalhealth/mentalcapacityact/2117019/m caconsente.pdf?lang=en
001405 p.000300: 001979 p.000047: • Adults with Incapacity (Scotland) Act 2000 www.legislation.gov.uk/asp/2000/4/section/10
001406 p.000300: 001980 p.000047: • Adults with Incapacity Act 2000: Code of practice (2010) For practitioners authorised to carry out medical
001407 p.000300: 001981 p.000047: treatment or research under Part 5 of the Act www.scotland.gov.uk/Publications/2010/10/20153801/0
001408 p.000300: 001982 p.000047: • Adults with Incapacity (Ethics Committee) Scotland Regulations 2002
001409 p.000300: ...
001410 p.000300:
001411 p.000300: Health / Mentally Disabled
001412 p.000300: Searching for indicator disability:
001413 p.000300:
001414 p.000300: (return to top)
001415 p.000300: ...
...

...
001424 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001425 p.000300: research
001426 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
001427 p.000300: ...
001428 p.000300:
001429 p.000300: Health / Motherhood/Family
001430 p.000300: Searching for indicator family:
001431 p.000300:
001432 p.000300: (return to top)
001433 p.000300: ...
001434 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001435 p.000300: 000323 p.000008: 8
001436 p.000300: 000324 p.000008:
001437 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001438 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001439 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001440 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001441 p.000300: 000329 p.000008:
001442 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001443 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
001459 p.000300:
001460 p.000300: ...
001461 p.000300: 001075 p.000026: the level of risk and appetite for risk in the specific context of the research proposed and its potential benefits.
001462 p.000300: 001076 p.000026: Risk is often defined by reference to the potential physical or psychologicalharm, discomfort, stress or reputational
001463 p.000300: 001077 p.000026: risk to human participants (and participating groups, organisations and funders) that a research project might
001464 p.000300: 001078 p.000026: generate. This is especially pertinent in the context of health-related research. But, in addition, social science
001465 p.000300: 001079 p.000026: raises a wider range of risks that needs to be considered by RECs. These include risk to a participant’s personal
001466 p.000300: 001080 p.000026: social standing, privacy, personal values and beliefs, their links tofamily and the wider community, and their
001467 p.000300: 001081 p.000026: position within occupational settings, as well as the adverse effects of revealing information that relates to illegal,
001468 p.000300: 001082 p.000026: sexual or deviant behaviour. Research, though it may carry no physical risk, can be disruptive and damaging to
...

...
001488 p.000300: someone
001489 p.000300: 001325 p.000032: who is prepared to be consulted by the researcher, but has no connection with the research project - for example,
001490 p.000300: 001326 p.000032: someone from a relevant organisation (such as a local church or charity); but they could also be a professional care
001491 p.000300: ...
001492 p.000300:
001493 p.000300: Health / Physically Ill
001494 p.000300: Searching for indicator illness:
001495 p.000300:
001496 p.000300: (return to top)
001497 p.000300: ...
...

...
001503 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
001504 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
001505 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
001506 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
001507 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
001508 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
001509 p.000300: Capacity
001510 p.000300: 001126 p.000027: Act 2005 and consent for research
001511 p.000300: ...
001512 p.000300: Political / Illegal Activity
...

...
001519 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001520 p.000300: 000323 p.000008: 8
001521 p.000300: 000324 p.000008:
001522 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001523 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001524 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001525 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001526 p.000300: 000329 p.000008:
001527 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001528 p.000300: ...
...

...
001556 p.000300: ...
001557 p.000300:
001558 p.000300: ...
001559 p.000300: 001076 p.000026: Risk is often defined by reference to the potential physical or psychologicalharm, discomfort, stress or reputational
001560 p.000300: 001077 p.000026: risk to human participants (and participating groups, organisations and funders) that a research project might
001561 p.000300: 001078 p.000026: generate. This is especially pertinent in the context of health-related research. But, in addition, social science
001562 p.000300: 001079 p.000026: raises a wider range of risks that needs to be considered by RECs. These include risk to a participant’s personal
001563 p.000300: 001080 p.000026: social standing, privacy, personal values and beliefs, their links tofamily and the wider community, and their
001564 p.000300: 001081 p.000026: position within occupational settings, as well as the adverse effects of revealing information that relates to illegal,
001565 p.000300: 001082 p.000026: sexual or deviant behaviour. Research, though it may carry no physical risk, can be disruptive and damaging to
...

...
001612 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001613 p.000300: 000323 p.000008: 8
001614 p.000300: 000324 p.000008:
001615 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001616 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001617 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001618 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001619 p.000300: 000329 p.000008:
001620 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001621 p.000300: ...
...

...
001727 p.000300: 001788 p.000042:
001728 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
001729 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
001730 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
001731 p.000300: Act
001732 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
001733 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
001734 p.000300: 001794 p.000042: committed by him/her, the disposal of such proceedings or the sentence of any court in such proceedings.
001735 p.000300: ...
001736 p.000300:
...

...
001757 p.000300: 001788 p.000042:
001758 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
001759 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
001760 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
001761 p.000300: Act
001762 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
001763 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
001764 p.000300: 001794 p.000042: committed by him/her, the disposal of such proceedings or the sentence of any court in such proceedings.
001765 p.000300: 001795 p.000042:
001766 p.000300: ...
...

...
001920 p.000300: 000987 p.000024: access the data, and may control access. This category of data may only be available via ‘safe settings’, see
001921 p.000300: for
001922 p.000300: 000988 p.000024: example ESRC’s Administrative Data Research Network (http://www.adrn.ac.uk/) and the Safe Haven Farr
001923 p.000300: Institute
001924 p.000300: 000989 p.000024: (http://www.ed.ac.uk/schools-departments/molecular-
001925 p.000300: 000990 p.000024: clinical-medicine/health-services-research-unit/projects/safe-haven) collaboration, which have been set up,
001926 p.000300: 000991 p.000024: respectively, to ensure the safe use of administrative data and patient and research data for medical research across
001927 p.000300: ...
001928 p.000300:
001929 p.000300: ...
...

...
002091 p.000300: (return to top)
002092 p.000300: ...
002093 p.000300: 000988 p.000024: example ESRC’s Administrative Data Research Network (http://www.adrn.ac.uk/) and the Safe Haven Farr
002094 p.000300: Institute
002095 p.000300: 000989 p.000024: (http://www.ed.ac.uk/schools-departments/molecular-
002096 p.000300: 000990 p.000024: clinical-medicine/health-services-research-unit/projects/safe-haven) collaboration, which have been set up,
002097 p.000300: 000991 p.000024: respectively, to ensure the safe use of administrative data and patient and research data for medical research across
002098 p.000300: 000992 p.000024: all diseases.
002099 p.000300: 000993 p.000024: • Data such as the National Child Development Study (NCDS), where the inclusion of information such as a birth
002100 p.000300: date
...

...
002579 p.000300: member with
002580 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
002581 p.000300: expertise
002582 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
002583 p.000300: research
002584 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
002585 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
002586 p.000300: 000520 p.000012: professional care or counselling, and individuals with specific methodological expertise (for example, quantitative or
002587 p.000300: 000521 p.000012: qualitative methods) relevant to the research they review. A REC should include among its membership people who
002588 p.000300: are
...

...
002660 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
002661 p.000300: 000323 p.000008: 8
002662 p.000300: 000324 p.000008:
002663 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
002664 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
002665 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
002666 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
002667 p.000300: 000329 p.000008:
002668 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
002669 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
002676 p.000300: member with
002677 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
002678 p.000300: expertise
002679 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
002680 p.000300: research
002681 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
002682 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
002683 p.000300: 000520 p.000012: professional care or counselling, and individuals with specific methodological expertise (for example, quantitative or
002684 p.000300: 000521 p.000012: qualitative methods) relevant to the research they review. A REC should include among its membership people who
002685 p.000300: are
...

...
002694 p.000300: 001788 p.000042:
002695 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
002696 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
002697 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
002698 p.000300: Act
002699 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
002700 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
002701 p.000300: ...
002702 p.000300:
002703 p.000300: ...
...

...
002744 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002745 p.000300: research
002746 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
002747 p.000300: 000316 p.000007:
002748 p.000300: 000317 p.000007: • (http://www.legislation.gov.uk/ukpga/2005/9/contents ). Normally this will be a REC recognised by the Secretary of
002749 p.000300: 000318 p.000007: State and Welsh Ministers and operating under the Health Research Authority (HRA) Governance Arrangements for
002750 p.000300: Research
002751 p.000300: 000319 p.000007: Ethics Committees (GAfREC) (http://www.hra.nhs.uk/resources/research-legislation-and-
002752 p.000300: ...
002753 p.000300:
...

...
002818 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
002819 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
002820 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
002821 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
002822 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
002823 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
002824 p.000300: Capacity
002825 p.000300: 001126 p.000027: Act 2005 and consent for research
002826 p.000300: 001127 p.000027: (http://www.wales.gov.uk/dhss/publications/health/mentalhealth/mentalcapacityact/2117019
002827 p.000300: 001128 p.000027: /mcaconsente.pdf?lang=en) and Adults with Incapacity Act 2000- Code of Practice, Part 5
002828 p.000300: 001129 p.000027: (http://www.scotland.gov.uk/Publications/2010/10/20153801/4)).
002829 p.000300: ...
002830 p.000300:
...

...
002949 p.000300: 001972 p.000047: • Mental Capacity Act 2005 www.legislation.gov.uk/ukpga/2005/9/contents
002950 p.000300: 001973 p.000047: • Office of the Public Guardian (2014) Mental Capacity Act 2005: Code of Practice
002951 p.000300: 001974 p.000047: https://www.gov.uk/government/publications/mental-capacity-act-code-of-practice
002952 p.000300: 001975 p.000047: • HRA Mental Capacity Act 2005-Questions and Answers
002953 p.000300: 001976 p.000047: www.hra.nhs.uk/resources/research-legislation-and-governance/questions-and-answers- mental-capacity-act-2005/
002954 p.000300: 001977 p.000047: • Department of Health Mental Capacity Act and consent for research
002955 p.000300: 001978 p.000047: http://wales.gov.uk/dhss/publications/health/mentalhealth/mentalcapacityact/2117019/m caconsente.pdf?lang=en
002956 p.000300: 001979 p.000047: • Adults with Incapacity (Scotland) Act 2000 www.legislation.gov.uk/asp/2000/4/section/10
002957 p.000300: 001980 p.000047: • Adults with Incapacity Act 2000: Code of practice (2010) For practitioners authorised to carry out medical
002958 p.000300: 001981 p.000047: treatment or research under Part 5 of the Act www.scotland.gov.uk/Publications/2010/10/20153801/0
002959 p.000300: ...
...

...
002965 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
002966 p.000300: 000323 p.000008: 8
002967 p.000300: 000324 p.000008:
002968 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
002969 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
002970 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
002971 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
002972 p.000300: 000329 p.000008:
002973 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
002974 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
003032 p.000300:
003033 p.000300: (return to top)
003034 p.000300: ...
003035 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003036 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003037 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003038 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003039 p.000300: 000329 p.000008:
003040 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003041 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
003289 p.000300: 001788 p.000042:
003290 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
003291 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
003292 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
003293 p.000300: Act
003294 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
003295 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
003296 p.000300: ...
003297 p.000300:
003298 p.000300: Social / Religion
...

...
003306 p.000300: 001788 p.000042:
003307 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
003308 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
003309 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
003310 p.000300: Act
003311 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
003312 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
003313 p.000300: 001794 p.000042: committed by him/her, the disposal of such proceedings or the sentence of any court in such proceedings.
003314 p.000300: ...
003315 p.000300:
...

...
003421 p.000300: member with
003422 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
003423 p.000300: expertise
003424 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
003425 p.000300: research
003426 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
003427 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
003428 p.000300: 000520 p.000012: professional care or counselling, and individuals with specific methodological expertise (for example, quantitative or
003429 p.000300: 000521 p.000012: qualitative methods) relevant to the research they review. A REC should include among its membership people who
003430 p.000300: are
...

...
003528 p.000300: 001006 p.000024: disclosive when linked with other data within the public domain. The licensing regime provided by ESRC’s Data
003529 p.000300: Service
003530 p.000300: 001007 p.000024: Providers mitigates this risk considerably.
003531 p.000300: 001008 p.000024:
003532 p.000300: 001009 p.000024: There are also specific ethics issues relating to large-scale and longitudinal surveys, such as the Millennium Cohort
003533 p.000300: 001010 p.000024: Study, where social and other health or medical data is secured.
003534 p.000300: 001011 p.000024: The REC should consider issues such as the relation between opting in and out of the study and consent, data
003535 p.000300: security
003536 p.000300: 001012 p.000024: of named files and data and the anonymisation of individual respondents. It should ensure that proposals involving
003537 p.000300: 001013 p.000024: third parties such as
...

...
003566 p.000300: 001073 p.000026: What is the meaning of risk?
003567 p.000300: 001074 p.000026: Proposals should be considered in the context of the risks of the project. Ethics scrutiny should be proportionate to
003568 p.000300: 001075 p.000026: the level of risk and appetite for risk in the specific context of the research proposed and its potential benefits.
003569 p.000300: 001076 p.000026: Risk is often defined by reference to the potential physical or psychologicalharm, discomfort, stress or reputational
003570 p.000300: 001077 p.000026: risk to human participants (and participating groups, organisations and funders) that a research project might
003571 p.000300: 001078 p.000026: generate. This is especially pertinent in the context of health-related research. But, in addition, social science
003572 p.000300: 001079 p.000026: raises a wider range of risks that needs to be considered by RECs. These include risk to a participant’s personal
003573 p.000300: 001080 p.000026: social standing, privacy, personal values and beliefs, their links tofamily and the wider community, and their
003574 p.000300: 001081 p.000026: position within occupational settings, as well as the adverse effects of revealing information that relates to illegal,
003575 p.000300: 001082 p.000026: sexual or deviant behaviour. Research, though it may carry no physical risk, can be disruptive and damaging to
...

...
003758 p.000300: 001901 p.000045: • Respect Project (2004). An EU code of Ethics for socio-economic research
003759 p.000300: www.respectproject.org/code/index.php
003760 p.000300: 001902 p.000045: • Social Research Association (2003). Ethics Guidelines http://the-sra.org.uk/research- ethics/ethics-guidelines/
003761 p.000300: 001903 p.000045: • UK Data Service ethics advice: http://ukdataservice.ac.uk/manage-data/legal-ethical.aspx
003762 p.000300: 001904 p.000045: • UKRIO Code of Practice for Research www.ukrio.org/what-we-do/code-of-practice- for-research
003763 p.000300: 001905 p.000045: • Universities and Colleges Employer Association (2011). Guidance on Health and Safety in Fieldwork
003764 p.000300: 001906 p.000045: www.ucea.ac.uk/en/publications/index.cfm/guidance-on-health-and-safety- in-fieldwork
003765 p.000300: ...
003766 p.000300:
003767 p.000300: ...
003768 p.000300: 001928 p.000046: • UK Health Departments, Research Governance Frameworks
003769 p.000300: 001929 p.000046: www.hra.nhs.uk/resources/research-legislation-and-governance/research-governance- frameworks/
003770 p.000300: 001930 p.000046: • Health Research Authority, Standard Operating Procedures for Research Ethics Committees (2015)
003771 p.000300: 001931 p.000046: http://www.hra.nhs.uk/resources/research-legislation-and- governance/standard-operating-procedures/
003772 p.000300: 001932 p.000046: • The Ministry of Defense Research Ethics Committees (MODREC)
003773 p.000300: www.science.mod.uk/engagement/modrec/modrec.aspx
003774 p.000300: 001933 p.000046: • Social Care Research Ethics Committee www.screc.org.uk
...

...
003792 p.000300: 001959 p.000046: • The National Archives. Making a freedom of information request
003793 p.000300: 001960 p.000046: http://apps.nationalarchives.gov.uk/foi/requests.htm
003794 p.000300: 001961 p.000047: 47
003795 p.000300: 001962 p.000047:
003796 p.000300: 001963 p.000047: • Freedom of Information (Scotland) Act 2002 www.legislation.gov.uk/asp/2002/13/contents
003797 p.000300: 001964 p.000047: • Health and Social Care Act 2008 www.legislation.gov.uk/ukpga/2008/14/contents
003798 p.000300: 001965 p.000047: • Health and Social Care Act 2012 www.legislation.gov.uk/ukpga/2012/7/contents
003799 p.000300: 001966 p.000047: • Human Rights Act 1998 www.legislation.gov.uk/ukpga/1998/42/contents
003800 p.000300: 001967 p.000047: • Human Tissue Act 2004 www.legislation.gov.uk/ukpga/2004/30/contents
003801 p.000300: 001968 p.000047: • HRA Human Tissue Act 2004-Questions and Answers
003802 p.000300: 001969 p.000047: www.hra.nhs.uk/resources/research-legislation-and-governance/questions-and-answers- the-human-tissue-act-2004/
...

...
003963 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
003964 p.000300: 000323 p.000008: 8
003965 p.000300: 000324 p.000008:
003966 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003967 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003968 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003969 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003970 p.000300: 000329 p.000008:
003971 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003972 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
003980 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
003981 p.000300: 000323 p.000008: 8
003982 p.000300: 000324 p.000008:
003983 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003984 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003985 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003986 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003987 p.000300: 000329 p.000008:
003988 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003989 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
004004 p.000300: member with
004005 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
004006 p.000300: expertise
004007 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
004008 p.000300: research
004009 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
004010 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
004011 p.000300: ...
004012 p.000300:
004013 p.000300: Social / Youth/Minors
...

...
004054 p.000300: elderly Elderly
004055 p.000300: engaged Marital Status
004056 p.000300: ethnic Ethnicity
004057 p.000300: family Motherhood/Family
004058 p.000300: gender Gender
004059 p.000300: health Health
004060 p.000300: hiv HIV/AIDS
004061 p.000300: home Property Ownership
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
...

...
004159 p.000300: General/Other Incapacitated incapacity
004160 p.000300: General/Other Laboratory Staff usage
004161 p.000300: General/Other Presence of Coercion coercion
004162 p.000300: General/Other Relationship to Authority authority
004163 p.000300: General/Other Undue Influence undue influence
004164 p.000300: Health Cadavers cadavers
004165 p.000300: Health Cognitive Impairment cognitive
004166 p.000300: Health Cognitive Impairment cognitive impairment
004167 p.000300: Health Cognitive Impairment impaired
004168 p.000300: Health Cognitive Impairment impairment
004169 p.000300: Health Drug Dependence dependence
004170 p.000300: Health Drug Usage drug
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
004174 p.000300: Health Mentally Disabled disability
004175 p.000300: Health Motherhood/Family family
004176 p.000300: Health Physically Ill illness
004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
004179 p.000300: Political Political political
004180 p.000300: Political Trade Union Membership union
...

Health / Mentally Disabled

Searching for indicator disability:

(return to top)
...
000279 p.000300: ...
000280 p.000300: 000307 p.000007:
000281 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000282 p.000300: 000309 p.000007: Research involving:
000283 p.000300: 000310 p.000007:
000284 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000285 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000286 p.000300: 000313 p.000007:
000287 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000288 p.000300: research
...

...
000914 p.000300: ...
000915 p.000300: 000307 p.000007:
000916 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000917 p.000300: 000309 p.000007: Research involving:
000918 p.000300: 000310 p.000007:
000919 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000920 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000921 p.000300: 000313 p.000007:
000922 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000923 p.000300: research
...

...
000945 p.000300: ...
000946 p.000300: 000307 p.000007:
000947 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000948 p.000300: 000309 p.000007: Research involving:
000949 p.000300: 000310 p.000007:
000950 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000951 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000952 p.000300: 000313 p.000007:
000953 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000954 p.000300: research
...

...
000995 p.000300: ...
000996 p.000300: 000307 p.000007:
000997 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000998 p.000300: 000309 p.000007: Research involving:
000999 p.000300: 000310 p.000007:
001000 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
001001 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
001002 p.000300: 000313 p.000007:
001003 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001004 p.000300: research
...

...
001406 p.000300: 001980 p.000047: • Adults with Incapacity Act 2000: Code of practice (2010) For practitioners authorised to carry out medical
001407 p.000300: 001981 p.000047: treatment or research under Part 5 of the Act www.scotland.gov.uk/Publications/2010/10/20153801/0
001408 p.000300: 001982 p.000047: • Adults with Incapacity (Ethics Committee) Scotland Regulations 2002
001409 p.000300: ...
001410 p.000300:
001411 p.000300: Health / Mentally Disabled
001412 p.000300: Searching for indicator disability:
001413 p.000300:
001414 p.000300: (return to top)
001415 p.000300: ...
001416 p.000300: 000306 p.000007: are not necessarily exempt from full review.
001417 p.000300: 000307 p.000007:
001418 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
001419 p.000300: 000309 p.000007: Research involving:
001420 p.000300: 000310 p.000007:
001421 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
001422 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
001423 p.000300: 000313 p.000007:
001424 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001425 p.000300: research
...

...
002163 p.000300: 000306 p.000007: are not necessarily exempt from full review.
002164 p.000300: 000307 p.000007:
002165 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
002166 p.000300: 000309 p.000007: Research involving:
002167 p.000300: 000310 p.000007:
002168 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002169 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002170 p.000300: 000313 p.000007:
002171 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002172 p.000300: research
...

...
002399 p.000300: 000306 p.000007: are not necessarily exempt from full review.
002400 p.000300: 000307 p.000007:
002401 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
002402 p.000300: 000309 p.000007: Research involving:
002403 p.000300: 000310 p.000007:
002404 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002405 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002406 p.000300: 000313 p.000007:
002407 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002408 p.000300: research
...

...
002736 p.000300:
002737 p.000300: (return to top)
002738 p.000300: ...
002739 p.000300: 000309 p.000007: Research involving:
002740 p.000300: 000310 p.000007:
002741 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002742 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002743 p.000300: 000313 p.000007:
002744 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002745 p.000300: research
...

...
004044 p.000300: cultural Cultural Differences
004045 p.000300: culture Cultural Differences
004046 p.000300: deceased Linguistic Proficiency
004047 p.000300: dependence Drug Dependence
004048 p.000300: dependent Dependent
004049 p.000300: disability Mentally Disabled
004050 p.000300: drug Drug Usage
004051 p.000300: economic Economic/Poverty
004052 p.000300: education Educational
004053 p.000300: educational Educational
...

...
004169 p.000300: Health Drug Dependence dependence
004170 p.000300: Health Drug Usage drug
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
004174 p.000300: Health Mentally Disabled disability
004175 p.000300: Health Motherhood/Family family
004176 p.000300: Health Physically Ill illness
004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
...

Searching for indicator mentally:

(return to top)
...
001406 p.000300: 001980 p.000047: • Adults with Incapacity Act 2000: Code of practice (2010) For practitioners authorised to carry out medical
001407 p.000300: 001981 p.000047: treatment or research under Part 5 of the Act www.scotland.gov.uk/Publications/2010/10/20153801/0
001408 p.000300: 001982 p.000047: • Adults with Incapacity (Ethics Committee) Scotland Regulations 2002
001409 p.000300: ...
001410 p.000300:
001411 p.000300: Health / Mentally Disabled
001412 p.000300: Searching for indicator disability:
001413 p.000300:
001414 p.000300: (return to top)
001415 p.000300: ...
001416 p.000300: 000306 p.000007: are not necessarily exempt from full review.
...

...
004044 p.000300: cultural Cultural Differences
004045 p.000300: culture Cultural Differences
004046 p.000300: deceased Linguistic Proficiency
004047 p.000300: dependence Drug Dependence
004048 p.000300: dependent Dependent
004049 p.000300: disability Mentally Disabled
004050 p.000300: drug Drug Usage
004051 p.000300: economic Economic/Poverty
004052 p.000300: education Educational
004053 p.000300: educational Educational
...

...
004169 p.000300: Health Drug Dependence dependence
004170 p.000300: Health Drug Usage drug
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
004174 p.000300: Health Mentally Disabled disability
004175 p.000300: Health Motherhood/Family family
004176 p.000300: Health Physically Ill illness
004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
...

Searching for indicator mentally disabled:

(return to top)
...
001406 p.000300: 001980 p.000047: • Adults with Incapacity Act 2000: Code of practice (2010) For practitioners authorised to carry out medical
001407 p.000300: 001981 p.000047: treatment or research under Part 5 of the Act www.scotland.gov.uk/Publications/2010/10/20153801/0
001408 p.000300: 001982 p.000047: • Adults with Incapacity (Ethics Committee) Scotland Regulations 2002
001409 p.000300: ...
001410 p.000300:
001411 p.000300: Health / Mentally Disabled
001412 p.000300: Searching for indicator disability:
001413 p.000300:
001414 p.000300: (return to top)
001415 p.000300: ...
001416 p.000300: 000306 p.000007: are not necessarily exempt from full review.
...

...
004044 p.000300: cultural Cultural Differences
004045 p.000300: culture Cultural Differences
004046 p.000300: deceased Linguistic Proficiency
004047 p.000300: dependence Drug Dependence
004048 p.000300: dependent Dependent
004049 p.000300: disability Mentally Disabled
004050 p.000300: drug Drug Usage
004051 p.000300: economic Economic/Poverty
004052 p.000300: education Educational
004053 p.000300: educational Educational
...

...
004169 p.000300: Health Drug Dependence dependence
004170 p.000300: Health Drug Usage drug
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
004174 p.000300: Health Mentally Disabled disability
004175 p.000300: Health Motherhood/Family family
004176 p.000300: Health Physically Ill illness
004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
...

Health / Motherhood/Family

Searching for indicator family:

(return to top)
...
000147 p.000300:
000148 p.000300: ...
000149 p.000300: 001316 p.000032: 32
000150 p.000300: 001317 p.000032:
000151 p.000300: 001318 p.000032: who knows the person well who lacks capacity to make a decision, but is not a professional or paid care worker; this
000152 p.000300: 001319 p.000032: does not include family members receiving some of the person’s pension or other benefits as a payment towards
000153 p.000300: their
000154 p.000300: 001320 p.000032: share of the household expenses. The guidance states that it should be someone whom the person who lacks
000155 p.000300: capacity to
000156 p.000300: 001321 p.000032: make a decision would trust with important decisions about their welfare.
000157 p.000300: 001322 p.000032: Thus, a personal consultee could be a family member or close friend of the person.
000158 p.000300: 001323 p.000032:
000159 p.000300: 001324 p.000032: If no personal consultee can be identified, a nominated consultee should be proposed by the researcher. This is
000160 p.000300: someone
000161 p.000300: 001325 p.000032: who is prepared to be consulted by the researcher, but has no connection with the research project - for example,
...

...
000293 p.000300: ...
000294 p.000300: 000345 p.000008:
000295 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
000296 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
000297 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
000298 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
000299 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
000300 p.000300: gatekeeper
000301 p.000300: 000351 p.000008: (eg employees recruited through their workplace). Permission for access to other groups, for example participants in a
000302 p.000300: 000352 p.000008: long term cohort study, may also need to be requested from a data producer who controls access to the group.
...

...
001180 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001181 p.000300: 000323 p.000008: 8
001182 p.000300: 000324 p.000008:
001183 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001184 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001185 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001186 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001187 p.000300: 000329 p.000008:
001188 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001189 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
001424 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001425 p.000300: research
001426 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
001427 p.000300: ...
001428 p.000300:
001429 p.000300: Health / Motherhood/Family
001430 p.000300: Searching for indicator family:
001431 p.000300:
001432 p.000300: (return to top)
001433 p.000300: ...
001434 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001435 p.000300: 000323 p.000008: 8
001436 p.000300: 000324 p.000008:
001437 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001438 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001439 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001440 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001441 p.000300: 000329 p.000008:
001442 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001443 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
001447 p.000300: 000344 p.000008: sufficient. Issues however may arise when data are linked and where it may be possible to identify participants.
001448 p.000300: 000345 p.000008:
001449 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
001450 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
001451 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
001452 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
001453 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
001454 p.000300: gatekeeper
001455 p.000300: 000351 p.000008: (eg employees recruited through their workplace). Permission for access to other groups, for example participants in a
001456 p.000300: 000352 p.000008: long term cohort study, may also need to be requested from a data producer who controls access to the group.
...

...
001475 p.000300: 001314 p.000031: 2005 requires that the researcher must consult with a specified consultee as set out in the Guidance to the Act (2008).
001476 p.000300: 001315 p.000031: If possible, this should be a personal consultee. The researcher should take reasonable steps to identify someone
001477 p.000300: 001316 p.000032: 32
001478 p.000300: 001317 p.000032:
001479 p.000300: 001318 p.000032: who knows the person well who lacks capacity to make a decision, but is not a professional or paid care worker; this
001480 p.000300: 001319 p.000032: does not include family members receiving some of the person’s pension or other benefits as a payment towards
001481 p.000300: their
001482 p.000300: 001320 p.000032: share of the household expenses. The guidance states that it should be someone whom the person who lacks
001483 p.000300: capacity to
001484 p.000300: 001321 p.000032: make a decision would trust with important decisions about their welfare.
001485 p.000300: 001322 p.000032: Thus, a personal consultee could be a family member or close friend of the person.
001486 p.000300: 001323 p.000032:
001487 p.000300: 001324 p.000032: If no personal consultee can be identified, a nominated consultee should be proposed by the researcher. This is
001488 p.000300: someone
001489 p.000300: 001325 p.000032: who is prepared to be consulted by the researcher, but has no connection with the research project - for example,
...

...
001519 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001520 p.000300: 000323 p.000008: 8
001521 p.000300: 000324 p.000008:
001522 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001523 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001524 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001525 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001526 p.000300: 000329 p.000008:
001527 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001528 p.000300: ...
...

...
001612 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001613 p.000300: 000323 p.000008: 8
001614 p.000300: 000324 p.000008:
001615 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001616 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001617 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001618 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001619 p.000300: 000329 p.000008:
001620 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001621 p.000300: ...
...

...
001803 p.000300: 000344 p.000008: sufficient. Issues however may arise when data are linked and where it may be possible to identify participants.
001804 p.000300: 000345 p.000008:
001805 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
001806 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
001807 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
001808 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
001809 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
001810 p.000300: gatekeeper
001811 p.000300: 000351 p.000008: (eg employees recruited through their workplace). Permission for access to other groups, for example participants in a
001812 p.000300: 000352 p.000008: long term cohort study, may also need to be requested from a data producer who controls access to the group.
...

...
002180 p.000300: 000344 p.000008: sufficient. Issues however may arise when data are linked and where it may be possible to identify participants.
002181 p.000300: 000345 p.000008:
002182 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
002183 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
002184 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
002185 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
002186 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
002187 p.000300: gatekeeper
002188 p.000300: 000351 p.000008: (eg employees recruited through their workplace). Permission for access to other groups, for example participants in a
002189 p.000300: ...
...

...
002630 p.000300: 000344 p.000008: sufficient. Issues however may arise when data are linked and where it may be possible to identify participants.
002631 p.000300: 000345 p.000008:
002632 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
002633 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
002634 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
002635 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
002636 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
002637 p.000300: gatekeeper
002638 p.000300: 000351 p.000008: (eg employees recruited through their workplace). Permission for access to other groups, for example participants in a
002639 p.000300: 000352 p.000008: long term cohort study, may also need to be requested from a data producer who controls access to the group.
...

...
002660 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
002661 p.000300: 000323 p.000008: 8
002662 p.000300: 000324 p.000008:
002663 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
002664 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
002665 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
002666 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
002667 p.000300: 000329 p.000008:
002668 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
002669 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
002869 p.000300: 001314 p.000031: 2005 requires that the researcher must consult with a specified consultee as set out in the Guidance to the Act (2008).
002870 p.000300: 001315 p.000031: If possible, this should be a personal consultee. The researcher should take reasonable steps to identify someone
002871 p.000300: 001316 p.000032: 32
002872 p.000300: 001317 p.000032:
002873 p.000300: 001318 p.000032: who knows the person well who lacks capacity to make a decision, but is not a professional or paid care worker; this
002874 p.000300: 001319 p.000032: does not include family members receiving some of the person’s pension or other benefits as a payment towards
002875 p.000300: their
002876 p.000300: 001320 p.000032: share of the household expenses. The guidance states that it should be someone whom the person who lacks
002877 p.000300: capacity to
002878 p.000300: 001321 p.000032: make a decision would trust with important decisions about their welfare.
002879 p.000300: 001322 p.000032: Thus, a personal consultee could be a family member or close friend of the person.
002880 p.000300: 001323 p.000032:
002881 p.000300: 001324 p.000032: If no personal consultee can be identified, a nominated consultee should be proposed by the researcher. This is
002882 p.000300: someone
002883 p.000300: ...
...

...
002965 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
002966 p.000300: 000323 p.000008: 8
002967 p.000300: 000324 p.000008:
002968 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
002969 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
002970 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
002971 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
002972 p.000300: 000329 p.000008:
002973 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
002974 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
003032 p.000300:
003033 p.000300: (return to top)
003034 p.000300: ...
003035 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003036 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003037 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003038 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003039 p.000300: 000329 p.000008:
003040 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003041 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
003644 p.000300: 001275 p.000030: Disciplinary professional ethics codes may be helpful here. Where the research design is
003645 p.000300: 001276 p.000031: 31
003646 p.000300: ...
003647 p.000300:
003648 p.000300: ...
003649 p.000300: 001322 p.000032: Thus, a personal consultee could be a family member or close friend of the person.
003650 p.000300: 001323 p.000032:
003651 p.000300: 001324 p.000032: If no personal consultee can be identified, a nominated consultee should be proposed by the researcher. This is
003652 p.000300: someone
003653 p.000300: 001325 p.000032: who is prepared to be consulted by the researcher, but has no connection with the research project - for example,
...

...
003963 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
003964 p.000300: 000323 p.000008: 8
003965 p.000300: 000324 p.000008:
003966 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003967 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003968 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003969 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003970 p.000300: 000329 p.000008:
003971 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003972 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
003980 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
003981 p.000300: 000323 p.000008: 8
003982 p.000300: 000324 p.000008:
003983 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003984 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003985 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003986 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003987 p.000300: 000329 p.000008:
003988 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003989 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
004052 p.000300: education Educational
004053 p.000300: educational Educational
004054 p.000300: elderly Elderly
004055 p.000300: engaged Marital Status
004056 p.000300: ethnic Ethnicity
004057 p.000300: family Motherhood/Family
004058 p.000300: gender Gender
004059 p.000300: health Health
004060 p.000300: hiv HIV/AIDS
004061 p.000300: home Property Ownership
...

...
004170 p.000300: Health Drug Usage drug
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
004174 p.000300: Health Mentally Disabled disability
004175 p.000300: Health Motherhood/Family family
004176 p.000300: Health Physically Ill illness
004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
004179 p.000300: Political Political political
...

Searching for indicator motherhood:

(return to top)
...
001424 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001425 p.000300: research
001426 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
001427 p.000300: ...
001428 p.000300:
001429 p.000300: Health / Motherhood/Family
001430 p.000300: Searching for indicator family:
001431 p.000300:
001432 p.000300: (return to top)
001433 p.000300: ...
001434 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
...

...
004052 p.000300: education Educational
004053 p.000300: educational Educational
004054 p.000300: elderly Elderly
004055 p.000300: engaged Marital Status
004056 p.000300: ethnic Ethnicity
004057 p.000300: family Motherhood/Family
004058 p.000300: gender Gender
004059 p.000300: health Health
004060 p.000300: hiv HIV/AIDS
004061 p.000300: home Property Ownership
...

...
004170 p.000300: Health Drug Usage drug
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
004174 p.000300: Health Mentally Disabled disability
004175 p.000300: Health Motherhood/Family family
004176 p.000300: Health Physically Ill illness
004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
004179 p.000300: Political Political political
...

Health / Physically Ill

Searching for indicator ill:

(return to top)
...
001488 p.000300: someone
001489 p.000300: 001325 p.000032: who is prepared to be consulted by the researcher, but has no connection with the research project - for example,
001490 p.000300: 001326 p.000032: someone from a relevant organisation (such as a local church or charity); but they could also be a professional care
001491 p.000300: ...
001492 p.000300:
001493 p.000300: Health / Physically Ill
001494 p.000300: Searching for indicator illness:
001495 p.000300:
001496 p.000300: (return to top)
001497 p.000300: ...
001498 p.000300: 001117 p.000027: temporary. It could be state-related (eg due to drug or alcohol use, or because of the person’s emotional state at
...

...
004058 p.000300: gender Gender
004059 p.000300: health Health
004060 p.000300: hiv HIV/AIDS
004061 p.000300: home Property Ownership
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
...

...
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
004174 p.000300: Health Mentally Disabled disability
004175 p.000300: Health Motherhood/Family family
004176 p.000300: Health Physically Ill illness
004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
004179 p.000300: Political Political political
004180 p.000300: Political Trade Union Membership union
...

Searching for indicator illness:

(return to top)
...
000466 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
000467 p.000300: provisions for
000468 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
000469 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
000470 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
000471 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
000472 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
000473 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
000474 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
000475 p.000300: Capacity
...

...
000980 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
000981 p.000300: provisions for
000982 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
000983 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
000984 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
000985 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
000986 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
000987 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
000988 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
000989 p.000300: Capacity
...

...
001282 p.000300: ...
001283 p.000300:
001284 p.000300: ...
001285 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
001286 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
001287 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
001288 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
001289 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
001290 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
001291 p.000300: Capacity
...

...
001488 p.000300: someone
001489 p.000300: 001325 p.000032: who is prepared to be consulted by the researcher, but has no connection with the research project - for example,
001490 p.000300: 001326 p.000032: someone from a relevant organisation (such as a local church or charity); but they could also be a professional care
001491 p.000300: ...
001492 p.000300:
001493 p.000300: Health / Physically Ill
001494 p.000300: Searching for indicator illness:
001495 p.000300:
001496 p.000300: (return to top)
001497 p.000300: ...
001498 p.000300: 001117 p.000027: temporary. It could be state-related (eg due to drug or alcohol use, or because of the person’s emotional state at
...

...
001500 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
001501 p.000300: provisions for
001502 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
001503 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
001504 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
001505 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
001506 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
001507 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
001508 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
001509 p.000300: Capacity
...

...
002815 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
002816 p.000300: provisions for
002817 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
002818 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
002819 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
002820 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
002821 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
002822 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
002823 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
002824 p.000300: Capacity
...

...
004058 p.000300: gender Gender
004059 p.000300: health Health
004060 p.000300: hiv HIV/AIDS
004061 p.000300: home Property Ownership
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
...

...
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
004174 p.000300: Health Mentally Disabled disability
004175 p.000300: Health Motherhood/Family family
004176 p.000300: Health Physically Ill illness
004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
004179 p.000300: Political Political political
004180 p.000300: Political Trade Union Membership union
...

Political / Illegal Activity

Searching for indicator diminished:

(return to top)
...
000332 p.000300: 002119 p.000050:
000333 p.000300: 002120 p.000050:
000334 p.000300: 002121 p.000050:
000335 p.000300: ...
000336 p.000300:
000337 p.000300: General/Other / Diminished Autonomy
000338 p.000300: Searching for indicator age:
000339 p.000300:
000340 p.000300: (return to top)
000341 p.000300: ...
...

...
004029 p.000300: Appendix
004030 p.000300: Indicator List
004031 p.000300: Indicator Vulnerability
004032 p.000300: abuse Victim of Abuse
004033 p.000300: access Access to Social Goods
004034 p.000300: age Diminished Autonomy
004035 p.000300: authority Relationship to Authority
004036 p.000300: autonomy Impaired Autonomy
004037 p.000300: cadavers Cadavers
004038 p.000300: capacity Fetus/Neonate
...

...
004152 p.000300: Economic Economic/Poverty poor
004153 p.000300: Economic Welfare Recipient welfare
004154 p.000300: General/Other Cultural Differences cultural
004155 p.000300: General/Other Cultural Differences culture
004156 p.000300: General/Other Dependent dependent
004157 p.000300: General/Other Diminished Autonomy age
004158 p.000300: General/Other Impaired Autonomy autonomy
004159 p.000300: General/Other Incapacitated incapacity
004160 p.000300: General/Other Laboratory Staff usage
004161 p.000300: General/Other Presence of Coercion coercion
...

Searching for indicator illegal:

(return to top)
...
000414 p.000300: (http://www.nhsresearchscotland.org.uk/226_Research+Ethics.html)
000415 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
000416 p.000300: 000323 p.000008: 8
000417 p.000300: 000324 p.000008:
000418 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
000419 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
000420 p.000300: ...
000421 p.000300:
000422 p.000300: ...
000423 p.000300: 000885 p.000021: arrangements-for-research-ethics-committees/)apply to research involving research participants recruited through the
...

...
001146 p.000300: (return to top)
001147 p.000300: ...
001148 p.000300: 001078 p.000026: generate. This is especially pertinent in the context of health-related research. But, in addition, social science
001149 p.000300: 001079 p.000026: raises a wider range of risks that needs to be considered by RECs. These include risk to a participant’s personal
001150 p.000300: 001080 p.000026: social standing, privacy, personal values and beliefs, their links tofamily and the wider community, and their
001151 p.000300: 001081 p.000026: position within occupational settings, as well as the adverse effects of revealing information that relates to illegal,
001152 p.000300: 001082 p.000026: sexual or deviant behaviour. Research, though it may carry no physical risk, can be disruptive and damaging to
001153 p.000300: research
001154 p.000300: 001083 p.000026: participants as individuals or to whole communities or categories of people, such as those with HIV infection.
001155 p.000300: 001084 p.000026:
...

...
001179 p.000300: (http://www.nhsresearchscotland.org.uk/226_Research+Ethics.html)
001180 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001181 p.000300: 000323 p.000008: 8
001182 p.000300: 000324 p.000008:
001183 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001184 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001185 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001186 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001187 p.000300: 000329 p.000008:
001188 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
...

...
001274 p.000300: 001076 p.000026: Risk is often defined by reference to the potential physical or psychologicalharm, discomfort, stress or reputational
001275 p.000300: 001077 p.000026: risk to human participants (and participating groups, organisations and funders) that a research project might
001276 p.000300: 001078 p.000026: generate. This is especially pertinent in the context of health-related research. But, in addition, social science
001277 p.000300: 001079 p.000026: raises a wider range of risks that needs to be considered by RECs. These include risk to a participant’s personal
001278 p.000300: 001080 p.000026: social standing, privacy, personal values and beliefs, their links tofamily and the wider community, and their
001279 p.000300: 001081 p.000026: position within occupational settings, as well as the adverse effects of revealing information that relates to illegal,
001280 p.000300: 001082 p.000026: sexual or deviant behaviour. Research, though it may carry no physical risk, can be disruptive and damaging to
001281 p.000300: research
001282 p.000300: ...
001283 p.000300:
...

...
001433 p.000300: ...
001434 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001435 p.000300: 000323 p.000008: 8
001436 p.000300: 000324 p.000008:
001437 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001438 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001439 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001440 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001441 p.000300: 000329 p.000008:
001442 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
...

...
001462 p.000300: 001076 p.000026: Risk is often defined by reference to the potential physical or psychologicalharm, discomfort, stress or reputational
001463 p.000300: 001077 p.000026: risk to human participants (and participating groups, organisations and funders) that a research project might
001464 p.000300: 001078 p.000026: generate. This is especially pertinent in the context of health-related research. But, in addition, social science
001465 p.000300: 001079 p.000026: raises a wider range of risks that needs to be considered by RECs. These include risk to a participant’s personal
001466 p.000300: 001080 p.000026: social standing, privacy, personal values and beliefs, their links tofamily and the wider community, and their
001467 p.000300: 001081 p.000026: position within occupational settings, as well as the adverse effects of revealing information that relates to illegal,
001468 p.000300: 001082 p.000026: sexual or deviant behaviour. Research, though it may carry no physical risk, can be disruptive and damaging to
001469 p.000300: research
001470 p.000300: 001083 p.000026: participants as individuals or to whole communities or categories of people, such as those with HIV infection.
001471 p.000300: 001084 p.000026:
...

...
001507 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
001508 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
001509 p.000300: Capacity
001510 p.000300: 001126 p.000027: Act 2005 and consent for research
001511 p.000300: ...
001512 p.000300: Political / Illegal Activity
001513 p.000300: Searching for indicator illegal:
001514 p.000300:
001515 p.000300: (return to top)
001516 p.000300: ...
001517 p.000300: 000321 p.000007: Scotland should be reviewed by the Scotland ‘A’ REC
001518 p.000300: (http://www.nhsresearchscotland.org.uk/226_Research+Ethics.html)
001519 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001520 p.000300: 000323 p.000008: 8
001521 p.000300: 000324 p.000008:
001522 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001523 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001524 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001525 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001526 p.000300: 000329 p.000008:
001527 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
...

...
001532 p.000300: 000465 p.000011: being consistent with legal and ethical guidelines (see also internet-mediated research in FAQs). The potential for
001533 p.000300: 000466 p.000011: identifiabilty of online sources, as well as ethical debates about how privacy is constituted in digital contexts,
001534 p.000300: 000467 p.000011: means that full ethics review may be appropriate for research involving these communities. For example, people often
001535 p.000300: 000468 p.000011: assume that social media sources are public domain, but it is quite likely that some service users – including
001536 p.000300: children
001537 p.000300: 000469 p.000011: – may not understand the implications of what they are doing, and those harvesting data may also uncover illegal
001538 p.000300: images
001539 p.000300: 000470 p.000011: or activities.
001540 p.000300: 000471 p.000011:
001541 p.000300: 000472 p.000011: Research that involves anonymised records and datasets that exist in the public domain may only require a light-touch
...

...
001546 p.000300: 000952 p.000023: the research interaction.
001547 p.000300: 000953 p.000023:
001548 p.000300: 000954 p.000023: Limits to confidentiality
001549 p.000300: 000955 p.000023: Researchers should, when eliciting consent, make clear the limits to confidentiality, particularly when working with
001550 p.000300: 000956 p.000023: potentially vulnerable individuals or groups - for example when undertaking research withchildren, families and
001551 p.000300: 000957 p.000023: vulnerable populations, or individuals involved in illegal activities. If for example an interview reveals that a
001552 p.000300: 000958 p.000023: participant or another person identified in the interview is in significant danger, the researcher will be obliged to
001553 p.000300: 000959 p.000023: take action in response to that disclosure. Researchers should have established procedures, necessary systems and
001554 p.000300: 000960 p.000023: appropriate contacts in place to activate help and support in the event of a disclosure. If the researcher feels it is
001555 p.000300: 000961 p.000023: necessary to break confidentiality, the participant should normally be informed what action is being taken by the
...

...
001559 p.000300: 001076 p.000026: Risk is often defined by reference to the potential physical or psychologicalharm, discomfort, stress or reputational
001560 p.000300: 001077 p.000026: risk to human participants (and participating groups, organisations and funders) that a research project might
001561 p.000300: 001078 p.000026: generate. This is especially pertinent in the context of health-related research. But, in addition, social science
001562 p.000300: 001079 p.000026: raises a wider range of risks that needs to be considered by RECs. These include risk to a participant’s personal
001563 p.000300: 001080 p.000026: social standing, privacy, personal values and beliefs, their links tofamily and the wider community, and their
001564 p.000300: 001081 p.000026: position within occupational settings, as well as the adverse effects of revealing information that relates to illegal,
001565 p.000300: 001082 p.000026: sexual or deviant behaviour. Research, though it may carry no physical risk, can be disruptive and damaging to
001566 p.000300: research
001567 p.000300: 001083 p.000026: participants as individuals or to whole communities or categories of people, such as those with HIV infection.
001568 p.000300: 001084 p.000026:
...

...
001574 p.000300: 001255 p.000030:
001575 p.000300: 001256 p.000030: What if it is not possible to obtain informed consent?
001576 p.000300: 001257 p.000030: Informed consent may be impracticable or meaningless in some research, such as research on crowd behaviour, or
001577 p.000300: may be
001578 p.000300: 001258 p.000030: contrary to the research design, as is sometimes the case in psychological experiments where fully informed consent
001579 p.000300: 001259 p.000030: would compromise the objective of the research. In some circumstances (such as when users of illegal drugs and
001580 p.000300: illegal
001581 p.000300: 001260 p.000030: groups are involved) written consent might also create unnecessary risks for research participants. Even in this last
001582 p.000300: 001261 p.000030: case a researcher should seek informed consent where possible to secure the trust and confidence of those involved,
001583 p.000300: but
001584 p.000300: 001262 p.000030: care must be taken to ensure than consent processes (eg asking for written signatures) do not pose risks to
...

...
001611 p.000300: (http://www.nhsresearchscotland.org.uk/226_Research+Ethics.html)
001612 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001613 p.000300: 000323 p.000008: 8
001614 p.000300: 000324 p.000008:
001615 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001616 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001617 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001618 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001619 p.000300: 000329 p.000008:
001620 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
...

...
002194 p.000300: 000465 p.000011: being consistent with legal and ethical guidelines (see also internet-mediated research in FAQs). The potential for
002195 p.000300: 000466 p.000011: identifiabilty of online sources, as well as ethical debates about how privacy is constituted in digital contexts,
002196 p.000300: 000467 p.000011: means that full ethics review may be appropriate for research involving these communities. For example, people often
002197 p.000300: 000468 p.000011: assume that social media sources are public domain, but it is quite likely that some service users – including
002198 p.000300: children
002199 p.000300: 000469 p.000011: – may not understand the implications of what they are doing, and those harvesting data may also uncover illegal
002200 p.000300: images
002201 p.000300: 000470 p.000011: or activities.
002202 p.000300: 000471 p.000011:
002203 p.000300: 000472 p.000011: Research that involves anonymised records and datasets that exist in the public domain may only require a light-touch
...

...
002237 p.000300: 000952 p.000023: the research interaction.
002238 p.000300: 000953 p.000023:
002239 p.000300: 000954 p.000023: Limits to confidentiality
002240 p.000300: 000955 p.000023: Researchers should, when eliciting consent, make clear the limits to confidentiality, particularly when working with
002241 p.000300: 000956 p.000023: potentially vulnerable individuals or groups - for example when undertaking research withchildren, families and
002242 p.000300: 000957 p.000023: vulnerable populations, or individuals involved in illegal activities. If for example an interview reveals that a
002243 p.000300: 000958 p.000023: participant or another person identified in the interview is in significant danger, the researcher will be obliged to
002244 p.000300: 000959 p.000023: take action in response to that disclosure. Researchers should have established procedures, necessary systems and
002245 p.000300: 000960 p.000023: appropriate contacts in place to activate help and support in the event of a disclosure. If the researcher feels it is
002246 p.000300: 000961 p.000023: necessary to break confidentiality, the participant should normally be informed what action is being taken by the
...

...
002457 p.000300: 000952 p.000023: the research interaction.
002458 p.000300: 000953 p.000023:
002459 p.000300: 000954 p.000023: Limits to confidentiality
002460 p.000300: 000955 p.000023: Researchers should, when eliciting consent, make clear the limits to confidentiality, particularly when working with
002461 p.000300: 000956 p.000023: potentially vulnerable individuals or groups - for example when undertaking research withchildren, families and
002462 p.000300: 000957 p.000023: vulnerable populations, or individuals involved in illegal activities. If for example an interview reveals that a
002463 p.000300: 000958 p.000023: participant or another person identified in the interview is in significant danger, the researcher will be obliged to
002464 p.000300: 000959 p.000023: take action in response to that disclosure. Researchers should have established procedures, necessary systems and
002465 p.000300: 000960 p.000023: appropriate contacts in place to activate help and support in the event of a disclosure. If the researcher feels it is
002466 p.000300: 000961 p.000023: necessary to break confidentiality, the participant should normally be informed what action is being taken by the
...

...
002659 p.000300: ...
002660 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
002661 p.000300: 000323 p.000008: 8
002662 p.000300: 000324 p.000008:
002663 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
002664 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
002665 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
002666 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
002667 p.000300: 000329 p.000008:
002668 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
...

...
002964 p.000300: ...
002965 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
002966 p.000300: 000323 p.000008: 8
002967 p.000300: 000324 p.000008:
002968 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
002969 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
002970 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
002971 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
002972 p.000300: 000329 p.000008:
002973 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
...

...
003031 p.000300: Searching for indicator deceased:
003032 p.000300:
003033 p.000300: (return to top)
003034 p.000300: ...
003035 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003036 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003037 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003038 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003039 p.000300: 000329 p.000008:
003040 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
...

...
003391 p.000300: 000465 p.000011: being consistent with legal and ethical guidelines (see also internet-mediated research in FAQs). The potential for
003392 p.000300: 000466 p.000011: identifiabilty of online sources, as well as ethical debates about how privacy is constituted in digital contexts,
003393 p.000300: 000467 p.000011: means that full ethics review may be appropriate for research involving these communities. For example, people often
003394 p.000300: 000468 p.000011: assume that social media sources are public domain, but it is quite likely that some service users – including
003395 p.000300: children
003396 p.000300: 000469 p.000011: – may not understand the implications of what they are doing, and those harvesting data may also uncover illegal
003397 p.000300: images
003398 p.000300: 000470 p.000011: or activities.
003399 p.000300: 000471 p.000011:
003400 p.000300: 000472 p.000011: Research that involves anonymised records and datasets that exist in the public domain may only require a light-touch
...

...
003569 p.000300: 001076 p.000026: Risk is often defined by reference to the potential physical or psychologicalharm, discomfort, stress or reputational
003570 p.000300: 001077 p.000026: risk to human participants (and participating groups, organisations and funders) that a research project might
003571 p.000300: 001078 p.000026: generate. This is especially pertinent in the context of health-related research. But, in addition, social science
003572 p.000300: 001079 p.000026: raises a wider range of risks that needs to be considered by RECs. These include risk to a participant’s personal
003573 p.000300: 001080 p.000026: social standing, privacy, personal values and beliefs, their links tofamily and the wider community, and their
003574 p.000300: 001081 p.000026: position within occupational settings, as well as the adverse effects of revealing information that relates to illegal,
003575 p.000300: 001082 p.000026: sexual or deviant behaviour. Research, though it may carry no physical risk, can be disruptive and damaging to
003576 p.000300: research
003577 p.000300: 001083 p.000026: participants as individuals or to whole communities or categories of people, such as those with HIV infection.
003578 p.000300: 001084 p.000026:
...

...
003962 p.000300: ...
003963 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
003964 p.000300: 000323 p.000008: 8
003965 p.000300: 000324 p.000008:
003966 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003967 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003968 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003969 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003970 p.000300: 000329 p.000008:
003971 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
...

...
003979 p.000300: ...
003980 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
003981 p.000300: 000323 p.000008: 8
003982 p.000300: 000324 p.000008:
003983 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003984 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003985 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003986 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003987 p.000300: 000329 p.000008:
003988 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
...

...
004057 p.000300: family Motherhood/Family
004058 p.000300: gender Gender
004059 p.000300: health Health
004060 p.000300: hiv HIV/AIDS
004061 p.000300: home Property Ownership
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
...

...
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
004174 p.000300: Health Mentally Disabled disability
004175 p.000300: Health Motherhood/Family family
004176 p.000300: Health Physically Ill illness
004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
004179 p.000300: Political Political political
004180 p.000300: Political Trade Union Membership union
004181 p.000300: Social Access to Social Goods access
...

Searching for indicator illegal activity:

(return to top)
...
001507 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
001508 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
001509 p.000300: Capacity
001510 p.000300: 001126 p.000027: Act 2005 and consent for research
001511 p.000300: ...
001512 p.000300: Political / Illegal Activity
001513 p.000300: Searching for indicator illegal:
001514 p.000300:
001515 p.000300: (return to top)
001516 p.000300: ...
001517 p.000300: 000321 p.000007: Scotland should be reviewed by the Scotland ‘A’ REC
...

...
004057 p.000300: family Motherhood/Family
004058 p.000300: gender Gender
004059 p.000300: health Health
004060 p.000300: hiv HIV/AIDS
004061 p.000300: home Property Ownership
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
...

...
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
004174 p.000300: Health Mentally Disabled disability
004175 p.000300: Health Motherhood/Family family
004176 p.000300: Health Physically Ill illness
004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
004179 p.000300: Political Political political
004180 p.000300: Political Trade Union Membership union
004181 p.000300: Social Access to Social Goods access
...

Political / Political

Searching for indicator party:

(return to top)
...
001584 p.000300: 001262 p.000030: care must be taken to ensure than consent processes (eg asking for written signatures) do not pose risks to
001585 p.000300: 001263 p.000030: participants. Such circumstances may encourage the researcher to seek valid consent from participants, which
001586 p.000300: ensures
001587 p.000300: ...
001588 p.000300:
001589 p.000300: Political / Political
001590 p.000300: Searching for indicator party:
001591 p.000300:
001592 p.000300: (return to top)
001593 p.000300: ...
001594 p.000300: 001589 p.000038: • Who will benefit from this research?
001595 p.000300: 001590 p.000038: • Have you considered anonymity and confidentiality?
001596 p.000300: 001591 p.000038: • How will you store your collected data?
001597 p.000300: 001592 p.000038: • How will data be disposed of and after how long?
001598 p.000300: 001593 p.000038: • Are there any conflicts of interest in undertaking this research, eg financial reward for outcomes?
001599 p.000300: 001594 p.000038: • Will you be collecting information through a third party?
001600 p.000300: 001595 p.000038: • Have you considered consent?
001601 p.000300: 001596 p.000038: o If using secondary data, does the consent from the primary data cover further analysis?
001602 p.000300: 001597 p.000038: o Can participants opt out?
001603 p.000300: 001598 p.000038: o Does your information sheet (or equivalent) contain all the information participants need?
...

...
004071 p.000300: nursing home In Nursing Home
004072 p.000300: officer Police Officer
004073 p.000300: Philosophical Differences/Difference of
004074 p.000300: opinion
004075 p.000300: Opinion
004076 p.000300: party Political
004077 p.000300: physically LGBTQ+ Status
004078 p.000300: political Political
004079 p.000300: poor Economic/Poverty
004080 p.000300: racial Racial Minority
004081 p.000300: religious Religion
004082 p.000300: restricted Incarcerated
...

...
004111 p.000300: ['cognitive', 'cognitive impairment',
004112 p.000300: impaired
004113 p.000300: 'impairment']
004114 p.000300: impairment ['cognitive', 'cognitive impairment', 'impaired']
004115 p.000300: influence ['drug']
004116 p.000300: party ['political']
004117 p.000300: political ['party']
004118 p.000300: poor ['economic']
004119 p.000300: religious ['special']
004120 p.000300: single ['engaged']
004121 p.000300: special ['religious']
...

...
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
004174 p.000300: Health Mentally Disabled disability
004175 p.000300: Health Motherhood/Family family
004176 p.000300: Health Physically Ill illness
004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
004179 p.000300: Political Political political
004180 p.000300: Political Trade Union Membership union
004181 p.000300: Social Access to Social Goods access
004182 p.000300: Social Breastfeeding Children justice
004183 p.000300: Social Child child
004184 p.000300: Social Child children
...

Searching for indicator political:

(return to top)
...
000055 p.000300: 001132 p.000027: This might arise for two reasons. First, as is recognised elsewhere (see Tri-Council of Canada, 2002
000056 p.000300: 001133 p.000027: (http://www.pre.ethics.gc.ca/English/policystatement/introduction.cfm)) research may be ‘deliberately and
000057 p.000300: legitimately
000058 p.000300: 001134 p.000027: opposed to the interests of the research participants or organisations’ in cases where the objectives of the
000059 p.000300: research
000060 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
000061 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
000062 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
000063 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
000064 p.000300: on
...

...
000196 p.000300: ensured.
000197 p.000300: 000840 p.000020:
000198 p.000300: 000841 p.000020: There are several considerations here:
000199 p.000300: 000842 p.000020:
000200 p.000300: 000843 p.000020: • inequities in regard to access to research resources
000201 p.000300: 000844 p.000020: • political and cultural considerations with regard to professional training and oversight; differingethics
000202 p.000300: 000845 p.000020: traditions in research
000203 p.000300: 000846 p.000020: • increased risk to researchers and participants where they are working remotely
000204 p.000300: 000847 p.000021: 21
000205 p.000300: 000848 p.000021:
...

...
000211 p.000300: 001132 p.000027: This might arise for two reasons. First, as is recognised elsewhere (see Tri-Council of Canada, 2002
000212 p.000300: 001133 p.000027: (http://www.pre.ethics.gc.ca/English/policystatement/introduction.cfm)) research may be ‘deliberately and
000213 p.000300: legitimately
000214 p.000300: 001134 p.000027: opposed to the interests of the research participants or organisations’ in cases where the objectives of the
000215 p.000300: research
000216 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
000217 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
000218 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
000219 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
000220 p.000300: on
...

...
000414 p.000300: (http://www.nhsresearchscotland.org.uk/226_Research+Ethics.html)
000415 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
000416 p.000300: 000323 p.000008: 8
000417 p.000300: 000324 p.000008:
000418 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
000419 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
000420 p.000300: ...
000421 p.000300:
000422 p.000300: ...
000423 p.000300: 000885 p.000021: arrangements-for-research-ethics-committees/)apply to research involving research participants recruited through the
...

...
001179 p.000300: (http://www.nhsresearchscotland.org.uk/226_Research+Ethics.html)
001180 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001181 p.000300: 000323 p.000008: 8
001182 p.000300: 000324 p.000008:
001183 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001184 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001185 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001186 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001187 p.000300: 000329 p.000008:
001188 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
...

...
001328 p.000300:
001329 p.000300: ...
001330 p.000300: 001787 p.000042: individual.
001331 p.000300: 001788 p.000042:
001332 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
001333 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
001334 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
001335 p.000300: Act
001336 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
001337 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
...

...
001433 p.000300: ...
001434 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001435 p.000300: 000323 p.000008: 8
001436 p.000300: 000324 p.000008:
001437 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001438 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001439 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001440 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001441 p.000300: 000329 p.000008:
001442 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
...

...
001507 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
001508 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
001509 p.000300: Capacity
001510 p.000300: 001126 p.000027: Act 2005 and consent for research
001511 p.000300: ...
001512 p.000300: Political / Illegal Activity
001513 p.000300: Searching for indicator illegal:
001514 p.000300:
001515 p.000300: (return to top)
001516 p.000300: ...
...

...
001518 p.000300: (http://www.nhsresearchscotland.org.uk/226_Research+Ethics.html)
001519 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001520 p.000300: 000323 p.000008: 8
001521 p.000300: 000324 p.000008:
001522 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001523 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001524 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001525 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001526 p.000300: 000329 p.000008:
001527 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
...

...
001584 p.000300: 001262 p.000030: care must be taken to ensure than consent processes (eg asking for written signatures) do not pose risks to
001585 p.000300: 001263 p.000030: participants. Such circumstances may encourage the researcher to seek valid consent from participants, which
001586 p.000300: ensures
001587 p.000300: ...
001588 p.000300:
001589 p.000300: Political / Political
001590 p.000300: Searching for indicator party:
001591 p.000300:
001592 p.000300: (return to top)
001593 p.000300: ...
001594 p.000300: 001589 p.000038: • Who will benefit from this research?
...

...
001601 p.000300: 001596 p.000038: o If using secondary data, does the consent from the primary data cover further analysis?
001602 p.000300: 001597 p.000038: o Can participants opt out?
001603 p.000300: 001598 p.000038: o Does your information sheet (or equivalent) contain all the information participants need?
001604 p.000300: ...
001605 p.000300:
001606 p.000300: Searching for indicator political:
001607 p.000300:
001608 p.000300: (return to top)
001609 p.000300: ...
001610 p.000300: 000321 p.000007: Scotland should be reviewed by the Scotland ‘A’ REC
001611 p.000300: (http://www.nhsresearchscotland.org.uk/226_Research+Ethics.html)
001612 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001613 p.000300: 000323 p.000008: 8
001614 p.000300: 000324 p.000008:
001615 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001616 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001617 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001618 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001619 p.000300: 000329 p.000008:
001620 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
...

...
001624 p.000300: 000370 p.000009: assistants working outside the UK in their own community.
001625 p.000300: 000371 p.000009:
001626 p.000300: 000372 p.000009: • Members of the public in a research capacity in research data collection, eg participatory research.
001627 p.000300: 000373 p.000009:
001628 p.000300: 000374 p.000009: • International partners or research undertaken outside of the UK where there may be issues of local practice and
001629 p.000300: 000375 p.000009: political sensitivities. In some cases partnership with a RO in the geographical area involved may prove helpful. It is
001630 p.000300: 000376 p.000009: also necessary to act in accordance with the legal and ethics review requirements in the countries included in the
001631 p.000300: 000377 p.000009: research. Researchers should also consider these issues when undertaking social media research, as most of this is
001632 p.000300: 000378 p.000009: international in scope as data are often drawn from a range of international settings.
001633 p.000300: 000379 p.000009:
...

...
001638 p.000300: ensured.
001639 p.000300: 000840 p.000020:
001640 p.000300: 000841 p.000020: There are several considerations here:
001641 p.000300: 000842 p.000020:
001642 p.000300: 000843 p.000020: • inequities in regard to access to research resources
001643 p.000300: 000844 p.000020: • political and cultural considerations with regard to professional training and oversight; differingethics
001644 p.000300: 000845 p.000020: traditions in research
001645 p.000300: 000846 p.000020: • increased risk to researchers and participants where they are working remotely
001646 p.000300: 000847 p.000021: 21
001647 p.000300: 000848 p.000021:
...

...
001652 p.000300: 000858 p.000021: a local RO or other relevant local experts (eg an NGO). Researchers should also consider these issues when
001653 p.000300: undertaking
001654 p.000300: 000859 p.000021: social media research as most of this is international in scope, as data is often drawn from a range of international
001655 p.000300: 000860 p.000021: settings.
001656 p.000300: 000861 p.000021:
001657 p.000300: 000862 p.000021: In addition, problems may occur where the research involves political sensitivities. Researchers may not be able to
001658 p.000300: 000863 p.000021: obtain permission for further research from authorities in that country unless they respect such sensitivities. Again,
001659 p.000300: 000864 p.000021: collaborating with a RO in the local area is good practice. RECs and researchers need to be alert to potential
001660 p.000300: 000865 p.000021: difficulties while staying true to the principles of the FRE.
001661 p.000300: 000866 p.000021:
...

...
001667 p.000300: 001132 p.000027: This might arise for two reasons. First, as is recognised elsewhere (see Tri-Council of Canada, 2002
001668 p.000300: 001133 p.000027: (http://www.pre.ethics.gc.ca/English/policystatement/introduction.cfm)) research may be ‘deliberately and
001669 p.000300: legitimately
001670 p.000300: 001134 p.000027: opposed to the interests of the research participants or organisations’ in cases where the objectives of the
001671 p.000300: research
001672 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
001673 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
001674 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
001675 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
001676 p.000300: on
...

...
001681 p.000300: 001155 p.000028:
001682 p.000300: 001156 p.000028: What are the risks in disseminating findings?
001683 p.000300: 001157 p.000028: The media can be very helpful in disseminating findings, but the possible impact on research participants, their
001684 p.000300: 001158 p.000028: families and organisations, and populations from which the sample is drawn needs to be thought through, particularly
001685 p.000300: 001159 p.000028: where anonymity may be jeopardised or where there is potential for stigmatisation of individuals or groups or of misuse
001686 p.000300: 001160 p.000028: or misrepresentations of research findings (eg to further political agendas).
001687 p.000300: 001161 p.000028:
001688 p.000300: 001162 p.000028: For example, descriptions of participants (eg in case studies) need to take care to ensure that they do not risk making
001689 p.000300: 001163 p.000028: those who take part identifiable, particularly if sample sizes are small or participants have distinctive
001690 p.000300: 001164 p.000028: characteristics that may make them recognisable. In some cases, for example in elite interviews, participants may wish
...

...
001696 p.000300: 001169 p.000028: Data Protection Act- A practical note for researchers
001697 p.000300: 001170 p.000028: (www.adls.ac.uk/wp-content/uploads/2011/04/Section-33-of-the-DPA-a-practical-note-for- researchers.pdf)).
001698 p.000300: 001171 p.000028:
001699 p.000300: 001172 p.000028: What is the impact on other areas of participants’ lives, such as their families and careers? Did they give
001700 p.000300: permission
001701 p.000300: 001173 p.000028: for the material to be data archived or shared with other researchers? Political sensitivities may arise when findings
001702 p.000300: 001174 p.000028: are contrary to local or national policy. It may be important to publish critical findings about policies and
001703 p.000300: 001175 p.000028: organisations, but was this within the original remit of the research? Were participants aware that this could be a
001704 p.000300: 001176 p.000028: consequence of their participation? When working with commercial and government organisations, principal
001705 p.000300: investigators
...

...
001710 p.000300: 001597 p.000038: o Can participants opt out?
001711 p.000300: 001598 p.000038: o Does your information sheet (or equivalent) contain all the information participants need?
001712 p.000300: 001599 p.000038: o If your research changes, how will consent be renegotiated?
001713 p.000300: 001600 p.000038: • Have you considered ethics within your plans for dissemination/impact?
001714 p.000300: 001601 p.000038: • Are you conducting research outside the UK? Are there any additional issues that need to be considered as a
001715 p.000300: 001602 p.000038: result? eg local customs, local ‘gatekeepers’, political sensitivities?
001716 p.000300: 001603 p.000038: • Which Ethics Committee is most appropriate for your research?
001717 p.000300: 001604 p.000038: • Have you considered the time you need to gain ethics review?
001718 p.000300: 001605 p.000038: • Have you considered what legal requirements your project will need to abide by? Eg Data Protection Act,
001719 p.000300: Freedom of
...

...
001724 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
001725 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
001726 p.000300: 001787 p.000042: individual.
001727 p.000300: 001788 p.000042:
001728 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
001729 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
001730 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
001731 p.000300: Act
001732 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
001733 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
001734 p.000300: 001794 p.000042: committed by him/her, the disposal of such proceedings or the sentence of any court in such proceedings.
001735 p.000300: ...
001736 p.000300:
001737 p.000300: Political / Trade Union Membership
001738 p.000300: Searching for indicator union:
001739 p.000300:
001740 p.000300: (return to top)
001741 p.000300: ...
...

...
001754 p.000300: ...
001755 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
001756 p.000300: 001787 p.000042: individual.
001757 p.000300: 001788 p.000042:
001758 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
001759 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
001760 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
001761 p.000300: Act
001762 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
001763 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
...

...
001885 p.000300: ensured.
001886 p.000300: 000840 p.000020:
001887 p.000300: 000841 p.000020: There are several considerations here:
001888 p.000300: 000842 p.000020:
001889 p.000300: 000843 p.000020: • inequities in regard to access to research resources
001890 p.000300: 000844 p.000020: • political and cultural considerations with regard to professional training and oversight; differingethics
001891 p.000300: 000845 p.000020: traditions in research
001892 p.000300: 000846 p.000020: • increased risk to researchers and participants where they are working remotely
001893 p.000300: 000847 p.000021: 21
001894 p.000300: 000848 p.000021:
...

...
002071 p.000300:
002072 p.000300: (return to top)
002073 p.000300: ...
002074 p.000300: 001134 p.000027: opposed to the interests of the research participants or organisations’ in cases where the objectives of the
002075 p.000300: research
002076 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
002077 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
002078 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
002079 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
002080 p.000300: on
...

...
002659 p.000300: ...
002660 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
002661 p.000300: 000323 p.000008: 8
002662 p.000300: 000324 p.000008:
002663 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
002664 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
002665 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
002666 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
002667 p.000300: 000329 p.000008:
002668 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
...

...
002691 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
002692 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
002693 p.000300: 001787 p.000042: individual.
002694 p.000300: 001788 p.000042:
002695 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
002696 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
002697 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
002698 p.000300: Act
002699 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
002700 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
...

...
002758 p.000300: 000370 p.000009: assistants working outside the UK in their own community.
002759 p.000300: 000371 p.000009:
002760 p.000300: 000372 p.000009: • Members of the public in a research capacity in research data collection, eg participatory research.
002761 p.000300: 000373 p.000009:
002762 p.000300: 000374 p.000009: • International partners or research undertaken outside of the UK where there may be issues of local practice and
002763 p.000300: 000375 p.000009: political sensitivities. In some cases partnership with a RO in the geographical area involved may prove helpful. It is
002764 p.000300: 000376 p.000009: also necessary to act in accordance with the legal and ethics review requirements in the countries included in the
002765 p.000300: ...
002766 p.000300:
002767 p.000300: ...
...

...
002964 p.000300: ...
002965 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
002966 p.000300: 000323 p.000008: 8
002967 p.000300: 000324 p.000008:
002968 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
002969 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
002970 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
002971 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
002972 p.000300: 000329 p.000008:
002973 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
...

...
003031 p.000300: Searching for indicator deceased:
003032 p.000300:
003033 p.000300: (return to top)
003034 p.000300: ...
003035 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003036 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003037 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003038 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003039 p.000300: 000329 p.000008:
003040 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
...

...
003286 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
003287 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
003288 p.000300: 001787 p.000042: individual.
003289 p.000300: 001788 p.000042:
003290 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
003291 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
003292 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
003293 p.000300: Act
003294 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
003295 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
...

...
003303 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
003304 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
003305 p.000300: 001787 p.000042: individual.
003306 p.000300: 001788 p.000042:
003307 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
003308 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
003309 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
003310 p.000300: Act
003311 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
003312 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
...

...
003361 p.000300:
003362 p.000300: ...
003363 p.000300: 000372 p.000009: • Members of the public in a research capacity in research data collection, eg participatory research.
003364 p.000300: 000373 p.000009:
003365 p.000300: 000374 p.000009: • International partners or research undertaken outside of the UK where there may be issues of local practice and
003366 p.000300: 000375 p.000009: political sensitivities. In some cases partnership with a RO in the geographical area involved may prove helpful. It is
003367 p.000300: 000376 p.000009: also necessary to act in accordance with the legal and ethics review requirements in the countries included in the
003368 p.000300: 000377 p.000009: research. Researchers should also consider these issues when undertaking social media research, as most of this is
003369 p.000300: 000378 p.000009: international in scope as data are often drawn from a range of international settings.
003370 p.000300: 000379 p.000009:
...

...
003460 p.000300: 000858 p.000021: a local RO or other relevant local experts (eg an NGO). Researchers should also consider these issues when
003461 p.000300: undertaking
003462 p.000300: 000859 p.000021: social media research as most of this is international in scope, as data is often drawn from a range of international
003463 p.000300: 000860 p.000021: settings.
003464 p.000300: 000861 p.000021:
003465 p.000300: 000862 p.000021: In addition, problems may occur where the research involves political sensitivities. Researchers may not be able to
003466 p.000300: 000863 p.000021: obtain permission for further research from authorities in that country unless they respect such sensitivities. Again,
003467 p.000300: ...
003468 p.000300:
003469 p.000300: ...
...

...
003603 p.000300: 001132 p.000027: This might arise for two reasons. First, as is recognised elsewhere (see Tri-Council of Canada, 2002
003604 p.000300: 001133 p.000027: (http://www.pre.ethics.gc.ca/English/policystatement/introduction.cfm)) research may be ‘deliberately and
003605 p.000300: legitimately
003606 p.000300: 001134 p.000027: opposed to the interests of the research participants or organisations’ in cases where the objectives of the
003607 p.000300: research
003608 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
003609 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
003610 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
003611 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
003612 p.000300: on
...

...
003962 p.000300: ...
003963 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
003964 p.000300: 000323 p.000008: 8
003965 p.000300: 000324 p.000008:
003966 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003967 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003968 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003969 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003970 p.000300: 000329 p.000008:
003971 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
...

...
003979 p.000300: ...
003980 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
003981 p.000300: 000323 p.000008: 8
003982 p.000300: 000324 p.000008:
003983 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003984 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003985 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003986 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003987 p.000300: 000329 p.000008:
003988 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
...

...
004071 p.000300: nursing home In Nursing Home
004072 p.000300: officer Police Officer
004073 p.000300: Philosophical Differences/Difference of
004074 p.000300: opinion
004075 p.000300: Opinion
004076 p.000300: party Political
004077 p.000300: physically LGBTQ+ Status
004078 p.000300: political Political
004079 p.000300: poor Economic/Poverty
004080 p.000300: racial Racial Minority
004081 p.000300: religious Religion
004082 p.000300: restricted Incarcerated
...

...
004111 p.000300: ['cognitive', 'cognitive impairment',
004112 p.000300: impaired
004113 p.000300: 'impairment']
004114 p.000300: impairment ['cognitive', 'cognitive impairment', 'impaired']
004115 p.000300: influence ['drug']
004116 p.000300: party ['political']
004117 p.000300: political ['party']
004118 p.000300: poor ['economic']
004119 p.000300: religious ['special']
004120 p.000300: single ['engaged']
004121 p.000300: special ['religious']
...

...
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
004174 p.000300: Health Mentally Disabled disability
004175 p.000300: Health Motherhood/Family family
004176 p.000300: Health Physically Ill illness
004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
004179 p.000300: Political Political political
004180 p.000300: Political Trade Union Membership union
004181 p.000300: Social Access to Social Goods access
004182 p.000300: Social Breastfeeding Children justice
004183 p.000300: Social Child child
004184 p.000300: Social Child children
...

Political / Trade Union Membership

Searching for indicator union:

(return to top)
...
001329 p.000300: ...
001330 p.000300: 001787 p.000042: individual.
001331 p.000300: 001788 p.000042:
001332 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
001333 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
001334 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
001335 p.000300: Act
001336 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
001337 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
001338 p.000300: 001794 p.000042: committed by him/her, the disposal of such proceedings or the sentence of any court in such proceedings.
...

...
001725 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
001726 p.000300: 001787 p.000042: individual.
001727 p.000300: 001788 p.000042:
001728 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
001729 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
001730 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
001731 p.000300: Act
001732 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
001733 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
001734 p.000300: 001794 p.000042: committed by him/her, the disposal of such proceedings or the sentence of any court in such proceedings.
001735 p.000300: ...
001736 p.000300:
001737 p.000300: Political / Trade Union Membership
001738 p.000300: Searching for indicator union:
001739 p.000300:
001740 p.000300: (return to top)
001741 p.000300: ...
001742 p.000300: 000863 p.000021: obtain permission for further research from authorities in that country unless they respect such sensitivities. Again,
001743 p.000300: 000864 p.000021: collaborating with a RO in the local area is good practice. RECs and researchers need to be alert to potential
001744 p.000300: 000865 p.000021: difficulties while staying true to the principles of the FRE.
001745 p.000300: 000866 p.000021:
001746 p.000300: 000867 p.000021: Co-funded research may involve the ESRC in partnership with other Research Councils, business, other public sector
001747 p.000300: 000868 p.000021: organisations, civil society sector or research funded under a European Union framework programme and involving
001748 p.000300: 000869 p.000021: research teams from different EU member states. For co-funded research there may be conflicting national or
001749 p.000300: 000870 p.000021: international review procedures. In each of these cases, co-funders will discuss and agree the ethics review
001750 p.000300: 000871 p.000021: requirements. There should be a commitment of mutual recognition of ethical consideration between funders, where
001751 p.000300: 000872 p.000021: possible, of common standards, and if not it should be made clear where researchers should go for advice.
...

...
001755 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
001756 p.000300: 001787 p.000042: individual.
001757 p.000300: 001788 p.000042:
001758 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
001759 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
001760 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
001761 p.000300: Act
001762 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
001763 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
001764 p.000300: 001794 p.000042: committed by him/her, the disposal of such proceedings or the sentence of any court in such proceedings.
...

...
001769 p.000300: 001879 p.000044: www.bps.org.uk/publications/policy-and-guidelines/research-guidelines-policy- documents/research-guidelines-poli
001770 p.000300: 001880 p.000044: • British Psychological Society Ethics Guidelines for internet-mediated research (2013)
001771 p.000300: 001881 p.000044: www.bps.org.uk/publications/policy-and-guidelines/research-guidelines-policy- documents/research-guidelines-poli
001772 p.000300: 001882 p.000044: • British Sociological Association ‘Statement of Ethical Practice’ (2002)
001773 p.000300: 001883 p.000044: http://www.britsoc.co.uk/about/equality/statement-of-ethical-practice.aspx
001774 p.000300: 001884 p.000044: • Charter of Fundamental Rights of the European Union (2000) www.europarl.europa.eu/charter/pdf/text_en.pdf
001775 p.000300: 001885 p.000044: • Committee on Publication Ethics (COPE) guidelines - http://publicationethics.org/resources/guidelines
001776 p.000300: 001886 p.000044: • Council of Europe (1953). Convention for the Protection of Human Rights and Fundamental Freedoms
001777 p.000300: 001887 p.000045: 45
001778 p.000300: 001888 p.000045:
...

...
002692 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
002693 p.000300: 001787 p.000042: individual.
002694 p.000300: 001788 p.000042:
002695 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
002696 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
002697 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
002698 p.000300: Act
002699 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
002700 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
002701 p.000300: ...
...

...
003287 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
003288 p.000300: 001787 p.000042: individual.
003289 p.000300: 001788 p.000042:
003290 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
003291 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
003292 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
003293 p.000300: Act
003294 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
003295 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
003296 p.000300: ...
...

...
003304 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
003305 p.000300: 001787 p.000042: individual.
003306 p.000300: 001788 p.000042:
003307 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
003308 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
003309 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
003310 p.000300: Act
003311 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
003312 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
003313 p.000300: 001794 p.000042: committed by him/her, the disposal of such proceedings or the sentence of any court in such proceedings.
...

...
004085 p.000300: social Social
004086 p.000300: special Religion
004087 p.000300: student Student
004088 p.000300: threat Threat of Stigma
004089 p.000300: undue influence Undue Influence
004090 p.000300: union Trade Union Membership
004091 p.000300: usage Laboratory Staff
004092 p.000300: violence Threat of Violence
004093 p.000300: vulnerable Child
004094 p.000300: welfare Welfare Recipient
...

...
004175 p.000300: Health Motherhood/Family family
004176 p.000300: Health Physically Ill illness
004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
004179 p.000300: Political Political political
004180 p.000300: Political Trade Union Membership union
004181 p.000300: Social Access to Social Goods access
004182 p.000300: Social Breastfeeding Children justice
004183 p.000300: Social Child child
004184 p.000300: Social Child children
...

Social / Access to Social Goods

Searching for indicator access:

(return to top)
...
000195 p.000300: 000839 p.000020: developing and undertaking the research. Legal and ethical requirements for all the partner countries must be
000196 p.000300: ensured.
000197 p.000300: 000840 p.000020:
000198 p.000300: 000841 p.000020: There are several considerations here:
000199 p.000300: 000842 p.000020:
000200 p.000300: 000843 p.000020: • inequities in regard to access to research resources
000201 p.000300: 000844 p.000020: • political and cultural considerations with regard to professional training and oversight; differingethics
000202 p.000300: 000845 p.000020: traditions in research
000203 p.000300: 000846 p.000020: • increased risk to researchers and participants where they are working remotely
000204 p.000300: 000847 p.000021: 21
...

...
000290 p.000300: 000316 p.000007:
000291 p.000300: ...
000292 p.000300:
000293 p.000300: ...
000294 p.000300: 000345 p.000008:
000295 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
000296 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
000297 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
000298 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
000299 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
000300 p.000300: gatekeeper
000301 p.000300: 000351 p.000008: (eg employees recruited through their workplace). Permission for access to other groups, for example participants in a
000302 p.000300: 000352 p.000008: long term cohort study, may also need to be requested from a data producer who controls access to the group.
000303 p.000300: 000353 p.000008:
000304 p.000300: 000354 p.000008: • Justified deception or research conducted without participants’ valid and informed consent at the time the
000305 p.000300: study
000306 p.000300: ...
000307 p.000300:
000308 p.000300: ...
000309 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
000310 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
000311 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
000312 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
000313 p.000300: 001188 p.000028:
000314 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
000315 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
000316 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
000317 p.000300: 001192 p.000029: 29
000318 p.000300: 001193 p.000029:
000319 p.000300: ...
...

...
000598 p.000300: ...
000599 p.000300: 001704 p.000040: framework is ethics review of each specific research project by an independentethics committee as well as strategies
000600 p.000300: 001705 p.000040: to update regularly the biobank donor and ongoing withdrawal opportunities. If anything in the framework changes, the
000601 p.000300: 001706 p.000040: participant should re-consent.
000602 p.000300: 001707 p.000040:
000603 p.000300: 001708 p.000040: Controlled data: are data which may be identifiable and thus potentially disclosive but to which access may be granted
000604 p.000300: 001709 p.000040: to users who have been accredited and their data usage has been approved by a relevant Data Access Committee.
000605 p.000300: Data
000606 p.000300: 001710 p.000040: service providers may provide details of their policies regarding access to controlled data, for example the UK Data
000607 p.000300: 001711 p.000040: Service (http://ukdataservice.ac.uk/get-data/data-access-policy/controlled-data.aspx).
000608 p.000300: 001712 p.000040:
000609 p.000300: 001713 p.000040: Data Custodian (Data Controller): is a person who determines the purposes for which and manner in which any
000610 p.000300: personal
000611 p.000300: ...
...

...
000633 p.000300: 001180 p.000028: 2.2 Consent
000634 p.000300: 001181 p.000028: What is informed consent?
000635 p.000300: 001182 p.000028: Informed consent entails giving sufficient information about the research and ensuring that there is no explicit or
000636 p.000300: 001183 p.000028: implicit coercion (see below) so that prospective participants can make an informed and free decision on their possible
000637 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
000638 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
000639 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
000640 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
000641 p.000300: ...
000642 p.000300:
...

...
001045 p.000300: (return to top)
001046 p.000300: ...
001047 p.000300: 000294 p.000007: a short lead time and are commissioned in response to a demand of pressing importance. Most RECs only permit
001048 p.000300: expedited
001049 p.000300: 000295 p.000007: review in exceptional and clearly justified cases. Such exceptions may include external drivers which are beyond the
001050 p.000300: 000296 p.000007: control of the researchers (eg access to a sample) which mean that ethics clearance is required within a short
001051 p.000300: 000297 p.000007: timescale, or when perhaps fieldwork is linked to a particular event or period that is outside the researcher’s
001052 p.000300: 000298 p.000007: control. An expedited review should meet the criteria required for a full review and should not be carried out by REC
001053 p.000300: 000299 p.000007: members who are in a position of dependence with the applicant which could be perceived as a conflict of interest.
001054 p.000300: 000300 p.000007:
...

...
001080 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
001081 p.000300: ...
001082 p.000300:
001083 p.000300: ...
001084 p.000300: 001502 p.000036:
001085 p.000300: 001503 p.000036: access to the groups or individuals to be recruited? (eg employees, students at school, members of self- help group,
001086 p.000300: 001504 p.000036: residents of nursing home?)
001087 p.000300: 001505 p.000036: Will it be necessary for participants to take part in the study without their knowledge and consent at the time? (eg
001088 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
001089 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
...

...
001236 p.000300:
001237 p.000300: ...
001238 p.000300: 000985 p.000024: • Data protected by legislation, for example personal data which includes census data and personal data provided
001239 p.000300: for
001240 p.000300: 000986 p.000024: administrative purposes. Here, the data producer and data custodian has a strong interest in how researchers will
001241 p.000300: 000987 p.000024: access the data, and may control access. This category of data may only be available via ‘safe settings’, see
001242 p.000300: for
001243 p.000300: 000988 p.000024: example ESRC’s Administrative Data Research Network (http://www.adrn.ac.uk/) and the Safe Haven Farr
001244 p.000300: Institute
001245 p.000300: 000989 p.000024: (http://www.ed.ac.uk/schools-departments/molecular-
...

...
001444 p.000300: ...
001445 p.000300:
001446 p.000300: ...
001447 p.000300: 000344 p.000008: sufficient. Issues however may arise when data are linked and where it may be possible to identify participants.
001448 p.000300: 000345 p.000008:
001449 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
001450 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
001451 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
001452 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
001453 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
001454 p.000300: gatekeeper
001455 p.000300: 000351 p.000008: (eg employees recruited through their workplace). Permission for access to other groups, for example participants in a
001456 p.000300: 000352 p.000008: long term cohort study, may also need to be requested from a data producer who controls access to the group.
001457 p.000300: 000353 p.000008:
001458 p.000300: ...
001459 p.000300:
001460 p.000300: ...
...

...
001637 p.000300: 000839 p.000020: developing and undertaking the research. Legal and ethical requirements for all the partner countries must be
001638 p.000300: ensured.
001639 p.000300: 000840 p.000020:
001640 p.000300: 000841 p.000020: There are several considerations here:
001641 p.000300: 000842 p.000020:
001642 p.000300: 000843 p.000020: • inequities in regard to access to research resources
001643 p.000300: 000844 p.000020: • political and cultural considerations with regard to professional training and oversight; differingethics
001644 p.000300: 000845 p.000020: traditions in research
001645 p.000300: 000846 p.000020: • increased risk to researchers and participants where they are working remotely
001646 p.000300: 000847 p.000021: 21
...

...
001776 p.000300: 001886 p.000044: • Council of Europe (1953). Convention for the Protection of Human Rights and Fundamental Freedoms
001777 p.000300: 001887 p.000045: 45
001778 p.000300: 001888 p.000045:
001779 p.000300: ...
001780 p.000300:
001781 p.000300: Social / Access to Social Goods
001782 p.000300: Searching for indicator access:
001783 p.000300:
001784 p.000300: (return to top)
001785 p.000300: ...
001786 p.000300: 000291 p.000007: number of research proposals that need to go to a full ethics review.
...

...
001788 p.000300: 000293 p.000007: Expedited review may be appropriate in exceptional circumstances where research projects require a full review but
001789 p.000300: have
001790 p.000300: 000294 p.000007: a short lead time and are commissioned in response to a demand of pressing importance. Most RECs only permit
001791 p.000300: expedited
001792 p.000300: 000295 p.000007: review in exceptional and clearly justified cases. Such exceptions may include external drivers which are beyond the
001793 p.000300: 000296 p.000007: control of the researchers (eg access to a sample) which mean that ethics clearance is required within a short
001794 p.000300: 000297 p.000007: timescale, or when perhaps fieldwork is linked to a particular event or period that is outside the researcher’s
001795 p.000300: 000298 p.000007: control. An expedited review should meet the criteria required for a full review and should not be carried out by REC
001796 p.000300: 000299 p.000007: members who are in a position of dependence with the applicant which could be perceived as a conflict of interest.
001797 p.000300: 000300 p.000007:
...

...
001800 p.000300: 000341 p.000008:
001801 p.000300: 000342 p.000008: • Administrative or controlled data. Appropriate approval within the relevant governance regime(s) is needed for use
001802 p.000300: 000343 p.000008: of these datasets. In many cases a light-touch review confirming that researchers have met these requirements will be
001803 p.000300: 000344 p.000008: sufficient. Issues however may arise when data are linked and where it may be possible to identify participants.
001804 p.000300: 000345 p.000008:
001805 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
001806 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
001807 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
001808 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
001809 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
001810 p.000300: gatekeeper
001811 p.000300: 000351 p.000008: (eg employees recruited through their workplace). Permission for access to other groups, for example participants in a
001812 p.000300: 000352 p.000008: long term cohort study, may also need to be requested from a data producer who controls access to the group.
001813 p.000300: 000353 p.000008:
001814 p.000300: 000354 p.000008: • Justified deception or research conducted without participants’ valid and informed consent at the time the
001815 p.000300: study
001816 p.000300: 000355 p.000008: is carried out. It is recognised that there are occasions when the use of covert research methods is necessary and
001817 p.000300: 000356 p.000008: justifiable and consent may need to be managed at a point beyond the completion of research fieldwork (see
001818 p.000300: Frequently
001819 p.000300: 000357 p.000008: Asked Questions).
001820 p.000300: 000358 p.000008:
001821 p.000300: 000359 p.000008: • Access to records of personal orsensitive confidential information, including genetic or other biological
001822 p.000300: 000360 p.000008: information, concerning identifiable individuals. See the Data Protection Act 1998
001823 p.000300: 000361 p.000008: (http://www.legislation.gov.uk/ukpga/1998/29/contents).
001824 p.000300: 000362 p.000009: 9
001825 p.000300: 000363 p.000009:
...

...
001829 p.000300: 000471 p.000011:
001830 p.000300: 000472 p.000011: Research that involves anonymised records and datasets that exist in the public domain may only require a light-touch
001831 p.000300: 000473 p.000011: review. This includes, for example, datasets available through the Office for National Statistics or ESRC’s data
001832 p.000300: 000474 p.000011: service providers where appropriate permissions have already been obtained and where the risk of identifying
001833 p.000300: 000475 p.000011: individuals from the information provided is negligible. Specific regulations relate to the use of administrative and
001834 p.000300: 000476 p.000011: controlled data (other data producers are likely to specify their own restrictions on the access to and use of their
001835 p.000300: 000477 p.000011: data), which should be complied with. There may be some circumstances where ethics issues arise with the re-use of
001836 p.000300: 000478 p.000011: data, as described in section 1.11
001837 p.000300: 000479 p.000011:
001838 p.000300: 000480 p.000011: ROs should ensure that there is a principal REC for their organisation, but may establish secondary RECs (for example
...

...
001843 p.000300: 000577 p.000014: submitted, as a significant proportion of applications are not funded. ROs and funding agencies should be flexible
001844 p.000300: 000578 p.000014: about the point at which review by a REC is required. In the majority of cases this will be immediately after
001845 p.000300: 000579 p.000014: notification of funding, but it could also be prior to a pilot study so that participants’ interests are protected;
001846 p.000300: 000580 p.000014: prior to seeking the agreement of potential research sites and gatekeepers so they can be assured of its good
001847 p.000300: standing;
001848 p.000300: 000581 p.000014: or prior to the main data collection when research instruments have been tested and access to participants agreed.
001849 p.000300: 000582 p.000014:
001850 p.000300: 000583 p.000014: • Identifying, documenting and dealing with conflicts of interests (see section1.6).
001851 p.000300: 000584 p.000014:
001852 p.000300: 000585 p.000014: • Methods of decision-making and recording decisions. ROs should record and make clear how they come to their
...

...
001856 p.000300: 000673 p.000016: • The use of approved protocols for commonly occurring situations. It will be the responsibility of the local REC to
001857 p.000300: 000674 p.000016: review the suggested protocol for the individual proposals.
001858 p.000300: 000675 p.000016:
001859 p.000300: 000676 p.000016: In order to facilitate greater transparency and the sharing of solutions to ethics dilemmas, ROs are encouraged to
001860 p.000300: 000677 p.000016: publish their approved protocols on the web for use by others.
001861 p.000300: 000678 p.000016: ROs giving access to their approved protocols cannot be expected to enter into any discussion on their use. Those
001862 p.000300: 000679 p.000016: making use of such protocols will need to justify to their RO why the suggested protocol is appropriate to their
001863 p.000300: 000680 p.000016: research.
001864 p.000300: 000681 p.000016:
001865 p.000300: 000682 p.000016:
...

...
001870 p.000300: 000771 p.000019: The aim of this training should be to build confidence in individuals to recognise the need for ethics scrutiny with
001871 p.000300: 000772 p.000019: regard to social science research; throughout the lifecycle of the research, which includes the research activity,
001872 p.000300: 000773 p.000019: knowledge exchange and impact activities and further ethical consideration required for potential re-use of data;
001873 p.000300: 000774 p.000019: training should also help individuals understand the RO’s requirements and procedures for review; and to
001874 p.000300: understand how
001875 p.000300: 000775 p.000019: to access additional help, both internal and external to the RO.
001876 p.000300: 000776 p.000019:
001877 p.000300: 000777 p.000019: In practical terms, training requirements are likely to include training for:
001878 p.000300: 000778 p.000019:
001879 p.000300: 000779 p.000019: • individual researchers
...

...
001884 p.000300: 000839 p.000020: developing and undertaking the research. Legal and ethical requirements for all the partner countries must be
001885 p.000300: ensured.
001886 p.000300: 000840 p.000020:
001887 p.000300: 000841 p.000020: There are several considerations here:
001888 p.000300: 000842 p.000020:
001889 p.000300: 000843 p.000020: • inequities in regard to access to research resources
001890 p.000300: 000844 p.000020: • political and cultural considerations with regard to professional training and oversight; differingethics
001891 p.000300: 000845 p.000020: traditions in research
001892 p.000300: 000846 p.000020: • increased risk to researchers and participants where they are working remotely
001893 p.000300: 000847 p.000021: 21
001894 p.000300: 000848 p.000021:
001895 p.000300: 000849 p.000021: • issues about gatekeepers (for example in some societies, access to research participants may not be possible
001896 p.000300: 000850 p.000021: without first obtaining permission from a community leader or female participant’s husband)
001897 p.000300: 000851 p.000021: • considerable differences in power between the researcher and the participant.
001898 p.000300: 000852 p.000021:
001899 p.000300: 000853 p.000021: Moreover, research ethics in some societies raises issues about what is meant byethics, and therefore how we
...

...
001905 p.000300: 000976 p.000024: obtaining consent. Further advice on securing consent for data re-use, as well as exemplar consent forms, are
001906 p.000300: available
001907 p.000300: 000977 p.000024: at the UK Data Service’s website (http://ukdataservice.ac.uk/manage- data/plan.aspx). In some cases it may not
001908 p.000300: be
001909 p.000300: 000978 p.000024: possible to sufficiently anonymise data in order for it to be available at the appropriate ESRC Data Service Provider
001910 p.000300: 000979 p.000024: (for example the UK Data Service) through a standard End User License, but alternative secure access methods could
001911 p.000300: be
001912 p.000300: 000980 p.000024: arranged.
001913 p.000300: 000981 p.000024:
001914 p.000300: 000982 p.000024: Data re-use falls into three categories:
001915 p.000300: 000983 p.000024:
001916 p.000300: 000984 p.000024: • Non-sensitive data or data where there is minimal risk of disclosure of the identity of individuals.
001917 p.000300: 000985 p.000024: • Data protected by legislation, for example personal data which includes census data and personal data provided
001918 p.000300: for
001919 p.000300: 000986 p.000024: administrative purposes. Here, the data producer and data custodian has a strong interest in how researchers will
001920 p.000300: 000987 p.000024: access the data, and may control access. This category of data may only be available via ‘safe settings’, see
001921 p.000300: for
001922 p.000300: 000988 p.000024: example ESRC’s Administrative Data Research Network (http://www.adrn.ac.uk/) and the Safe Haven Farr
001923 p.000300: Institute
001924 p.000300: 000989 p.000024: (http://www.ed.ac.uk/schools-departments/molecular-
...

...
001931 p.000300: date
001932 p.000300: 000994 p.000024: or postcode makes disclosure possible, perhaps via a link to other datasets. This means that such data are ethically
001933 p.000300: 000995 p.000024: sensitive.
001934 p.000300: 000996 p.000024:
001935 p.000300: 000997 p.000024: A data producer such as the Office for National Statistics (ONS) or other government departments may also have
001936 p.000300: 000998 p.000024: stringent requirements and restrictions relating to access and re-use of data that should be followed. Legal and data
001937 p.000300: 000999 p.000024: producer access requirements on the re-use of datasets should be complied with, including provisions relating to
001938 p.000300: 001000 p.000024: presumed consent and potential risk of disclosure of personal data. Appropriate ESRC Data Service Providers, for
001939 p.000300: 001001 p.000024: example the UK Data Service, should be approached in the first instance for advice on current data producer
001940 p.000300: 001002 p.000024: requirements. Researchers may also consult directly with data producers regarding project-specific issues.
001941 p.000300: 001003 p.000024:
...

...
001945 p.000300: 001015 p.000025:
001946 p.000300: 001016 p.000025: polling companies contracted to secure data will do so according to the ethics principles set out here. These
001947 p.000300: 001017 p.000025: organisations often operate according to codes of practice developed by bodies such as the Market Research Society
001948 p.000300: 001018 p.000025: (https://www.mrs.org.uk/).
001949 p.000300: 001019 p.000025:
001950 p.000300: 001020 p.000025: Data access through technology
001951 p.000300: 001021 p.000025: Researchers are now making greater use of datasets which have been generated through internet-mediated
001952 p.000300: technology and
001953 p.000300: 001022 p.000025: social media. Researchers need to consider the ethical issues which arise; for example, the interpretation of
001954 p.000300: anonymity
...

...
001956 p.000300: of
001957 p.000300: 001024 p.000025: informed consent in this context and the important issue of what permissions a researcher has over the data supplied
001958 p.000300: by
001959 p.000300: 001025 p.000025: the data producer (eg Facebook or Twitter data).
001960 p.000300: 001026 p.000025:
001961 p.000300: 001027 p.000025: Data access through biobank
001962 p.000300: 001028 p.000025: Social scientists are also making greater use of data held in a public or private biobank where broadconsent is often
001963 p.000300: 001029 p.000025: utilised. The UK Biobank (http://www.ukbiobank.ac.uk/ethics/) is an example of broad consent and has stringent
001964 p.000300: measures
001965 p.000300: 001030 p.000025: in place to ensure that participants are not identified.
...

...
001970 p.000300: 001180 p.000028: 2.2 Consent
001971 p.000300: 001181 p.000028: What is informed consent?
001972 p.000300: 001182 p.000028: Informed consent entails giving sufficient information about the research and ensuring that there is no explicit or
001973 p.000300: 001183 p.000028: implicit coercion (see below) so that prospective participants can make an informed and free decision on their possible
001974 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
001975 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
001976 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
001977 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
001978 p.000300: 001188 p.000028:
001979 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
001980 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
001981 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
001982 p.000300: 001192 p.000029: 29
001983 p.000300: 001193 p.000029:
001984 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
...

...
001988 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
001989 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
001990 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
001991 p.000300: 001501 p.000036: 36
001992 p.000300: 001502 p.000036:
001993 p.000300: 001503 p.000036: access to the groups or individuals to be recruited? (eg employees, students at school, members of self- help group,
001994 p.000300: 001504 p.000036: residents of nursing home?)
001995 p.000300: 001505 p.000036: Will it be necessary for participants to take part in the study without their knowledge and consent at the time? (eg
001996 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
001997 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
...

...
002001 p.000300: 001703 p.000040: research. Broad consent means consenting to a framework for future research of certain types. Included in this
002002 p.000300: 001704 p.000040: framework is ethics review of each specific research project by an independentethics committee as well as strategies
002003 p.000300: 001705 p.000040: to update regularly the biobank donor and ongoing withdrawal opportunities. If anything in the framework changes, the
002004 p.000300: 001706 p.000040: participant should re-consent.
002005 p.000300: 001707 p.000040:
002006 p.000300: 001708 p.000040: Controlled data: are data which may be identifiable and thus potentially disclosive but to which access may be granted
002007 p.000300: 001709 p.000040: to users who have been accredited and their data usage has been approved by a relevant Data Access Committee.
002008 p.000300: Data
002009 p.000300: 001710 p.000040: service providers may provide details of their policies regarding access to controlled data, for example the UK Data
002010 p.000300: 001711 p.000040: Service (http://ukdataservice.ac.uk/get-data/data-access-policy/controlled-data.aspx).
002011 p.000300: 001712 p.000040:
002012 p.000300: 001713 p.000040: Data Custodian (Data Controller): is a person who determines the purposes for which and manner in which any
002013 p.000300: personal
002014 p.000300: 001714 p.000040: data are to be processed in line with the Data Protection Act
...

...
002022 p.000300: participants
002023 p.000300: 001733 p.000041: do not need to be re-contacted should any of their personal data be reused for further research. Securing enduring
002024 p.000300: 001734 p.000041: consent may be essential in longitudinal studies. It may also be important for data for whichaccess is provided by the
002025 p.000300: 001735 p.000041: UK Data Service. Principles of preserving confidentiality apply.
002026 p.000300: 001736 p.000041:
002027 p.000300: 001737 p.000041: ESRC data service providers: Organisations funded by ESRC to coordinate with data owners to provide access to
002028 p.000300: data.
002029 p.000300: 001738 p.000041: This may be purchased, created or deposited for re-use (eg the UK Data Service (http://www.ukdataservice.ac.uk/)) or
002030 p.000300: 001739 p.000041: obtained and linked for specific approved projects (eg the Administrative Data Research Network
002031 p.000300: 001740 p.000041: (http://www.adrn.ac.uk/)). ESRC data service providers may also provide user support, training and strategic data
...

...
002037 p.000300: what
002038 p.000300: 001947 p.000046: the governance implications are https://ico.org.uk/media/for-organisations/documents/1546/data-controllers-and-data-
002039 p.000300: 001948 p.000046: processors-dp-guidance.pdf
002040 p.000300: 001949 p.000046: • Disclosure and Barring Service www.gov.uk/government/organisations/disclosure-and- barring-service
002041 p.000300: 001950 p.000046: • Disclosure Scotland www.disclosurescotland.co.uk/index.htm
002042 p.000300: 001951 p.000046: • Access Northern Ireland www.dojni.gov.uk/accessni
002043 p.000300: 001952 p.000046: • Freedom of Information Act 2000 www.legislation.gov.uk/ukpga/2000/36/contents
002044 p.000300: 001953 p.000046: • JISC FOI and Research Data
002045 p.000300: http://webarchive.nationalarchives.gov.uk/20140702233839/http://www.jisc.ac.uk/public
002046 p.000300: 001954 p.000046: ations/programmerelated/2010/foiresearchdata.aspx#downloads
002047 p.000300: 001955 p.000046: • Information Commissioner’s Office. How to access information from a public body
002048 p.000300: 001956 p.000046: https://ico.org.uk/for-the-public/official-information/
002049 p.000300: 001957 p.000046: • Information Commissioner’s Office. Guide to freedom of information
002050 p.000300: 001958 p.000046: https://ico.org.uk/for-organisations/guide-to-freedom-of-information/
002051 p.000300: 001959 p.000046: • The National Archives. Making a freedom of information request
...

...
002056 p.000300: 002003 p.000048: • Observatory for Responsible Research and Innovation in ICT http://responsible- innovation.org.uk/torrii/
002057 p.000300: 002004 p.000048: • Salway et al (2011) Ethnic diversity and inequality ethical and scientific rigour in social research. Joseph
002058 p.000300: 002005 p.000048: Roundtree Foundation www.jrf.org.uk/publications/ethnic-diversity- social-research
002059 p.000300: 002006 p.000048: • Stevens, Leslie A. and Laurie, Graeme, The Administrative Data Research Centre Scotland: A Scoping Report on
002060 p.000300: the
002061 p.000300: 002007 p.000048: Legal & Ethical Issues Arising from Access & Linkage of Administrative Data (August 27, 2014). Edinburgh School of
002062 p.000300: Law
002063 p.000300: 002008 p.000048: Research Paper No. 2014/35. Available at SSRN: http://ssrn.com/abstract=2487971 or
002064 p.000300: 002009 p.000048: http://dx.doi.org/10.2139/ssrn.2487971
002065 p.000300: 002010 p.000048:
...

...
002104 p.000300: 000997 p.000024: A data producer such as the Office for National Statistics (ONS) or other government departments may also have
002105 p.000300: ...
002106 p.000300:
002107 p.000300: ...
002108 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
002109 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
002110 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
002111 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
002112 p.000300: 001188 p.000028:
002113 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
002114 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
002115 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
002116 p.000300: 001192 p.000029: 29
002117 p.000300: 001193 p.000029:
002118 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
...

...
002177 p.000300: ...
002178 p.000300: 000342 p.000008: • Administrative or controlled data. Appropriate approval within the relevant governance regime(s) is needed for use
002179 p.000300: 000343 p.000008: of these datasets. In many cases a light-touch review confirming that researchers have met these requirements will be
002180 p.000300: 000344 p.000008: sufficient. Issues however may arise when data are linked and where it may be possible to identify participants.
002181 p.000300: 000345 p.000008:
002182 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
002183 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
002184 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
002185 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
002186 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
002187 p.000300: gatekeeper
002188 p.000300: 000351 p.000008: (eg employees recruited through their workplace). Permission for access to other groups, for example participants in a
002189 p.000300: ...
002190 p.000300:
002191 p.000300: ...
002192 p.000300: 000463 p.000011: critical to the research, such as in statements by public officials. For research that involves the use of social
...

...
002246 p.000300: 000961 p.000023: necessary to break confidentiality, the participant should normally be informed what action is being taken by the
002247 p.000300: ...
002248 p.000300:
002249 p.000300: ...
002250 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
002251 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
002252 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
002253 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
002254 p.000300: 001188 p.000028:
002255 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
002256 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
002257 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
002258 p.000300: 001192 p.000029: 29
002259 p.000300: 001193 p.000029:
002260 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
...

...
002466 p.000300: 000961 p.000023: necessary to break confidentiality, the participant should normally be informed what action is being taken by the
002467 p.000300: ...
002468 p.000300:
002469 p.000300: ...
002470 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
002471 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
002472 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
002473 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
002474 p.000300: 001188 p.000028:
002475 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
002476 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
002477 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
002478 p.000300: 001192 p.000029: 29
002479 p.000300: 001193 p.000029:
002480 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
...

...
002627 p.000300: (return to top)
002628 p.000300: ...
002629 p.000300: 000343 p.000008: of these datasets. In many cases a light-touch review confirming that researchers have met these requirements will be
002630 p.000300: 000344 p.000008: sufficient. Issues however may arise when data are linked and where it may be possible to identify participants.
002631 p.000300: 000345 p.000008:
002632 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
002633 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
002634 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
002635 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
002636 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
002637 p.000300: gatekeeper
002638 p.000300: 000351 p.000008: (eg employees recruited through their workplace). Permission for access to other groups, for example participants in a
002639 p.000300: 000352 p.000008: long term cohort study, may also need to be requested from a data producer who controls access to the group.
002640 p.000300: ...
002641 p.000300:
002642 p.000300: ...
002643 p.000300: 001575 p.000037: o anyone else be put at risk as a consequence of this research
...

...
002708 p.000300: 002003 p.000048: • Observatory for Responsible Research and Innovation in ICT http://responsible- innovation.org.uk/torrii/
002709 p.000300: 002004 p.000048: • Salway et al (2011) Ethnic diversity and inequality ethical and scientific rigour in social research. Joseph
002710 p.000300: 002005 p.000048: Roundtree Foundation www.jrf.org.uk/publications/ethnic-diversity- social-research
002711 p.000300: 002006 p.000048: • Stevens, Leslie A. and Laurie, Graeme, The Administrative Data Research Centre Scotland: A Scoping Report on
002712 p.000300: the
002713 p.000300: 002007 p.000048: Legal & Ethical Issues Arising from Access & Linkage of Administrative Data (August 27, 2014). Edinburgh School of
002714 p.000300: Law
002715 p.000300: 002008 p.000048: Research Paper No. 2014/35. Available at SSRN: http://ssrn.com/abstract=2487971 or
002716 p.000300: 002009 p.000048: http://dx.doi.org/10.2139/ssrn.2487971
002717 p.000300: ...
...

...
002981 p.000300: ...
002982 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
002983 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
002984 p.000300: 001501 p.000036: 36
002985 p.000300: 001502 p.000036:
002986 p.000300: 001503 p.000036: access to the groups or individuals to be recruited? (eg employees, students at school, members of self- help group,
002987 p.000300: 001504 p.000036: residents of nursing home?)
002988 p.000300: 001505 p.000036: Will it be necessary for participants to take part in the study without their knowledge and consent at the time? (eg
002989 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
002990 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
...

...
003048 p.000300: Searching for indicator literate:
003049 p.000300:
003050 p.000300: (return to top)
003051 p.000300: ...
003052 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
003053 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
003054 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
003055 p.000300: 001192 p.000029: 29
003056 p.000300: 001193 p.000029:
003057 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
...

...
003267 p.000300: ...
003268 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
003269 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
003270 p.000300: 001501 p.000036: 36
003271 p.000300: 001502 p.000036:
003272 p.000300: 001503 p.000036: access to the groups or individuals to be recruited? (eg employees, students at school, members of self- help group,
003273 p.000300: 001504 p.000036: residents of nursing home?)
003274 p.000300: 001505 p.000036: Will it be necessary for participants to take part in the study without their knowledge and consent at the time? (eg
003275 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
003276 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
...

...
003445 p.000300: 000771 p.000019: The aim of this training should be to build confidence in individuals to recognise the need for ethics scrutiny with
003446 p.000300: 000772 p.000019: regard to social science research; throughout the lifecycle of the research, which includes the research activity,
003447 p.000300: 000773 p.000019: knowledge exchange and impact activities and further ethical consideration required for potential re-use of data;
003448 p.000300: 000774 p.000019: training should also help individuals understand the RO’s requirements and procedures for review; and to
003449 p.000300: understand how
003450 p.000300: 000775 p.000019: to access additional help, both internal and external to the RO.
003451 p.000300: 000776 p.000019:
003452 p.000300: ...
003453 p.000300:
003454 p.000300: ...
...

...
003540 p.000300:
003541 p.000300: ...
003542 p.000300: 001017 p.000025: organisations often operate according to codes of practice developed by bodies such as the Market Research Society
003543 p.000300: 001018 p.000025: (https://www.mrs.org.uk/).
003544 p.000300: 001019 p.000025:
003545 p.000300: 001020 p.000025: Data access through technology
003546 p.000300: 001021 p.000025: Researchers are now making greater use of datasets which have been generated through internet-mediated
003547 p.000300: technology and
003548 p.000300: 001022 p.000025: social media. Researchers need to consider the ethical issues which arise; for example, the interpretation of
003549 p.000300: anonymity
...

...
003551 p.000300: of
003552 p.000300: 001024 p.000025: informed consent in this context and the important issue of what permissions a researcher has over the data supplied
003553 p.000300: by
003554 p.000300: 001025 p.000025: the data producer (eg Facebook or Twitter data).
003555 p.000300: 001026 p.000025:
003556 p.000300: 001027 p.000025: Data access through biobank
003557 p.000300: 001028 p.000025: Social scientists are also making greater use of data held in a public or private biobank where broadconsent is often
003558 p.000300: 001029 p.000025: utilised. The UK Biobank (http://www.ukbiobank.ac.uk/ethics/) is an example of broad consent and has stringent
003559 p.000300: measures
003560 p.000300: 001030 p.000025: in place to ensure that participants are not identified.
...

...
003823 p.000300: 002003 p.000048: • Observatory for Responsible Research and Innovation in ICT http://responsible- innovation.org.uk/torrii/
003824 p.000300: 002004 p.000048: • Salway et al (2011) Ethnic diversity and inequality ethical and scientific rigour in social research. Joseph
003825 p.000300: 002005 p.000048: Roundtree Foundation www.jrf.org.uk/publications/ethnic-diversity- social-research
003826 p.000300: 002006 p.000048: • Stevens, Leslie A. and Laurie, Graeme, The Administrative Data Research Centre Scotland: A Scoping Report on
003827 p.000300: the
003828 p.000300: 002007 p.000048: Legal & Ethical Issues Arising from Access & Linkage of Administrative Data (August 27, 2014). Edinburgh School of
003829 p.000300: Law
003830 p.000300: 002008 p.000048: Research Paper No. 2014/35. Available at SSRN: http://ssrn.com/abstract=2487971 or
003831 p.000300: 002009 p.000048: http://dx.doi.org/10.2139/ssrn.2487971
003832 p.000300: ...
...

...
004028 p.000300: ...
004029 p.000300: Appendix
004030 p.000300: Indicator List
004031 p.000300: Indicator Vulnerability
004032 p.000300: abuse Victim of Abuse
004033 p.000300: access Access to Social Goods
004034 p.000300: age Diminished Autonomy
004035 p.000300: authority Relationship to Authority
004036 p.000300: autonomy Impaired Autonomy
004037 p.000300: cadavers Cadavers
...

...
004176 p.000300: Health Physically Ill illness
004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
004179 p.000300: Political Political political
004180 p.000300: Political Trade Union Membership union
004181 p.000300: Social Access to Social Goods access
004182 p.000300: Social Breastfeeding Children justice
004183 p.000300: Social Child child
004184 p.000300: Social Child children
004185 p.000300: Social Child vulnerable
...

Searching for indicator social goods:

(return to top)
...
001776 p.000300: 001886 p.000044: • Council of Europe (1953). Convention for the Protection of Human Rights and Fundamental Freedoms
001777 p.000300: 001887 p.000045: 45
001778 p.000300: 001888 p.000045:
001779 p.000300: ...
001780 p.000300:
001781 p.000300: Social / Access to Social Goods
001782 p.000300: Searching for indicator access:
001783 p.000300:
001784 p.000300: (return to top)
001785 p.000300: ...
001786 p.000300: 000291 p.000007: number of research proposals that need to go to a full ethics review.
...

...
004028 p.000300: ...
004029 p.000300: Appendix
004030 p.000300: Indicator List
004031 p.000300: Indicator Vulnerability
004032 p.000300: abuse Victim of Abuse
004033 p.000300: access Access to Social Goods
004034 p.000300: age Diminished Autonomy
004035 p.000300: authority Relationship to Authority
004036 p.000300: autonomy Impaired Autonomy
004037 p.000300: cadavers Cadavers
...

...
004176 p.000300: Health Physically Ill illness
004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
004179 p.000300: Political Political political
004180 p.000300: Political Trade Union Membership union
004181 p.000300: Social Access to Social Goods access
004182 p.000300: Social Breastfeeding Children justice
004183 p.000300: Social Child child
004184 p.000300: Social Child children
004185 p.000300: Social Child vulnerable
...

Social / Breastfeeding Children

Searching for indicator justice:

(return to top)
...
000060 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
000061 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
000062 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
000063 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
000064 p.000300: on
000065 p.000300: 001139 p.000027: some of the research participants/organisations. Principles of justice should, however, mean that researchers would
000066 p.000300: 001140 p.000027: seek to minimise any personal harm to individuals. Secondly, researchers should also consider how to balance the
000067 p.000300: ...
000068 p.000300:
000069 p.000300: ...
...

...
000216 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
000217 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
000218 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
000219 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
000220 p.000300: on
000221 p.000300: 001139 p.000027: some of the research participants/organisations. Principles of justice should, however, mean that researchers would
000222 p.000300: 001140 p.000027: seek to minimise any personal harm to individuals. Secondly, researchers should also consider how to balance the
000223 p.000300: ...
000224 p.000300:
000225 p.000300: Searching for indicator culture:
...

...
001672 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
001673 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
001674 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
001675 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
001676 p.000300: on
001677 p.000300: 001139 p.000027: some of the research participants/organisations. Principles of justice should, however, mean that researchers would
001678 p.000300: ...
001679 p.000300:
001680 p.000300: ...
001681 p.000300: 001155 p.000028:
...

...
002065 p.000300: 002010 p.000048:
002066 p.000300: 002011 p.000048:
002067 p.000300: ...
002068 p.000300:
002069 p.000300: Social / Breastfeeding Children
002070 p.000300: Searching for indicator justice:
002071 p.000300:
002072 p.000300: (return to top)
002073 p.000300: ...
002074 p.000300: 001134 p.000027: opposed to the interests of the research participants or organisations’ in cases where the objectives of the
...

...
002076 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
002077 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
002078 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
002079 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
002080 p.000300: on
002081 p.000300: 001139 p.000027: some of the research participants/organisations. Principles of justice should, however, mean that researchers would
002082 p.000300: 001140 p.000027: seek to minimise any personal harm to individuals. Secondly, researchers should also consider how to balance the
002083 p.000300: 001141 p.000027: potential of immediate or short-term risks to research participants against longer-term gains to future beneficiaries.
002084 p.000300: 001142 p.000027: It is the responsibility of the research proposers to make such a case in detail to a REC. In making a decision RECs
002085 p.000300: 001143 p.000027: may wish to consider safety issues and whether participants should have the right of protection.
...

...
003608 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
003609 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
003610 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
003611 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
003612 p.000300: on
003613 p.000300: 001139 p.000027: some of the research participants/organisations. Principles of justice should, however, mean that researchers would
003614 p.000300: 001140 p.000027: seek to minimise any personal harm to individuals. Secondly, researchers should also consider how to balance the
003615 p.000300: 001141 p.000027: potential of immediate or short-term risks to research participants against longer-term gains to future beneficiaries.
003616 p.000300: 001142 p.000027: It is the responsibility of the research proposers to make such a case in detail to a REC. In making a decision RECs
003617 p.000300: ...
...

...
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
004070 p.000300: minor Youth/Minors
004071 p.000300: nursing home In Nursing Home
004072 p.000300: officer Police Officer
...

...
004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
004179 p.000300: Political Political political
004180 p.000300: Political Trade Union Membership union
004181 p.000300: Social Access to Social Goods access
004182 p.000300: Social Breastfeeding Children justice
004183 p.000300: Social Child child
004184 p.000300: Social Child children
004185 p.000300: Social Child vulnerable
004186 p.000300: Social Educational education
...

Social / Child

Searching for indicator child:

(return to top)
...
001244 p.000300: Institute
001245 p.000300: 000989 p.000024: (http://www.ed.ac.uk/schools-departments/molecular-
001246 p.000300: 000990 p.000024: clinical-medicine/health-services-research-unit/projects/safe-haven) collaboration, which have been set up,
001247 p.000300: 000991 p.000024: respectively, to ensure the safe use of administrative data and patient and research data for medical research across
001248 p.000300: 000992 p.000024: all diseases.
001249 p.000300: 000993 p.000024: • Data such as the National Child Development Study (NCDS), where the inclusion of information such as a birth
001250 p.000300: date
001251 p.000300: 000994 p.000024: or postcode makes disclosure possible, perhaps via a link to other datasets. This means that such data are ethically
001252 p.000300: ...
001253 p.000300:
...

...
001925 p.000300: 000990 p.000024: clinical-medicine/health-services-research-unit/projects/safe-haven) collaboration, which have been set up,
001926 p.000300: 000991 p.000024: respectively, to ensure the safe use of administrative data and patient and research data for medical research across
001927 p.000300: ...
001928 p.000300:
001929 p.000300: ...
001930 p.000300: 000993 p.000024: • Data such as the National Child Development Study (NCDS), where the inclusion of information such as a birth
001931 p.000300: date
001932 p.000300: 000994 p.000024: or postcode makes disclosure possible, perhaps via a link to other datasets. This means that such data are ethically
001933 p.000300: 000995 p.000024: sensitive.
001934 p.000300: 000996 p.000024:
...

...
001974 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
001975 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
001976 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
001977 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
001978 p.000300: 001188 p.000028:
001979 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
001980 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
001981 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
001982 p.000300: 001192 p.000029: 29
001983 p.000300: 001193 p.000029:
001984 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
001985 p.000300: ...
001986 p.000300:
001987 p.000300: ...
001988 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
001989 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
001990 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
001991 p.000300: 001501 p.000036: 36
001992 p.000300: 001502 p.000036:
...

...
002083 p.000300: 001141 p.000027: potential of immediate or short-term risks to research participants against longer-term gains to future beneficiaries.
002084 p.000300: 001142 p.000027: It is the responsibility of the research proposers to make such a case in detail to a REC. In making a decision RECs
002085 p.000300: 001143 p.000027: may wish to consider safety issues and whether participants should have the right of protection.
002086 p.000300: ...
002087 p.000300:
002088 p.000300: Social / Child
002089 p.000300: Searching for indicator child:
002090 p.000300:
002091 p.000300: (return to top)
002092 p.000300: ...
002093 p.000300: 000988 p.000024: example ESRC’s Administrative Data Research Network (http://www.adrn.ac.uk/) and the Safe Haven Farr
002094 p.000300: Institute
002095 p.000300: 000989 p.000024: (http://www.ed.ac.uk/schools-departments/molecular-
002096 p.000300: 000990 p.000024: clinical-medicine/health-services-research-unit/projects/safe-haven) collaboration, which have been set up,
002097 p.000300: 000991 p.000024: respectively, to ensure the safe use of administrative data and patient and research data for medical research across
002098 p.000300: 000992 p.000024: all diseases.
002099 p.000300: 000993 p.000024: • Data such as the National Child Development Study (NCDS), where the inclusion of information such as a birth
002100 p.000300: date
002101 p.000300: 000994 p.000024: or postcode makes disclosure possible, perhaps via a link to other datasets. This means that such data are ethically
002102 p.000300: 000995 p.000024: sensitive.
002103 p.000300: 000996 p.000024:
...

...
002108 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
002109 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
002110 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
002111 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
002112 p.000300: 001188 p.000028:
002113 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
002114 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
002115 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
002116 p.000300: 001192 p.000029: 29
002117 p.000300: 001193 p.000029:
002118 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
002119 p.000300: 001195 p.000029: this should wherever possible include a recorded written witness sign-off. In other circumstances, for example
002120 p.000300: 001196 p.000029: telephone interviews, this may not be possible. Where consent is not to be secured, a full statement justifying this
002121 p.000300: 001197 p.000029: should be submitted to the REC for review. In longitudinal research and data archiving it may be necessary to explain
002122 p.000300: 001198 p.000029: the need for (and limitations of) enduring consent (see Appendix C for a definition); it may also be necessary to
...

...
002133 p.000300: 001990 p.000047:
002134 p.000300: 001991 p.000047: Other links
002135 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
002136 p.000300: Science
002137 p.000300: 001993 p.000047: Research http://acss.wpengine.com/wp- content/uploads/2013/11/pb3_genericethicsprinciples.pdf
002138 p.000300: 001994 p.000047: • Dockett, S., Perry, B. (2011). Researching with young children: seeking assent. Child Indicators Research,
002139 p.000300: 001995 p.000047: 4(2):231-247, DOI: 10.1007/s12187-010-9084-0 www.victoria.ac.nz/education/pdf/ethics/Docket-Perry-2011.pdf
002140 p.000300: 001996 p.000048: 48
002141 p.000300: 001997 p.000048:
002142 p.000300: 001998 p.000048: • Ipsos-MORI Social Research Institute (2014). Dialogue on data
...

...
002250 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
002251 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
002252 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
002253 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
002254 p.000300: 001188 p.000028:
002255 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
002256 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
002257 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
002258 p.000300: 001192 p.000029: 29
002259 p.000300: 001193 p.000029:
002260 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
002261 p.000300: 001195 p.000029: this should wherever possible include a recorded written witness sign-off. In other circumstances, for example
002262 p.000300: 001196 p.000029: telephone interviews, this may not be possible. Where consent is not to be secured, a full statement justifying this
002263 p.000300: 001197 p.000029: should be submitted to the REC for review. In longitudinal research and data archiving it may be necessary to explain
002264 p.000300: 001198 p.000029: the need for (and limitations of) enduring consent (see Appendix C for a definition); it may also be necessary to
...

...
002370 p.000300: 001990 p.000047:
002371 p.000300: 001991 p.000047: Other links
002372 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
002373 p.000300: Science
002374 p.000300: 001993 p.000047: Research http://acss.wpengine.com/wp- content/uploads/2013/11/pb3_genericethicsprinciples.pdf
002375 p.000300: 001994 p.000047: • Dockett, S., Perry, B. (2011). Researching with young children: seeking assent. Child Indicators Research,
002376 p.000300: 001995 p.000047: 4(2):231-247, DOI: 10.1007/s12187-010-9084-0 www.victoria.ac.nz/education/pdf/ethics/Docket-Perry-2011.pdf
002377 p.000300: 001996 p.000048: 48
002378 p.000300: 001997 p.000048:
002379 p.000300: 001998 p.000048: • Ipsos-MORI Social Research Institute (2014). Dialogue on data
...

...
002470 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
002471 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
002472 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
002473 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
002474 p.000300: 001188 p.000028:
002475 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
002476 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
002477 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
002478 p.000300: 001192 p.000029: 29
002479 p.000300: 001193 p.000029:
002480 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
002481 p.000300: 001195 p.000029: this should wherever possible include a recorded written witness sign-off. In other circumstances, for example
002482 p.000300: ...
002483 p.000300:
002484 p.000300: ...
...

...
002594 p.000300: 001990 p.000047:
002595 p.000300: 001991 p.000047: Other links
002596 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
002597 p.000300: Science
002598 p.000300: 001993 p.000047: Research http://acss.wpengine.com/wp- content/uploads/2013/11/pb3_genericethicsprinciples.pdf
002599 p.000300: 001994 p.000047: • Dockett, S., Perry, B. (2011). Researching with young children: seeking assent. Child Indicators Research,
002600 p.000300: 001995 p.000047: 4(2):231-247, DOI: 10.1007/s12187-010-9084-0 www.victoria.ac.nz/education/pdf/ethics/Docket-Perry-2011.pdf
002601 p.000300: 001996 p.000048: 48
002602 p.000300: 001997 p.000048:
002603 p.000300: 001998 p.000048: • Ipsos-MORI Social Research Institute (2014). Dialogue on data
...

...
003047 p.000300: Social / Literacy
003048 p.000300: Searching for indicator literate:
003049 p.000300:
003050 p.000300: (return to top)
003051 p.000300: ...
003052 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
003053 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
003054 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
003055 p.000300: 001192 p.000029: 29
003056 p.000300: 001193 p.000029:
003057 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
003058 p.000300: 001195 p.000029: this should wherever possible include a recorded written witness sign-off. In other circumstances, for example
003059 p.000300: 001196 p.000029: telephone interviews, this may not be possible. Where consent is not to be secured, a full statement justifying this
003060 p.000300: 001197 p.000029: should be submitted to the REC for review. In longitudinal research and data archiving it may be necessary to explain
003061 p.000300: 001198 p.000029: the need for (and limitations of) enduring consent (see Appendix C for a definition); it may also be necessary to
...

...
003809 p.000300: 001990 p.000047:
003810 p.000300: 001991 p.000047: Other links
003811 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
003812 p.000300: Science
003813 p.000300: 001993 p.000047: Research http://acss.wpengine.com/wp- content/uploads/2013/11/pb3_genericethicsprinciples.pdf
003814 p.000300: 001994 p.000047: • Dockett, S., Perry, B. (2011). Researching with young children: seeking assent. Child Indicators Research,
003815 p.000300: 001995 p.000047: 4(2):231-247, DOI: 10.1007/s12187-010-9084-0 www.victoria.ac.nz/education/pdf/ethics/Docket-Perry-2011.pdf
003816 p.000300: 001996 p.000048: 48
003817 p.000300: 001997 p.000048:
003818 p.000300: 001998 p.000048: • Ipsos-MORI Social Research Institute (2014). Dialogue on data
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...
004034 p.000300: age Diminished Autonomy
004035 p.000300: authority Relationship to Authority
004036 p.000300: autonomy Impaired Autonomy
004037 p.000300: cadavers Cadavers
004038 p.000300: capacity Fetus/Neonate
004039 p.000300: child Child
004040 p.000300: children Child
004041 p.000300: coercion Presence of Coercion
004042 p.000300: cognitive Cognitive Impairment
004043 p.000300: cognitive impairment Cognitive Impairment
004044 p.000300: cultural Cultural Differences
...

...
004088 p.000300: threat Threat of Stigma
004089 p.000300: undue influence Undue Influence
004090 p.000300: union Trade Union Membership
004091 p.000300: usage Laboratory Staff
004092 p.000300: violence Threat of Violence
004093 p.000300: vulnerable Child
004094 p.000300: welfare Welfare Recipient
004095 p.000300: women Women
004096 p.000300:
004097 p.000300:
004098 p.000300: Indicator Peers (Indicators in Same Vulnerabilty)
004099 p.000300: Indicator Peers
004100 p.000300: child ['children', 'vulnerable']
004101 p.000300: children ['child', 'vulnerable']
004102 p.000300: cognitive ['cognitive impairment', 'impairment', 'impaired']
004103 p.000300: cognitive impairment ['cognitive', 'impairment', 'impaired']
004104 p.000300: cultural ['culture']
004105 p.000300: culture ['cultural']
...

...
004117 p.000300: political ['party']
004118 p.000300: poor ['economic']
004119 p.000300: religious ['special']
004120 p.000300: single ['engaged']
004121 p.000300: special ['religious']
004122 p.000300: vulnerable ['child', 'children']
004123 p.000300:
004124 p.000300:
004125 p.000300: Trigger Words
004126 p.000300: consent
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004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
004179 p.000300: Political Political political
004180 p.000300: Political Trade Union Membership union
004181 p.000300: Social Access to Social Goods access
004182 p.000300: Social Breastfeeding Children justice
004183 p.000300: Social Child child
004184 p.000300: Social Child children
004185 p.000300: Social Child vulnerable
004186 p.000300: Social Educational education
004187 p.000300: Social Educational educational
004188 p.000300: Social Elderly elderly
004189 p.000300: Social Ethnicity ethnic
...

Searching for indicator children:

(return to top)
...
000279 p.000300: ...
000280 p.000300: 000307 p.000007:
000281 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000282 p.000300: 000309 p.000007: Research involving:
000283 p.000300: 000310 p.000007:
000284 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000285 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000286 p.000300: 000313 p.000007:
000287 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000288 p.000300: research
000289 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
000291 p.000300: ...
000292 p.000300:
000293 p.000300: ...
000294 p.000300: 000345 p.000008:
000295 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
000296 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
000297 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
000298 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
000299 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
000300 p.000300: gatekeeper
...

...
000309 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
000310 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
000311 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
000312 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
000313 p.000300: 001188 p.000028:
000314 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
000315 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
000316 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
000317 p.000300: 001192 p.000029: 29
000318 p.000300: 001193 p.000029:
000319 p.000300: ...
000320 p.000300:
...

...
000340 p.000300: (return to top)
000341 p.000300: ...
000342 p.000300: 000944 p.000023: Proxy consent
000343 p.000300: 000945 p.000023: Proxy consent can be obtained by a person authorised to act on behalf of avulnerable person. Where proxy consent
000344 p.000300: for
000345 p.000300: 000946 p.000023: research participants is necessary, the best interests of the vulnerable person should be of the highest importance.
000346 p.000300: 000947 p.000023: Proxy consent should only be used when participants are unable toconsent themselves or where it is legally
000347 p.000300: necessary.
000348 p.000300: 000948 p.000023: Care should be taken when consent cannot be sought from the participants, and it should not be assumed that
000349 p.000300: agreement
000350 p.000300: 000949 p.000023: cannot be sought from children because of their age.
000351 p.000300: 000950 p.000023: When proxy consent is used agreed criteria should be provided to confirm participants fully understands to what they
000352 p.000300: 000951 p.000023: are participating, and criteria identifying signs of participants’ unwillingness to take part or wishing to terminate
000353 p.000300: 000952 p.000023: the research interaction.
000354 p.000300: 000953 p.000023:
...

...
000484 p.000300:
000485 p.000300: ...
000486 p.000300: 001282 p.000031: gatekeepers where necessary to undertake the research, for example from the relevant public sector organisation to
000487 p.000300: 001283 p.000031: undertake research on public sector property.
000488 p.000300: 001284 p.000031:
000489 p.000300: 001285 p.000031: How do you obtain consent from potentially vulnerable people?
000490 p.000300: 001286 p.000031: In cases where research involves potentially vulnerable groups, for example children, older persons or adults with
000491 p.000300: 001287 p.000031: learning disabilities (for those who fall under the remit of the Mental Capacity Act 2005/ Adults with Incapacity
000492 p.000300: 001288 p.000031: (Scotland) Act 2000 see below), every effort should be made to secure actively given informed consent from individual
000493 p.000300: 001289 p.000031: participants. Passive assent, including group assent (with consent given by a gatekeeper) should be avoided wherever
000494 p.000300: 001290 p.000031: possible, and every effort should be made to develop methods of seeking consent that are appropriate to the groups
000495 p.000300: 001291 p.000031: being studied, using expert advice, support and training where necessary.
000496 p.000300: ...
000497 p.000300:
000498 p.000300: ...
000499 p.000300: 001295 p.000031: legal equivalent). Researchers should consider whether mature children can confirm consent without adult approval,
000500 p.000300: for
000501 p.000300: 001296 p.000031: example there may be circumstances where seeking consent from parents could jeopardise the research (for
000502 p.000300: example, in
000503 p.000300: 001297 p.000031: research into teenage sexuality or alcohol use). In such circumstances, researchers will need to regard the potential
...

...
000543 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000544 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000545 p.000300: Scotland ‘A’
000546 p.000300: 001496 p.000035: REC).
000547 p.000300: 001497 p.000035: Research that may need a full review
000548 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
000549 p.000300: ...
000550 p.000300:
000551 p.000300: ...
000552 p.000300: 001653 p.000039: review by department REC
...

...
000660 p.000300: ...
000661 p.000300: 001226 p.000029: money. If you are planning to use this approach the Market Research Society
000662 p.000300: 001227 p.000029: (https://www.mrs.org.uk/standards/downloads/2008-01-
000663 p.000300: 001228 p.000029: 18%20Incentives%20and%20Free%20Prize%20Draws.pdf?SESSID=hbt5j57mhnb2vrs0pfsrs2 hma0) has published
000664 p.000300: useful guidelines on
000665 p.000300: 001229 p.000029: using free prize draws. Where children are involved, it is often appropriate to acknowledge their help with personal
000666 p.000300: 001230 p.000029: gifts, for example gift vouchers or gifts to participating schools. Incentives may be permissible, but anything which
000667 p.000300: 001231 p.000029: implies coercion is not.
000668 p.000300: 001232 p.000029:
000669 p.000300: 001233 p.000029:
...

...
000784 p.000300: ...
000785 p.000300:
000786 p.000300: ...
000787 p.000300: 001890 p.000045: • Department for Business, Innovation and Skills– Universal ethical code for scientists (2007)
000788 p.000300: 001891 p.000045: www.gov.uk/government/publications/universal-ethical-code-for-scientists
000789 p.000300: 001892 p.000045: • Ethical Research Involving Children (ERIC) www.childethics.com/
000790 p.000300: 001893 p.000045: • European Science Foundation (2011). European code of Conduct for Research Integrity
000791 p.000300: 001894 p.000045: www.esf.org/fileadmin/Public_documents/Publications/Code_Conduct_ResearchIntegri ty.pdf
000792 p.000300: 001895 p.000045: • Human Tissue Authority (2014). Code of Practice
000793 p.000300: www.hta.gov.uk/policiesandcodesofpractice/codesofpractice.cfm
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...
000914 p.000300: ...
000915 p.000300: 000307 p.000007:
000916 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000917 p.000300: 000309 p.000007: Research involving:
000918 p.000300: 000310 p.000007:
000919 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000920 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000921 p.000300: 000313 p.000007:
000922 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000923 p.000300: research
000924 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
000930 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000931 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000932 p.000300: Scotland ‘A’
000933 p.000300: 001496 p.000035: REC).
000934 p.000300: 001497 p.000035: Research that may need a full review
000935 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
000936 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
000937 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
000938 p.000300: 001501 p.000036: 36
000939 p.000300: 001502 p.000036:
...

...
000945 p.000300: ...
000946 p.000300: 000307 p.000007:
000947 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000948 p.000300: 000309 p.000007: Research involving:
000949 p.000300: 000310 p.000007:
000950 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000951 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000952 p.000300: 000313 p.000007:
000953 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000954 p.000300: research
000955 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
000961 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000962 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000963 p.000300: Scotland ‘A’
000964 p.000300: 001496 p.000035: REC).
000965 p.000300: 001497 p.000035: Research that may need a full review
000966 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
000967 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
000968 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
000969 p.000300: 001501 p.000036: 36
000970 p.000300: 001502 p.000036:
...

...
000995 p.000300: ...
000996 p.000300: 000307 p.000007:
000997 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000998 p.000300: 000309 p.000007: Research involving:
000999 p.000300: 000310 p.000007:
001000 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
001001 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
001002 p.000300: 000313 p.000007:
001003 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001004 p.000300: research
001005 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
001030 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
001031 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
001032 p.000300: Scotland ‘A’
001033 p.000300: 001496 p.000035: REC).
001034 p.000300: 001497 p.000035: Research that may need a full review
001035 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
001036 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
001037 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
001038 p.000300: 001501 p.000036: 36
001039 p.000300: 001502 p.000036:
...

...
001416 p.000300: 000306 p.000007: are not necessarily exempt from full review.
001417 p.000300: 000307 p.000007:
001418 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
001419 p.000300: 000309 p.000007: Research involving:
001420 p.000300: 000310 p.000007:
001421 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
001422 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
001423 p.000300: 000313 p.000007:
001424 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001425 p.000300: research
001426 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
001445 p.000300:
001446 p.000300: ...
001447 p.000300: 000344 p.000008: sufficient. Issues however may arise when data are linked and where it may be possible to identify participants.
001448 p.000300: 000345 p.000008:
001449 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
001450 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
001451 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
001452 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
001453 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
001454 p.000300: gatekeeper
...

...
001531 p.000300: 000464 p.000011: media, researchers will also need to abide by the regulations set by the data producers subject to such regulations
001532 p.000300: 000465 p.000011: being consistent with legal and ethical guidelines (see also internet-mediated research in FAQs). The potential for
001533 p.000300: 000466 p.000011: identifiabilty of online sources, as well as ethical debates about how privacy is constituted in digital contexts,
001534 p.000300: 000467 p.000011: means that full ethics review may be appropriate for research involving these communities. For example, people often
001535 p.000300: 000468 p.000011: assume that social media sources are public domain, but it is quite likely that some service users – including
001536 p.000300: children
001537 p.000300: 000469 p.000011: – may not understand the implications of what they are doing, and those harvesting data may also uncover illegal
001538 p.000300: images
001539 p.000300: 000470 p.000011: or activities.
001540 p.000300: 000471 p.000011:
...

...
001801 p.000300: 000342 p.000008: • Administrative or controlled data. Appropriate approval within the relevant governance regime(s) is needed for use
001802 p.000300: 000343 p.000008: of these datasets. In many cases a light-touch review confirming that researchers have met these requirements will be
001803 p.000300: 000344 p.000008: sufficient. Issues however may arise when data are linked and where it may be possible to identify participants.
001804 p.000300: 000345 p.000008:
001805 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
001806 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
001807 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
001808 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
001809 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
001810 p.000300: gatekeeper
...

...
001974 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
001975 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
001976 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
001977 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
001978 p.000300: 001188 p.000028:
001979 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
001980 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
001981 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
001982 p.000300: 001192 p.000029: 29
001983 p.000300: 001193 p.000029:
001984 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
001985 p.000300: ...
001986 p.000300:
001987 p.000300: ...
001988 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
001989 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
001990 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
001991 p.000300: 001501 p.000036: 36
001992 p.000300: 001502 p.000036:
...

...
002064 p.000300: 002009 p.000048: http://dx.doi.org/10.2139/ssrn.2487971
002065 p.000300: 002010 p.000048:
002066 p.000300: 002011 p.000048:
002067 p.000300: ...
002068 p.000300:
002069 p.000300: Social / Breastfeeding Children
002070 p.000300: Searching for indicator justice:
002071 p.000300:
002072 p.000300: (return to top)
002073 p.000300: ...
...

...
002108 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
002109 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
002110 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
002111 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
002112 p.000300: 001188 p.000028:
002113 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
002114 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
002115 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
002116 p.000300: 001192 p.000029: 29
002117 p.000300: 001193 p.000029:
002118 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
002119 p.000300: 001195 p.000029: this should wherever possible include a recorded written witness sign-off. In other circumstances, for example
002120 p.000300: 001196 p.000029: telephone interviews, this may not be possible. Where consent is not to be secured, a full statement justifying this
002121 p.000300: 001197 p.000029: should be submitted to the REC for review. In longitudinal research and data archiving it may be necessary to explain
002122 p.000300: 001198 p.000029: the need for (and limitations of) enduring consent (see Appendix C for a definition); it may also be necessary to
...

...
002133 p.000300: 001990 p.000047:
002134 p.000300: 001991 p.000047: Other links
002135 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
002136 p.000300: Science
002137 p.000300: 001993 p.000047: Research http://acss.wpengine.com/wp- content/uploads/2013/11/pb3_genericethicsprinciples.pdf
002138 p.000300: 001994 p.000047: • Dockett, S., Perry, B. (2011). Researching with young children: seeking assent. Child Indicators Research,
002139 p.000300: 001995 p.000047: 4(2):231-247, DOI: 10.1007/s12187-010-9084-0 www.victoria.ac.nz/education/pdf/ethics/Docket-Perry-2011.pdf
002140 p.000300: 001996 p.000048: 48
002141 p.000300: 001997 p.000048:
002142 p.000300: 001998 p.000048: • Ipsos-MORI Social Research Institute (2014). Dialogue on data
002143 p.000300: ...
002144 p.000300:
002145 p.000300: Searching for indicator children:
002146 p.000300:
002147 p.000300: (return to top)
002148 p.000300: ...
002149 p.000300: 000282 p.000006: Many student projects may require only a light-touch review. However, this cannot be assumed; projects, including
002150 p.000300: 000283 p.000006: student projects, which involve more than minimal risk, should receive a full REC review. Some RECs have facilitated
002151 p.000300: 000284 p.000006: ethics approval for research
002152 p.000300: 000285 p.000007: 7
002153 p.000300: 000286 p.000007:
002154 p.000300: 000287 p.000007: with potentially vulnerable people by establishing ethics protocols for commonly occurring situations, such as research
002155 p.000300: 000288 p.000007: undertaken with typically-developing children in mainstream school settings. If the researcher can confirm that they
002156 p.000300: 000289 p.000007: are abiding by the established protocol and that this is appropriate for their research, a light-touch review may be
002157 p.000300: 000290 p.000007: justified. The use of individual RO-approved research ethics protocols for commonly occurring situations may limit the
002158 p.000300: 000291 p.000007: number of research proposals that need to go to a full ethics review.
002159 p.000300: 000292 p.000007:
...

...
002163 p.000300: 000306 p.000007: are not necessarily exempt from full review.
002164 p.000300: 000307 p.000007:
002165 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
002166 p.000300: 000309 p.000007: Research involving:
002167 p.000300: 000310 p.000007:
002168 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002169 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002170 p.000300: 000313 p.000007:
002171 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002172 p.000300: research
002173 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
002178 p.000300: 000342 p.000008: • Administrative or controlled data. Appropriate approval within the relevant governance regime(s) is needed for use
002179 p.000300: 000343 p.000008: of these datasets. In many cases a light-touch review confirming that researchers have met these requirements will be
002180 p.000300: 000344 p.000008: sufficient. Issues however may arise when data are linked and where it may be possible to identify participants.
002181 p.000300: 000345 p.000008:
002182 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
002183 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
002184 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
002185 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
002186 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
002187 p.000300: gatekeeper
...

...
002193 p.000300: 000464 p.000011: media, researchers will also need to abide by the regulations set by the data producers subject to such regulations
002194 p.000300: 000465 p.000011: being consistent with legal and ethical guidelines (see also internet-mediated research in FAQs). The potential for
002195 p.000300: 000466 p.000011: identifiabilty of online sources, as well as ethical debates about how privacy is constituted in digital contexts,
002196 p.000300: 000467 p.000011: means that full ethics review may be appropriate for research involving these communities. For example, people often
002197 p.000300: 000468 p.000011: assume that social media sources are public domain, but it is quite likely that some service users – including
002198 p.000300: children
002199 p.000300: 000469 p.000011: – may not understand the implications of what they are doing, and those harvesting data may also uncover illegal
002200 p.000300: images
002201 p.000300: 000470 p.000011: or activities.
002202 p.000300: 000471 p.000011:
...

...
002207 p.000300: 000928 p.000022: research will still need to
002208 p.000300: 000929 p.000023: 23
002209 p.000300: 000930 p.000023:
002210 p.000300: 000931 p.000023: adhere to professional codes of practice, legal requirements and compliance with the Data Protection Act, 1998.
002211 p.000300: 000932 p.000023:
002212 p.000300: 000933 p.000023: Work with potentially vulnerable groups
002213 p.000300: 000934 p.000023: In most cases, researchers working with vulnerable people will need to secure Disclosure and Barring Service (DBS)
002214 p.000300: 000935 p.000023: clearance (https://www.gov.uk/government/organisations/disclosure-and-barring-service). The DBS offers
002215 p.000300: organisations a
002216 p.000300: 000936 p.000023: means to check the criminal record of researchers to ensure that they do not have a history that would make them
002217 p.000300: 000937 p.000023: unsuitable for work involving children and vulnerable adults. The responsibility for ensuring that applicants are
002218 p.000300: 000938 p.000023: suitable to work with such groups ultimately rests with individual employers. In some cases other individuals (such as
002219 p.000300: 000939 p.000023: a head teacher or social services manager) may be better placed to provide information on necessary disclosures (see
002220 p.000300: 000940 p.000023: the Safeguarding Vulnerable Groups Act 2006 (http://www.legislation.gov.uk/ukpga/2006/47/contents); Rehabilitation
002221 p.000300: of
002222 p.000300: 000941 p.000023: Offenders Act 1974 (http://www.legislation.gov.uk/ukpga/1974/53); the Rehabilitation of Offenders Act 1974
002223 p.000300: (Exceptions
002224 p.000300: 000942 p.000023: Order 1975 (http://www.legislation.gov.uk/uksi/2013/1198/contents/made)).
002225 p.000300: 000943 p.000023:
002226 p.000300: 000944 p.000023: Proxy consent
002227 p.000300: 000945 p.000023: Proxy consent can be obtained by a person authorised to act on behalf of avulnerable person. Where proxy consent
002228 p.000300: for
002229 p.000300: 000946 p.000023: research participants is necessary, the best interests of the vulnerable person should be of the highest importance.
002230 p.000300: 000947 p.000023: Proxy consent should only be used when participants are unable toconsent themselves or where it is legally
002231 p.000300: necessary.
002232 p.000300: 000948 p.000023: Care should be taken when consent cannot be sought from the participants, and it should not be assumed that
002233 p.000300: agreement
002234 p.000300: 000949 p.000023: cannot be sought from children because of their age.
002235 p.000300: 000950 p.000023: When proxy consent is used agreed criteria should be provided to confirm participants fully understands to what they
002236 p.000300: 000951 p.000023: are participating, and criteria identifying signs of participants’ unwillingness to take part or wishing to terminate
002237 p.000300: 000952 p.000023: the research interaction.
002238 p.000300: 000953 p.000023:
...

...
002250 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
002251 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
002252 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
002253 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
002254 p.000300: 001188 p.000028:
002255 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
002256 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
002257 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
002258 p.000300: 001192 p.000029: 29
002259 p.000300: 001193 p.000029:
002260 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
002261 p.000300: 001195 p.000029: this should wherever possible include a recorded written witness sign-off. In other circumstances, for example
002262 p.000300: 001196 p.000029: telephone interviews, this may not be possible. Where consent is not to be secured, a full statement justifying this
002263 p.000300: 001197 p.000029: should be submitted to the REC for review. In longitudinal research and data archiving it may be necessary to explain
002264 p.000300: 001198 p.000029: the need for (and limitations of) enduring consent (see Appendix C for a definition); it may also be necessary to
...

...
002270 p.000300: spend
002271 p.000300: 001226 p.000029: money. If you are planning to use this approach the Market Research Society
002272 p.000300: 001227 p.000029: (https://www.mrs.org.uk/standards/downloads/2008-01-
002273 p.000300: 001228 p.000029: 18%20Incentives%20and%20Free%20Prize%20Draws.pdf?SESSID=hbt5j57mhnb2vrs0pfsrs2 hma0) has published
002274 p.000300: useful guidelines on
002275 p.000300: 001229 p.000029: using free prize draws. Where children are involved, it is often appropriate to acknowledge their help with personal
002276 p.000300: 001230 p.000029: gifts, for example gift vouchers or gifts to participating schools. Incentives may be permissible, but anything which
002277 p.000300: 001231 p.000029: implies coercion is not.
002278 p.000300: 001232 p.000029:
002279 p.000300: 001233 p.000029:
...

...
002283 p.000300: 001280 p.000031: aims and objectives of the research and given the opportunity to withdraw their data from the study (eg experimental
002284 p.000300: 001281 p.000031: studies involving deception). Researchers should also ensure they have received the relevant permission from
002285 p.000300: 001282 p.000031: gatekeepers where necessary to undertake the research, for example from the relevant public sector organisation to
002286 p.000300: 001283 p.000031: undertake research on public sector property.
002287 p.000300: 001284 p.000031:
002288 p.000300: 001285 p.000031: How do you obtain consent from potentially vulnerable people?
002289 p.000300: 001286 p.000031: In cases where research involves potentially vulnerable groups, for example children, older persons or adults with
002290 p.000300: 001287 p.000031: learning disabilities (for those who fall under the remit of the Mental Capacity Act 2005/ Adults with Incapacity
002291 p.000300: 001288 p.000031: (Scotland) Act 2000 see below), every effort should be made to secure actively given informed consent from individual
002292 p.000300: 001289 p.000031: participants. Passive assent, including group assent (with consent given by a gatekeeper) should be avoided wherever
002293 p.000300: 001290 p.000031: possible, and every effort should be made to develop methods of seeking consent that are appropriate to the groups
002294 p.000300: 001291 p.000031: being studied, using expert advice, support and training where necessary.
002295 p.000300: 001292 p.000031:
002296 p.000300: 001293 p.000031: In the case of research on children, one cannot expect parents alone to provide approval on theirchildren’s
002297 p.000300: behalf. In
002298 p.000300: 001294 p.000031: such cases, every effort should be made to deal with consent through dialogue with both children and their parents
002299 p.000300: (or
002300 p.000300: 001295 p.000031: legal equivalent). Researchers should consider whether mature children can confirm consent without adult approval,
002301 p.000300: for
002302 p.000300: 001296 p.000031: example there may be circumstances where seeking consent from parents could jeopardise the research (for
002303 p.000300: example, in
002304 p.000300: 001297 p.000031: research into teenage sexuality or alcohol use). In such circumstances, researchers will need to regard the potential
...

...
002310 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002311 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002312 p.000300: Scotland ‘A’
002313 p.000300: 001496 p.000035: REC).
002314 p.000300: 001497 p.000035: Research that may need a full review
002315 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
002316 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
002317 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
002318 p.000300: 001501 p.000036: 36
002319 p.000300: 001502 p.000036:
...

...
002323 p.000300: 001575 p.000037: o anyone else be put at risk as a consequence of this research
002324 p.000300: 001576 p.000037: • What might these risks be?
002325 p.000300: 001577 p.000037: • How can these risks be addressed?
002326 p.000300: 001578 p.000037: • How will you protect your data at the research site and away from the research site?
002327 p.000300: 001579 p.000037: • Details and recruitment of participants:
002328 p.000300: 001580 p.000037: o What types of people will be recruited? Eg students, children, people with learning disabilities, elderly
002329 p.000300: 001581 p.000037: o How will the competence of participants to give informed consent be determined?
002330 p.000300: 001582 p.000038: 38
002331 p.000300: 001583 p.000038:
002332 p.000300: 001584 p.000038: o How, where, and by whom participants will be identified, approached, and recruited?
...

...
002336 p.000300: 001739 p.000041: obtained and linked for specific approved projects (eg the Administrative Data Research Network
002337 p.000300: 001740 p.000041: (http://www.adrn.ac.uk/)). ESRC data service providers may also provide user support, training and strategic data
002338 p.000300: 001741 p.000041: related advice.
002339 p.000300: 001742 p.000041:
002340 p.000300: 001743 p.000041: Ethics protocols: The use of approved protocols for commonly occurring situations such as research with normally
002341 p.000300: 001744 p.000041: developing children in schools. These can expedite ethics review as principal investigators can confirm in a
002342 p.000300: 001745 p.000041: light-touch review to their REC that there is an approved protocol that appropriately covers the ethics issues raise by
002343 p.000300: 001746 p.000041: their research. It will be the responsibility of the local REC to approve the suggested protocol for the work.
002344 p.000300: 001747 p.000041:
002345 p.000300: 001748 p.000041: Expedited review: In exceptional circumstances, it may be necessary for a proposal involving possible risk of harm to
...

...
002349 p.000300: 001887 p.000045: 45
002350 p.000300: 001888 p.000045:
002351 p.000300: 001889 p.000045: http://conventions.coe.int/Treaty/Commun/QueVoulezVous.asp?NT=005&CM=7&DF= 16/01/2015&CL=ENG
002352 p.000300: 001890 p.000045: • Department for Business, Innovation and Skills– Universal ethical code for scientists (2007)
002353 p.000300: 001891 p.000045: www.gov.uk/government/publications/universal-ethical-code-for-scientists
002354 p.000300: 001892 p.000045: • Ethical Research Involving Children (ERIC) www.childethics.com/
002355 p.000300: 001893 p.000045: • European Science Foundation (2011). European code of Conduct for Research Integrity
002356 p.000300: 001894 p.000045: www.esf.org/fileadmin/Public_documents/Publications/Code_Conduct_ResearchIntegri ty.pdf
002357 p.000300: 001895 p.000045: • Human Tissue Authority (2014). Code of Practice
002358 p.000300: www.hta.gov.uk/policiesandcodesofpractice/codesofpractice.cfm
...

...
002370 p.000300: 001990 p.000047:
002371 p.000300: 001991 p.000047: Other links
002372 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
002373 p.000300: Science
002374 p.000300: 001993 p.000047: Research http://acss.wpengine.com/wp- content/uploads/2013/11/pb3_genericethicsprinciples.pdf
002375 p.000300: 001994 p.000047: • Dockett, S., Perry, B. (2011). Researching with young children: seeking assent. Child Indicators Research,
002376 p.000300: 001995 p.000047: 4(2):231-247, DOI: 10.1007/s12187-010-9084-0 www.victoria.ac.nz/education/pdf/ethics/Docket-Perry-2011.pdf
002377 p.000300: 001996 p.000048: 48
002378 p.000300: 001997 p.000048:
002379 p.000300: 001998 p.000048: • Ipsos-MORI Social Research Institute (2014). Dialogue on data
...

...
002385 p.000300: 000282 p.000006: Many student projects may require only a light-touch review. However, this cannot be assumed; projects, including
002386 p.000300: 000283 p.000006: student projects, which involve more than minimal risk, should receive a full REC review. Some RECs have facilitated
002387 p.000300: 000284 p.000006: ethics approval for research
002388 p.000300: 000285 p.000007: 7
002389 p.000300: 000286 p.000007:
002390 p.000300: 000287 p.000007: with potentially vulnerable people by establishing ethics protocols for commonly occurring situations, such as research
002391 p.000300: 000288 p.000007: undertaken with typically-developing children in mainstream school settings. If the researcher can confirm that they
002392 p.000300: 000289 p.000007: are abiding by the established protocol and that this is appropriate for their research, a light-touch review may be
002393 p.000300: 000290 p.000007: justified. The use of individual RO-approved research ethics protocols for commonly occurring situations may limit the
002394 p.000300: 000291 p.000007: number of research proposals that need to go to a full ethics review.
002395 p.000300: 000292 p.000007:
...

...
002399 p.000300: 000306 p.000007: are not necessarily exempt from full review.
002400 p.000300: 000307 p.000007:
002401 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
002402 p.000300: 000309 p.000007: Research involving:
002403 p.000300: 000310 p.000007:
002404 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002405 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002406 p.000300: 000313 p.000007:
002407 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002408 p.000300: research
002409 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
002427 p.000300: 000928 p.000022: research will still need to
002428 p.000300: 000929 p.000023: 23
002429 p.000300: 000930 p.000023:
002430 p.000300: 000931 p.000023: adhere to professional codes of practice, legal requirements and compliance with the Data Protection Act, 1998.
002431 p.000300: 000932 p.000023:
002432 p.000300: 000933 p.000023: Work with potentially vulnerable groups
002433 p.000300: 000934 p.000023: In most cases, researchers working with vulnerable people will need to secure Disclosure and Barring Service (DBS)
002434 p.000300: 000935 p.000023: clearance (https://www.gov.uk/government/organisations/disclosure-and-barring-service). The DBS offers
002435 p.000300: organisations a
002436 p.000300: 000936 p.000023: means to check the criminal record of researchers to ensure that they do not have a history that would make them
002437 p.000300: 000937 p.000023: unsuitable for work involving children and vulnerable adults. The responsibility for ensuring that applicants are
002438 p.000300: 000938 p.000023: suitable to work with such groups ultimately rests with individual employers. In some cases other individuals (such as
002439 p.000300: 000939 p.000023: a head teacher or social services manager) may be better placed to provide information on necessary disclosures (see
002440 p.000300: 000940 p.000023: the Safeguarding Vulnerable Groups Act 2006 (http://www.legislation.gov.uk/ukpga/2006/47/contents); Rehabilitation
002441 p.000300: of
002442 p.000300: 000941 p.000023: Offenders Act 1974 (http://www.legislation.gov.uk/ukpga/1974/53); the Rehabilitation of Offenders Act 1974
002443 p.000300: (Exceptions
002444 p.000300: 000942 p.000023: Order 1975 (http://www.legislation.gov.uk/uksi/2013/1198/contents/made)).
002445 p.000300: 000943 p.000023:
002446 p.000300: 000944 p.000023: Proxy consent
002447 p.000300: 000945 p.000023: Proxy consent can be obtained by a person authorised to act on behalf of avulnerable person. Where proxy consent
002448 p.000300: for
002449 p.000300: 000946 p.000023: research participants is necessary, the best interests of the vulnerable person should be of the highest importance.
002450 p.000300: 000947 p.000023: Proxy consent should only be used when participants are unable toconsent themselves or where it is legally
002451 p.000300: necessary.
002452 p.000300: 000948 p.000023: Care should be taken when consent cannot be sought from the participants, and it should not be assumed that
002453 p.000300: agreement
002454 p.000300: 000949 p.000023: cannot be sought from children because of their age.
002455 p.000300: 000950 p.000023: When proxy consent is used agreed criteria should be provided to confirm participants fully understands to what they
002456 p.000300: 000951 p.000023: are participating, and criteria identifying signs of participants’ unwillingness to take part or wishing to terminate
002457 p.000300: 000952 p.000023: the research interaction.
002458 p.000300: 000953 p.000023:
...

...
002470 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
002471 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
002472 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
002473 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
002474 p.000300: 001188 p.000028:
002475 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
002476 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
002477 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
002478 p.000300: 001192 p.000029: 29
002479 p.000300: 001193 p.000029:
002480 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
002481 p.000300: 001195 p.000029: this should wherever possible include a recorded written witness sign-off. In other circumstances, for example
002482 p.000300: ...
002483 p.000300:
002484 p.000300: ...
002485 p.000300: 001280 p.000031: aims and objectives of the research and given the opportunity to withdraw their data from the study (eg experimental
002486 p.000300: 001281 p.000031: studies involving deception). Researchers should also ensure they have received the relevant permission from
002487 p.000300: 001282 p.000031: gatekeepers where necessary to undertake the research, for example from the relevant public sector organisation to
002488 p.000300: 001283 p.000031: undertake research on public sector property.
002489 p.000300: 001284 p.000031:
002490 p.000300: 001285 p.000031: How do you obtain consent from potentially vulnerable people?
002491 p.000300: 001286 p.000031: In cases where research involves potentially vulnerable groups, for example children, older persons or adults with
002492 p.000300: 001287 p.000031: learning disabilities (for those who fall under the remit of the Mental Capacity Act 2005/ Adults with Incapacity
002493 p.000300: 001288 p.000031: (Scotland) Act 2000 see below), every effort should be made to secure actively given informed consent from individual
002494 p.000300: 001289 p.000031: participants. Passive assent, including group assent (with consent given by a gatekeeper) should be avoided wherever
002495 p.000300: 001290 p.000031: possible, and every effort should be made to develop methods of seeking consent that are appropriate to the groups
...

...
002500 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002501 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002502 p.000300: Scotland ‘A’
002503 p.000300: 001496 p.000035: REC).
002504 p.000300: 001497 p.000035: Research that may need a full review
002505 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
002506 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
002507 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
002508 p.000300: 001501 p.000036: 36
002509 p.000300: 001502 p.000036:
...

...
002594 p.000300: 001990 p.000047:
002595 p.000300: 001991 p.000047: Other links
002596 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
002597 p.000300: Science
002598 p.000300: 001993 p.000047: Research http://acss.wpengine.com/wp- content/uploads/2013/11/pb3_genericethicsprinciples.pdf
002599 p.000300: 001994 p.000047: • Dockett, S., Perry, B. (2011). Researching with young children: seeking assent. Child Indicators Research,
002600 p.000300: 001995 p.000047: 4(2):231-247, DOI: 10.1007/s12187-010-9084-0 www.victoria.ac.nz/education/pdf/ethics/Docket-Perry-2011.pdf
002601 p.000300: 001996 p.000048: 48
002602 p.000300: 001997 p.000048:
002603 p.000300: 001998 p.000048: • Ipsos-MORI Social Research Institute (2014). Dialogue on data
...

...
002628 p.000300: ...
002629 p.000300: 000343 p.000008: of these datasets. In many cases a light-touch review confirming that researchers have met these requirements will be
002630 p.000300: 000344 p.000008: sufficient. Issues however may arise when data are linked and where it may be possible to identify participants.
002631 p.000300: 000345 p.000008:
002632 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
002633 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
002634 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
002635 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
002636 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
002637 p.000300: gatekeeper
...

...
002643 p.000300: 001575 p.000037: o anyone else be put at risk as a consequence of this research
002644 p.000300: 001576 p.000037: • What might these risks be?
002645 p.000300: 001577 p.000037: • How can these risks be addressed?
002646 p.000300: 001578 p.000037: • How will you protect your data at the research site and away from the research site?
002647 p.000300: 001579 p.000037: • Details and recruitment of participants:
002648 p.000300: 001580 p.000037: o What types of people will be recruited? Eg students, children, people with learning disabilities, elderly
002649 p.000300: 001581 p.000037: o How will the competence of participants to give informed consent be determined?
002650 p.000300: 001582 p.000038: 38
002651 p.000300: 001583 p.000038:
002652 p.000300: 001584 p.000038: o How, where, and by whom participants will be identified, approached, and recruited?
...

...
002736 p.000300:
002737 p.000300: (return to top)
002738 p.000300: ...
002739 p.000300: 000309 p.000007: Research involving:
002740 p.000300: 000310 p.000007:
002741 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002742 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002743 p.000300: 000313 p.000007:
002744 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002745 p.000300: research
002746 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
002830 p.000300:
002831 p.000300: ...
002832 p.000300: 001282 p.000031: gatekeepers where necessary to undertake the research, for example from the relevant public sector organisation to
002833 p.000300: 001283 p.000031: undertake research on public sector property.
002834 p.000300: 001284 p.000031:
002835 p.000300: 001285 p.000031: How do you obtain consent from potentially vulnerable people?
002836 p.000300: 001286 p.000031: In cases where research involves potentially vulnerable groups, for example children, older persons or adults with
002837 p.000300: 001287 p.000031: learning disabilities (for those who fall under the remit of the Mental Capacity Act 2005/ Adults with Incapacity
002838 p.000300: 001288 p.000031: (Scotland) Act 2000 see below), every effort should be made to secure actively given informed consent from individual
002839 p.000300: 001289 p.000031: participants. Passive assent, including group assent (with consent given by a gatekeeper) should be avoided wherever
002840 p.000300: 001290 p.000031: possible, and every effort should be made to develop methods of seeking consent that are appropriate to the groups
002841 p.000300: 001291 p.000031: being studied, using expert advice, support and training where necessary.
002842 p.000300: ...
002843 p.000300:
002844 p.000300: ...
002845 p.000300: 001295 p.000031: legal equivalent). Researchers should consider whether mature children can confirm consent without adult approval,
002846 p.000300: for
002847 p.000300: 001296 p.000031: example there may be circumstances where seeking consent from parents could jeopardise the research (for
002848 p.000300: example, in
002849 p.000300: 001297 p.000031: research into teenage sexuality or alcohol use). In such circumstances, researchers will need to regard the potential
...

...
002892 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002893 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002894 p.000300: Scotland ‘A’
002895 p.000300: 001496 p.000035: REC).
002896 p.000300: 001497 p.000035: Research that may need a full review
002897 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
002898 p.000300: ...
002899 p.000300:
002900 p.000300: ...
002901 p.000300: 001515 p.000036: Will the study involve prolonged or repetitive testing?
...

...
003047 p.000300: Social / Literacy
003048 p.000300: Searching for indicator literate:
003049 p.000300:
003050 p.000300: (return to top)
003051 p.000300: ...
003052 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
003053 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
003054 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
003055 p.000300: 001192 p.000029: 29
003056 p.000300: 001193 p.000029:
003057 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
003058 p.000300: 001195 p.000029: this should wherever possible include a recorded written witness sign-off. In other circumstances, for example
003059 p.000300: 001196 p.000029: telephone interviews, this may not be possible. Where consent is not to be secured, a full statement justifying this
003060 p.000300: 001197 p.000029: should be submitted to the REC for review. In longitudinal research and data archiving it may be necessary to explain
003061 p.000300: 001198 p.000029: the need for (and limitations of) enduring consent (see Appendix C for a definition); it may also be necessary to
...

...
003390 p.000300: 000464 p.000011: media, researchers will also need to abide by the regulations set by the data producers subject to such regulations
003391 p.000300: 000465 p.000011: being consistent with legal and ethical guidelines (see also internet-mediated research in FAQs). The potential for
003392 p.000300: 000466 p.000011: identifiabilty of online sources, as well as ethical debates about how privacy is constituted in digital contexts,
003393 p.000300: 000467 p.000011: means that full ethics review may be appropriate for research involving these communities. For example, people often
003394 p.000300: 000468 p.000011: assume that social media sources are public domain, but it is quite likely that some service users – including
003395 p.000300: children
003396 p.000300: 000469 p.000011: – may not understand the implications of what they are doing, and those harvesting data may also uncover illegal
003397 p.000300: images
003398 p.000300: 000470 p.000011: or activities.
003399 p.000300: 000471 p.000011:
...

...
003505 p.000300: 000918 p.000022: (http://www.legislation.gov.uk/ukpga/1998/29/contents). Helpful guidance can be found at the ICO guide to data
003506 p.000300: 000919 p.000022: protection (https://ico.org.uk/for-organisations/guide-to-data- protection/).
003507 p.000300: ...
003508 p.000300:
003509 p.000300: ...
003510 p.000300: 000934 p.000023: In most cases, researchers working with vulnerable people will need to secure Disclosure and Barring Service (DBS)
003511 p.000300: 000935 p.000023: clearance (https://www.gov.uk/government/organisations/disclosure-and-barring-service). The DBS offers
003512 p.000300: organisations a
003513 p.000300: 000936 p.000023: means to check the criminal record of researchers to ensure that they do not have a history that would make them
003514 p.000300: 000937 p.000023: unsuitable for work involving children and vulnerable adults. The responsibility for ensuring that applicants are
003515 p.000300: 000938 p.000023: suitable to work with such groups ultimately rests with individual employers. In some cases other individuals (such as
003516 p.000300: 000939 p.000023: a head teacher or social services manager) may be better placed to provide information on necessary disclosures (see
003517 p.000300: 000940 p.000023: the Safeguarding Vulnerable Groups Act 2006 (http://www.legislation.gov.uk/ukpga/2006/47/contents); Rehabilitation
003518 p.000300: of
003519 p.000300: 000941 p.000023: Offenders Act 1974 (http://www.legislation.gov.uk/ukpga/1974/53); the Rehabilitation of Offenders Act 1974
003520 p.000300: (Exceptions
003521 p.000300: 000942 p.000023: Order 1975 (http://www.legislation.gov.uk/uksi/2013/1198/contents/made)).
...

...
003809 p.000300: 001990 p.000047:
003810 p.000300: 001991 p.000047: Other links
003811 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
003812 p.000300: Science
003813 p.000300: 001993 p.000047: Research http://acss.wpengine.com/wp- content/uploads/2013/11/pb3_genericethicsprinciples.pdf
003814 p.000300: 001994 p.000047: • Dockett, S., Perry, B. (2011). Researching with young children: seeking assent. Child Indicators Research,
003815 p.000300: 001995 p.000047: 4(2):231-247, DOI: 10.1007/s12187-010-9084-0 www.victoria.ac.nz/education/pdf/ethics/Docket-Perry-2011.pdf
003816 p.000300: 001996 p.000048: 48
003817 p.000300: 001997 p.000048:
003818 p.000300: 001998 p.000048: • Ipsos-MORI Social Research Institute (2014). Dialogue on data
...

...
004034 p.000300: age Diminished Autonomy
004035 p.000300: authority Relationship to Authority
004036 p.000300: autonomy Impaired Autonomy
004037 p.000300: cadavers Cadavers
004038 p.000300: capacity Fetus/Neonate
004039 p.000300: child Child
004040 p.000300: children Child
004041 p.000300: coercion Presence of Coercion
004042 p.000300: cognitive Cognitive Impairment
004043 p.000300: cognitive impairment Cognitive Impairment
004044 p.000300: cultural Cultural Differences
...

...
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
004070 p.000300: minor Youth/Minors
004071 p.000300: nursing home In Nursing Home
004072 p.000300: officer Police Officer
...

...
004095 p.000300: women Women
004096 p.000300:
004097 p.000300:
004098 p.000300: Indicator Peers (Indicators in Same Vulnerabilty)
004099 p.000300: Indicator Peers
004100 p.000300: child ['children', 'vulnerable']
004101 p.000300: children ['child', 'vulnerable']
004102 p.000300: cognitive ['cognitive impairment', 'impairment', 'impaired']
004103 p.000300: cognitive impairment ['cognitive', 'impairment', 'impaired']
004104 p.000300: cultural ['culture']
004105 p.000300: culture ['cultural']
...

...
004117 p.000300: political ['party']
004118 p.000300: poor ['economic']
004119 p.000300: religious ['special']
004120 p.000300: single ['engaged']
004121 p.000300: special ['religious']
004122 p.000300: vulnerable ['child', 'children']
004123 p.000300:
004124 p.000300:
004125 p.000300: Trigger Words
004126 p.000300: consent
...

...
004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
004179 p.000300: Political Political political
004180 p.000300: Political Trade Union Membership union
004181 p.000300: Social Access to Social Goods access
004182 p.000300: Social Breastfeeding Children justice
004183 p.000300: Social Child child
004184 p.000300: Social Child children
004185 p.000300: Social Child vulnerable
004186 p.000300: Social Educational education
004187 p.000300: Social Educational educational
004188 p.000300: Social Elderly elderly
004189 p.000300: Social Ethnicity ethnic
...

Searching for indicator disabled:

(return to top)
...
001406 p.000300: 001980 p.000047: • Adults with Incapacity Act 2000: Code of practice (2010) For practitioners authorised to carry out medical
001407 p.000300: 001981 p.000047: treatment or research under Part 5 of the Act www.scotland.gov.uk/Publications/2010/10/20153801/0
001408 p.000300: 001982 p.000047: • Adults with Incapacity (Ethics Committee) Scotland Regulations 2002
001409 p.000300: ...
001410 p.000300:
001411 p.000300: Health / Mentally Disabled
001412 p.000300: Searching for indicator disability:
001413 p.000300:
001414 p.000300: (return to top)
001415 p.000300: ...
...

...
004044 p.000300: cultural Cultural Differences
004045 p.000300: culture Cultural Differences
004046 p.000300: deceased Linguistic Proficiency
004047 p.000300: dependence Drug Dependence
004048 p.000300: dependent Dependent
004049 p.000300: disability Mentally Disabled
004050 p.000300: drug Drug Usage
004051 p.000300: economic Economic/Poverty
004052 p.000300: education Educational
004053 p.000300: educational Educational
...

...
004169 p.000300: Health Drug Dependence dependence
004170 p.000300: Health Drug Usage drug
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
004174 p.000300: Health Mentally Disabled disability
004175 p.000300: Health Motherhood/Family family
004176 p.000300: Health Physically Ill illness
004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
...

Searching for indicator vulnerable:

(return to top)
...
000279 p.000300: ...
000280 p.000300: 000307 p.000007:
000281 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000282 p.000300: 000309 p.000007: Research involving:
000283 p.000300: 000310 p.000007:
000284 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000285 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000286 p.000300: 000313 p.000007:
000287 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000288 p.000300: research
000289 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
000309 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
000310 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
000311 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
000312 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
000313 p.000300: 001188 p.000028:
000314 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
000315 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
000316 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
000317 p.000300: 001192 p.000029: 29
000318 p.000300: 001193 p.000029:
000319 p.000300: ...
000320 p.000300:
...

...
000340 p.000300: (return to top)
000341 p.000300: ...
000342 p.000300: 000944 p.000023: Proxy consent
000343 p.000300: 000945 p.000023: Proxy consent can be obtained by a person authorised to act on behalf of avulnerable person. Where proxy consent
000344 p.000300: for
000345 p.000300: 000946 p.000023: research participants is necessary, the best interests of the vulnerable person should be of the highest importance.
000346 p.000300: 000947 p.000023: Proxy consent should only be used when participants are unable toconsent themselves or where it is legally
000347 p.000300: necessary.
000348 p.000300: 000948 p.000023: Care should be taken when consent cannot be sought from the participants, and it should not be assumed that
000349 p.000300: agreement
...

...
000484 p.000300:
000485 p.000300: ...
000486 p.000300: 001282 p.000031: gatekeepers where necessary to undertake the research, for example from the relevant public sector organisation to
000487 p.000300: 001283 p.000031: undertake research on public sector property.
000488 p.000300: 001284 p.000031:
000489 p.000300: 001285 p.000031: How do you obtain consent from potentially vulnerable people?
000490 p.000300: 001286 p.000031: In cases where research involves potentially vulnerable groups, for example children, older persons or adults with
000491 p.000300: 001287 p.000031: learning disabilities (for those who fall under the remit of the Mental Capacity Act 2005/ Adults with Incapacity
000492 p.000300: 001288 p.000031: (Scotland) Act 2000 see below), every effort should be made to secure actively given informed consent from individual
000493 p.000300: 001289 p.000031: participants. Passive assent, including group assent (with consent given by a gatekeeper) should be avoided wherever
000494 p.000300: 001290 p.000031: possible, and every effort should be made to develop methods of seeking consent that are appropriate to the groups
...

...
000543 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000544 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000545 p.000300: Scotland ‘A’
000546 p.000300: 001496 p.000035: REC).
000547 p.000300: 001497 p.000035: Research that may need a full review
000548 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
000549 p.000300: ...
000550 p.000300:
000551 p.000300: ...
000552 p.000300: 001653 p.000039: review by department REC
000553 p.000300: 001654 p.000039:
000554 p.000300: 001655 p.000039:
000555 p.000300: 001656 p.000039:
000556 p.000300: 001657 p.000039: Does the research involve NHS patients, records, equipment, premises or vulnerable people under the Mental
000557 p.000300: Capacity Act
000558 p.000300: 001658 p.000039: 2005 and Adults with Incapacity (Scotland) Act 2000?
000559 p.000300: 001659 p.000039:
000560 p.000300: 001660 p.000039:
...

...
000914 p.000300: ...
000915 p.000300: 000307 p.000007:
000916 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000917 p.000300: 000309 p.000007: Research involving:
000918 p.000300: 000310 p.000007:
000919 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000920 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000921 p.000300: 000313 p.000007:
000922 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000923 p.000300: research
000924 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
000930 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000931 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000932 p.000300: Scotland ‘A’
000933 p.000300: 001496 p.000035: REC).
000934 p.000300: 001497 p.000035: Research that may need a full review
000935 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
000936 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
000937 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
000938 p.000300: 001501 p.000036: 36
000939 p.000300: 001502 p.000036:
...

...
000945 p.000300: ...
000946 p.000300: 000307 p.000007:
000947 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000948 p.000300: 000309 p.000007: Research involving:
000949 p.000300: 000310 p.000007:
000950 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000951 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000952 p.000300: 000313 p.000007:
000953 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000954 p.000300: research
000955 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
000961 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000962 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000963 p.000300: Scotland ‘A’
000964 p.000300: 001496 p.000035: REC).
000965 p.000300: 001497 p.000035: Research that may need a full review
000966 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
000967 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
000968 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
000969 p.000300: 001501 p.000036: 36
000970 p.000300: 001502 p.000036:
...

...
000995 p.000300: ...
000996 p.000300: 000307 p.000007:
000997 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
000998 p.000300: 000309 p.000007: Research involving:
000999 p.000300: 000310 p.000007:
001000 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
001001 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
001002 p.000300: 000313 p.000007:
001003 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001004 p.000300: research
001005 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
001030 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
001031 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
001032 p.000300: Scotland ‘A’
001033 p.000300: 001496 p.000035: REC).
001034 p.000300: 001497 p.000035: Research that may need a full review
001035 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
001036 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
001037 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
001038 p.000300: 001501 p.000036: 36
001039 p.000300: 001502 p.000036:
...

...
001416 p.000300: 000306 p.000007: are not necessarily exempt from full review.
001417 p.000300: 000307 p.000007:
001418 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
001419 p.000300: 000309 p.000007: Research involving:
001420 p.000300: 000310 p.000007:
001421 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
001422 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
001423 p.000300: 000313 p.000007:
001424 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001425 p.000300: research
001426 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
001545 p.000300: ...
001546 p.000300: 000952 p.000023: the research interaction.
001547 p.000300: 000953 p.000023:
001548 p.000300: 000954 p.000023: Limits to confidentiality
001549 p.000300: 000955 p.000023: Researchers should, when eliciting consent, make clear the limits to confidentiality, particularly when working with
001550 p.000300: 000956 p.000023: potentially vulnerable individuals or groups - for example when undertaking research withchildren, families and
001551 p.000300: 000957 p.000023: vulnerable populations, or individuals involved in illegal activities. If for example an interview reveals that a
001552 p.000300: 000958 p.000023: participant or another person identified in the interview is in significant danger, the researcher will be obliged to
001553 p.000300: 000959 p.000023: take action in response to that disclosure. Researchers should have established procedures, necessary systems and
001554 p.000300: 000960 p.000023: appropriate contacts in place to activate help and support in the event of a disclosure. If the researcher feels it is
001555 p.000300: 000961 p.000023: necessary to break confidentiality, the participant should normally be informed what action is being taken by the
...

...
001974 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
001975 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
001976 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
001977 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
001978 p.000300: 001188 p.000028:
001979 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
001980 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
001981 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
001982 p.000300: 001192 p.000029: 29
001983 p.000300: 001193 p.000029:
001984 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
001985 p.000300: ...
001986 p.000300:
001987 p.000300: ...
001988 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
001989 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
001990 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
001991 p.000300: 001501 p.000036: 36
001992 p.000300: 001502 p.000036:
...

...
002108 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
002109 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
002110 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
002111 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
002112 p.000300: 001188 p.000028:
002113 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
002114 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
002115 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
002116 p.000300: 001192 p.000029: 29
002117 p.000300: 001193 p.000029:
002118 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
002119 p.000300: 001195 p.000029: this should wherever possible include a recorded written witness sign-off. In other circumstances, for example
...

...
002126 p.000300: 001984 p.000047: • Rehabilitation of Offenders Act 1974 www.legislation.gov.uk/ukpga/1974/53
002127 p.000300: 001985 p.000047: • Rehabilitation of Offenders Act 1974 (Exceptions Order 1975)
002128 p.000300: www.legislation.gov.uk/uksi/2013/1198/contents/made
002129 p.000300: 001986 p.000047: • The Rehabilitation of Offenders Act 1974 (Exceptions) Order 1975 (Amendment) (England and Wales) Order 2013.
002130 p.000300: 001987 p.000047: www.legislation.gov.uk/uksi/2013/1198/contents/made
002131 p.000300: 001988 p.000047: • Safeguarding Vulnerable Groups Act 2006 www.legislation.gov.uk/ukpga/2006/47/contents
002132 p.000300: 001989 p.000047: • Protecting of Vulnerable Groups (Scotland) Act 2007 www.legislation.gov.uk/asp/2007/14/contents
002133 p.000300: 001990 p.000047:
002134 p.000300: 001991 p.000047: Other links
002135 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
002136 p.000300: Science
...

...
002149 p.000300: 000282 p.000006: Many student projects may require only a light-touch review. However, this cannot be assumed; projects, including
002150 p.000300: 000283 p.000006: student projects, which involve more than minimal risk, should receive a full REC review. Some RECs have facilitated
002151 p.000300: 000284 p.000006: ethics approval for research
002152 p.000300: 000285 p.000007: 7
002153 p.000300: 000286 p.000007:
002154 p.000300: 000287 p.000007: with potentially vulnerable people by establishing ethics protocols for commonly occurring situations, such as research
002155 p.000300: 000288 p.000007: undertaken with typically-developing children in mainstream school settings. If the researcher can confirm that they
002156 p.000300: 000289 p.000007: are abiding by the established protocol and that this is appropriate for their research, a light-touch review may be
002157 p.000300: 000290 p.000007: justified. The use of individual RO-approved research ethics protocols for commonly occurring situations may limit the
002158 p.000300: 000291 p.000007: number of research proposals that need to go to a full ethics review.
002159 p.000300: 000292 p.000007:
...

...
002163 p.000300: 000306 p.000007: are not necessarily exempt from full review.
002164 p.000300: 000307 p.000007:
002165 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
002166 p.000300: 000309 p.000007: Research involving:
002167 p.000300: 000310 p.000007:
002168 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002169 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002170 p.000300: 000313 p.000007:
002171 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002172 p.000300: research
002173 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
002207 p.000300: 000928 p.000022: research will still need to
002208 p.000300: 000929 p.000023: 23
002209 p.000300: 000930 p.000023:
002210 p.000300: 000931 p.000023: adhere to professional codes of practice, legal requirements and compliance with the Data Protection Act, 1998.
002211 p.000300: 000932 p.000023:
002212 p.000300: 000933 p.000023: Work with potentially vulnerable groups
002213 p.000300: 000934 p.000023: In most cases, researchers working with vulnerable people will need to secure Disclosure and Barring Service (DBS)
002214 p.000300: 000935 p.000023: clearance (https://www.gov.uk/government/organisations/disclosure-and-barring-service). The DBS offers
002215 p.000300: organisations a
002216 p.000300: 000936 p.000023: means to check the criminal record of researchers to ensure that they do not have a history that would make them
002217 p.000300: 000937 p.000023: unsuitable for work involving children and vulnerable adults. The responsibility for ensuring that applicants are
002218 p.000300: 000938 p.000023: suitable to work with such groups ultimately rests with individual employers. In some cases other individuals (such as
002219 p.000300: 000939 p.000023: a head teacher or social services manager) may be better placed to provide information on necessary disclosures (see
002220 p.000300: 000940 p.000023: the Safeguarding Vulnerable Groups Act 2006 (http://www.legislation.gov.uk/ukpga/2006/47/contents); Rehabilitation
002221 p.000300: of
002222 p.000300: 000941 p.000023: Offenders Act 1974 (http://www.legislation.gov.uk/ukpga/1974/53); the Rehabilitation of Offenders Act 1974
002223 p.000300: (Exceptions
002224 p.000300: 000942 p.000023: Order 1975 (http://www.legislation.gov.uk/uksi/2013/1198/contents/made)).
002225 p.000300: 000943 p.000023:
002226 p.000300: 000944 p.000023: Proxy consent
002227 p.000300: 000945 p.000023: Proxy consent can be obtained by a person authorised to act on behalf of avulnerable person. Where proxy consent
002228 p.000300: for
002229 p.000300: 000946 p.000023: research participants is necessary, the best interests of the vulnerable person should be of the highest importance.
002230 p.000300: 000947 p.000023: Proxy consent should only be used when participants are unable toconsent themselves or where it is legally
002231 p.000300: necessary.
002232 p.000300: 000948 p.000023: Care should be taken when consent cannot be sought from the participants, and it should not be assumed that
002233 p.000300: agreement
...

...
002236 p.000300: 000951 p.000023: are participating, and criteria identifying signs of participants’ unwillingness to take part or wishing to terminate
002237 p.000300: 000952 p.000023: the research interaction.
002238 p.000300: 000953 p.000023:
002239 p.000300: 000954 p.000023: Limits to confidentiality
002240 p.000300: 000955 p.000023: Researchers should, when eliciting consent, make clear the limits to confidentiality, particularly when working with
002241 p.000300: 000956 p.000023: potentially vulnerable individuals or groups - for example when undertaking research withchildren, families and
002242 p.000300: 000957 p.000023: vulnerable populations, or individuals involved in illegal activities. If for example an interview reveals that a
002243 p.000300: 000958 p.000023: participant or another person identified in the interview is in significant danger, the researcher will be obliged to
002244 p.000300: 000959 p.000023: take action in response to that disclosure. Researchers should have established procedures, necessary systems and
002245 p.000300: 000960 p.000023: appropriate contacts in place to activate help and support in the event of a disclosure. If the researcher feels it is
002246 p.000300: 000961 p.000023: necessary to break confidentiality, the participant should normally be informed what action is being taken by the
...

...
002250 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
002251 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
002252 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
002253 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
002254 p.000300: 001188 p.000028:
002255 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
002256 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
002257 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
002258 p.000300: 001192 p.000029: 29
002259 p.000300: 001193 p.000029:
002260 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
002261 p.000300: 001195 p.000029: this should wherever possible include a recorded written witness sign-off. In other circumstances, for example
...

...
002283 p.000300: 001280 p.000031: aims and objectives of the research and given the opportunity to withdraw their data from the study (eg experimental
002284 p.000300: 001281 p.000031: studies involving deception). Researchers should also ensure they have received the relevant permission from
002285 p.000300: 001282 p.000031: gatekeepers where necessary to undertake the research, for example from the relevant public sector organisation to
002286 p.000300: 001283 p.000031: undertake research on public sector property.
002287 p.000300: 001284 p.000031:
002288 p.000300: 001285 p.000031: How do you obtain consent from potentially vulnerable people?
002289 p.000300: 001286 p.000031: In cases where research involves potentially vulnerable groups, for example children, older persons or adults with
002290 p.000300: 001287 p.000031: learning disabilities (for those who fall under the remit of the Mental Capacity Act 2005/ Adults with Incapacity
002291 p.000300: 001288 p.000031: (Scotland) Act 2000 see below), every effort should be made to secure actively given informed consent from individual
002292 p.000300: 001289 p.000031: participants. Passive assent, including group assent (with consent given by a gatekeeper) should be avoided wherever
002293 p.000300: 001290 p.000031: possible, and every effort should be made to develop methods of seeking consent that are appropriate to the groups
...

...
002310 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002311 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002312 p.000300: Scotland ‘A’
002313 p.000300: 001496 p.000035: REC).
002314 p.000300: 001497 p.000035: Research that may need a full review
002315 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
002316 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
002317 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
002318 p.000300: 001501 p.000036: 36
002319 p.000300: 001502 p.000036:
...

...
002363 p.000300: 001984 p.000047: • Rehabilitation of Offenders Act 1974 www.legislation.gov.uk/ukpga/1974/53
002364 p.000300: 001985 p.000047: • Rehabilitation of Offenders Act 1974 (Exceptions Order 1975)
002365 p.000300: www.legislation.gov.uk/uksi/2013/1198/contents/made
002366 p.000300: 001986 p.000047: • The Rehabilitation of Offenders Act 1974 (Exceptions) Order 1975 (Amendment) (England and Wales) Order 2013.
002367 p.000300: 001987 p.000047: www.legislation.gov.uk/uksi/2013/1198/contents/made
002368 p.000300: 001988 p.000047: • Safeguarding Vulnerable Groups Act 2006 www.legislation.gov.uk/ukpga/2006/47/contents
002369 p.000300: 001989 p.000047: • Protecting of Vulnerable Groups (Scotland) Act 2007 www.legislation.gov.uk/asp/2007/14/contents
002370 p.000300: 001990 p.000047:
002371 p.000300: 001991 p.000047: Other links
002372 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
002373 p.000300: Science
...

...
002376 p.000300: 001995 p.000047: 4(2):231-247, DOI: 10.1007/s12187-010-9084-0 www.victoria.ac.nz/education/pdf/ethics/Docket-Perry-2011.pdf
002377 p.000300: 001996 p.000048: 48
002378 p.000300: 001997 p.000048:
002379 p.000300: 001998 p.000048: • Ipsos-MORI Social Research Institute (2014). Dialogue on data
002380 p.000300: ...
002381 p.000300: Searching for indicator vulnerable:
002382 p.000300:
002383 p.000300: (return to top)
002384 p.000300: ...
002385 p.000300: 000282 p.000006: Many student projects may require only a light-touch review. However, this cannot be assumed; projects, including
002386 p.000300: 000283 p.000006: student projects, which involve more than minimal risk, should receive a full REC review. Some RECs have facilitated
002387 p.000300: 000284 p.000006: ethics approval for research
002388 p.000300: 000285 p.000007: 7
002389 p.000300: 000286 p.000007:
002390 p.000300: 000287 p.000007: with potentially vulnerable people by establishing ethics protocols for commonly occurring situations, such as research
002391 p.000300: 000288 p.000007: undertaken with typically-developing children in mainstream school settings. If the researcher can confirm that they
002392 p.000300: 000289 p.000007: are abiding by the established protocol and that this is appropriate for their research, a light-touch review may be
002393 p.000300: 000290 p.000007: justified. The use of individual RO-approved research ethics protocols for commonly occurring situations may limit the
002394 p.000300: 000291 p.000007: number of research proposals that need to go to a full ethics review.
002395 p.000300: 000292 p.000007:
...

...
002399 p.000300: 000306 p.000007: are not necessarily exempt from full review.
002400 p.000300: 000307 p.000007:
002401 p.000300: 000308 p.000007: Research potentially requiring a full ethics review
002402 p.000300: 000309 p.000007: Research involving:
002403 p.000300: 000310 p.000007:
002404 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002405 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002406 p.000300: 000313 p.000007:
002407 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002408 p.000300: research
002409 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
002414 p.000300: 000608 p.000015:
002415 p.000300: 000609 p.000015: • Aims of the research and scientific background of the research.
002416 p.000300: 000610 p.000015: • Study design.
002417 p.000300: 000611 p.000015: • Participants – who (inclusion and exclusion criteria), how many, how potential participants are identified and
002418 p.000300: 000612 p.000015: recruited.
002419 p.000300: 000613 p.000015: • Potentially vulnerable individuals or groups.
002420 p.000300: 000614 p.000015: • Methods of data collection and analysis.
002421 p.000300: 000615 p.000015: • Response to any conditions of use set by data custodians and data producers.
002422 p.000300: 000616 p.000015: • Principal investigator’s summary of potential ethics issues and how they will be addressed. For projects that
002423 p.000300: 000617 p.000015: include non-academic or international collaborators, this summary should be agreed by all parties.
...

...
002427 p.000300: 000928 p.000022: research will still need to
002428 p.000300: 000929 p.000023: 23
002429 p.000300: 000930 p.000023:
002430 p.000300: 000931 p.000023: adhere to professional codes of practice, legal requirements and compliance with the Data Protection Act, 1998.
002431 p.000300: 000932 p.000023:
002432 p.000300: 000933 p.000023: Work with potentially vulnerable groups
002433 p.000300: 000934 p.000023: In most cases, researchers working with vulnerable people will need to secure Disclosure and Barring Service (DBS)
002434 p.000300: 000935 p.000023: clearance (https://www.gov.uk/government/organisations/disclosure-and-barring-service). The DBS offers
002435 p.000300: organisations a
002436 p.000300: 000936 p.000023: means to check the criminal record of researchers to ensure that they do not have a history that would make them
002437 p.000300: 000937 p.000023: unsuitable for work involving children and vulnerable adults. The responsibility for ensuring that applicants are
002438 p.000300: 000938 p.000023: suitable to work with such groups ultimately rests with individual employers. In some cases other individuals (such as
002439 p.000300: 000939 p.000023: a head teacher or social services manager) may be better placed to provide information on necessary disclosures (see
002440 p.000300: 000940 p.000023: the Safeguarding Vulnerable Groups Act 2006 (http://www.legislation.gov.uk/ukpga/2006/47/contents); Rehabilitation
002441 p.000300: of
002442 p.000300: 000941 p.000023: Offenders Act 1974 (http://www.legislation.gov.uk/ukpga/1974/53); the Rehabilitation of Offenders Act 1974
002443 p.000300: (Exceptions
002444 p.000300: 000942 p.000023: Order 1975 (http://www.legislation.gov.uk/uksi/2013/1198/contents/made)).
002445 p.000300: 000943 p.000023:
002446 p.000300: 000944 p.000023: Proxy consent
002447 p.000300: 000945 p.000023: Proxy consent can be obtained by a person authorised to act on behalf of avulnerable person. Where proxy consent
002448 p.000300: for
002449 p.000300: 000946 p.000023: research participants is necessary, the best interests of the vulnerable person should be of the highest importance.
002450 p.000300: 000947 p.000023: Proxy consent should only be used when participants are unable toconsent themselves or where it is legally
002451 p.000300: necessary.
002452 p.000300: 000948 p.000023: Care should be taken when consent cannot be sought from the participants, and it should not be assumed that
002453 p.000300: agreement
...

...
002456 p.000300: 000951 p.000023: are participating, and criteria identifying signs of participants’ unwillingness to take part or wishing to terminate
002457 p.000300: 000952 p.000023: the research interaction.
002458 p.000300: 000953 p.000023:
002459 p.000300: 000954 p.000023: Limits to confidentiality
002460 p.000300: 000955 p.000023: Researchers should, when eliciting consent, make clear the limits to confidentiality, particularly when working with
002461 p.000300: 000956 p.000023: potentially vulnerable individuals or groups - for example when undertaking research withchildren, families and
002462 p.000300: 000957 p.000023: vulnerable populations, or individuals involved in illegal activities. If for example an interview reveals that a
002463 p.000300: 000958 p.000023: participant or another person identified in the interview is in significant danger, the researcher will be obliged to
002464 p.000300: 000959 p.000023: take action in response to that disclosure. Researchers should have established procedures, necessary systems and
002465 p.000300: 000960 p.000023: appropriate contacts in place to activate help and support in the event of a disclosure. If the researcher feels it is
002466 p.000300: 000961 p.000023: necessary to break confidentiality, the participant should normally be informed what action is being taken by the
...

...
002470 p.000300: 001184 p.000028: involvement. Information should be provided in a form that is comprehensible and accessible to participants, typically
002471 p.000300: 001185 p.000028: in written form (or in a form that participants can access after the end of the research interaction), and time should
002472 p.000300: 001186 p.000028: be allowed for the participants to consider their choices and to discuss their decision with others if appropriate. The
002473 p.000300: 001187 p.000028: consent forms should be signed off by the research participants to indicateconsent.
002474 p.000300: 001188 p.000028:
002475 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
002476 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
002477 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
002478 p.000300: 001192 p.000029: 29
002479 p.000300: 001193 p.000029:
002480 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
002481 p.000300: 001195 p.000029: this should wherever possible include a recorded written witness sign-off. In other circumstances, for example
...

...
002485 p.000300: 001280 p.000031: aims and objectives of the research and given the opportunity to withdraw their data from the study (eg experimental
002486 p.000300: 001281 p.000031: studies involving deception). Researchers should also ensure they have received the relevant permission from
002487 p.000300: 001282 p.000031: gatekeepers where necessary to undertake the research, for example from the relevant public sector organisation to
002488 p.000300: 001283 p.000031: undertake research on public sector property.
002489 p.000300: 001284 p.000031:
002490 p.000300: 001285 p.000031: How do you obtain consent from potentially vulnerable people?
002491 p.000300: 001286 p.000031: In cases where research involves potentially vulnerable groups, for example children, older persons or adults with
002492 p.000300: 001287 p.000031: learning disabilities (for those who fall under the remit of the Mental Capacity Act 2005/ Adults with Incapacity
002493 p.000300: 001288 p.000031: (Scotland) Act 2000 see below), every effort should be made to secure actively given informed consent from individual
002494 p.000300: 001289 p.000031: participants. Passive assent, including group assent (with consent given by a gatekeeper) should be avoided wherever
002495 p.000300: 001290 p.000031: possible, and every effort should be made to develop methods of seeking consent that are appropriate to the groups
...

...
002500 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002501 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002502 p.000300: Scotland ‘A’
002503 p.000300: 001496 p.000035: REC).
002504 p.000300: 001497 p.000035: Research that may need a full review
002505 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
002506 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
002507 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
002508 p.000300: 001501 p.000036: 36
002509 p.000300: 001502 p.000036:
...

...
002515 p.000300: 001606 p.000038: Information Act, Human Rights Act
002516 p.000300: 001607 p.000038: • How will the ethics aspects of the project be monitored throughout its course?
002517 p.000300: 001608 p.000038: • Is there an approved research ethics protocol that would be appropriate to use?
002518 p.000300: 001609 p.000038: • How will unforeseen or adverse events in the course of research be managed? Eg do you have procedures to deal
002519 p.000300: with
002520 p.000300: 001610 p.000038: any disclosures from vulnerable participants?
002521 p.000300: 001611 p.000038: • Have you considered data management and curation? What measures have been taken to ensure confidentiality,
002522 p.000300: privacy
002523 p.000300: 001612 p.000038: and data protection during and beyond the end of the project and to encourage data sharing and linkage? See the
002524 p.000300: ESRC
...

...
002529 p.000300: 001652 p.000039: Yes No Light-touch
002530 p.000300: 001653 p.000039: review by department REC
002531 p.000300: 001654 p.000039:
002532 p.000300: 001655 p.000039:
002533 p.000300: 001656 p.000039:
002534 p.000300: 001657 p.000039: Does the research involve NHS patients, records, equipment, premises or vulnerable people under the Mental
002535 p.000300: Capacity Act
002536 p.000300: 001658 p.000039: 2005 and Adults with Incapacity (Scotland) Act 2000?
002537 p.000300: 001659 p.000039:
002538 p.000300: 001660 p.000039:
...

...
002544 p.000300: 001984 p.000047: • Rehabilitation of Offenders Act 1974 www.legislation.gov.uk/ukpga/1974/53
002545 p.000300: 001985 p.000047: • Rehabilitation of Offenders Act 1974 (Exceptions Order 1975)
002546 p.000300: www.legislation.gov.uk/uksi/2013/1198/contents/made
002547 p.000300: 001986 p.000047: • The Rehabilitation of Offenders Act 1974 (Exceptions) Order 1975 (Amendment) (England and Wales) Order 2013.
002548 p.000300: 001987 p.000047: www.legislation.gov.uk/uksi/2013/1198/contents/made
002549 p.000300: 001988 p.000047: • Safeguarding Vulnerable Groups Act 2006 www.legislation.gov.uk/ukpga/2006/47/contents
002550 p.000300: 001989 p.000047: • Protecting of Vulnerable Groups (Scotland) Act 2007 www.legislation.gov.uk/asp/2007/14/contents
002551 p.000300: 001990 p.000047:
002552 p.000300: 001991 p.000047: Other links
002553 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
002554 p.000300: Science
...

...
002736 p.000300:
002737 p.000300: (return to top)
002738 p.000300: ...
002739 p.000300: 000309 p.000007: Research involving:
002740 p.000300: 000310 p.000007:
002741 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002742 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002743 p.000300: 000313 p.000007:
002744 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002745 p.000300: research
002746 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
...

...
002830 p.000300:
002831 p.000300: ...
002832 p.000300: 001282 p.000031: gatekeepers where necessary to undertake the research, for example from the relevant public sector organisation to
002833 p.000300: 001283 p.000031: undertake research on public sector property.
002834 p.000300: 001284 p.000031:
002835 p.000300: 001285 p.000031: How do you obtain consent from potentially vulnerable people?
002836 p.000300: 001286 p.000031: In cases where research involves potentially vulnerable groups, for example children, older persons or adults with
002837 p.000300: 001287 p.000031: learning disabilities (for those who fall under the remit of the Mental Capacity Act 2005/ Adults with Incapacity
002838 p.000300: 001288 p.000031: (Scotland) Act 2000 see below), every effort should be made to secure actively given informed consent from individual
002839 p.000300: 001289 p.000031: participants. Passive assent, including group assent (with consent given by a gatekeeper) should be avoided wherever
002840 p.000300: 001290 p.000031: possible, and every effort should be made to develop methods of seeking consent that are appropriate to the groups
...

...
002892 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002893 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002894 p.000300: Scotland ‘A’
002895 p.000300: 001496 p.000035: REC).
002896 p.000300: 001497 p.000035: Research that may need a full review
002897 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
002898 p.000300: ...
002899 p.000300:
002900 p.000300: ...
002901 p.000300: 001515 p.000036: Will the study involve prolonged or repetitive testing?
...

...
002914 p.000300: 001652 p.000039: Yes No Light-touch
002915 p.000300: 001653 p.000039: review by department REC
002916 p.000300: 001654 p.000039:
002917 p.000300: 001655 p.000039:
002918 p.000300: 001656 p.000039:
002919 p.000300: 001657 p.000039: Does the research involve NHS patients, records, equipment, premises or vulnerable people under the Mental
002920 p.000300: Capacity Act
002921 p.000300: 001658 p.000039: 2005 and Adults with Incapacity (Scotland) Act 2000?
002922 p.000300: 001659 p.000039:
002923 p.000300: 001660 p.000039:
...

...
003047 p.000300: Social / Literacy
003048 p.000300: Searching for indicator literate:
003049 p.000300:
003050 p.000300: (return to top)
003051 p.000300: ...
003052 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
003053 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
003054 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
003055 p.000300: 001192 p.000029: 29
003056 p.000300: 001193 p.000029:
003057 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
003058 p.000300: 001195 p.000029: this should wherever possible include a recorded written witness sign-off. In other circumstances, for example
...

...
003505 p.000300: 000918 p.000022: (http://www.legislation.gov.uk/ukpga/1998/29/contents). Helpful guidance can be found at the ICO guide to data
003506 p.000300: 000919 p.000022: protection (https://ico.org.uk/for-organisations/guide-to-data- protection/).
003507 p.000300: ...
003508 p.000300:
003509 p.000300: ...
003510 p.000300: 000934 p.000023: In most cases, researchers working with vulnerable people will need to secure Disclosure and Barring Service (DBS)
003511 p.000300: 000935 p.000023: clearance (https://www.gov.uk/government/organisations/disclosure-and-barring-service). The DBS offers
003512 p.000300: organisations a
003513 p.000300: 000936 p.000023: means to check the criminal record of researchers to ensure that they do not have a history that would make them
003514 p.000300: 000937 p.000023: unsuitable for work involving children and vulnerable adults. The responsibility for ensuring that applicants are
003515 p.000300: 000938 p.000023: suitable to work with such groups ultimately rests with individual employers. In some cases other individuals (such as
003516 p.000300: 000939 p.000023: a head teacher or social services manager) may be better placed to provide information on necessary disclosures (see
003517 p.000300: 000940 p.000023: the Safeguarding Vulnerable Groups Act 2006 (http://www.legislation.gov.uk/ukpga/2006/47/contents); Rehabilitation
003518 p.000300: of
003519 p.000300: 000941 p.000023: Offenders Act 1974 (http://www.legislation.gov.uk/ukpga/1974/53); the Rehabilitation of Offenders Act 1974
003520 p.000300: (Exceptions
003521 p.000300: 000942 p.000023: Order 1975 (http://www.legislation.gov.uk/uksi/2013/1198/contents/made)).
...

...
003802 p.000300: 001969 p.000047: www.hra.nhs.uk/resources/research-legislation-and-governance/questions-and-answers- the-human-tissue-act-2004/
003803 p.000300: ...
003804 p.000300:
003805 p.000300: ...
003806 p.000300: 001987 p.000047: www.legislation.gov.uk/uksi/2013/1198/contents/made
003807 p.000300: 001988 p.000047: • Safeguarding Vulnerable Groups Act 2006 www.legislation.gov.uk/ukpga/2006/47/contents
003808 p.000300: 001989 p.000047: • Protecting of Vulnerable Groups (Scotland) Act 2007 www.legislation.gov.uk/asp/2007/14/contents
003809 p.000300: 001990 p.000047:
003810 p.000300: 001991 p.000047: Other links
003811 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
003812 p.000300: Science
...

...
003874 p.000300: 000282 p.000006: Many student projects may require only a light-touch review. However, this cannot be assumed; projects, including
003875 p.000300: 000283 p.000006: student projects, which involve more than minimal risk, should receive a full REC review. Some RECs have facilitated
003876 p.000300: 000284 p.000006: ethics approval for research
003877 p.000300: 000285 p.000007: 7
003878 p.000300: 000286 p.000007:
003879 p.000300: 000287 p.000007: with potentially vulnerable people by establishing ethics protocols for commonly occurring situations, such as research
003880 p.000300: ...
003881 p.000300:
003882 p.000300: ...
003883 p.000300: 000600 p.000014:
...

...
004088 p.000300: threat Threat of Stigma
004089 p.000300: undue influence Undue Influence
004090 p.000300: union Trade Union Membership
004091 p.000300: usage Laboratory Staff
004092 p.000300: violence Threat of Violence
004093 p.000300: vulnerable Child
004094 p.000300: welfare Welfare Recipient
004095 p.000300: women Women
004096 p.000300:
004097 p.000300:
004098 p.000300: Indicator Peers (Indicators in Same Vulnerabilty)
004099 p.000300: Indicator Peers
004100 p.000300: child ['children', 'vulnerable']
004101 p.000300: children ['child', 'vulnerable']
004102 p.000300: cognitive ['cognitive impairment', 'impairment', 'impaired']
004103 p.000300: cognitive impairment ['cognitive', 'impairment', 'impaired']
004104 p.000300: cultural ['culture']
004105 p.000300: culture ['cultural']
...

...
004117 p.000300: political ['party']
004118 p.000300: poor ['economic']
004119 p.000300: religious ['special']
004120 p.000300: single ['engaged']
004121 p.000300: special ['religious']
004122 p.000300: vulnerable ['child', 'children']
004123 p.000300:
004124 p.000300:
004125 p.000300: Trigger Words
004126 p.000300: consent
...

...
004139 p.000300:
004140 p.000300: self-determination
004141 p.000300:
004142 p.000300: sensitive
004143 p.000300:
004144 p.000300: vulnerable
004145 p.000300:
004146 p.000300:
004147 p.000300: Applicable Type / Vulnerability / Indicator Overlay for this Input
004148 p.000300: Vulnerability
...

...
004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
004179 p.000300: Political Political political
004180 p.000300: Political Trade Union Membership union
004181 p.000300: Social Access to Social Goods access
004182 p.000300: Social Breastfeeding Children justice
004183 p.000300: Social Child child
004184 p.000300: Social Child children
004185 p.000300: Social Child vulnerable
004186 p.000300: Social Educational education
004187 p.000300: Social Educational educational
004188 p.000300: Social Elderly elderly
004189 p.000300: Social Ethnicity ethnic
...

Social / Educational

Searching for indicator education:

(return to top)
...
001197 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
001198 p.000300: expertise
001199 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
001200 p.000300: research
001201 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
001202 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
001203 p.000300: 000520 p.000012: professional care or counselling, and individuals with specific methodological expertise (for example, quantitative or
001204 p.000300: 000521 p.000012: qualitative methods) relevant to the research they review. A REC should include among its membership people who
001205 p.000300: are
001206 p.000300: 000522 p.000012: collectively familiar with a range of
...

...
002134 p.000300: 001991 p.000047: Other links
002135 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
002136 p.000300: Science
002137 p.000300: 001993 p.000047: Research http://acss.wpengine.com/wp- content/uploads/2013/11/pb3_genericethicsprinciples.pdf
002138 p.000300: 001994 p.000047: • Dockett, S., Perry, B. (2011). Researching with young children: seeking assent. Child Indicators Research,
002139 p.000300: 001995 p.000047: 4(2):231-247, DOI: 10.1007/s12187-010-9084-0 www.victoria.ac.nz/education/pdf/ethics/Docket-Perry-2011.pdf
002140 p.000300: 001996 p.000048: 48
002141 p.000300: 001997 p.000048:
002142 p.000300: 001998 p.000048: • Ipsos-MORI Social Research Institute (2014). Dialogue on data
002143 p.000300: ...
...

...
002371 p.000300: 001991 p.000047: Other links
002372 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
002373 p.000300: Science
002374 p.000300: 001993 p.000047: Research http://acss.wpengine.com/wp- content/uploads/2013/11/pb3_genericethicsprinciples.pdf
002375 p.000300: 001994 p.000047: • Dockett, S., Perry, B. (2011). Researching with young children: seeking assent. Child Indicators Research,
002376 p.000300: 001995 p.000047: 4(2):231-247, DOI: 10.1007/s12187-010-9084-0 www.victoria.ac.nz/education/pdf/ethics/Docket-Perry-2011.pdf
002377 p.000300: 001996 p.000048: 48
002378 p.000300: 001997 p.000048:
002379 p.000300: 001998 p.000048: • Ipsos-MORI Social Research Institute (2014). Dialogue on data
002380 p.000300: ...
...

...
002553 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
002554 p.000300: Science
002555 p.000300: 001993 p.000047: Research http://acss.wpengine.com/wp- content/uploads/2013/11/pb3_genericethicsprinciples.pdf
002556 p.000300: ...
002557 p.000300:
002558 p.000300: Social / Educational
002559 p.000300: Searching for indicator education:
002560 p.000300:
002561 p.000300: (return to top)
002562 p.000300: ...
002563 p.000300: 000447 p.000011: activities below:
002564 p.000300: 000448 p.000011:
002565 p.000300: 000449 p.000011: • Routine audit
002566 p.000300: 000450 p.000011: • Performance reviews
002567 p.000300: 000451 p.000011: • Quality assurance studies
002568 p.000300: 000452 p.000011: • Testing within normal education requirements
002569 p.000300: 000453 p.000011: • Literary or artistic criticism.
002570 p.000300: 000454 p.000011:
002571 p.000300: 000455 p.000011: While data collected and stored as a record at an individual level are considered personal data, material already in
002572 p.000300: 000456 p.000011: the public domain are not. For example, published biographies, newspaper accounts of an individual’s activities
...

...
002580 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
002581 p.000300: expertise
002582 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
002583 p.000300: research
002584 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
002585 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
002586 p.000300: 000520 p.000012: professional care or counselling, and individuals with specific methodological expertise (for example, quantitative or
002587 p.000300: 000521 p.000012: qualitative methods) relevant to the research they review. A REC should include among its membership people who
002588 p.000300: are
002589 p.000300: 000522 p.000012: collectively familiar with a range of
...

...
002595 p.000300: 001991 p.000047: Other links
002596 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
002597 p.000300: Science
002598 p.000300: 001993 p.000047: Research http://acss.wpengine.com/wp- content/uploads/2013/11/pb3_genericethicsprinciples.pdf
002599 p.000300: 001994 p.000047: • Dockett, S., Perry, B. (2011). Researching with young children: seeking assent. Child Indicators Research,
002600 p.000300: 001995 p.000047: 4(2):231-247, DOI: 10.1007/s12187-010-9084-0 www.victoria.ac.nz/education/pdf/ethics/Docket-Perry-2011.pdf
002601 p.000300: 001996 p.000048: 48
002602 p.000300: 001997 p.000048:
002603 p.000300: 001998 p.000048: • Ipsos-MORI Social Research Institute (2014). Dialogue on data
002604 p.000300: 001999 p.000048: www.esrc.ac.uk/_images/Dialogue_on_Data_report_tcm8-30270.pdf
...

...
002677 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
002678 p.000300: expertise
002679 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
002680 p.000300: research
002681 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
002682 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
002683 p.000300: 000520 p.000012: professional care or counselling, and individuals with specific methodological expertise (for example, quantitative or
002684 p.000300: 000521 p.000012: qualitative methods) relevant to the research they review. A REC should include among its membership people who
002685 p.000300: are
002686 p.000300: 000522 p.000012: collectively familiar with a range of
...

...
003422 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
003423 p.000300: expertise
003424 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
003425 p.000300: research
003426 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
003427 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
003428 p.000300: 000520 p.000012: professional care or counselling, and individuals with specific methodological expertise (for example, quantitative or
003429 p.000300: 000521 p.000012: qualitative methods) relevant to the research they review. A REC should include among its membership people who
003430 p.000300: are
003431 p.000300: 000522 p.000012: collectively familiar with a range of
...

...
003810 p.000300: 001991 p.000047: Other links
003811 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
003812 p.000300: Science
003813 p.000300: 001993 p.000047: Research http://acss.wpengine.com/wp- content/uploads/2013/11/pb3_genericethicsprinciples.pdf
003814 p.000300: 001994 p.000047: • Dockett, S., Perry, B. (2011). Researching with young children: seeking assent. Child Indicators Research,
003815 p.000300: 001995 p.000047: 4(2):231-247, DOI: 10.1007/s12187-010-9084-0 www.victoria.ac.nz/education/pdf/ethics/Docket-Perry-2011.pdf
003816 p.000300: 001996 p.000048: 48
003817 p.000300: 001997 p.000048:
003818 p.000300: 001998 p.000048: • Ipsos-MORI Social Research Institute (2014). Dialogue on data
003819 p.000300: 001999 p.000048: www.esrc.ac.uk/_images/Dialogue_on_Data_report_tcm8-30270.pdf
...

...
004005 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
004006 p.000300: expertise
004007 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
004008 p.000300: research
004009 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
004010 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
004011 p.000300: ...
004012 p.000300:
004013 p.000300: Social / Youth/Minors
004014 p.000300: Searching for indicator minor:
...

...
004047 p.000300: dependence Drug Dependence
004048 p.000300: dependent Dependent
004049 p.000300: disability Mentally Disabled
004050 p.000300: drug Drug Usage
004051 p.000300: economic Economic/Poverty
004052 p.000300: education Educational
004053 p.000300: educational Educational
004054 p.000300: elderly Elderly
004055 p.000300: engaged Marital Status
004056 p.000300: ethnic Ethnicity
004057 p.000300: family Motherhood/Family
...

...
004103 p.000300: cognitive impairment ['cognitive', 'impairment', 'impaired']
004104 p.000300: cultural ['culture']
004105 p.000300: culture ['cultural']
004106 p.000300: drug ['influence']
004107 p.000300: economic ['poor']
004108 p.000300: education ['educational']
004109 p.000300: educational ['education']
004110 p.000300: engaged ['single']
004111 p.000300: ['cognitive', 'cognitive impairment',
004112 p.000300: impaired
004113 p.000300: 'impairment']
...

...
004181 p.000300: Social Access to Social Goods access
004182 p.000300: Social Breastfeeding Children justice
004183 p.000300: Social Child child
004184 p.000300: Social Child children
004185 p.000300: Social Child vulnerable
004186 p.000300: Social Educational education
004187 p.000300: Social Educational educational
004188 p.000300: Social Elderly elderly
004189 p.000300: Social Ethnicity ethnic
004190 p.000300: Social Fetus/Neonate capacity
004191 p.000300: Social Gender gender
...

Searching for indicator educational:

(return to top)
...
002553 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
002554 p.000300: Science
002555 p.000300: 001993 p.000047: Research http://acss.wpengine.com/wp- content/uploads/2013/11/pb3_genericethicsprinciples.pdf
002556 p.000300: ...
002557 p.000300:
002558 p.000300: Social / Educational
002559 p.000300: Searching for indicator education:
002560 p.000300:
002561 p.000300: (return to top)
002562 p.000300: ...
002563 p.000300: 000447 p.000011: activities below:
...

...
002602 p.000300: 001997 p.000048:
002603 p.000300: 001998 p.000048: • Ipsos-MORI Social Research Institute (2014). Dialogue on data
002604 p.000300: 001999 p.000048: www.esrc.ac.uk/_images/Dialogue_on_Data_report_tcm8-30270.pdf
002605 p.000300: ...
002606 p.000300:
002607 p.000300: Searching for indicator educational:
002608 p.000300:
002609 p.000300: (return to top)
002610 p.000300: ...
002611 p.000300: 001871 p.000044: • Association of Internet Researchers (2012). Ethical decision-making and internet research 2.0
002612 p.000300: 001872 p.000044: http://aoir.org/ethics/
002613 p.000300: 001873 p.000044: • Association of Internet Researchers, Ethics guide http://ethics.aoir.org/index.php?title=Main_Page
002614 p.000300: 001874 p.000044: • Association of Social Anthropologists of the UK and the Commonwealth (ASA) 2011. Ethical Guidelines for good
002615 p.000300: 001875 p.000044: research practice www.theasa.org/ethics.shtml
002616 p.000300: 001876 p.000044: • British Educational Research Association (2012) Ethics and Educational Research
002617 p.000300: 001877 p.000044: www.bera.ac.uk/resources/ethics-and-educational-research
002618 p.000300: 001878 p.000044: • British Psychological Society (2014) Code of Human Research Ethics
002619 p.000300: 001879 p.000044: www.bps.org.uk/publications/policy-and-guidelines/research-guidelines-policy- documents/research-guidelines-poli
002620 p.000300: 001880 p.000044: • British Psychological Society Ethics Guidelines for internet-mediated research (2013)
002621 p.000300: 001881 p.000044: www.bps.org.uk/publications/policy-and-guidelines/research-guidelines-policy- documents/research-guidelines-poli
...

...
003743 p.000300: 001871 p.000044: • Association of Internet Researchers (2012). Ethical decision-making and internet research 2.0
003744 p.000300: 001872 p.000044: http://aoir.org/ethics/
003745 p.000300: 001873 p.000044: • Association of Internet Researchers, Ethics guide http://ethics.aoir.org/index.php?title=Main_Page
003746 p.000300: 001874 p.000044: • Association of Social Anthropologists of the UK and the Commonwealth (ASA) 2011. Ethical Guidelines for good
003747 p.000300: 001875 p.000044: research practice www.theasa.org/ethics.shtml
003748 p.000300: 001876 p.000044: • British Educational Research Association (2012) Ethics and Educational Research
003749 p.000300: 001877 p.000044: www.bera.ac.uk/resources/ethics-and-educational-research
003750 p.000300: 001878 p.000044: • British Psychological Society (2014) Code of Human Research Ethics
003751 p.000300: ...
003752 p.000300:
003753 p.000300: ...
...

...
004047 p.000300: dependence Drug Dependence
004048 p.000300: dependent Dependent
004049 p.000300: disability Mentally Disabled
004050 p.000300: drug Drug Usage
004051 p.000300: economic Economic/Poverty
004052 p.000300: education Educational
004053 p.000300: educational Educational
004054 p.000300: elderly Elderly
004055 p.000300: engaged Marital Status
004056 p.000300: ethnic Ethnicity
004057 p.000300: family Motherhood/Family
...

...
004103 p.000300: cognitive impairment ['cognitive', 'impairment', 'impaired']
004104 p.000300: cultural ['culture']
004105 p.000300: culture ['cultural']
004106 p.000300: drug ['influence']
004107 p.000300: economic ['poor']
004108 p.000300: education ['educational']
004109 p.000300: educational ['education']
004110 p.000300: engaged ['single']
004111 p.000300: ['cognitive', 'cognitive impairment',
004112 p.000300: impaired
004113 p.000300: 'impairment']
...

...
004181 p.000300: Social Access to Social Goods access
004182 p.000300: Social Breastfeeding Children justice
004183 p.000300: Social Child child
004184 p.000300: Social Child children
004185 p.000300: Social Child vulnerable
004186 p.000300: Social Educational education
004187 p.000300: Social Educational educational
004188 p.000300: Social Elderly elderly
004189 p.000300: Social Ethnicity ethnic
004190 p.000300: Social Fetus/Neonate capacity
004191 p.000300: Social Gender gender
...

Social / Elderly

Searching for indicator elderly:

(return to top)
...
000292 p.000300:
000293 p.000300: ...
000294 p.000300: 000345 p.000008:
000295 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
000296 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
000297 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
000298 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
000299 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
000300 p.000300: gatekeeper
000301 p.000300: 000351 p.000008: (eg employees recruited through their workplace). Permission for access to other groups, for example participants in a
...

...
001446 p.000300: ...
001447 p.000300: 000344 p.000008: sufficient. Issues however may arise when data are linked and where it may be possible to identify participants.
001448 p.000300: 000345 p.000008:
001449 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
001450 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
001451 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
001452 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
001453 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
001454 p.000300: gatekeeper
001455 p.000300: 000351 p.000008: (eg employees recruited through their workplace). Permission for access to other groups, for example participants in a
...

...
001802 p.000300: 000343 p.000008: of these datasets. In many cases a light-touch review confirming that researchers have met these requirements will be
001803 p.000300: 000344 p.000008: sufficient. Issues however may arise when data are linked and where it may be possible to identify participants.
001804 p.000300: 000345 p.000008:
001805 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
001806 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
001807 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
001808 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
001809 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
001810 p.000300: gatekeeper
001811 p.000300: 000351 p.000008: (eg employees recruited through their workplace). Permission for access to other groups, for example participants in a
...

...
002179 p.000300: 000343 p.000008: of these datasets. In many cases a light-touch review confirming that researchers have met these requirements will be
002180 p.000300: 000344 p.000008: sufficient. Issues however may arise when data are linked and where it may be possible to identify participants.
002181 p.000300: 000345 p.000008:
002182 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
002183 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
002184 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
002185 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
002186 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
002187 p.000300: gatekeeper
002188 p.000300: 000351 p.000008: (eg employees recruited through their workplace). Permission for access to other groups, for example participants in a
...

...
002323 p.000300: 001575 p.000037: o anyone else be put at risk as a consequence of this research
002324 p.000300: 001576 p.000037: • What might these risks be?
002325 p.000300: 001577 p.000037: • How can these risks be addressed?
002326 p.000300: 001578 p.000037: • How will you protect your data at the research site and away from the research site?
002327 p.000300: 001579 p.000037: • Details and recruitment of participants:
002328 p.000300: 001580 p.000037: o What types of people will be recruited? Eg students, children, people with learning disabilities, elderly
002329 p.000300: 001581 p.000037: o How will the competence of participants to give informed consent be determined?
002330 p.000300: 001582 p.000038: 38
002331 p.000300: 001583 p.000038:
002332 p.000300: 001584 p.000038: o How, where, and by whom participants will be identified, approached, and recruited?
...

...
002619 p.000300: 001879 p.000044: www.bps.org.uk/publications/policy-and-guidelines/research-guidelines-policy- documents/research-guidelines-poli
002620 p.000300: 001880 p.000044: • British Psychological Society Ethics Guidelines for internet-mediated research (2013)
002621 p.000300: 001881 p.000044: www.bps.org.uk/publications/policy-and-guidelines/research-guidelines-policy- documents/research-guidelines-poli
002622 p.000300: ...
002623 p.000300:
002624 p.000300: Social / Elderly
002625 p.000300: Searching for indicator elderly:
002626 p.000300:
002627 p.000300: (return to top)
002628 p.000300: ...
002629 p.000300: 000343 p.000008: of these datasets. In many cases a light-touch review confirming that researchers have met these requirements will be
002630 p.000300: 000344 p.000008: sufficient. Issues however may arise when data are linked and where it may be possible to identify participants.
002631 p.000300: 000345 p.000008:
002632 p.000300: 000346 p.000008: • Individuals or groups where permission of a gatekeeper is normally required for initial or continued access to
002633 p.000300: 000347 p.000008: participants. This includes research involving gatekeepers such as adult professionals (eg those working with children
002634 p.000300: 000348 p.000008: or the elderly), or research in communities (in the UK or overseas) whereaccess to research participants is not
002635 p.000300: 000349 p.000008: possible without the permission of another adult, such as another family member (eg the parent or husband of the
002636 p.000300: 000350 p.000008: participant) or a community leader, and research where participants are in a dependent relationship with the
002637 p.000300: gatekeeper
002638 p.000300: 000351 p.000008: (eg employees recruited through their workplace). Permission for access to other groups, for example participants in a
...

...
002643 p.000300: 001575 p.000037: o anyone else be put at risk as a consequence of this research
002644 p.000300: 001576 p.000037: • What might these risks be?
002645 p.000300: 001577 p.000037: • How can these risks be addressed?
002646 p.000300: 001578 p.000037: • How will you protect your data at the research site and away from the research site?
002647 p.000300: 001579 p.000037: • Details and recruitment of participants:
002648 p.000300: 001580 p.000037: o What types of people will be recruited? Eg students, children, people with learning disabilities, elderly
002649 p.000300: 001581 p.000037: o How will the competence of participants to give informed consent be determined?
002650 p.000300: 001582 p.000038: 38
002651 p.000300: 001583 p.000038:
002652 p.000300: 001584 p.000038: o How, where, and by whom participants will be identified, approached, and recruited?
...

...
004049 p.000300: disability Mentally Disabled
004050 p.000300: drug Drug Usage
004051 p.000300: economic Economic/Poverty
004052 p.000300: education Educational
004053 p.000300: educational Educational
004054 p.000300: elderly Elderly
004055 p.000300: engaged Marital Status
004056 p.000300: ethnic Ethnicity
004057 p.000300: family Motherhood/Family
004058 p.000300: gender Gender
...

...
004183 p.000300: Social Child child
004184 p.000300: Social Child children
004185 p.000300: Social Child vulnerable
004186 p.000300: Social Educational education
004187 p.000300: Social Educational educational
004188 p.000300: Social Elderly elderly
004189 p.000300: Social Ethnicity ethnic
004190 p.000300: Social Fetus/Neonate capacity
004191 p.000300: Social Gender gender
004192 p.000300: Social In Nursing Home nursing home
...

Social / Ethnicity

Searching for indicator ethnic:

(return to top)
...
000084 p.000300: 002093 p.000050: confidentially is afforded. Where necessary, the project information sheet will be translated, although it is
000085 p.000300: 002094 p.000050: anticipated that English will be the lingua franca. Participation in the research will be voluntary, and informed
000086 p.000300: 002095 p.000050: consent will be discussed with all participants. However, it is anticipated, particularly in the street surveys, that
000087 p.000300: 002096 p.000050: verbal as opposed to signed consent, will be more readily obtainable.
000088 p.000300: 002097 p.000050:
000089 p.000300: 002098 p.000050: The first stage of data collection involves a socio-economic and spatial survey of a multi- ethnic street in each
000090 p.000300: 002099 p.000050: respective city. Each shop unit is given a tracking code to relate the GIS spatial position to the survey material.
000091 p.000300: 002100 p.000050: Personal identifiers are removed and the anonymity of participants will be secured through both research unit codes
000092 p.000300: and
000093 p.000300: 002101 p.000050: pseudonyms. The raw data of each street survey will be collated in password protected computers and accessed by
...

...
001180 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001181 p.000300: 000323 p.000008: 8
001182 p.000300: 000324 p.000008:
001183 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001184 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001185 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001186 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001187 p.000300: 000329 p.000008:
001188 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001189 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
001196 p.000300: member with
001197 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
001198 p.000300: expertise
001199 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
001200 p.000300: research
001201 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
001202 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
001203 p.000300: 000520 p.000012: professional care or counselling, and individuals with specific methodological expertise (for example, quantitative or
001204 p.000300: 000521 p.000012: qualitative methods) relevant to the research they review. A REC should include among its membership people who
001205 p.000300: are
...

...
001327 p.000300: ...
001328 p.000300:
001329 p.000300: ...
001330 p.000300: 001787 p.000042: individual.
001331 p.000300: 001788 p.000042:
001332 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
001333 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
001334 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
001335 p.000300: Act
001336 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
...

...
001434 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001435 p.000300: 000323 p.000008: 8
001436 p.000300: 000324 p.000008:
001437 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001438 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001439 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001440 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001441 p.000300: 000329 p.000008:
001442 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001443 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
001519 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001520 p.000300: 000323 p.000008: 8
001521 p.000300: 000324 p.000008:
001522 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001523 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001524 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001525 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001526 p.000300: 000329 p.000008:
001527 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001528 p.000300: ...
...

...
001612 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001613 p.000300: 000323 p.000008: 8
001614 p.000300: 000324 p.000008:
001615 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001616 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001617 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001618 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001619 p.000300: 000329 p.000008:
001620 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001621 p.000300: ...
...

...
001723 p.000300: ...
001724 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
001725 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
001726 p.000300: 001787 p.000042: individual.
001727 p.000300: 001788 p.000042:
001728 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
001729 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
001730 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
001731 p.000300: Act
001732 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
...

...
001753 p.000300:
001754 p.000300: ...
001755 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
001756 p.000300: 001787 p.000042: individual.
001757 p.000300: 001788 p.000042:
001758 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
001759 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
001760 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
001761 p.000300: Act
001762 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
...

...
002052 p.000300: ...
002053 p.000300:
002054 p.000300: ...
002055 p.000300: 002002 p.000048: www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.1001328
002056 p.000300: 002003 p.000048: • Observatory for Responsible Research and Innovation in ICT http://responsible- innovation.org.uk/torrii/
002057 p.000300: 002004 p.000048: • Salway et al (2011) Ethnic diversity and inequality ethical and scientific rigour in social research. Joseph
002058 p.000300: 002005 p.000048: Roundtree Foundation www.jrf.org.uk/publications/ethnic-diversity- social-research
002059 p.000300: 002006 p.000048: • Stevens, Leslie A. and Laurie, Graeme, The Administrative Data Research Centre Scotland: A Scoping Report on
002060 p.000300: the
002061 p.000300: 002007 p.000048: Legal & Ethical Issues Arising from Access & Linkage of Administrative Data (August 27, 2014). Edinburgh School of
002062 p.000300: Law
...

...
002579 p.000300: member with
002580 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
002581 p.000300: expertise
002582 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
002583 p.000300: research
002584 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
002585 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
002586 p.000300: 000520 p.000012: professional care or counselling, and individuals with specific methodological expertise (for example, quantitative or
002587 p.000300: 000521 p.000012: qualitative methods) relevant to the research they review. A REC should include among its membership people who
002588 p.000300: are
...

...
002650 p.000300: 001582 p.000038: 38
002651 p.000300: 001583 p.000038:
002652 p.000300: 001584 p.000038: o How, where, and by whom participants will be identified, approached, and recruited?
002653 p.000300: ...
002654 p.000300:
002655 p.000300: Social / Ethnicity
002656 p.000300: Searching for indicator ethnic:
002657 p.000300:
002658 p.000300: (return to top)
002659 p.000300: ...
002660 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
002661 p.000300: 000323 p.000008: 8
002662 p.000300: 000324 p.000008:
002663 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
002664 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
002665 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
002666 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
002667 p.000300: 000329 p.000008:
002668 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
002669 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
002676 p.000300: member with
002677 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
002678 p.000300: expertise
002679 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
002680 p.000300: research
002681 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
002682 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
002683 p.000300: 000520 p.000012: professional care or counselling, and individuals with specific methodological expertise (for example, quantitative or
002684 p.000300: 000521 p.000012: qualitative methods) relevant to the research they review. A REC should include among its membership people who
002685 p.000300: are
...

...
002690 p.000300: 001784 p.000042: individual who can be identified a) from those data or, b) from those data and other information which is in the
002691 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
002692 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
002693 p.000300: 001787 p.000042: individual.
002694 p.000300: 001788 p.000042:
002695 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
002696 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
002697 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
002698 p.000300: Act
002699 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
...

...
002704 p.000300: 001999 p.000048: www.esrc.ac.uk/_images/Dialogue_on_Data_report_tcm8-30270.pdf
002705 p.000300: 002000 p.000048: • Janssens ACJW, Kraft P (2012) Research Conducted Using Data Obtained through Online Communities: Ethical
002706 p.000300: 002001 p.000048: Implications of Methodological Limitations. PLoS Med 9(10): e1001328. doi:10.1371/journal.pmed.1001328
002707 p.000300: 002002 p.000048: www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.1001328
002708 p.000300: 002003 p.000048: • Observatory for Responsible Research and Innovation in ICT http://responsible- innovation.org.uk/torrii/
002709 p.000300: 002004 p.000048: • Salway et al (2011) Ethnic diversity and inequality ethical and scientific rigour in social research. Joseph
002710 p.000300: 002005 p.000048: Roundtree Foundation www.jrf.org.uk/publications/ethnic-diversity- social-research
002711 p.000300: 002006 p.000048: • Stevens, Leslie A. and Laurie, Graeme, The Administrative Data Research Centre Scotland: A Scoping Report on
002712 p.000300: the
002713 p.000300: 002007 p.000048: Legal & Ethical Issues Arising from Access & Linkage of Administrative Data (August 27, 2014). Edinburgh School of
002714 p.000300: Law
...

...
002720 p.000300: 002093 p.000050: confidentially is afforded. Where necessary, the project information sheet will be translated, although it is
002721 p.000300: 002094 p.000050: anticipated that English will be the lingua franca. Participation in the research will be voluntary, and informed
002722 p.000300: 002095 p.000050: consent will be discussed with all participants. However, it is anticipated, particularly in the street surveys, that
002723 p.000300: 002096 p.000050: verbal as opposed to signed consent, will be more readily obtainable.
002724 p.000300: 002097 p.000050:
002725 p.000300: 002098 p.000050: The first stage of data collection involves a socio-economic and spatial survey of a multi- ethnic street in each
002726 p.000300: 002099 p.000050: respective city. Each shop unit is given a tracking code to relate the GIS spatial position to the survey material.
002727 p.000300: 002100 p.000050: Personal identifiers are removed and the anonymity of participants will be secured through both research unit codes
002728 p.000300: and
002729 p.000300: 002101 p.000050: pseudonyms. The raw data of each street survey will be collated in password protected computers and accessed by
...

...
002965 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
002966 p.000300: 000323 p.000008: 8
002967 p.000300: 000324 p.000008:
002968 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
002969 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
002970 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
002971 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
002972 p.000300: 000329 p.000008:
002973 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
002974 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
003032 p.000300:
003033 p.000300: (return to top)
003034 p.000300: ...
003035 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003036 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003037 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003038 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003039 p.000300: 000329 p.000008:
003040 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003041 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
003183 p.000300: 001784 p.000042: individual who can be identified a) from those data or, b) from those data and other information which is in the
003184 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
003185 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
003186 p.000300: 001787 p.000042: individual.
003187 p.000300: 001788 p.000042:
003188 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
003189 p.000300: ...
003190 p.000300:
003191 p.000300: Social / Police Officer
003192 p.000300: Searching for indicator officer:
...

...
003285 p.000300: 001784 p.000042: individual who can be identified a) from those data or, b) from those data and other information which is in the
003286 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
003287 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
003288 p.000300: 001787 p.000042: individual.
003289 p.000300: 001788 p.000042:
003290 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
003291 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
003292 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
003293 p.000300: Act
003294 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
...

...
003302 p.000300: ...
003303 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
003304 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
003305 p.000300: 001787 p.000042: individual.
003306 p.000300: 001788 p.000042:
003307 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
003308 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
003309 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
003310 p.000300: Act
003311 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
...

...
003421 p.000300: member with
003422 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
003423 p.000300: expertise
003424 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
003425 p.000300: research
003426 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
003427 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
003428 p.000300: 000520 p.000012: professional care or counselling, and individuals with specific methodological expertise (for example, quantitative or
003429 p.000300: 000521 p.000012: qualitative methods) relevant to the research they review. A REC should include among its membership people who
003430 p.000300: are
...

...
003819 p.000300: 001999 p.000048: www.esrc.ac.uk/_images/Dialogue_on_Data_report_tcm8-30270.pdf
003820 p.000300: 002000 p.000048: • Janssens ACJW, Kraft P (2012) Research Conducted Using Data Obtained through Online Communities: Ethical
003821 p.000300: 002001 p.000048: Implications of Methodological Limitations. PLoS Med 9(10): e1001328. doi:10.1371/journal.pmed.1001328
003822 p.000300: 002002 p.000048: www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.1001328
003823 p.000300: 002003 p.000048: • Observatory for Responsible Research and Innovation in ICT http://responsible- innovation.org.uk/torrii/
003824 p.000300: 002004 p.000048: • Salway et al (2011) Ethnic diversity and inequality ethical and scientific rigour in social research. Joseph
003825 p.000300: 002005 p.000048: Roundtree Foundation www.jrf.org.uk/publications/ethnic-diversity- social-research
003826 p.000300: 002006 p.000048: • Stevens, Leslie A. and Laurie, Graeme, The Administrative Data Research Centre Scotland: A Scoping Report on
003827 p.000300: the
003828 p.000300: 002007 p.000048: Legal & Ethical Issues Arising from Access & Linkage of Administrative Data (August 27, 2014). Edinburgh School of
003829 p.000300: Law
...

...
003963 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
003964 p.000300: 000323 p.000008: 8
003965 p.000300: 000324 p.000008:
003966 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003967 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003968 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003969 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003970 p.000300: 000329 p.000008:
003971 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003972 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
003980 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
003981 p.000300: 000323 p.000008: 8
003982 p.000300: 000324 p.000008:
003983 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003984 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003985 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003986 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003987 p.000300: 000329 p.000008:
003988 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003989 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
004004 p.000300: member with
004005 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
004006 p.000300: expertise
004007 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
004008 p.000300: research
004009 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
004010 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
004011 p.000300: ...
004012 p.000300:
004013 p.000300: Social / Youth/Minors
...

...
004051 p.000300: economic Economic/Poverty
004052 p.000300: education Educational
004053 p.000300: educational Educational
004054 p.000300: elderly Elderly
004055 p.000300: engaged Marital Status
004056 p.000300: ethnic Ethnicity
004057 p.000300: family Motherhood/Family
004058 p.000300: gender Gender
004059 p.000300: health Health
004060 p.000300: hiv HIV/AIDS
...

...
004184 p.000300: Social Child children
004185 p.000300: Social Child vulnerable
004186 p.000300: Social Educational education
004187 p.000300: Social Educational educational
004188 p.000300: Social Elderly elderly
004189 p.000300: Social Ethnicity ethnic
004190 p.000300: Social Fetus/Neonate capacity
004191 p.000300: Social Gender gender
004192 p.000300: Social In Nursing Home nursing home
004193 p.000300: Social Incarcerated restricted
...

Searching for indicator ethnicity:

(return to top)
...
002650 p.000300: 001582 p.000038: 38
002651 p.000300: 001583 p.000038:
002652 p.000300: 001584 p.000038: o How, where, and by whom participants will be identified, approached, and recruited?
002653 p.000300: ...
002654 p.000300:
002655 p.000300: Social / Ethnicity
002656 p.000300: Searching for indicator ethnic:
002657 p.000300:
002658 p.000300: (return to top)
002659 p.000300: ...
002660 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
...

...
004051 p.000300: economic Economic/Poverty
004052 p.000300: education Educational
004053 p.000300: educational Educational
004054 p.000300: elderly Elderly
004055 p.000300: engaged Marital Status
004056 p.000300: ethnic Ethnicity
004057 p.000300: family Motherhood/Family
004058 p.000300: gender Gender
004059 p.000300: health Health
004060 p.000300: hiv HIV/AIDS
...

...
004184 p.000300: Social Child children
004185 p.000300: Social Child vulnerable
004186 p.000300: Social Educational education
004187 p.000300: Social Educational educational
004188 p.000300: Social Elderly elderly
004189 p.000300: Social Ethnicity ethnic
004190 p.000300: Social Fetus/Neonate capacity
004191 p.000300: Social Gender gender
004192 p.000300: Social In Nursing Home nursing home
004193 p.000300: Social Incarcerated restricted
...

Social / Fetus/Neonate

Searching for indicator capacity:

(return to top)
...
000146 p.000300: ...
000147 p.000300:
000148 p.000300: ...
000149 p.000300: 001316 p.000032: 32
000150 p.000300: 001317 p.000032:
000151 p.000300: 001318 p.000032: who knows the person well who lacks capacity to make a decision, but is not a professional or paid care worker; this
000152 p.000300: 001319 p.000032: does not include family members receiving some of the person’s pension or other benefits as a payment towards
000153 p.000300: their
000154 p.000300: 001320 p.000032: share of the household expenses. The guidance states that it should be someone whom the person who lacks
000155 p.000300: capacity to
000156 p.000300: 001321 p.000032: make a decision would trust with important decisions about their welfare.
000157 p.000300: 001322 p.000032: Thus, a personal consultee could be a family member or close friend of the person.
000158 p.000300: 001323 p.000032:
000159 p.000300: 001324 p.000032: If no personal consultee can be identified, a nominated consultee should be proposed by the researcher. This is
...

...
000282 p.000300: 000309 p.000007: Research involving:
000283 p.000300: 000310 p.000007:
000284 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000285 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000286 p.000300: 000313 p.000007:
000287 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000288 p.000300: research
000289 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
000290 p.000300: 000316 p.000007:
000291 p.000300: ...
000292 p.000300:
000293 p.000300: ...
...

...
000360 p.000300: yes,
000361 p.000300: 001490 p.000035: please give brief details as an annex)
000362 p.000300: 001491 p.000035: Will the study involve recruitment of patients or staff through the NHS or the use of NHS data or premises and/or
000363 p.000300: 001492 p.000035: equipment?
000364 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
000365 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000366 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000367 p.000300: Scotland ‘A’
000368 p.000300: 001496 p.000035: REC).
000369 p.000300: 001497 p.000035: Research that may need a full review
...

...
000423 p.000300: 000885 p.000021: arrangements-for-research-ethics-committees/)apply to research involving research participants recruited through the
000424 p.000300: 000886 p.000021: NHS or Social Care services, and such research should be reviewed by a recognised and appropriate REC (see
000425 p.000300: Appendix D).
000426 p.000300: 000887 p.000022: 22
000427 p.000300: 000888 p.000022:
000428 p.000300: 000889 p.000022: In addition, research involving adults who come under the remit of the Mental Capacity Act 2005
000429 p.000300: 000890 p.000022: (http://www.legislation.gov.uk/ukpga/2005/9/contents) or the Adults with Incapacity (Scotland) Act 2000
000430 p.000300: 000891 p.000022: (http://www.legislation.gov.uk/asp/2000/4/contents) requires review by a recognised and appropriate REC operating
000431 p.000300: under
000432 p.000300: 000892 p.000022: the GAfREC (http://www.hra.nhs.uk/resources/research-legislation-and-governance/governance-
...

...
000434 p.000300: requires
000435 p.000300: 000894 p.000022: HRA/NRES REC approval see the HRA approval decision tool (http://www.hra-decisiontools.org.uk/ethics/). The HRA
000436 p.000300: and NHS
000437 p.000300: 000895 p.000022: Scotland research ethics service (http://www.nhsresearchscotland.org.uk/226_Research+Ethics.html) also provide
000438 p.000300: guidance
000439 p.000300: 000896 p.000022: on the scope of the research provisions under the Mental Capacity Act 2005
000440 p.000300: 000897 p.000022: (http://www.hra.nhs.uk/resources/research-legislation-and-governance/questions-and- answers-mental-capacity-act-
000441 p.000300: 2005/)
000442 p.000300: 000898 p.000022: and Adults with Incapacity (Scotland) Act 2000 (http://www.legislation.gov.uk/asp/2000/4/contents).
000443 p.000300: 000899 p.000022:
000444 p.000300: 000900 p.000022: 1.11 Legal and data protection requirements should be met
...

...
000446 p.000300: 000902 p.000022: ROs should ensure that appropriate practical arrangements are in place to maintain the integrity and security of
000447 p.000300: ...
000448 p.000300:
000449 p.000300: ...
000450 p.000300: 001107 p.000026: able to use reasoned judgment to decide whether or not they wish to participate. There is also therefore the need to
000451 p.000300: 001108 p.000026: ensure that potential participants have the capacity to understand the consequences (and risks) of
000452 p.000300: 001109 p.000027: 27
000453 p.000300: 001110 p.000027:
000454 p.000300: 001111 p.000027: participating in order to give valid consent. ‘Capacity’ is legally defined under the terms of the MentalCapacity
000455 p.000300: Act
000456 p.000300: 001112 p.000027: 2005 and the Adults with Incapacity (Scotland) Act 2000, and any projects that involve participants who fall under
000457 p.000300: 001113 p.000027: these Acts must be reviewed by a ‘recognised’ REC operating under the GAfREC
000458 p.000300: (http://www.ukbiobank.ac.uk/ethics/) or
000459 p.000300: 001114 p.000027: Scotland ‘A’ REC. The Mental Capacity Act 2005 applies to 16-17 year olds and adults (18 years and over)
000460 p.000300: who lack
000461 p.000300: 001115 p.000027: capacity to make decisions because of an impairment, mental disorder or ‘disturbance in the functioning of the
000462 p.000300: mind and
000463 p.000300: 001116 p.000027: brain’. Guidance on the Mental Capacity Act notes that lack of capacity to make a decision may be permanent or
000464 p.000300: 001117 p.000027: temporary. It could be state-related (eg due to drug or alcohol use, or because of the person’s emotional state at
000465 p.000300: the
000466 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
000467 p.000300: provisions for
000468 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
000469 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
000470 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
000471 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
000472 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
000473 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
000474 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
000475 p.000300: Capacity
000476 p.000300: 001126 p.000027: Act 2005 and consent for research
000477 p.000300: 001127 p.000027: (http://www.wales.gov.uk/dhss/publications/health/mentalhealth/mentalcapacityact/2117019
000478 p.000300: 001128 p.000027: /mcaconsente.pdf?lang=en) and Adults with Incapacity Act 2000- Code of Practice, Part 5
000479 p.000300: 001129 p.000027: (http://www.scotland.gov.uk/Publications/2010/10/20153801/4)).
...

...
000486 p.000300: 001282 p.000031: gatekeepers where necessary to undertake the research, for example from the relevant public sector organisation to
000487 p.000300: 001283 p.000031: undertake research on public sector property.
000488 p.000300: 001284 p.000031:
000489 p.000300: 001285 p.000031: How do you obtain consent from potentially vulnerable people?
000490 p.000300: 001286 p.000031: In cases where research involves potentially vulnerable groups, for example children, older persons or adults with
000491 p.000300: 001287 p.000031: learning disabilities (for those who fall under the remit of the Mental Capacity Act 2005/ Adults with Incapacity
000492 p.000300: 001288 p.000031: (Scotland) Act 2000 see below), every effort should be made to secure actively given informed consent from individual
000493 p.000300: 001289 p.000031: participants. Passive assent, including group assent (with consent given by a gatekeeper) should be avoided wherever
000494 p.000300: 001290 p.000031: possible, and every effort should be made to develop methods of seeking consent that are appropriate to the groups
000495 p.000300: 001291 p.000031: being studied, using expert advice, support and training where necessary.
...

...
000503 p.000300: 001297 p.000031: research into teenage sexuality or alcohol use). In such circumstances, researchers will need to regard the potential
000504 p.000300: 001298 p.000031: risk to the principal participants of the research as a priority.
000505 p.000300: 001299 p.000031:
000506 p.000300: 001300 p.000031: How do you obtain consent from participants who fall under the MentalCapacity Act 2005/ Adults with Incapacity
000507 p.000300: 001301 p.000031: (Scotland) Act 2000?
000508 p.000300: 001302 p.000031: In the case of research with adults who lack capacity to make a decision under the terms of the MentalCapacity Act
000509 p.000300: 001303 p.000031: 2005 (http://www.legislation.gov.uk/ukpga/2005/9/contents) and Adults with Incapacity (Scotland) Act 2000
000510 p.000300: 001304 p.000031: (http://www.legislation.gov.uk/asp/2000/4/contents), these projects must be reviewed by a ‘recognised’ REC or
000511 p.000300: Scotland
000512 p.000300: 001305 p.000031: ‘A’ REC (Code of practice Mental Capacity Act 2005
000513 p.000300: (www.opsi.gov.uk/acts/acts2005/related/ukpgacop_20050009_en.pdf) and
000514 p.000300: 001306 p.000031: Adults with Incapacity (Scotland) Act 2000 (http://www.scotland.gov.uk/Publications/2010/10/20153801/0)).
000515 p.000300: 001307 p.000031:
000516 p.000300: 001308 p.000031: The Mental Capacity Act states that researchers should assume that a person has capacity to make a decision;
000517 p.000300: unless
000518 p.000300: 001309 p.000031: there is proof that they do not have capacity to make a specific decision, and that a potential participant must
000519 p.000300: 001310 p.000031: receive support to try to help them make their own decision. The potential participant has the right to disagree with
000520 p.000300: ...
000521 p.000300:
000522 p.000300: ...
...

...
000538 p.000300: yes,
000539 p.000300: 001490 p.000035: please give brief details as an annex)
000540 p.000300: 001491 p.000035: Will the study involve recruitment of patients or staff through the NHS or the use of NHS data or premises and/or
000541 p.000300: 001492 p.000035: equipment?
000542 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
000543 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000544 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000545 p.000300: Scotland ‘A’
000546 p.000300: 001496 p.000035: REC).
000547 p.000300: 001497 p.000035: Research that may need a full review
...

...
000552 p.000300: 001653 p.000039: review by department REC
000553 p.000300: 001654 p.000039:
000554 p.000300: 001655 p.000039:
000555 p.000300: 001656 p.000039:
000556 p.000300: 001657 p.000039: Does the research involve NHS patients, records, equipment, premises or vulnerable people under the Mental
000557 p.000300: Capacity Act
000558 p.000300: 001658 p.000039: 2005 and Adults with Incapacity (Scotland) Act 2000?
000559 p.000300: 001659 p.000039:
000560 p.000300: 001660 p.000039:
000561 p.000300: 001661 p.000039:
...

...
000563 p.000300: ...
000564 p.000300:
000565 p.000300: ...
000566 p.000300: 001816 p.000043: research), this is especially important.
000567 p.000300: 001817 p.000043:
000568 p.000300: 001818 p.000043: Valid consent: Consent is valid if it meets three conditions: participant has capacity to make a decision; the process
000569 p.000300: 001819 p.000043: is free from coercion; and the consent is informed. For consent to be ‘valid’ the participant must be capable of
000570 p.000300: 001820 p.000043: understanding all the potential risks involved. Where this may be in doubt, the Mental Capacity Act 2005 and Adults
000571 p.000300: 001821 p.000043: with Incapacity (Scotland) Act 2000 may apply (see Appendix D).
000572 p.000300: 001822 p.000043:
000573 p.000300: 001823 p.000043:
000574 p.000300: 001824 p.000043:
000575 p.000300: 001825 p.000043:
000576 p.000300: ...
000577 p.000300: ...
000578 p.000300: 001974 p.000047: https://www.gov.uk/government/publications/mental-capacity-act-code-of-practice
000579 p.000300: 001975 p.000047: • HRA Mental Capacity Act 2005-Questions and Answers
000580 p.000300: 001976 p.000047: www.hra.nhs.uk/resources/research-legislation-and-governance/questions-and-answers- mental-capacity-act-2005/
000581 p.000300: 001977 p.000047: • Department of Health Mental Capacity Act and consent for research
000582 p.000300: 001978 p.000047: http://wales.gov.uk/dhss/publications/health/mentalhealth/mentalcapacityact/2117019/m caconsente.pdf?lang=en
000583 p.000300: 001979 p.000047: • Adults with Incapacity (Scotland) Act 2000 www.legislation.gov.uk/asp/2000/4/section/10
000584 p.000300: 001980 p.000047: • Adults with Incapacity Act 2000: Code of practice (2010) For practitioners authorised to carry out medical
000585 p.000300: 001981 p.000047: treatment or research under Part 5 of the Act www.scotland.gov.uk/Publications/2010/10/20153801/0
...

...
000689 p.000300: ...
000690 p.000300: 001814 p.000043: Transparency in research ethics: The full, accurate, and open disclosure of relevant information is always important.
000691 p.000300: 001815 p.000043: Where the research involves new and innovative methodologies which raise distinctive considerations (eg online
000692 p.000300: 001816 p.000043: research), this is especially important.
000693 p.000300: 001817 p.000043:
000694 p.000300: 001818 p.000043: Valid consent: Consent is valid if it meets three conditions: participant has capacity to make a decision; the process
000695 p.000300: 001819 p.000043: is free from coercion; and the consent is informed. For consent to be ‘valid’ the participant must be capable of
000696 p.000300: 001820 p.000043: understanding all the potential risks involved. Where this may be in doubt, the Mental Capacity Act 2005 and Adults
000697 p.000300: 001821 p.000043: with Incapacity (Scotland) Act 2000 may apply (see Appendix D).
000698 p.000300: 001822 p.000043:
000699 p.000300: 001823 p.000043:
000700 p.000300: ...
...

...
000716 p.000300: 000276 p.000006: • procedures for periodic ad-hoc audit (of light-touch, full and expedited reviews by the principal REC)
000717 p.000300: ...
000718 p.000300:
000719 p.000300: ...
000720 p.000300: 000313 p.000007:
000721 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000722 p.000300: research
000723 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
000724 p.000300: 000316 p.000007:
000725 p.000300: 000317 p.000007: • (http://www.legislation.gov.uk/ukpga/2005/9/contents ). Normally this will be a REC recognised by the Secretary of
000726 p.000300: 000318 p.000007: State and Welsh Ministers and operating under the Health Research Authority (HRA) Governance Arrangements for
000727 p.000300: Research
...

...
000917 p.000300: 000309 p.000007: Research involving:
000918 p.000300: 000310 p.000007:
000919 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000920 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000921 p.000300: 000313 p.000007:
000922 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000923 p.000300: research
000924 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
000925 p.000300: 000316 p.000007:
000926 p.000300: ...
000927 p.000300:
000928 p.000300: ...
000929 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
000930 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000931 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000932 p.000300: Scotland ‘A’
000933 p.000300: 001496 p.000035: REC).
000934 p.000300: 001497 p.000035: Research that may need a full review
...

...
000948 p.000300: 000309 p.000007: Research involving:
000949 p.000300: 000310 p.000007:
000950 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
000951 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
000952 p.000300: 000313 p.000007:
000953 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
000954 p.000300: research
000955 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
000956 p.000300: 000316 p.000007:
000957 p.000300: ...
000958 p.000300:
000959 p.000300: ...
000960 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
000961 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
000962 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
000963 p.000300: Scotland ‘A’
000964 p.000300: 001496 p.000035: REC).
000965 p.000300: 001497 p.000035: Research that may need a full review
...

...
000972 p.000300:
000973 p.000300: Searching for indicator impaired:
000974 p.000300:
000975 p.000300: (return to top)
000976 p.000300: ...
000977 p.000300: 001116 p.000027: brain’. Guidance on the Mental Capacity Act notes that lack of capacity to make a decision may be permanent or
000978 p.000300: 001117 p.000027: temporary. It could be state-related (eg due to drug or alcohol use, or because of the person’s emotional state at
000979 p.000300: the
000980 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
000981 p.000300: provisions for
000982 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
000983 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
000984 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
000985 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
000986 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
000987 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
000988 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
000989 p.000300: Capacity
000990 p.000300: ...
000991 p.000300:
000992 p.000300: Searching for indicator impairment:
000993 p.000300:
...

...
000998 p.000300: 000309 p.000007: Research involving:
000999 p.000300: 000310 p.000007:
001000 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
001001 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
001002 p.000300: 000313 p.000007:
001003 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001004 p.000300: research
001005 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
001006 p.000300: 000316 p.000007:
001007 p.000300: ...
001008 p.000300:
001009 p.000300: ...
...

...
001011 p.000300: 001111 p.000027: participating in order to give valid consent. ‘Capacity’ is legally defined under the terms of the MentalCapacity
001012 p.000300: Act
001013 p.000300: 001112 p.000027: 2005 and the Adults with Incapacity (Scotland) Act 2000, and any projects that involve participants who fall under
001014 p.000300: 001113 p.000027: these Acts must be reviewed by a ‘recognised’ REC operating under the GAfREC
001015 p.000300: (http://www.ukbiobank.ac.uk/ethics/) or
001016 p.000300: 001114 p.000027: Scotland ‘A’ REC. The Mental Capacity Act 2005 applies to 16-17 year olds and adults (18 years and over)
001017 p.000300: who lack
001018 p.000300: 001115 p.000027: capacity to make decisions because of an impairment, mental disorder or ‘disturbance in the functioning of the
001019 p.000300: mind and
001020 p.000300: 001116 p.000027: brain’. Guidance on the Mental Capacity Act notes that lack of capacity to make a decision may be permanent or
001021 p.000300: 001117 p.000027: temporary. It could be state-related (eg due to drug or alcohol use, or because of the person’s emotional state at
001022 p.000300: the
001023 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
001024 p.000300: provisions for
001025 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
001026 p.000300: ...
001027 p.000300:
001028 p.000300: ...
001029 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
001030 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
001031 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
001032 p.000300: Scotland ‘A’
001033 p.000300: 001496 p.000035: REC).
001034 p.000300: 001497 p.000035: Research that may need a full review
...

...
001064 p.000300: (return to top)
001065 p.000300: ...
001066 p.000300: 001112 p.000027: 2005 and the Adults with Incapacity (Scotland) Act 2000, and any projects that involve participants who fall under
001067 p.000300: 001113 p.000027: these Acts must be reviewed by a ‘recognised’ REC operating under the GAfREC
001068 p.000300: (http://www.ukbiobank.ac.uk/ethics/) or
001069 p.000300: 001114 p.000027: Scotland ‘A’ REC. The Mental Capacity Act 2005 applies to 16-17 year olds and adults (18 years and over)
001070 p.000300: who lack
001071 p.000300: 001115 p.000027: capacity to make decisions because of an impairment, mental disorder or ‘disturbance in the functioning of the
001072 p.000300: mind and
001073 p.000300: 001116 p.000027: brain’. Guidance on the Mental Capacity Act notes that lack of capacity to make a decision may be permanent or
001074 p.000300: 001117 p.000027: temporary. It could be state-related (eg due to drug or alcohol use, or because of the person’s emotional state at
001075 p.000300: the
001076 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
001077 p.000300: provisions for
001078 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
001079 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
001080 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
001081 p.000300: ...
001082 p.000300:
001083 p.000300: ...
001084 p.000300: 001502 p.000036:
...

...
001163 p.000300: Searching for indicator health:
001164 p.000300:
001165 p.000300: (return to top)
001166 p.000300: ...
001167 p.000300: 000313 p.000007:
001168 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001169 p.000300: research
001170 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
001171 p.000300: 000316 p.000007:
001172 p.000300: 000317 p.000007: • (http://www.legislation.gov.uk/ukpga/2005/9/contents ). Normally this will be a REC recognised by the Secretary of
001173 p.000300: 000318 p.000007: State and Welsh Ministers and operating under the Health Research Authority (HRA) Governance Arrangements for
001174 p.000300: Research
...

...
001281 p.000300: research
001282 p.000300: ...
001283 p.000300:
001284 p.000300: ...
001285 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
001286 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
001287 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
001288 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
001289 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
001290 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
001291 p.000300: Capacity
001292 p.000300: 001126 p.000027: Act 2005 and consent for research
001293 p.000300: 001127 p.000027: (http://www.wales.gov.uk/dhss/publications/health/mentalhealth/mentalcapacityact/2117019
001294 p.000300: 001128 p.000027: /mcaconsente.pdf?lang=en) and Adults with Incapacity Act 2000- Code of Practice, Part 5
001295 p.000300: 001129 p.000027: (http://www.scotland.gov.uk/Publications/2010/10/20153801/4)).
...

...
001393 p.000300: 001968 p.000047: • HRA Human Tissue Act 2004-Questions and Answers
001394 p.000300: 001969 p.000047: www.hra.nhs.uk/resources/research-legislation-and-governance/questions-and-answers- the-human-tissue-act-2004/
001395 p.000300: ...
001396 p.000300:
001397 p.000300: ...
001398 p.000300: 001972 p.000047: • Mental Capacity Act 2005 www.legislation.gov.uk/ukpga/2005/9/contents
001399 p.000300: 001973 p.000047: • Office of the Public Guardian (2014) Mental Capacity Act 2005: Code of Practice
001400 p.000300: 001974 p.000047: https://www.gov.uk/government/publications/mental-capacity-act-code-of-practice
001401 p.000300: 001975 p.000047: • HRA Mental Capacity Act 2005-Questions and Answers
001402 p.000300: 001976 p.000047: www.hra.nhs.uk/resources/research-legislation-and-governance/questions-and-answers- mental-capacity-act-2005/
001403 p.000300: 001977 p.000047: • Department of Health Mental Capacity Act and consent for research
001404 p.000300: 001978 p.000047: http://wales.gov.uk/dhss/publications/health/mentalhealth/mentalcapacityact/2117019/m caconsente.pdf?lang=en
001405 p.000300: 001979 p.000047: • Adults with Incapacity (Scotland) Act 2000 www.legislation.gov.uk/asp/2000/4/section/10
001406 p.000300: 001980 p.000047: • Adults with Incapacity Act 2000: Code of practice (2010) For practitioners authorised to carry out medical
001407 p.000300: 001981 p.000047: treatment or research under Part 5 of the Act www.scotland.gov.uk/Publications/2010/10/20153801/0
...

...
001419 p.000300: 000309 p.000007: Research involving:
001420 p.000300: 000310 p.000007:
001421 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
001422 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
001423 p.000300: 000313 p.000007:
001424 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
001425 p.000300: research
001426 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
001427 p.000300: ...
001428 p.000300:
001429 p.000300: Health / Motherhood/Family
001430 p.000300: Searching for indicator family:
...

...
001474 p.000300: ...
001475 p.000300: 001314 p.000031: 2005 requires that the researcher must consult with a specified consultee as set out in the Guidance to the Act (2008).
001476 p.000300: 001315 p.000031: If possible, this should be a personal consultee. The researcher should take reasonable steps to identify someone
001477 p.000300: 001316 p.000032: 32
001478 p.000300: 001317 p.000032:
001479 p.000300: 001318 p.000032: who knows the person well who lacks capacity to make a decision, but is not a professional or paid care worker; this
001480 p.000300: 001319 p.000032: does not include family members receiving some of the person’s pension or other benefits as a payment towards
001481 p.000300: their
001482 p.000300: 001320 p.000032: share of the household expenses. The guidance states that it should be someone whom the person who lacks
001483 p.000300: capacity to
001484 p.000300: 001321 p.000032: make a decision would trust with important decisions about their welfare.
001485 p.000300: 001322 p.000032: Thus, a personal consultee could be a family member or close friend of the person.
001486 p.000300: 001323 p.000032:
001487 p.000300: 001324 p.000032: If no personal consultee can be identified, a nominated consultee should be proposed by the researcher. This is
...

...
001495 p.000300:
001496 p.000300: (return to top)
001497 p.000300: ...
001498 p.000300: 001117 p.000027: temporary. It could be state-related (eg due to drug or alcohol use, or because of the person’s emotional state at
001499 p.000300: the
001500 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
001501 p.000300: provisions for
001502 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
001503 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
001504 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
001505 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
001506 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
001507 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
001508 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
001509 p.000300: Capacity
001510 p.000300: 001126 p.000027: Act 2005 and consent for research
001511 p.000300: ...
001512 p.000300: Political / Illegal Activity
001513 p.000300: Searching for indicator illegal:
...

...
001621 p.000300: ...
001622 p.000300:
001623 p.000300: ...
001624 p.000300: 000370 p.000009: assistants working outside the UK in their own community.
001625 p.000300: 000371 p.000009:
001626 p.000300: 000372 p.000009: • Members of the public in a research capacity in research data collection, eg participatory research.
001627 p.000300: 000373 p.000009:
001628 p.000300: 000374 p.000009: • International partners or research undertaken outside of the UK where there may be issues of local practice and
001629 p.000300: 000375 p.000009: political sensitivities. In some cases partnership with a RO in the geographical area involved may prove helpful. It is
001630 p.000300: 000376 p.000009: also necessary to act in accordance with the legal and ethics review requirements in the countries included in the
...

...
002166 p.000300: 000309 p.000007: Research involving:
002167 p.000300: 000310 p.000007:
002168 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002169 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002170 p.000300: 000313 p.000007:
002171 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002172 p.000300: research
002173 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
002174 p.000300: 000316 p.000007:
002175 p.000300: ...
002176 p.000300:
002177 p.000300: ...
...

...
002285 p.000300: 001282 p.000031: gatekeepers where necessary to undertake the research, for example from the relevant public sector organisation to
002286 p.000300: 001283 p.000031: undertake research on public sector property.
002287 p.000300: 001284 p.000031:
002288 p.000300: 001285 p.000031: How do you obtain consent from potentially vulnerable people?
002289 p.000300: 001286 p.000031: In cases where research involves potentially vulnerable groups, for example children, older persons or adults with
002290 p.000300: 001287 p.000031: learning disabilities (for those who fall under the remit of the Mental Capacity Act 2005/ Adults with Incapacity
002291 p.000300: 001288 p.000031: (Scotland) Act 2000 see below), every effort should be made to secure actively given informed consent from individual
002292 p.000300: 001289 p.000031: participants. Passive assent, including group assent (with consent given by a gatekeeper) should be avoided wherever
002293 p.000300: 001290 p.000031: possible, and every effort should be made to develop methods of seeking consent that are appropriate to the groups
002294 p.000300: 001291 p.000031: being studied, using expert advice, support and training where necessary.
...

...
002305 p.000300: 001298 p.000031: risk to the principal participants of the research as a priority.
002306 p.000300: 001299 p.000031:
002307 p.000300: ...
002308 p.000300: ...
002309 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
002310 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002311 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002312 p.000300: Scotland ‘A’
002313 p.000300: 001496 p.000035: REC).
002314 p.000300: 001497 p.000035: Research that may need a full review
...

...
002402 p.000300: 000309 p.000007: Research involving:
002403 p.000300: 000310 p.000007:
002404 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002405 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002406 p.000300: 000313 p.000007:
002407 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002408 p.000300: research
002409 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
002410 p.000300: 000316 p.000007:
002411 p.000300: ...
002412 p.000300:
002413 p.000300: ...
...

...
002487 p.000300: 001282 p.000031: gatekeepers where necessary to undertake the research, for example from the relevant public sector organisation to
002488 p.000300: 001283 p.000031: undertake research on public sector property.
002489 p.000300: 001284 p.000031:
002490 p.000300: 001285 p.000031: How do you obtain consent from potentially vulnerable people?
002491 p.000300: 001286 p.000031: In cases where research involves potentially vulnerable groups, for example children, older persons or adults with
002492 p.000300: 001287 p.000031: learning disabilities (for those who fall under the remit of the Mental Capacity Act 2005/ Adults with Incapacity
002493 p.000300: 001288 p.000031: (Scotland) Act 2000 see below), every effort should be made to secure actively given informed consent from individual
002494 p.000300: 001289 p.000031: participants. Passive assent, including group assent (with consent given by a gatekeeper) should be avoided wherever
002495 p.000300: 001290 p.000031: possible, and every effort should be made to develop methods of seeking consent that are appropriate to the groups
002496 p.000300: ...
002497 p.000300:
002498 p.000300: ...
002499 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
002500 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002501 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002502 p.000300: Scotland ‘A’
002503 p.000300: 001496 p.000035: REC).
002504 p.000300: 001497 p.000035: Research that may need a full review
...

...
002530 p.000300: 001653 p.000039: review by department REC
002531 p.000300: 001654 p.000039:
002532 p.000300: 001655 p.000039:
002533 p.000300: 001656 p.000039:
002534 p.000300: 001657 p.000039: Does the research involve NHS patients, records, equipment, premises or vulnerable people under the Mental
002535 p.000300: Capacity Act
002536 p.000300: 001658 p.000039: 2005 and Adults with Incapacity (Scotland) Act 2000?
002537 p.000300: 001659 p.000039:
002538 p.000300: 001660 p.000039:
002539 p.000300: 001661 p.000039:
...

...
002729 p.000300: 002101 p.000050: pseudonyms. The raw data of each street survey will be collated in password protected computers and accessed by
002730 p.000300: the
002731 p.000300: 002102 p.000050: principal investigator and the two research assistants. The data will then be systematised and stored in two
002732 p.000300: ...
002733 p.000300:
002734 p.000300: Social / Fetus/Neonate
002735 p.000300: Searching for indicator capacity:
002736 p.000300:
002737 p.000300: (return to top)
002738 p.000300: ...
002739 p.000300: 000309 p.000007: Research involving:
002740 p.000300: 000310 p.000007:
002741 p.000300: 000311 p.000007: • Potentially vulnerable people, for example children and young people, those with a learning disability or
002742 p.000300: 000312 p.000007: cognitive impairment, or potentially vulnerable individuals in a dependent or unequal relationship.
002743 p.000300: 000313 p.000007:
002744 p.000300: 000314 p.000007: • People who lack capacity to make decisions or who during the research project come to lackcapacity. Such
002745 p.000300: research
002746 p.000300: 000315 p.000007: should be reviewed by an appropriate body operating under the Mental Capacity Act 2005
002747 p.000300: 000316 p.000007:
002748 p.000300: 000317 p.000007: • (http://www.legislation.gov.uk/ukpga/2005/9/contents ). Normally this will be a REC recognised by the Secretary of
002749 p.000300: 000318 p.000007: State and Welsh Ministers and operating under the Health Research Authority (HRA) Governance Arrangements for
002750 p.000300: Research
...

...
002755 p.000300: 000367 p.000009: humiliation, or cause more than minimal distress.
002756 p.000300: 000368 p.000009:
002757 p.000300: 000369 p.000009: • Risk to the safety of the researcher, for example researchers working in the field and international research
002758 p.000300: 000370 p.000009: assistants working outside the UK in their own community.
002759 p.000300: 000371 p.000009:
002760 p.000300: 000372 p.000009: • Members of the public in a research capacity in research data collection, eg participatory research.
002761 p.000300: 000373 p.000009:
002762 p.000300: 000374 p.000009: • International partners or research undertaken outside of the UK where there may be issues of local practice and
002763 p.000300: 000375 p.000009: political sensitivities. In some cases partnership with a RO in the geographical area involved may prove helpful. It is
002764 p.000300: 000376 p.000009: also necessary to act in accordance with the legal and ethics review requirements in the countries included in the
...

...
002769 p.000300: 000885 p.000021: arrangements-for-research-ethics-committees/)apply to research involving research participants recruited through the
002770 p.000300: 000886 p.000021: NHS or Social Care services, and such research should be reviewed by a recognised and appropriate REC (see
002771 p.000300: Appendix D).
002772 p.000300: 000887 p.000022: 22
002773 p.000300: 000888 p.000022:
002774 p.000300: 000889 p.000022: In addition, research involving adults who come under the remit of the Mental Capacity Act 2005
002775 p.000300: 000890 p.000022: (http://www.legislation.gov.uk/ukpga/2005/9/contents) or the Adults with Incapacity (Scotland) Act 2000
002776 p.000300: 000891 p.000022: (http://www.legislation.gov.uk/asp/2000/4/contents) requires review by a recognised and appropriate REC operating
002777 p.000300: under
002778 p.000300: 000892 p.000022: the GAfREC (http://www.hra.nhs.uk/resources/research-legislation-and-governance/governance-
...

...
002780 p.000300: requires
002781 p.000300: 000894 p.000022: HRA/NRES REC approval see the HRA approval decision tool (http://www.hra-decisiontools.org.uk/ethics/). The HRA
002782 p.000300: and NHS
002783 p.000300: 000895 p.000022: Scotland research ethics service (http://www.nhsresearchscotland.org.uk/226_Research+Ethics.html) also provide
002784 p.000300: guidance
002785 p.000300: 000896 p.000022: on the scope of the research provisions under the Mental Capacity Act 2005
002786 p.000300: 000897 p.000022: (http://www.hra.nhs.uk/resources/research-legislation-and-governance/questions-and- answers-mental-capacity-act-
002787 p.000300: 2005/)
002788 p.000300: 000898 p.000022: and Adults with Incapacity (Scotland) Act 2000 (http://www.legislation.gov.uk/asp/2000/4/contents).
002789 p.000300: 000899 p.000022:
002790 p.000300: 000900 p.000022: 1.11 Legal and data protection requirements should be met
...

...
002795 p.000300: 001103 p.000026:
002796 p.000300: 001104 p.000026: How do you inform participants of potential risks?
002797 p.000300: 001105 p.000026: Once potential risks have been identified, researchers should ensure that these are discussed with research
002798 p.000300: 001106 p.000026: participants in order to secure valid consent. When presented with sufficient information individuals will usually be
002799 p.000300: 001107 p.000026: able to use reasoned judgment to decide whether or not they wish to participate. There is also therefore the need to
002800 p.000300: 001108 p.000026: ensure that potential participants have the capacity to understand the consequences (and risks) of
002801 p.000300: 001109 p.000027: 27
002802 p.000300: 001110 p.000027:
002803 p.000300: 001111 p.000027: participating in order to give valid consent. ‘Capacity’ is legally defined under the terms of the MentalCapacity
002804 p.000300: Act
002805 p.000300: 001112 p.000027: 2005 and the Adults with Incapacity (Scotland) Act 2000, and any projects that involve participants who fall under
002806 p.000300: 001113 p.000027: these Acts must be reviewed by a ‘recognised’ REC operating under the GAfREC
002807 p.000300: (http://www.ukbiobank.ac.uk/ethics/) or
002808 p.000300: 001114 p.000027: Scotland ‘A’ REC. The Mental Capacity Act 2005 applies to 16-17 year olds and adults (18 years and over)
002809 p.000300: who lack
002810 p.000300: 001115 p.000027: capacity to make decisions because of an impairment, mental disorder or ‘disturbance in the functioning of the
002811 p.000300: mind and
002812 p.000300: 001116 p.000027: brain’. Guidance on the Mental Capacity Act notes that lack of capacity to make a decision may be permanent or
002813 p.000300: 001117 p.000027: temporary. It could be state-related (eg due to drug or alcohol use, or because of the person’s emotional state at
002814 p.000300: the
002815 p.000300: 001118 p.000027: time). ‘Intrusive’ research involving people without capacity to consent should comply with the specific
002816 p.000300: provisions for
002817 p.000300: 001119 p.000027: research (Sections 30-33 of the Mental Capacity Act 2005) in order to be lawful. Intrusive procedures are defined as
002818 p.000300: 001120 p.000027: the ones requiring consent in law, including the use of personal information. Code of Practice under the Adults with
002819 p.000300: 001121 p.000027: Incapacity Act clarifies that ‘an adult does not have impaired capacity simply by virtue of having an addiction,
002820 p.000300: 001122 p.000027: psychotic illness or learning difficulties and disabilities’ (p.6). The Scottish Act states that the wishes of the
002821 p.000300: 001123 p.000027: individual should be taken into account and any intervention should benefit the individual (Section 51 of the Adults
002822 p.000300: 001124 p.000027: with Incapacity (Scotland) Act 2000). The key point for both Acts is that valid consent can only be secured if the
002823 p.000300: 001125 p.000027: participant has capacity to make a decision at the timeconsent is sought. (see Department of Health, Mental
002824 p.000300: Capacity
002825 p.000300: 001126 p.000027: Act 2005 and consent for research
002826 p.000300: 001127 p.000027: (http://www.wales.gov.uk/dhss/publications/health/mentalhealth/mentalcapacityact/2117019
002827 p.000300: 001128 p.000027: /mcaconsente.pdf?lang=en) and Adults with Incapacity Act 2000- Code of Practice, Part 5
002828 p.000300: 001129 p.000027: (http://www.scotland.gov.uk/Publications/2010/10/20153801/4)).
...

...
002832 p.000300: 001282 p.000031: gatekeepers where necessary to undertake the research, for example from the relevant public sector organisation to
002833 p.000300: 001283 p.000031: undertake research on public sector property.
002834 p.000300: 001284 p.000031:
002835 p.000300: 001285 p.000031: How do you obtain consent from potentially vulnerable people?
002836 p.000300: 001286 p.000031: In cases where research involves potentially vulnerable groups, for example children, older persons or adults with
002837 p.000300: 001287 p.000031: learning disabilities (for those who fall under the remit of the Mental Capacity Act 2005/ Adults with Incapacity
002838 p.000300: 001288 p.000031: (Scotland) Act 2000 see below), every effort should be made to secure actively given informed consent from individual
002839 p.000300: 001289 p.000031: participants. Passive assent, including group assent (with consent given by a gatekeeper) should be avoided wherever
002840 p.000300: 001290 p.000031: possible, and every effort should be made to develop methods of seeking consent that are appropriate to the groups
002841 p.000300: 001291 p.000031: being studied, using expert advice, support and training where necessary.
...

...
002849 p.000300: 001297 p.000031: research into teenage sexuality or alcohol use). In such circumstances, researchers will need to regard the potential
002850 p.000300: 001298 p.000031: risk to the principal participants of the research as a priority.
002851 p.000300: 001299 p.000031:
002852 p.000300: 001300 p.000031: How do you obtain consent from participants who fall under the MentalCapacity Act 2005/ Adults with Incapacity
002853 p.000300: 001301 p.000031: (Scotland) Act 2000?
002854 p.000300: 001302 p.000031: In the case of research with adults who lack capacity to make a decision under the terms of the MentalCapacity Act
002855 p.000300: 001303 p.000031: 2005 (http://www.legislation.gov.uk/ukpga/2005/9/contents) and Adults with Incapacity (Scotland) Act 2000
002856 p.000300: 001304 p.000031: (http://www.legislation.gov.uk/asp/2000/4/contents), these projects must be reviewed by a ‘recognised’ REC or
002857 p.000300: Scotland
002858 p.000300: 001305 p.000031: ‘A’ REC (Code of practice Mental Capacity Act 2005
002859 p.000300: (www.opsi.gov.uk/acts/acts2005/related/ukpgacop_20050009_en.pdf) and
002860 p.000300: 001306 p.000031: Adults with Incapacity (Scotland) Act 2000 (http://www.scotland.gov.uk/Publications/2010/10/20153801/0)).
002861 p.000300: 001307 p.000031:
002862 p.000300: 001308 p.000031: The Mental Capacity Act states that researchers should assume that a person has capacity to make a decision;
002863 p.000300: unless
002864 p.000300: 001309 p.000031: there is proof that they do not have capacity to make a specific decision, and that a potential participant must
002865 p.000300: 001310 p.000031: receive support to try to help them make their own decision. The potential participant has the right to disagree with
002866 p.000300: 001311 p.000031: the decisions that others (such as relatives or carers) might make.
002867 p.000300: 001312 p.000031:
002868 p.000300: 001313 p.000031: If it is established that an adult does not have the capacity to decide whether to participate, the MentalCapacity Act
002869 p.000300: 001314 p.000031: 2005 requires that the researcher must consult with a specified consultee as set out in the Guidance to the Act (2008).
002870 p.000300: 001315 p.000031: If possible, this should be a personal consultee. The researcher should take reasonable steps to identify someone
002871 p.000300: 001316 p.000032: 32
002872 p.000300: 001317 p.000032:
002873 p.000300: 001318 p.000032: who knows the person well who lacks capacity to make a decision, but is not a professional or paid care worker; this
002874 p.000300: 001319 p.000032: does not include family members receiving some of the person’s pension or other benefits as a payment towards
002875 p.000300: their
002876 p.000300: 001320 p.000032: share of the household expenses. The guidance states that it should be someone whom the person who lacks
002877 p.000300: capacity to
002878 p.000300: 001321 p.000032: make a decision would trust with important decisions about their welfare.
002879 p.000300: 001322 p.000032: Thus, a personal consultee could be a family member or close friend of the person.
002880 p.000300: 001323 p.000032:
002881 p.000300: 001324 p.000032: If no personal consultee can be identified, a nominated consultee should be proposed by the researcher. This is
...

...
002887 p.000300: yes,
002888 p.000300: 001490 p.000035: please give brief details as an annex)
002889 p.000300: 001491 p.000035: Will the study involve recruitment of patients or staff through the NHS or the use of NHS data or premises and/or
002890 p.000300: 001492 p.000035: equipment?
002891 p.000300: 001493 p.000035: Does the study involve participants age 16 or over who are unable to give informedconsent? (eg people with learning
002892 p.000300: 001494 p.000035: disabilities: see Mental Capacity Act 2005/ Adults with Incapacity (Scotland) Act 2000. All research that falls under
002893 p.000300: 001495 p.000035: the auspices MCA/AWI should be reviewed by a recognised and appropriate REC operating under GAfREC or
002894 p.000300: Scotland ‘A’
002895 p.000300: 001496 p.000035: REC).
002896 p.000300: 001497 p.000035: Research that may need a full review
...

...
002901 p.000300: 001515 p.000036: Will the study involve prolonged or repetitive testing?
002902 p.000300: 001516 p.000036: Will the research involve administrative or secure data that requires permission from the appropriate authorities
002903 p.000300: 001517 p.000036: before use?
002904 p.000300: 001518 p.000036: Is there a possibility that the safety of the researcher may be in question? (eg lone working in international
002905 p.000300: 001519 p.000036: research)
002906 p.000300: 001520 p.000036: Does the research involve members of the public in a research capacity (participant research)?
002907 p.000300: 001521 p.000036: Will the research take place outside the UK?
002908 p.000300: 001522 p.000036: Will the research involve internet participants or other visual/vocal methods where participants may be identified?
002909 p.000300: 001523 p.000036: Will research involve the sharing of data or confidential information beyond the initial consent given?
002910 p.000300: 001524 p.000036: Will financial inducements (other than reasonable expenses and compensation for time) be offered to participants?
...

...
002915 p.000300: 001653 p.000039: review by department REC
002916 p.000300: 001654 p.000039:
002917 p.000300: 001655 p.000039:
002918 p.000300: 001656 p.000039:
002919 p.000300: 001657 p.000039: Does the research involve NHS patients, records, equipment, premises or vulnerable people under the Mental
002920 p.000300: Capacity Act
002921 p.000300: 001658 p.000039: 2005 and Adults with Incapacity (Scotland) Act 2000?
002922 p.000300: 001659 p.000039:
002923 p.000300: 001660 p.000039:
002924 p.000300: 001661 p.000039:
...

...
002928 p.000300: 001813 p.000043:
002929 p.000300: 001814 p.000043: Transparency in research ethics: The full, accurate, and open disclosure of relevant information is always important.
002930 p.000300: 001815 p.000043: Where the research involves new and innovative methodologies which raise distinctive considerations (eg online
002931 p.000300: 001816 p.000043: research), this is especially important.
002932 p.000300: 001817 p.000043:
002933 p.000300: 001818 p.000043: Valid consent: Consent is valid if it meets three conditions: participant has capacity to make a decision; the process
002934 p.000300: 001819 p.000043: is free from coercion; and the consent is informed. For consent to be ‘valid’ the participant must be capable of
002935 p.000300: 001820 p.000043: understanding all the potential risks involved. Where this may be in doubt, the Mental Capacity Act 2005 and Adults
002936 p.000300: 001821 p.000043: with Incapacity (Scotland) Act 2000 may apply (see Appendix D).
002937 p.000300: 001822 p.000043:
002938 p.000300: 001823 p.000043:
002939 p.000300: 001824 p.000043:
...

...
002944 p.000300: 001968 p.000047: • HRA Human Tissue Act 2004-Questions and Answers
002945 p.000300: 001969 p.000047: www.hra.nhs.uk/resources/research-legislation-and-governance/questions-and-answers- the-human-tissue-act-2004/
002946 p.000300: 001970 p.000047: • Human Tissue (Scotland) Act 2006 www.legislation.gov.uk/asp/2006/4/introduction
002947 p.000300: 001971 p.000047: • The Medicines for Human Use (Clinical Trials) Regulations 2004
002948 p.000300: www.legislation.gov.uk/uksi/2004/1031/contents/made
002949 p.000300: 001972 p.000047: • Mental Capacity Act 2005 www.legislation.gov.uk/ukpga/2005/9/contents
002950 p.000300: 001973 p.000047: • Office of the Public Guardian (2014) Mental Capacity Act 2005: Code of Practice
002951 p.000300: 001974 p.000047: https://www.gov.uk/government/publications/mental-capacity-act-code-of-practice
002952 p.000300: 001975 p.000047: • HRA Mental Capacity Act 2005-Questions and Answers
002953 p.000300: 001976 p.000047: www.hra.nhs.uk/resources/research-legislation-and-governance/questions-and-answers- mental-capacity-act-2005/
002954 p.000300: 001977 p.000047: • Department of Health Mental Capacity Act and consent for research
002955 p.000300: 001978 p.000047: http://wales.gov.uk/dhss/publications/health/mentalhealth/mentalcapacityact/2117019/m caconsente.pdf?lang=en
002956 p.000300: 001979 p.000047: • Adults with Incapacity (Scotland) Act 2000 www.legislation.gov.uk/asp/2000/4/section/10
002957 p.000300: 001980 p.000047: • Adults with Incapacity Act 2000: Code of practice (2010) For practitioners authorised to carry out medical
002958 p.000300: 001981 p.000047: treatment or research under Part 5 of the Act www.scotland.gov.uk/Publications/2010/10/20153801/0
...

...
003358 p.000300: 000045 p.000001: researchers, research teams (including teams with non- academic researchers) and research participants.
003359 p.000300: 000046 p.000001:
003360 p.000300: ...
003361 p.000300:
003362 p.000300: ...
003363 p.000300: 000372 p.000009: • Members of the public in a research capacity in research data collection, eg participatory research.
003364 p.000300: 000373 p.000009:
003365 p.000300: 000374 p.000009: • International partners or research undertaken outside of the UK where there may be issues of local practice and
003366 p.000300: 000375 p.000009: political sensitivities. In some cases partnership with a RO in the geographical area involved may prove helpful. It is
003367 p.000300: 000376 p.000009: also necessary to act in accordance with the legal and ethics review requirements in the countries included in the
...

...
003484 p.000300: 000885 p.000021: arrangements-for-research-ethics-committees/)apply to research involving research participants recruited through the
003485 p.000300: 000886 p.000021: NHS or Social Care services, and such research should be reviewed by a recognised and appropriate REC (see
003486 p.000300: Appendix D).
003487 p.000300: 000887 p.000022: 22
003488 p.000300: 000888 p.000022:
003489 p.000300: 000889 p.000022: In addition, research involving adults who come under the remit of the Mental Capacity Act 2005
003490 p.000300: 000890 p.000022: (http://www.legislation.gov.uk/ukpga/2005/9/contents) or the Adults with Incapacity (Scotland) Act 2000
003491 p.000300: ...
003492 p.000300:
003493 p.000300: ...
...

...
004033 p.000300: access Access to Social Goods
004034 p.000300: age Diminished Autonomy
004035 p.000300: authority Relationship to Authority
004036 p.000300: autonomy Impaired Autonomy
004037 p.000300: cadavers Cadavers
004038 p.000300: capacity Fetus/Neonate
004039 p.000300: child Child
004040 p.000300: children Child
004041 p.000300: coercion Presence of Coercion
004042 p.000300: cognitive Cognitive Impairment
...

...
004185 p.000300: Social Child vulnerable
004186 p.000300: Social Educational education
004187 p.000300: Social Educational educational
004188 p.000300: Social Elderly elderly
004189 p.000300: Social Ethnicity ethnic
004190 p.000300: Social Fetus/Neonate capacity
004191 p.000300: Social Gender gender
004192 p.000300: Social In Nursing Home nursing home
004193 p.000300: Social Incarcerated restricted
004194 p.000300: Social LGBTQ+ Status physically
...

Searching for indicator fetus:

(return to top)
...
002729 p.000300: 002101 p.000050: pseudonyms. The raw data of each street survey will be collated in password protected computers and accessed by
002730 p.000300: the
002731 p.000300: 002102 p.000050: principal investigator and the two research assistants. The data will then be systematised and stored in two
002732 p.000300: ...
002733 p.000300:
002734 p.000300: Social / Fetus/Neonate
002735 p.000300: Searching for indicator capacity:
002736 p.000300:
002737 p.000300: (return to top)
002738 p.000300: ...
002739 p.000300: 000309 p.000007: Research involving:
...

...
004033 p.000300: access Access to Social Goods
004034 p.000300: age Diminished Autonomy
004035 p.000300: authority Relationship to Authority
004036 p.000300: autonomy Impaired Autonomy
004037 p.000300: cadavers Cadavers
004038 p.000300: capacity Fetus/Neonate
004039 p.000300: child Child
004040 p.000300: children Child
004041 p.000300: coercion Presence of Coercion
004042 p.000300: cognitive Cognitive Impairment
...

...
004185 p.000300: Social Child vulnerable
004186 p.000300: Social Educational education
004187 p.000300: Social Educational educational
004188 p.000300: Social Elderly elderly
004189 p.000300: Social Ethnicity ethnic
004190 p.000300: Social Fetus/Neonate capacity
004191 p.000300: Social Gender gender
004192 p.000300: Social In Nursing Home nursing home
004193 p.000300: Social Incarcerated restricted
004194 p.000300: Social LGBTQ+ Status physically
...

Social / Gender

Searching for indicator aids:

(return to top)
...
001138 p.000300: 001219 p.000029: Research participants, however, may be given small monetary reimbursement for their time and expenses involved.
001139 p.000300: Payment
001140 p.000300: 001220 p.000029: should not override the principles of freely given and fully informed consent. Participants should know before they
001141 p.000300: ...
001142 p.000300:
001143 p.000300: Health / HIV/AIDS
001144 p.000300: Searching for indicator hiv:
001145 p.000300:
001146 p.000300: (return to top)
001147 p.000300: ...
001148 p.000300: 001078 p.000026: generate. This is especially pertinent in the context of health-related research. But, in addition, social science
...

...
004053 p.000300: educational Educational
004054 p.000300: elderly Elderly
004055 p.000300: engaged Marital Status
004056 p.000300: ethnic Ethnicity
004057 p.000300: family Motherhood/Family
004058 p.000300: gender Gender
004059 p.000300: health Health
004060 p.000300: hiv HIV/AIDS
004061 p.000300: home Property Ownership
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
...

...
004167 p.000300: Health Cognitive Impairment impaired
004168 p.000300: Health Cognitive Impairment impairment
004169 p.000300: Health Drug Dependence dependence
004170 p.000300: Health Drug Usage drug
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
004174 p.000300: Health Mentally Disabled disability
004175 p.000300: Health Motherhood/Family family
004176 p.000300: Health Physically Ill illness
...

Searching for indicator gender:

(return to top)
...
001180 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001181 p.000300: 000323 p.000008: 8
001182 p.000300: 000324 p.000008:
001183 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001184 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001185 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001186 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001187 p.000300: 000329 p.000008:
001188 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001189 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
001434 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001435 p.000300: 000323 p.000008: 8
001436 p.000300: 000324 p.000008:
001437 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001438 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001439 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001440 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001441 p.000300: 000329 p.000008:
001442 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001443 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
001519 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001520 p.000300: 000323 p.000008: 8
001521 p.000300: 000324 p.000008:
001522 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001523 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001524 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001525 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001526 p.000300: 000329 p.000008:
001527 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001528 p.000300: ...
...

...
001612 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001613 p.000300: 000323 p.000008: 8
001614 p.000300: 000324 p.000008:
001615 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001616 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001617 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001618 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001619 p.000300: 000329 p.000008:
001620 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001621 p.000300: ...
...

...
002660 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
002661 p.000300: 000323 p.000008: 8
002662 p.000300: 000324 p.000008:
002663 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
002664 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
002665 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
002666 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
002667 p.000300: 000329 p.000008:
002668 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
002669 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
002955 p.000300: 001978 p.000047: http://wales.gov.uk/dhss/publications/health/mentalhealth/mentalcapacityact/2117019/m caconsente.pdf?lang=en
002956 p.000300: 001979 p.000047: • Adults with Incapacity (Scotland) Act 2000 www.legislation.gov.uk/asp/2000/4/section/10
002957 p.000300: 001980 p.000047: • Adults with Incapacity Act 2000: Code of practice (2010) For practitioners authorised to carry out medical
002958 p.000300: 001981 p.000047: treatment or research under Part 5 of the Act www.scotland.gov.uk/Publications/2010/10/20153801/0
002959 p.000300: ...
002960 p.000300: Social / Gender
002961 p.000300: Searching for indicator gender:
002962 p.000300:
002963 p.000300: (return to top)
002964 p.000300: ...
002965 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
002966 p.000300: 000323 p.000008: 8
002967 p.000300: 000324 p.000008:
002968 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
002969 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
002970 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
002971 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
002972 p.000300: 000329 p.000008:
002973 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
002974 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
003032 p.000300:
003033 p.000300: (return to top)
003034 p.000300: ...
003035 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003036 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003037 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003038 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003039 p.000300: 000329 p.000008:
003040 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003041 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
003963 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
003964 p.000300: 000323 p.000008: 8
003965 p.000300: 000324 p.000008:
003966 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003967 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003968 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003969 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003970 p.000300: 000329 p.000008:
003971 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003972 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
003980 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
003981 p.000300: 000323 p.000008: 8
003982 p.000300: 000324 p.000008:
003983 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003984 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003985 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003986 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003987 p.000300: 000329 p.000008:
003988 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003989 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
004053 p.000300: educational Educational
004054 p.000300: elderly Elderly
004055 p.000300: engaged Marital Status
004056 p.000300: ethnic Ethnicity
004057 p.000300: family Motherhood/Family
004058 p.000300: gender Gender
004059 p.000300: health Health
004060 p.000300: hiv HIV/AIDS
004061 p.000300: home Property Ownership
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
...

...
004186 p.000300: Social Educational education
004187 p.000300: Social Educational educational
004188 p.000300: Social Elderly elderly
004189 p.000300: Social Ethnicity ethnic
004190 p.000300: Social Fetus/Neonate capacity
004191 p.000300: Social Gender gender
004192 p.000300: Social In Nursing Home nursing home
004193 p.000300: Social Incarcerated restricted
004194 p.000300: Social LGBTQ+ Status physically
004195 p.000300: Social Linguistic Proficiency deceased
...

Social / Homeless Persons

Searching for indicator neonate:

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...
002729 p.000300: 002101 p.000050: pseudonyms. The raw data of each street survey will be collated in password protected computers and accessed by
002730 p.000300: the
002731 p.000300: 002102 p.000050: principal investigator and the two research assistants. The data will then be systematised and stored in two
002732 p.000300: ...
002733 p.000300:
002734 p.000300: Social / Fetus/Neonate
002735 p.000300: Searching for indicator capacity:
002736 p.000300:
002737 p.000300: (return to top)
002738 p.000300: ...
...

...
004033 p.000300: access Access to Social Goods
004034 p.000300: age Diminished Autonomy
004035 p.000300: authority Relationship to Authority
004036 p.000300: autonomy Impaired Autonomy
004037 p.000300: cadavers Cadavers
004038 p.000300: capacity Fetus/Neonate
004039 p.000300: child Child
004040 p.000300: children Child
004041 p.000300: coercion Presence of Coercion
004042 p.000300: cognitive Cognitive Impairment
...

...
004185 p.000300: Social Child vulnerable
004186 p.000300: Social Educational education
004187 p.000300: Social Educational educational
004188 p.000300: Social Elderly elderly
004189 p.000300: Social Ethnicity ethnic
004190 p.000300: Social Fetus/Neonate capacity
004191 p.000300: Social Gender gender
004192 p.000300: Social In Nursing Home nursing home
004193 p.000300: Social Incarcerated restricted
004194 p.000300: Social LGBTQ+ Status physically
...

Social / In Nursing Home

Searching for indicator nursing home:

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...
001081 p.000300: ...
001082 p.000300:
001083 p.000300: ...
001084 p.000300: 001502 p.000036:
001085 p.000300: 001503 p.000036: access to the groups or individuals to be recruited? (eg employees, students at school, members of self- help group,
001086 p.000300: 001504 p.000036: residents of nursing home?)
001087 p.000300: 001505 p.000036: Will it be necessary for participants to take part in the study without their knowledge and consent at the time? (eg
001088 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
001089 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
001090 p.000300: 001508 p.000036: lives)
...

...
001989 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
001990 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
001991 p.000300: 001501 p.000036: 36
001992 p.000300: 001502 p.000036:
001993 p.000300: 001503 p.000036: access to the groups or individuals to be recruited? (eg employees, students at school, members of self- help group,
001994 p.000300: 001504 p.000036: residents of nursing home?)
001995 p.000300: 001505 p.000036: Will it be necessary for participants to take part in the study without their knowledge and consent at the time? (eg
001996 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
001997 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
001998 p.000300: ...
...

...
002972 p.000300: 000329 p.000008:
002973 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
002974 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
002975 p.000300: ...
002976 p.000300:
002977 p.000300: Social / In Nursing Home
002978 p.000300: Searching for indicator nursing home:
002979 p.000300:
002980 p.000300: (return to top)
002981 p.000300: ...
002982 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
002983 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
002984 p.000300: 001501 p.000036: 36
002985 p.000300: 001502 p.000036:
002986 p.000300: 001503 p.000036: access to the groups or individuals to be recruited? (eg employees, students at school, members of self- help group,
002987 p.000300: 001504 p.000036: residents of nursing home?)
002988 p.000300: 001505 p.000036: Will it be necessary for participants to take part in the study without their knowledge and consent at the time? (eg
002989 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
002990 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
002991 p.000300: 001508 p.000036: lives)
...

...
003268 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
003269 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
003270 p.000300: 001501 p.000036: 36
003271 p.000300: 001502 p.000036:
003272 p.000300: 001503 p.000036: access to the groups or individuals to be recruited? (eg employees, students at school, members of self- help group,
003273 p.000300: 001504 p.000036: residents of nursing home?)
003274 p.000300: 001505 p.000036: Will it be necessary for participants to take part in the study without their knowledge and consent at the time? (eg
003275 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
003276 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
003277 p.000300: 001508 p.000036: lives)
...

...
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
004070 p.000300: minor Youth/Minors
004071 p.000300: nursing home In Nursing Home
004072 p.000300: officer Police Officer
004073 p.000300: Philosophical Differences/Difference of
004074 p.000300: opinion
004075 p.000300: Opinion
...

...
004187 p.000300: Social Educational educational
004188 p.000300: Social Elderly elderly
004189 p.000300: Social Ethnicity ethnic
004190 p.000300: Social Fetus/Neonate capacity
004191 p.000300: Social Gender gender
004192 p.000300: Social In Nursing Home nursing home
004193 p.000300: Social Incarcerated restricted
004194 p.000300: Social LGBTQ+ Status physically
004195 p.000300: Social Linguistic Proficiency deceased
004196 p.000300: Social Literacy literate
...

Social / Incarcerated

Searching for indicator incarcerated:

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...
002989 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
002990 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
002991 p.000300: 001508 p.000036: lives)
002992 p.000300: ...
002993 p.000300:
002994 p.000300: Social / Incarcerated
002995 p.000300: Searching for indicator restricted:
002996 p.000300:
002997 p.000300: (return to top)
002998 p.000300: ...
002999 p.000300: 001749 p.000041: receive a full review at short notice. An expedited review is carried out by one or more members of a Research Ethics
...

...
004077 p.000300: physically LGBTQ+ Status
004078 p.000300: political Political
004079 p.000300: poor Economic/Poverty
004080 p.000300: racial Racial Minority
004081 p.000300: religious Religion
004082 p.000300: restricted Incarcerated
004083 p.000300: single Marital Status
004084 p.000300:
004085 p.000300: social Social
004086 p.000300: special Religion
...

...
004188 p.000300: Social Elderly elderly
004189 p.000300: Social Ethnicity ethnic
004190 p.000300: Social Fetus/Neonate capacity
004191 p.000300: Social Gender gender
004192 p.000300: Social In Nursing Home nursing home
004193 p.000300: Social Incarcerated restricted
004194 p.000300: Social LGBTQ+ Status physically
004195 p.000300: Social Linguistic Proficiency deceased
004196 p.000300: Social Literacy literate
004197 p.000300: Social Marital Status engaged
...

Searching for indicator restricted:

(return to top)
...
000672 p.000300: ...
000673 p.000300:
000674 p.000300: ...
000675 p.000300: 001753 p.000041: died (cadavers, human remains and body parts), embryos and fetuses, human tissue and bodily fluids, and human
000676 p.000300: data and
000677 p.000300: 001754 p.000041: records (such as, but not restricted to medical, genetic, financial, personnel, criminal or administrative records and
000678 p.000300: 001755 p.000041: test results including scholastic achievements).
000679 p.000300: 001756 p.000041:
000680 p.000300: 001757 p.000041: Freely-given informed consent: Informed consent entails giving sufficient information about the research and ensuring
000681 p.000300: 001758 p.000041: that there is no explicit or implicit coercion so that prospective participants can make an informed and free decision
...

...
000899 p.000300: 001751 p.000041:
000900 p.000300: 001752 p.000041: Human participants: Human participants are defined as including living human beings, human beings who have
000901 p.000300: recently
000902 p.000300: 001753 p.000041: died (cadavers, human remains and body parts), embryos and fetuses, human tissue and bodily fluids, and human
000903 p.000300: data and
000904 p.000300: 001754 p.000041: records (such as, but not restricted to medical, genetic, financial, personnel, criminal or administrative records and
000905 p.000300: 001755 p.000041: test results including scholastic achievements).
000906 p.000300: 001756 p.000041:
000907 p.000300: 001757 p.000041: Freely-given informed consent: Informed consent entails giving sufficient information about the research and ensuring
000908 p.000300: ...
...

...
002989 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
002990 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
002991 p.000300: 001508 p.000036: lives)
002992 p.000300: ...
002993 p.000300:
002994 p.000300: Social / Incarcerated
002995 p.000300: Searching for indicator restricted:
002996 p.000300:
002997 p.000300: (return to top)
002998 p.000300: ...
002999 p.000300: 001749 p.000041: receive a full review at short notice. An expedited review is carried out by one or more members of a Research Ethics
...

...
003001 p.000300: 001751 p.000041:
003002 p.000300: 001752 p.000041: Human participants: Human participants are defined as including living human beings, human beings who have
003003 p.000300: recently
003004 p.000300: 001753 p.000041: died (cadavers, human remains and body parts), embryos and fetuses, human tissue and bodily fluids, and human
003005 p.000300: data and
003006 p.000300: 001754 p.000041: records (such as, but not restricted to medical, genetic, financial, personnel, criminal or administrative records and
003007 p.000300: 001755 p.000041: test results including scholastic achievements).
003008 p.000300: 001756 p.000041:
003009 p.000300: 001757 p.000041: Freely-given informed consent: Informed consent entails giving sufficient information about the research and ensuring
003010 p.000300: 001758 p.000041: that there is no explicit or implicit coercion so that prospective participants can make an informed and free decision
...

...
004077 p.000300: physically LGBTQ+ Status
004078 p.000300: political Political
004079 p.000300: poor Economic/Poverty
004080 p.000300: racial Racial Minority
004081 p.000300: religious Religion
004082 p.000300: restricted Incarcerated
004083 p.000300: single Marital Status
004084 p.000300:
004085 p.000300: social Social
004086 p.000300: special Religion
...

...
004188 p.000300: Social Elderly elderly
004189 p.000300: Social Ethnicity ethnic
004190 p.000300: Social Fetus/Neonate capacity
004191 p.000300: Social Gender gender
004192 p.000300: Social In Nursing Home nursing home
004193 p.000300: Social Incarcerated restricted
004194 p.000300: Social LGBTQ+ Status physically
004195 p.000300: Social Linguistic Proficiency deceased
004196 p.000300: Social Literacy literate
004197 p.000300: Social Marital Status engaged
...

Social / LGBTQ+ Status

Searching for indicator lgbtq+:

(return to top)
...
003008 p.000300: 001756 p.000041:
003009 p.000300: 001757 p.000041: Freely-given informed consent: Informed consent entails giving sufficient information about the research and ensuring
003010 p.000300: 001758 p.000041: that there is no explicit or implicit coercion so that prospective participants can make an informed and free decision
003011 p.000300: ...
003012 p.000300:
003013 p.000300: Social / LGBTQ+ Status
003014 p.000300: Searching for indicator physically:
003015 p.000300:
003016 p.000300: (return to top)
003017 p.000300: ...
003018 p.000300: 001365 p.000033: care staff who are recruited as research participants by virtue of their professional role may require NHS REC review
...

...
004072 p.000300: officer Police Officer
004073 p.000300: Philosophical Differences/Difference of
004074 p.000300: opinion
004075 p.000300: Opinion
004076 p.000300: party Political
004077 p.000300: physically LGBTQ+ Status
004078 p.000300: political Political
004079 p.000300: poor Economic/Poverty
004080 p.000300: racial Racial Minority
004081 p.000300: religious Religion
...

...
004189 p.000300: Social Ethnicity ethnic
004190 p.000300: Social Fetus/Neonate capacity
004191 p.000300: Social Gender gender
004192 p.000300: Social In Nursing Home nursing home
004193 p.000300: Social Incarcerated restricted
004194 p.000300: Social LGBTQ+ Status physically
004195 p.000300: Social Linguistic Proficiency deceased
004196 p.000300: Social Literacy literate
004197 p.000300: Social Marital Status engaged
004198 p.000300: Social Marital Status single
...

Searching for indicator physically:

(return to top)
...
001314 p.000300:
001315 p.000300: ...
001316 p.000300: 001367 p.000033: (http://www.hra-decisiontools.org.uk/ethics/).
001317 p.000300: 001368 p.000033:
001318 p.000300: 001369 p.000033: It is expected that a light-touch review by a REC will be able to provide an effective filter for projects that might
001319 p.000300: 001370 p.000033: otherwise have been inappropriately sent to an NHS REC, including those that while involving a physically invasive
001320 p.000300: 001371 p.000033: technique do not do so for clinical purposes. Similarly, the framework provides for review by a REC of large-scale,
001321 p.000300: 001372 p.000033: longitudinal social science studies that may seek information relating to respondents’ personalhealth profile.
001322 p.000300: 001373 p.000033:
001323 p.000300: 001374 p.000033: 2.4 Internet-mediated research
...

...
001488 p.000300: someone
001489 p.000300: 001325 p.000032: who is prepared to be consulted by the researcher, but has no connection with the research project - for example,
001490 p.000300: 001326 p.000032: someone from a relevant organisation (such as a local church or charity); but they could also be a professional care
001491 p.000300: ...
001492 p.000300:
001493 p.000300: Health / Physically Ill
001494 p.000300: Searching for indicator illness:
001495 p.000300:
001496 p.000300: (return to top)
001497 p.000300: ...
...

...
003008 p.000300: 001756 p.000041:
003009 p.000300: 001757 p.000041: Freely-given informed consent: Informed consent entails giving sufficient information about the research and ensuring
003010 p.000300: 001758 p.000041: that there is no explicit or implicit coercion so that prospective participants can make an informed and free decision
003011 p.000300: ...
003012 p.000300:
003013 p.000300: Social / LGBTQ+ Status
003014 p.000300: Searching for indicator physically:
003015 p.000300:
003016 p.000300: (return to top)
003017 p.000300: ...
003018 p.000300: 001365 p.000033: care staff who are recruited as research participants by virtue of their professional role may require NHS REC review
003019 p.000300: 001366 p.000033: only if they raise significant ethical issues. Please see the HRA approval decision tool
003020 p.000300: 001367 p.000033: (http://www.hra-decisiontools.org.uk/ethics/).
003021 p.000300: 001368 p.000033:
003022 p.000300: 001369 p.000033: It is expected that a light-touch review by a REC will be able to provide an effective filter for projects that might
003023 p.000300: 001370 p.000033: otherwise have been inappropriately sent to an NHS REC, including those that while involving a physically invasive
003024 p.000300: 001371 p.000033: technique do not do so for clinical purposes. Similarly, the framework provides for review by a REC of large-scale,
003025 p.000300: 001372 p.000033: longitudinal social science studies that may seek information relating to respondents’ personalhealth profile.
003026 p.000300: 001373 p.000033:
003027 p.000300: 001374 p.000033: 2.4 Internet-mediated research
...

...
003671 p.000300: 001365 p.000033: care staff who are recruited as research participants by virtue of their professional role may require NHS REC review
003672 p.000300: 001366 p.000033: only if they raise significant ethical issues. Please see the HRA approval decision tool
003673 p.000300: 001367 p.000033: (http://www.hra-decisiontools.org.uk/ethics/).
003674 p.000300: 001368 p.000033:
003675 p.000300: 001369 p.000033: It is expected that a light-touch review by a REC will be able to provide an effective filter for projects that might
003676 p.000300: 001370 p.000033: otherwise have been inappropriately sent to an NHS REC, including those that while involving a physically invasive
003677 p.000300: 001371 p.000033: technique do not do so for clinical purposes. Similarly, the framework provides for review by a REC of large-scale,
003678 p.000300: 001372 p.000033: longitudinal social science studies that may seek information relating to respondents’ personalhealth profile.
003679 p.000300: 001373 p.000033:
003680 p.000300: 001374 p.000033: 2.4 Internet-mediated research
...

...
004058 p.000300: gender Gender
004059 p.000300: health Health
004060 p.000300: hiv HIV/AIDS
004061 p.000300: home Property Ownership
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
...

...
004072 p.000300: officer Police Officer
004073 p.000300: Philosophical Differences/Difference of
004074 p.000300: opinion
004075 p.000300: Opinion
004076 p.000300: party Political
004077 p.000300: physically LGBTQ+ Status
004078 p.000300: political Political
004079 p.000300: poor Economic/Poverty
004080 p.000300: racial Racial Minority
004081 p.000300: religious Religion
...

...
004171 p.000300: Health Drug Usage influence
004172 p.000300: Health HIV/AIDS hiv
004173 p.000300: Health Health health
004174 p.000300: Health Mentally Disabled disability
004175 p.000300: Health Motherhood/Family family
004176 p.000300: Health Physically Ill illness
004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
004179 p.000300: Political Political political
004180 p.000300: Political Trade Union Membership union
...

...
004189 p.000300: Social Ethnicity ethnic
004190 p.000300: Social Fetus/Neonate capacity
004191 p.000300: Social Gender gender
004192 p.000300: Social In Nursing Home nursing home
004193 p.000300: Social Incarcerated restricted
004194 p.000300: Social LGBTQ+ Status physically
004195 p.000300: Social Linguistic Proficiency deceased
004196 p.000300: Social Literacy literate
004197 p.000300: Social Marital Status engaged
004198 p.000300: Social Marital Status single
...

Social / Linguistic Proficiency

Searching for indicator deceased:

(return to top)
...
001183 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001184 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001185 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001186 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001187 p.000300: 000329 p.000008:
001188 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001189 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
001190 p.000300: ...
001191 p.000300:
001192 p.000300: ...
...

...
001437 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001438 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001439 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001440 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001441 p.000300: 000329 p.000008:
001442 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001443 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
001444 p.000300: ...
001445 p.000300:
001446 p.000300: ...
...

...
001522 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001523 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001524 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001525 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001526 p.000300: 000329 p.000008:
001527 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001528 p.000300: ...
001529 p.000300:
001530 p.000300: ...
001531 p.000300: 000464 p.000011: media, researchers will also need to abide by the regulations set by the data producers subject to such regulations
...

...
001615 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001616 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001617 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001618 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001619 p.000300: 000329 p.000008:
001620 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001621 p.000300: ...
001622 p.000300:
001623 p.000300: ...
001624 p.000300: 000370 p.000009: assistants working outside the UK in their own community.
...

...
002663 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
002664 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
002665 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
002666 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
002667 p.000300: 000329 p.000008:
002668 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
002669 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
002670 p.000300: ...
002671 p.000300:
002672 p.000300: ...
...

...
002968 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
002969 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
002970 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
002971 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
002972 p.000300: 000329 p.000008:
002973 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
002974 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
002975 p.000300: ...
002976 p.000300:
002977 p.000300: Social / In Nursing Home
...

...
003025 p.000300: 001372 p.000033: longitudinal social science studies that may seek information relating to respondents’ personalhealth profile.
003026 p.000300: 001373 p.000033:
003027 p.000300: 001374 p.000033: 2.4 Internet-mediated research
003028 p.000300: ...
003029 p.000300:
003030 p.000300: Social / Linguistic Proficiency
003031 p.000300: Searching for indicator deceased:
003032 p.000300:
003033 p.000300: (return to top)
003034 p.000300: ...
003035 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003036 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003037 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003038 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003039 p.000300: 000329 p.000008:
003040 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003041 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
003042 p.000300: 000332 p.000008: (http://www.legislation.gov.uk/asp/2006/4/contents) and to the relevant NHS policy requirements for REC reviews. See
003043 p.000300: 000333 p.000008: also HTA Code of Practice (http://www.hta.gov.uk/legislationpoliciesandcodesofpractice/codesofpractice.cfm), NHS
003044 p.000300: 000334 p.000008: Research Scotland (NRS) (http://www.nhsresearchscotland.org.uk/).
...

...
003966 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003967 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003968 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003969 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003970 p.000300: 000329 p.000008:
003971 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003972 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
003973 p.000300: ...
003974 p.000300:
003975 p.000300: Social / Victim of Abuse
...

...
003983 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003984 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003985 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003986 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003987 p.000300: 000329 p.000008:
003988 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003989 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
003990 p.000300: ...
003991 p.000300:
003992 p.000300: Social / Women
...

...
004041 p.000300: coercion Presence of Coercion
004042 p.000300: cognitive Cognitive Impairment
004043 p.000300: cognitive impairment Cognitive Impairment
004044 p.000300: cultural Cultural Differences
004045 p.000300: culture Cultural Differences
004046 p.000300: deceased Linguistic Proficiency
004047 p.000300: dependence Drug Dependence
004048 p.000300: dependent Dependent
004049 p.000300: disability Mentally Disabled
004050 p.000300: drug Drug Usage
...

...
004190 p.000300: Social Fetus/Neonate capacity
004191 p.000300: Social Gender gender
004192 p.000300: Social In Nursing Home nursing home
004193 p.000300: Social Incarcerated restricted
004194 p.000300: Social LGBTQ+ Status physically
004195 p.000300: Social Linguistic Proficiency deceased
004196 p.000300: Social Literacy literate
004197 p.000300: Social Marital Status engaged
004198 p.000300: Social Marital Status single
004199 p.000300: Philosophical Differences/Difference of
...

Searching for indicator linguistic proficiency:

(return to top)
...
003025 p.000300: 001372 p.000033: longitudinal social science studies that may seek information relating to respondents’ personalhealth profile.
003026 p.000300: 001373 p.000033:
003027 p.000300: 001374 p.000033: 2.4 Internet-mediated research
003028 p.000300: ...
003029 p.000300:
003030 p.000300: Social / Linguistic Proficiency
003031 p.000300: Searching for indicator deceased:
003032 p.000300:
003033 p.000300: (return to top)
003034 p.000300: ...
003035 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
...

...
004041 p.000300: coercion Presence of Coercion
004042 p.000300: cognitive Cognitive Impairment
004043 p.000300: cognitive impairment Cognitive Impairment
004044 p.000300: cultural Cultural Differences
004045 p.000300: culture Cultural Differences
004046 p.000300: deceased Linguistic Proficiency
004047 p.000300: dependence Drug Dependence
004048 p.000300: dependent Dependent
004049 p.000300: disability Mentally Disabled
004050 p.000300: drug Drug Usage
...

...
004190 p.000300: Social Fetus/Neonate capacity
004191 p.000300: Social Gender gender
004192 p.000300: Social In Nursing Home nursing home
004193 p.000300: Social Incarcerated restricted
004194 p.000300: Social LGBTQ+ Status physically
004195 p.000300: Social Linguistic Proficiency deceased
004196 p.000300: Social Literacy literate
004197 p.000300: Social Marital Status engaged
004198 p.000300: Social Marital Status single
004199 p.000300: Philosophical Differences/Difference of
...

Social / Literacy

Searching for indicator literacy:

(return to top)
...
003042 p.000300: 000332 p.000008: (http://www.legislation.gov.uk/asp/2006/4/contents) and to the relevant NHS policy requirements for REC reviews. See
003043 p.000300: 000333 p.000008: also HTA Code of Practice (http://www.hta.gov.uk/legislationpoliciesandcodesofpractice/codesofpractice.cfm), NHS
003044 p.000300: 000334 p.000008: Research Scotland (NRS) (http://www.nhsresearchscotland.org.uk/).
003045 p.000300: ...
003046 p.000300:
003047 p.000300: Social / Literacy
003048 p.000300: Searching for indicator literate:
003049 p.000300:
003050 p.000300: (return to top)
003051 p.000300: ...
003052 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
...

...
004064 p.000300: impaired Cognitive Impairment
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
004070 p.000300: minor Youth/Minors
004071 p.000300: nursing home In Nursing Home
004072 p.000300: officer Police Officer
004073 p.000300: Philosophical Differences/Difference of
...

...
004191 p.000300: Social Gender gender
004192 p.000300: Social In Nursing Home nursing home
004193 p.000300: Social Incarcerated restricted
004194 p.000300: Social LGBTQ+ Status physically
004195 p.000300: Social Linguistic Proficiency deceased
004196 p.000300: Social Literacy literate
004197 p.000300: Social Marital Status engaged
004198 p.000300: Social Marital Status single
004199 p.000300: Philosophical Differences/Difference of
004200 p.000300: Social opinion
...

Social / Literacy

Searching for indicator literate:

(return to top)
...
000679 p.000300: 001756 p.000041:
000680 p.000300: 001757 p.000041: Freely-given informed consent: Informed consent entails giving sufficient information about the research and ensuring
000681 p.000300: 001758 p.000041: that there is no explicit or implicit coercion so that prospective participants can make an informed and free decision
000682 p.000300: 001759 p.000041: on their possible involvement. Typically, the information should be provided in written form, time should be allowed
000683 p.000300: 001760 p.000041: for the participants to consider their choices and the forms should be signed off by the research participants to
000684 p.000300: 001761 p.000041: indicate consent. Where participants are not literate, verbal consent may be obtained but this should wherever
000685 p.000300: possible
000686 p.000300: 001762 p.000041: be witnessed and
000687 p.000300: ...
000688 p.000300:
...

...
001979 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
001980 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
001981 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
001982 p.000300: 001192 p.000029: 29
001983 p.000300: 001193 p.000029:
001984 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
001985 p.000300: ...
001986 p.000300:
001987 p.000300: ...
001988 p.000300: 001498 p.000035: Does the research involve other potentially vulnerable groups: children, those with cognitive impairment, or those in
...

...
002113 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
002114 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
002115 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
002116 p.000300: 001192 p.000029: 29
002117 p.000300: 001193 p.000029:
002118 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
002119 p.000300: 001195 p.000029: this should wherever possible include a recorded written witness sign-off. In other circumstances, for example
002120 p.000300: 001196 p.000029: telephone interviews, this may not be possible. Where consent is not to be secured, a full statement justifying this
002121 p.000300: 001197 p.000029: should be submitted to the REC for review. In longitudinal research and data archiving it may be necessary to explain
002122 p.000300: 001198 p.000029: the need for (and limitations of) enduring consent (see Appendix C for a definition); it may also be necessary to
...

...
002255 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
002256 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
002257 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
002258 p.000300: 001192 p.000029: 29
002259 p.000300: 001193 p.000029:
002260 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
002261 p.000300: 001195 p.000029: this should wherever possible include a recorded written witness sign-off. In other circumstances, for example
002262 p.000300: 001196 p.000029: telephone interviews, this may not be possible. Where consent is not to be secured, a full statement justifying this
002263 p.000300: 001197 p.000029: should be submitted to the REC for review. In longitudinal research and data archiving it may be necessary to explain
002264 p.000300: 001198 p.000029: the need for (and limitations of) enduring consent (see Appendix C for a definition); it may also be necessary to
...

...
002475 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
002476 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
002477 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
002478 p.000300: 001192 p.000029: 29
002479 p.000300: 001193 p.000029:
002480 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
002481 p.000300: 001195 p.000029: this should wherever possible include a recorded written witness sign-off. In other circumstances, for example
002482 p.000300: ...
002483 p.000300:
002484 p.000300: ...
...

...
003042 p.000300: 000332 p.000008: (http://www.legislation.gov.uk/asp/2006/4/contents) and to the relevant NHS policy requirements for REC reviews. See
003043 p.000300: 000333 p.000008: also HTA Code of Practice (http://www.hta.gov.uk/legislationpoliciesandcodesofpractice/codesofpractice.cfm), NHS
003044 p.000300: 000334 p.000008: Research Scotland (NRS) (http://www.nhsresearchscotland.org.uk/).
003045 p.000300: ...
003046 p.000300:
003047 p.000300: Social / Literacy
003048 p.000300: Searching for indicator literate:
003049 p.000300:
003050 p.000300: (return to top)
003051 p.000300: ...
003052 p.000300: 001189 p.000028: Where participants are in a potentially vulnerable or dependent position (eg children) it is important to ensure that
003053 p.000300: 001190 p.000028: they have the time and opportunity to access support in their decision-making, for example by discussing their choice
003054 p.000300: 001191 p.000028: with a trusted adult. Where consent is sought from children it is normally good practice to secure permission from a
003055 p.000300: 001192 p.000029: 29
003056 p.000300: 001193 p.000029:
003057 p.000300: 001194 p.000029: responsible adult in addition to child consent. Where participants are not literate verbal consent may be obtained, but
003058 p.000300: 001195 p.000029: this should wherever possible include a recorded written witness sign-off. In other circumstances, for example
003059 p.000300: 001196 p.000029: telephone interviews, this may not be possible. Where consent is not to be secured, a full statement justifying this
003060 p.000300: 001197 p.000029: should be submitted to the REC for review. In longitudinal research and data archiving it may be necessary to explain
003061 p.000300: 001198 p.000029: the need for (and limitations of) enduring consent (see Appendix C for a definition); it may also be necessary to
...

...
003065 p.000300: 001756 p.000041:
003066 p.000300: 001757 p.000041: Freely-given informed consent: Informed consent entails giving sufficient information about the research and ensuring
003067 p.000300: 001758 p.000041: that there is no explicit or implicit coercion so that prospective participants can make an informed and free decision
003068 p.000300: 001759 p.000041: on their possible involvement. Typically, the information should be provided in written form, time should be allowed
003069 p.000300: 001760 p.000041: for the participants to consider their choices and the forms should be signed off by the research participants to
003070 p.000300: 001761 p.000041: indicate consent. Where participants are not literate, verbal consent may be obtained but this should wherever
003071 p.000300: possible
003072 p.000300: 001762 p.000041: be witnessed and
003073 p.000300: 001763 p.000042: 42
003074 p.000300: 001764 p.000042:
...

...
004064 p.000300: impaired Cognitive Impairment
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
004070 p.000300: minor Youth/Minors
004071 p.000300: nursing home In Nursing Home
004072 p.000300: officer Police Officer
004073 p.000300: Philosophical Differences/Difference of
...

...
004191 p.000300: Social Gender gender
004192 p.000300: Social In Nursing Home nursing home
004193 p.000300: Social Incarcerated restricted
004194 p.000300: Social LGBTQ+ Status physically
004195 p.000300: Social Linguistic Proficiency deceased
004196 p.000300: Social Literacy literate
004197 p.000300: Social Marital Status engaged
004198 p.000300: Social Marital Status single
004199 p.000300: Philosophical Differences/Difference of
004200 p.000300: Social opinion
...

Social / Marital Status

Searching for indicator engaged:

(return to top)
...
003074 p.000300: 001764 p.000042:
003075 p.000300: 001765 p.000042: recorded. In other circumstances, for example telephone interviews, written or witnessed consent may not be
003076 p.000300: possible,
003077 p.000300: ...
003078 p.000300:
003079 p.000300: Social / Marital Status
003080 p.000300: Searching for indicator engaged:
003081 p.000300:
003082 p.000300: (return to top)
003083 p.000300: ...
003084 p.000300: 000441 p.000010:
003085 p.000300: 000442 p.000011: 11
003086 p.000300: 000443 p.000011:
003087 p.000300: 000444 p.000011: Within the definition of research, all data collection and analysis involving human participants and/or personal data
003088 p.000300: 000445 p.000011: should undergo ethics review prior to the research commencing, with the exception of the following, which are not
003089 p.000300: 000446 p.000011: considered ‘research’. However, ESRC would not usually provide funding to support a project engaged in only
003090 p.000300: these
003091 p.000300: 000447 p.000011: activities below:
003092 p.000300: 000448 p.000011:
003093 p.000300: 000449 p.000011: • Routine audit
...

...
003098 p.000300: 000812 p.000020: 1.9 Arrangements should be made for collaborative research
003099 p.000300: 000813 p.000020: The FRE guidelines should be drawn to the attention of all proposed collaborators or project partners, providing
003100 p.000300: 000814 p.000020: co-funding or in-kind contribution, prior to a submission for funding. In many cases requirements can be satisfied by
003101 p.000300: 000815 p.000020: the research being conducted in a FRE-compliant RO. If this is not the case, proposals submitted to ESRC should
003102 p.000300: confirm
003103 p.000300: 000816 p.000020: that the research will adhere to our requirements. ROs engaged in collaborative research may agree to use the
003104 p.000300: services
003105 p.000300: 000817 p.000020: of one of their RECs to review a joint project on behalf of all participants.
003106 p.000300: 000818 p.000020:
003107 p.000300: 000819 p.000020: Projects involving researchers from more than one RO can create complications for formal ethics review procedures.
003108 p.000300: ROs
003109 p.000300: 000820 p.000020: and other partners engaged in collaborative research may agree to use the REC of the RO where the principal
003110 p.000300: 000821 p.000020: investigator is based to review the project on behalf of all participants. A single review process should be agreed by
003111 p.000300: 000822 p.000020: all researchers, the standards of which should at least satisfy the ESRC minimum ethics requirements. Researchers
003112 p.000300: and
003113 p.000300: 000823 p.000020: their co-producing partners also need to agree to an iterative and shared process of ethics review as the project
003114 p.000300: 000824 p.000020: develops. Each RO needs to be satisfied that the research proposal has been properly scrutinised by the appropriate
...

...
003138 p.000300: 000812 p.000020: 1.9 Arrangements should be made for collaborative research
003139 p.000300: 000813 p.000020: The FRE guidelines should be drawn to the attention of all proposed collaborators or project partners, providing
003140 p.000300: 000814 p.000020: co-funding or in-kind contribution, prior to a submission for funding. In many cases requirements can be satisfied by
003141 p.000300: 000815 p.000020: the research being conducted in a FRE-compliant RO. If this is not the case, proposals submitted to ESRC should
003142 p.000300: confirm
003143 p.000300: 000816 p.000020: that the research will adhere to our requirements. ROs engaged in collaborative research may agree to use the
003144 p.000300: services
003145 p.000300: 000817 p.000020: of one of their RECs to review a joint project on behalf of all participants.
003146 p.000300: 000818 p.000020:
003147 p.000300: 000819 p.000020: Projects involving researchers from more than one RO can create complications for formal ethics review procedures.
003148 p.000300: ROs
003149 p.000300: 000820 p.000020: and other partners engaged in collaborative research may agree to use the REC of the RO where the principal
003150 p.000300: 000821 p.000020: investigator is based to review the project on behalf of all participants. A single review process should be agreed by
003151 p.000300: 000822 p.000020: all researchers, the standards of which should at least satisfy the ESRC minimum ethics requirements. Researchers
003152 p.000300: and
003153 p.000300: 000823 p.000020: their co-producing partners also need to agree to an iterative and shared process of ethics review as the project
003154 p.000300: 000824 p.000020: develops. Each RO needs to be satisfied that the research proposal has been properly scrutinised by the appropriate
...

...
004050 p.000300: drug Drug Usage
004051 p.000300: economic Economic/Poverty
004052 p.000300: education Educational
004053 p.000300: educational Educational
004054 p.000300: elderly Elderly
004055 p.000300: engaged Marital Status
004056 p.000300: ethnic Ethnicity
004057 p.000300: family Motherhood/Family
004058 p.000300: gender Gender
004059 p.000300: health Health
...

...
004105 p.000300: culture ['cultural']
004106 p.000300: drug ['influence']
004107 p.000300: economic ['poor']
004108 p.000300: education ['educational']
004109 p.000300: educational ['education']
004110 p.000300: engaged ['single']
004111 p.000300: ['cognitive', 'cognitive impairment',
004112 p.000300: impaired
004113 p.000300: 'impairment']
004114 p.000300: impairment ['cognitive', 'cognitive impairment', 'impaired']
004115 p.000300: influence ['drug']
004116 p.000300: party ['political']
004117 p.000300: political ['party']
004118 p.000300: poor ['economic']
004119 p.000300: religious ['special']
004120 p.000300: single ['engaged']
004121 p.000300: special ['religious']
004122 p.000300: vulnerable ['child', 'children']
004123 p.000300:
004124 p.000300:
...

...
004192 p.000300: Social In Nursing Home nursing home
004193 p.000300: Social Incarcerated restricted
004194 p.000300: Social LGBTQ+ Status physically
004195 p.000300: Social Linguistic Proficiency deceased
004196 p.000300: Social Literacy literate
004197 p.000300: Social Marital Status engaged
004198 p.000300: Social Marital Status single
004199 p.000300: Philosophical Differences/Difference of
004200 p.000300: Social opinion
004201 p.000300: Opinion
004202 p.000300: Social Police Officer officer
...

Searching for indicator marital status:

(return to top)
...
003074 p.000300: 001764 p.000042:
003075 p.000300: 001765 p.000042: recorded. In other circumstances, for example telephone interviews, written or witnessed consent may not be
003076 p.000300: possible,
003077 p.000300: ...
003078 p.000300:
003079 p.000300: Social / Marital Status
003080 p.000300: Searching for indicator engaged:
003081 p.000300:
003082 p.000300: (return to top)
003083 p.000300: ...
003084 p.000300: 000441 p.000010:
...

...
004050 p.000300: drug Drug Usage
004051 p.000300: economic Economic/Poverty
004052 p.000300: education Educational
004053 p.000300: educational Educational
004054 p.000300: elderly Elderly
004055 p.000300: engaged Marital Status
004056 p.000300: ethnic Ethnicity
004057 p.000300: family Motherhood/Family
004058 p.000300: gender Gender
004059 p.000300: health Health
...

...
004078 p.000300: political Political
004079 p.000300: poor Economic/Poverty
004080 p.000300: racial Racial Minority
004081 p.000300: religious Religion
004082 p.000300: restricted Incarcerated
004083 p.000300: single Marital Status
004084 p.000300:
004085 p.000300: social Social
004086 p.000300: special Religion
004087 p.000300: student Student
...

...
004192 p.000300: Social In Nursing Home nursing home
004193 p.000300: Social Incarcerated restricted
004194 p.000300: Social LGBTQ+ Status physically
004195 p.000300: Social Linguistic Proficiency deceased
004196 p.000300: Social Literacy literate
004197 p.000300: Social Marital Status engaged
004198 p.000300: Social Marital Status single
004199 p.000300: Philosophical Differences/Difference of
004200 p.000300: Social opinion
004201 p.000300: Opinion
004202 p.000300: Social Police Officer officer
...

Searching for indicator single:

(return to top)
...
003104 p.000300: services
003105 p.000300: 000817 p.000020: of one of their RECs to review a joint project on behalf of all participants.
003106 p.000300: 000818 p.000020:
003107 p.000300: 000819 p.000020: Projects involving researchers from more than one RO can create complications for formal ethics review procedures.
003108 p.000300: ROs
003109 p.000300: 000820 p.000020: and other partners engaged in collaborative research may agree to use the REC of the RO where the principal
003110 p.000300: 000821 p.000020: investigator is based to review the project on behalf of all participants. A single review process should be agreed by
003111 p.000300: 000822 p.000020: all researchers, the standards of which should at least satisfy the ESRC minimum ethics requirements. Researchers
003112 p.000300: and
003113 p.000300: 000823 p.000020: their co-producing partners also need to agree to an iterative and shared process of ethics review as the project
003114 p.000300: 000824 p.000020: develops. Each RO needs to be satisfied that the research proposal has been properly scrutinised by the appropriate
003115 p.000300: 000825 p.000020: REC, for example the principal investigator’s REC, and that regular monitoring of the conduct of the research is
003116 p.000300: taking
003117 p.000300: ...
003118 p.000300:
003119 p.000300: Searching for indicator single:
003120 p.000300:
003121 p.000300: (return to top)
003122 p.000300: ...
003123 p.000300: 000154 p.000003: rests with the principal investigator and the administering RO. However all researchers are expected to take personal
003124 p.000300: 000155 p.000003: responsibility for undertaking research to the highest ethical standards.
003125 p.000300: 000156 p.000003:
003126 p.000300: 000157 p.000003: • Responsibility for determining the appropriate ethics review required lies with the principal investigator and the
003127 p.000300: 000158 p.000003: research team. Ensuring that research is subject to appropriate ethics review and monitoring lies with the RO seeking
003128 p.000300: 000159 p.000003: or administering an ESRC grant. A single review process should be agreed in collaborative research involving more
003129 p.000300: than
003130 p.000300: 000160 p.000003: one organisation or multi-discipline research. The applicant should ensure that participating organisations and
003131 p.000300: 000161 p.000003: collaborative researchers are satisfied that the research proposal has received adequate ethics review, and that
003132 p.000300: 000162 p.000003: regular monitoring of the conduct of the research takes place and is promptly reported to all organisations or
...

...
003144 p.000300: services
003145 p.000300: 000817 p.000020: of one of their RECs to review a joint project on behalf of all participants.
003146 p.000300: 000818 p.000020:
003147 p.000300: 000819 p.000020: Projects involving researchers from more than one RO can create complications for formal ethics review procedures.
003148 p.000300: ROs
003149 p.000300: 000820 p.000020: and other partners engaged in collaborative research may agree to use the REC of the RO where the principal
003150 p.000300: 000821 p.000020: investigator is based to review the project on behalf of all participants. A single review process should be agreed by
003151 p.000300: 000822 p.000020: all researchers, the standards of which should at least satisfy the ESRC minimum ethics requirements. Researchers
003152 p.000300: and
003153 p.000300: 000823 p.000020: their co-producing partners also need to agree to an iterative and shared process of ethics review as the project
003154 p.000300: 000824 p.000020: develops. Each RO needs to be satisfied that the research proposal has been properly scrutinised by the appropriate
...

...
003161 p.000300: 000873 p.000021:
003162 p.000300: 000874 p.000021: 1.10 Duplication of submission should be avoided
003163 p.000300: 000875 p.000021: Researchers and ROs should avoid duplication of ethics review. The appropriate review body will be determined by
003164 p.000300: the
003165 p.000300: 000876 p.000021: issues raised by the research, the nature of the data to be obtained and the population of participants to be included
003166 p.000300: 000877 p.000021: in the study. This will apply to both single-discipline research and interdisciplinary research, especially where
003167 p.000300: 000878 p.000021: social and biomedical scientists are working together. For a full review ESRC does not require an organisational REC
003168 p.000300: 000879 p.000021: and a NHS REC to be involved. Researchers should submit proposals either to the REC of their RO or to HRA
003169 p.000300: 000880 p.000021: (http://www.hra.nhs.uk/) for review by NHS RECs across the UK, including the Gene Therapy Advisory Committee
003170 p.000300: (GTAC),
...

...
003470 p.000300: 000873 p.000021:
003471 p.000300: 000874 p.000021: 1.10 Duplication of submission should be avoided
003472 p.000300: 000875 p.000021: Researchers and ROs should avoid duplication of ethics review. The appropriate review body will be determined by
003473 p.000300: the
003474 p.000300: 000876 p.000021: issues raised by the research, the nature of the data to be obtained and the population of participants to be included
003475 p.000300: 000877 p.000021: in the study. This will apply to both single-discipline research and interdisciplinary research, especially where
003476 p.000300: 000878 p.000021: social and biomedical scientists are working together. For a full review ESRC does not require an organisational REC
003477 p.000300: 000879 p.000021: and a NHS REC to be involved. Researchers should submit proposals either to the REC of their RO or to HRA
003478 p.000300: 000880 p.000021: (http://www.hra.nhs.uk/) for review by NHS RECs across the UK, including the Gene Therapy Advisory Committee
003479 p.000300: (GTAC),
...

...
004078 p.000300: political Political
004079 p.000300: poor Economic/Poverty
004080 p.000300: racial Racial Minority
004081 p.000300: religious Religion
004082 p.000300: restricted Incarcerated
004083 p.000300: single Marital Status
004084 p.000300:
004085 p.000300: social Social
004086 p.000300: special Religion
004087 p.000300: student Student
...

...
004105 p.000300: culture ['cultural']
004106 p.000300: drug ['influence']
004107 p.000300: economic ['poor']
004108 p.000300: education ['educational']
004109 p.000300: educational ['education']
004110 p.000300: engaged ['single']
004111 p.000300: ['cognitive', 'cognitive impairment',
004112 p.000300: impaired
004113 p.000300: 'impairment']
004114 p.000300: impairment ['cognitive', 'cognitive impairment', 'impaired']
004115 p.000300: influence ['drug']
004116 p.000300: party ['political']
004117 p.000300: political ['party']
004118 p.000300: poor ['economic']
004119 p.000300: religious ['special']
004120 p.000300: single ['engaged']
004121 p.000300: special ['religious']
004122 p.000300: vulnerable ['child', 'children']
004123 p.000300:
004124 p.000300:
...

...
004192 p.000300: Social In Nursing Home nursing home
004193 p.000300: Social Incarcerated restricted
004194 p.000300: Social LGBTQ+ Status physically
004195 p.000300: Social Linguistic Proficiency deceased
004196 p.000300: Social Literacy literate
004197 p.000300: Social Marital Status engaged
004198 p.000300: Social Marital Status single
004199 p.000300: Philosophical Differences/Difference of
004200 p.000300: Social opinion
004201 p.000300: Opinion
004202 p.000300: Social Police Officer officer
...

Social / Philosophical Differences/Difference of Opinion

Searching for indicator difference of opinion:

(return to top)
...
003169 p.000300: 000880 p.000021: (http://www.hra.nhs.uk/) for review by NHS RECs across the UK, including the Gene Therapy Advisory Committee
003170 p.000300: (GTAC),
003171 p.000300: 000881 p.000021: and to the Social Care REC.
003172 p.000300: ...
003173 p.000300:
003174 p.000300: Social / Philosophical Differences/Difference of Opinion
003175 p.000300: Searching for indicator opinion:
003176 p.000300:
003177 p.000300: (return to top)
003178 p.000300: ...
003179 p.000300: 001780 p.000042: example), should be completed for all social science research projects. RECs need to confirm that only a light-touch
...

Searching for indicator opinion:

(return to top)
...
001719 p.000300: Freedom of
001720 p.000300: 001606 p.000038: Information Act, Human Rights Act
001721 p.000300: ...
001722 p.000300:
001723 p.000300: ...
001724 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
001725 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
001726 p.000300: 001787 p.000042: individual.
001727 p.000300: 001788 p.000042:
001728 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
...

...
002686 p.000300: 000522 p.000012: collectively familiar with a range of
002687 p.000300: ...
002688 p.000300:
002689 p.000300: ...
002690 p.000300: 001784 p.000042: individual who can be identified a) from those data or, b) from those data and other information which is in the
002691 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
002692 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
002693 p.000300: 001787 p.000042: individual.
002694 p.000300: 001788 p.000042:
002695 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
...

...
003169 p.000300: 000880 p.000021: (http://www.hra.nhs.uk/) for review by NHS RECs across the UK, including the Gene Therapy Advisory Committee
003170 p.000300: (GTAC),
003171 p.000300: 000881 p.000021: and to the Social Care REC.
003172 p.000300: ...
003173 p.000300:
003174 p.000300: Social / Philosophical Differences/Difference of Opinion
003175 p.000300: Searching for indicator opinion:
003176 p.000300:
003177 p.000300: (return to top)
003178 p.000300: ...
003179 p.000300: 001780 p.000042: example), should be completed for all social science research projects. RECs need to confirm that only a light-touch
003180 p.000300: 001781 p.000042: review is justified.
003181 p.000300: 001782 p.000042:
003182 p.000300: 001783 p.000042: Personal data: Under the Data Protection Act 1998 ‘personal data’ is defined as data which relates to a living
003183 p.000300: 001784 p.000042: individual who can be identified a) from those data or, b) from those data and other information which is in the
003184 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
003185 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
003186 p.000300: 001787 p.000042: individual.
003187 p.000300: 001788 p.000042:
003188 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
...

...
003281 p.000300: Searching for indicator racial:
003282 p.000300:
003283 p.000300: (return to top)
003284 p.000300: ...
003285 p.000300: 001784 p.000042: individual who can be identified a) from those data or, b) from those data and other information which is in the
003286 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
003287 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
003288 p.000300: 001787 p.000042: individual.
003289 p.000300: 001788 p.000042:
003290 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
...

...
003298 p.000300: Social / Religion
003299 p.000300: Searching for indicator religious:
003300 p.000300:
003301 p.000300: (return to top)
003302 p.000300: ...
003303 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
003304 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
003305 p.000300: 001787 p.000042: individual.
003306 p.000300: 001788 p.000042:
003307 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
...

...
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
004070 p.000300: minor Youth/Minors
004071 p.000300: nursing home In Nursing Home
004072 p.000300: officer Police Officer
004073 p.000300: Philosophical Differences/Difference of
004074 p.000300: opinion
004075 p.000300: Opinion
004076 p.000300: party Political
004077 p.000300: physically LGBTQ+ Status
004078 p.000300: political Political
004079 p.000300: poor Economic/Poverty
...

...
004194 p.000300: Social LGBTQ+ Status physically
004195 p.000300: Social Linguistic Proficiency deceased
004196 p.000300: Social Literacy literate
004197 p.000300: Social Marital Status engaged
004198 p.000300: Social Marital Status single
004199 p.000300: Philosophical Differences/Difference of
004200 p.000300: Social opinion
004201 p.000300: Opinion
004202 p.000300: Social Police Officer officer
004203 p.000300: Social Property Ownership home
004204 p.000300: Social Racial Minority racial
004205 p.000300: Social Religion religious
...

Searching for indicator philosophical differences:

(return to top)
...
003169 p.000300: 000880 p.000021: (http://www.hra.nhs.uk/) for review by NHS RECs across the UK, including the Gene Therapy Advisory Committee
003170 p.000300: (GTAC),
003171 p.000300: 000881 p.000021: and to the Social Care REC.
003172 p.000300: ...
003173 p.000300:
003174 p.000300: Social / Philosophical Differences/Difference of Opinion
003175 p.000300: Searching for indicator opinion:
003176 p.000300:
003177 p.000300: (return to top)
003178 p.000300: ...
003179 p.000300: 001780 p.000042: example), should be completed for all social science research projects. RECs need to confirm that only a light-touch
...

...
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
004070 p.000300: minor Youth/Minors
004071 p.000300: nursing home In Nursing Home
004072 p.000300: officer Police Officer
004073 p.000300: Philosophical Differences/Difference of
004074 p.000300: opinion
004075 p.000300: Opinion
004076 p.000300: party Political
004077 p.000300: physically LGBTQ+ Status
004078 p.000300: political Political
004079 p.000300: poor Economic/Poverty
...

...
004194 p.000300: Social LGBTQ+ Status physically
004195 p.000300: Social Linguistic Proficiency deceased
004196 p.000300: Social Literacy literate
004197 p.000300: Social Marital Status engaged
004198 p.000300: Social Marital Status single
004199 p.000300: Philosophical Differences/Difference of
004200 p.000300: Social opinion
004201 p.000300: Opinion
004202 p.000300: Social Police Officer officer
004203 p.000300: Social Property Ownership home
004204 p.000300: Social Racial Minority racial
004205 p.000300: Social Religion religious
...

Social / Police Officer

Searching for indicator officer:

(return to top)
...
000106 p.000300: complaints
000107 p.000300: 000729 p.000018: or expressions of concern about the conduct of research carried out under their auspices. Such complaints would
000108 p.000300: 000730 p.000018: normally be regarded as allegations of either poor performance or unethical conduct and would appropriately be
000109 p.000300: 000731 p.000018: addressed through the RO’s procedures for dealing with such allegations. Such mechanisms might include
000110 p.000300: providing
000111 p.000300: 000732 p.000018: research participants with the contact details of a responsible officer within the RO who is independent of specific
000112 p.000300: 000733 p.000018: research projects and is empowered to instigate appropriate investigation of any complaints in a timely manner.
000113 p.000300: 000734 p.000018:
000114 p.000300: ...
000115 p.000300:
...

...
003186 p.000300: 001787 p.000042: individual.
003187 p.000300: 001788 p.000042:
003188 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
003189 p.000300: ...
003190 p.000300:
003191 p.000300: Social / Police Officer
003192 p.000300: Searching for indicator officer:
003193 p.000300:
003194 p.000300: (return to top)
003195 p.000300: ...
003196 p.000300: 000204 p.000004: • Funded proposals should normally commence no sooner than three months after the formal notification of funding
003197 p.000300: to
003198 p.000300: 000205 p.000004: allow for recruitment of staff and ethics review. If an ethics review is required at a later stage in the project, this
003199 p.000300: 000206 p.000004: should be discussed with us when confirmation of funding is received, and funding arrangements will need to be
003200 p.000300: 000207 p.000005: 5
003201 p.000300: 000208 p.000005:
003202 p.000300: 000209 p.000005: agreed with the lead ESRC officer. At a minimum we expect that ethics review will be carried out prior to the stage in
003203 p.000300: 000210 p.000005: the project that the research will be undertaken. In those cases where it is agreed that ethics review is to be
003204 p.000300: 000211 p.000005: undertaken after the project funding has commenced, funds will be made available to cover the period through to the
003205 p.000300: 000212 p.000005: completion of the review, and continued funding will be conditional on the outcome of the ethics review.
003206 p.000300: 000213 p.000005:
...

...
003211 p.000300: 000419 p.000010: of the issues and have these reviewed by the appropriate REC. Non-conflicting advisory bodies, independent experts
003212 p.000300: and
003213 p.000300: 000420 p.000010: mentors may also assist in this process. Ongoing monitoring should be proportionate to the nature and degree of risk
003214 p.000300: 000421 p.000010: and harm entailed in the research. If ongoing review by a REC shows that a project requires major changes in the
003215 p.000300: 000422 p.000010: lifetime of the research, which will alter it so much that it can no longer attract ESRC support, this should be
003216 p.000300: 000423 p.000010: referred to the lead ESRC officer.
003217 p.000300: 000424 p.000010:
003218 p.000300: 000425 p.000010: Pathways to impact and dissemination
003219 p.000300: 000426 p.000010: Risk to researchers, participants and others (eg potentially stigmatised or marginalised groups) as a result of
003220 p.000300: 000427 p.000010: potential impact, knowledge exchange and dissemination activity should be considered as part of the ethical
...

...
003227 p.000300: complaints
003228 p.000300: 000729 p.000018: or expressions of concern about the conduct of research carried out under their auspices. Such complaints would
003229 p.000300: 000730 p.000018: normally be regarded as allegations of either poor performance or unethical conduct and would appropriately be
003230 p.000300: 000731 p.000018: addressed through the RO’s procedures for dealing with such allegations. Such mechanisms might include
003231 p.000300: providing
003232 p.000300: 000732 p.000018: research participants with the contact details of a responsible officer within the RO who is independent of specific
003233 p.000300: 000733 p.000018: research projects and is empowered to instigate appropriate investigation of any complaints in a timely manner.
003234 p.000300: 000734 p.000018:
003235 p.000300: 000735 p.000018: Appeals – ROs should publish procedures and mechanisms for receiving and addressing, in a timely manner,
003236 p.000300: appeals from
...

...
003243 p.000300: 001546 p.000037: If you have answered ‘yes’ to any of the other questions in the Research checklist, you will need to describe
003244 p.000300: more
003245 p.000300: 001547 p.000037: fully how you plan to deal with the ethics issues raised by your research. Your proposal will need to be reviewed by
003246 p.000300: 001548 p.000037: the REC. You should submit your plans for addressing the ethics issues raised by your proposal using an ethics
003247 p.000300: review
003248 p.000300: 001549 p.000037: application form, which should be sent to the Faculty/School/ Department Research Ethics Officer. Forms can be
003249 p.000300: obtained
003250 p.000300: 001550 p.000037: from the Faculty/School/Department/University website.
003251 p.000300: 001551 p.000037:
003252 p.000300: 001552 p.000037: Please note that it is your responsibility to follow the RO’s Code of Practice on Ethical Standards and any relevant
003253 p.000300: 001553 p.000037: academic or professional guidelines in the conduct of your study. This includes providing appropriate information
003254 p.000300: 001554 p.000037: sheets and consent forms, and ensuring confidentiality in the storage and use of data. Any significant change in the
003255 p.000300: 001555 p.000037: question, design or conduct over the course of the research should be notified to the Faculty/School Research Ethics
003256 p.000300: 001556 p.000037: Officer and may require a new application for ethics review.
003257 p.000300: 001557 p.000037:
003258 p.000300: 001558 p.000037: Points to consider when planning research
003259 p.000300: 001559 p.000037:
003260 p.000300: 001560 p.000037: This section aims to facilitate the process of considering ethics around social science research: it is not intended to
...

...
003691 p.000300: the
003692 p.000300: ...
003693 p.000300:
003694 p.000300: ...
003695 p.000300: 001555 p.000037: question, design or conduct over the course of the research should be notified to the Faculty/School Research Ethics
003696 p.000300: 001556 p.000037: Officer and may require a new application for ethics review.
003697 p.000300: 001557 p.000037:
003698 p.000300: 001558 p.000037: Points to consider when planning research
003699 p.000300: 001559 p.000037:
003700 p.000300: 001560 p.000037: This section aims to facilitate the process of considering ethics around social science research: it is not intended to
...

...
004067 p.000300: influence Drug Usage
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
004070 p.000300: minor Youth/Minors
004071 p.000300: nursing home In Nursing Home
004072 p.000300: officer Police Officer
004073 p.000300: Philosophical Differences/Difference of
004074 p.000300: opinion
004075 p.000300: Opinion
004076 p.000300: party Political
...

...
004197 p.000300: Social Marital Status engaged
004198 p.000300: Social Marital Status single
004199 p.000300: Philosophical Differences/Difference of
004200 p.000300: Social opinion
004201 p.000300: Opinion
004202 p.000300: Social Police Officer officer
004203 p.000300: Social Property Ownership home
004204 p.000300: Social Racial Minority racial
004205 p.000300: Social Religion religious
004206 p.000300: Social Religion special
...

Searching for indicator police:

(return to top)
...
003186 p.000300: 001787 p.000042: individual.
003187 p.000300: 001788 p.000042:
003188 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
003189 p.000300: ...
003190 p.000300:
003191 p.000300: Social / Police Officer
003192 p.000300: Searching for indicator officer:
003193 p.000300:
003194 p.000300: (return to top)
003195 p.000300: ...
003196 p.000300: 000204 p.000004: • Funded proposals should normally commence no sooner than three months after the formal notification of funding
...

...
004067 p.000300: influence Drug Usage
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
004070 p.000300: minor Youth/Minors
004071 p.000300: nursing home In Nursing Home
004072 p.000300: officer Police Officer
004073 p.000300: Philosophical Differences/Difference of
004074 p.000300: opinion
004075 p.000300: Opinion
004076 p.000300: party Political
...

...
004197 p.000300: Social Marital Status engaged
004198 p.000300: Social Marital Status single
004199 p.000300: Philosophical Differences/Difference of
004200 p.000300: Social opinion
004201 p.000300: Opinion
004202 p.000300: Social Police Officer officer
004203 p.000300: Social Property Ownership home
004204 p.000300: Social Racial Minority racial
004205 p.000300: Social Religion religious
004206 p.000300: Social Religion special
...

Social / Property Ownership

Searching for indicator home:

(return to top)
...
001081 p.000300: ...
001082 p.000300:
001083 p.000300: ...
001084 p.000300: 001502 p.000036:
001085 p.000300: 001503 p.000036: access to the groups or individuals to be recruited? (eg employees, students at school, members of self- help group,
001086 p.000300: 001504 p.000036: residents of nursing home?)
001087 p.000300: 001505 p.000036: Will it be necessary for participants to take part in the study without their knowledge and consent at the time? (eg
001088 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
001089 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
001090 p.000300: 001508 p.000036: lives)
...

...
001989 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
001990 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
001991 p.000300: 001501 p.000036: 36
001992 p.000300: 001502 p.000036:
001993 p.000300: 001503 p.000036: access to the groups or individuals to be recruited? (eg employees, students at school, members of self- help group,
001994 p.000300: 001504 p.000036: residents of nursing home?)
001995 p.000300: 001505 p.000036: Will it be necessary for participants to take part in the study without their knowledge and consent at the time? (eg
001996 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
001997 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
001998 p.000300: ...
...

...
002972 p.000300: 000329 p.000008:
002973 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
002974 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
002975 p.000300: ...
002976 p.000300:
002977 p.000300: Social / In Nursing Home
002978 p.000300: Searching for indicator nursing home:
002979 p.000300:
002980 p.000300: (return to top)
002981 p.000300: ...
002982 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
002983 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
002984 p.000300: 001501 p.000036: 36
002985 p.000300: 001502 p.000036:
002986 p.000300: 001503 p.000036: access to the groups or individuals to be recruited? (eg employees, students at school, members of self- help group,
002987 p.000300: 001504 p.000036: residents of nursing home?)
002988 p.000300: 001505 p.000036: Will it be necessary for participants to take part in the study without their knowledge and consent at the time? (eg
002989 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
002990 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
002991 p.000300: 001508 p.000036: lives)
...

...
003258 p.000300: 001558 p.000037: Points to consider when planning research
003259 p.000300: 001559 p.000037:
003260 p.000300: 001560 p.000037: This section aims to facilitate the process of considering ethics around social science research: it is not intended to
003261 p.000300: ...
003262 p.000300:
003263 p.000300: Social / Property Ownership
003264 p.000300: Searching for indicator home:
003265 p.000300:
003266 p.000300: (return to top)
003267 p.000300: ...
003268 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
003269 p.000300: 001500 p.000035: Will the study require the co-operation of a gatekeeper for initial
003270 p.000300: 001501 p.000036: 36
003271 p.000300: 001502 p.000036:
003272 p.000300: 001503 p.000036: access to the groups or individuals to be recruited? (eg employees, students at school, members of self- help group,
003273 p.000300: 001504 p.000036: residents of nursing home?)
003274 p.000300: 001505 p.000036: Will it be necessary for participants to take part in the study without their knowledge and consent at the time? (eg
003275 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
003276 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
003277 p.000300: 001508 p.000036: lives)
...

...
004056 p.000300: ethnic Ethnicity
004057 p.000300: family Motherhood/Family
004058 p.000300: gender Gender
004059 p.000300: health Health
004060 p.000300: hiv HIV/AIDS
004061 p.000300: home Property Ownership
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
004070 p.000300: minor Youth/Minors
004071 p.000300: nursing home In Nursing Home
004072 p.000300: officer Police Officer
004073 p.000300: Philosophical Differences/Difference of
004074 p.000300: opinion
004075 p.000300: Opinion
...

...
004187 p.000300: Social Educational educational
004188 p.000300: Social Elderly elderly
004189 p.000300: Social Ethnicity ethnic
004190 p.000300: Social Fetus/Neonate capacity
004191 p.000300: Social Gender gender
004192 p.000300: Social In Nursing Home nursing home
004193 p.000300: Social Incarcerated restricted
004194 p.000300: Social LGBTQ+ Status physically
004195 p.000300: Social Linguistic Proficiency deceased
004196 p.000300: Social Literacy literate
...

...
004198 p.000300: Social Marital Status single
004199 p.000300: Philosophical Differences/Difference of
004200 p.000300: Social opinion
004201 p.000300: Opinion
004202 p.000300: Social Police Officer officer
004203 p.000300: Social Property Ownership home
004204 p.000300: Social Racial Minority racial
004205 p.000300: Social Religion religious
004206 p.000300: Social Religion special
004207 p.000300: Social Social social
...

Searching for indicator property ownership:

(return to top)
...
003258 p.000300: 001558 p.000037: Points to consider when planning research
003259 p.000300: 001559 p.000037:
003260 p.000300: 001560 p.000037: This section aims to facilitate the process of considering ethics around social science research: it is not intended to
003261 p.000300: ...
003262 p.000300:
003263 p.000300: Social / Property Ownership
003264 p.000300: Searching for indicator home:
003265 p.000300:
003266 p.000300: (return to top)
003267 p.000300: ...
003268 p.000300: 001499 p.000035: unequal relationships? (eg your own students)
...

...
004056 p.000300: ethnic Ethnicity
004057 p.000300: family Motherhood/Family
004058 p.000300: gender Gender
004059 p.000300: health Health
004060 p.000300: hiv HIV/AIDS
004061 p.000300: home Property Ownership
004062 p.000300: illegal Illegal Activity
004063 p.000300: illness Physically Ill
004064 p.000300: impaired Cognitive Impairment
004065 p.000300: impairment Cognitive Impairment
...

...
004198 p.000300: Social Marital Status single
004199 p.000300: Philosophical Differences/Difference of
004200 p.000300: Social opinion
004201 p.000300: Opinion
004202 p.000300: Social Police Officer officer
004203 p.000300: Social Property Ownership home
004204 p.000300: Social Racial Minority racial
004205 p.000300: Social Religion religious
004206 p.000300: Social Religion special
004207 p.000300: Social Social social
...

Social / Racial Minority

Searching for indicator minority:

(return to top)
...
003275 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
003276 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
003277 p.000300: 001508 p.000036: lives)
003278 p.000300: ...
003279 p.000300:
003280 p.000300: Social / Racial Minority
003281 p.000300: Searching for indicator racial:
003282 p.000300:
003283 p.000300: (return to top)
003284 p.000300: ...
003285 p.000300: 001784 p.000042: individual who can be identified a) from those data or, b) from those data and other information which is in the
...

...
004075 p.000300: Opinion
004076 p.000300: party Political
004077 p.000300: physically LGBTQ+ Status
004078 p.000300: political Political
004079 p.000300: poor Economic/Poverty
004080 p.000300: racial Racial Minority
004081 p.000300: religious Religion
004082 p.000300: restricted Incarcerated
004083 p.000300: single Marital Status
004084 p.000300:
...

...
004199 p.000300: Philosophical Differences/Difference of
004200 p.000300: Social opinion
004201 p.000300: Opinion
004202 p.000300: Social Police Officer officer
004203 p.000300: Social Property Ownership home
004204 p.000300: Social Racial Minority racial
004205 p.000300: Social Religion religious
004206 p.000300: Social Religion special
004207 p.000300: Social Social social
004208 p.000300: Social Student student
...

Social / Racial Minority

Searching for indicator racial:

(return to top)
...
001327 p.000300: ...
001328 p.000300:
001329 p.000300: ...
001330 p.000300: 001787 p.000042: individual.
001331 p.000300: 001788 p.000042:
001332 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
001333 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
001334 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
001335 p.000300: Act
001336 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
...

...
001723 p.000300: ...
001724 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
001725 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
001726 p.000300: 001787 p.000042: individual.
001727 p.000300: 001788 p.000042:
001728 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
001729 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
001730 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
001731 p.000300: Act
001732 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
...

...
001753 p.000300:
001754 p.000300: ...
001755 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
001756 p.000300: 001787 p.000042: individual.
001757 p.000300: 001788 p.000042:
001758 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
001759 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
001760 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
001761 p.000300: Act
001762 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
...

...
002690 p.000300: 001784 p.000042: individual who can be identified a) from those data or, b) from those data and other information which is in the
002691 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
002692 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
002693 p.000300: 001787 p.000042: individual.
002694 p.000300: 001788 p.000042:
002695 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
002696 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
002697 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
002698 p.000300: Act
002699 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
...

...
003183 p.000300: 001784 p.000042: individual who can be identified a) from those data or, b) from those data and other information which is in the
003184 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
003185 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
003186 p.000300: 001787 p.000042: individual.
003187 p.000300: 001788 p.000042:
003188 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
003189 p.000300: ...
003190 p.000300:
003191 p.000300: Social / Police Officer
003192 p.000300: Searching for indicator officer:
...

...
003275 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
003276 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
003277 p.000300: 001508 p.000036: lives)
003278 p.000300: ...
003279 p.000300:
003280 p.000300: Social / Racial Minority
003281 p.000300: Searching for indicator racial:
003282 p.000300:
003283 p.000300: (return to top)
003284 p.000300: ...
003285 p.000300: 001784 p.000042: individual who can be identified a) from those data or, b) from those data and other information which is in the
003286 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
003287 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
003288 p.000300: 001787 p.000042: individual.
003289 p.000300: 001788 p.000042:
003290 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
003291 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
003292 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
003293 p.000300: Act
003294 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
...

...
003302 p.000300: ...
003303 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
003304 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
003305 p.000300: 001787 p.000042: individual.
003306 p.000300: 001788 p.000042:
003307 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
003308 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
003309 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
003310 p.000300: Act
003311 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
...

...
004075 p.000300: Opinion
004076 p.000300: party Political
004077 p.000300: physically LGBTQ+ Status
004078 p.000300: political Political
004079 p.000300: poor Economic/Poverty
004080 p.000300: racial Racial Minority
004081 p.000300: religious Religion
004082 p.000300: restricted Incarcerated
004083 p.000300: single Marital Status
004084 p.000300:
...

...
004199 p.000300: Philosophical Differences/Difference of
004200 p.000300: Social opinion
004201 p.000300: Opinion
004202 p.000300: Social Police Officer officer
004203 p.000300: Social Property Ownership home
004204 p.000300: Social Racial Minority racial
004205 p.000300: Social Religion religious
004206 p.000300: Social Religion special
004207 p.000300: Social Social social
004208 p.000300: Social Student student
...

Searching for indicator racial minority:

(return to top)
...
003275 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
003276 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
003277 p.000300: 001508 p.000036: lives)
003278 p.000300: ...
003279 p.000300:
003280 p.000300: Social / Racial Minority
003281 p.000300: Searching for indicator racial:
003282 p.000300:
003283 p.000300: (return to top)
003284 p.000300: ...
003285 p.000300: 001784 p.000042: individual who can be identified a) from those data or, b) from those data and other information which is in the
...

...
004075 p.000300: Opinion
004076 p.000300: party Political
004077 p.000300: physically LGBTQ+ Status
004078 p.000300: political Political
004079 p.000300: poor Economic/Poverty
004080 p.000300: racial Racial Minority
004081 p.000300: religious Religion
004082 p.000300: restricted Incarcerated
004083 p.000300: single Marital Status
004084 p.000300:
...

...
004199 p.000300: Philosophical Differences/Difference of
004200 p.000300: Social opinion
004201 p.000300: Opinion
004202 p.000300: Social Police Officer officer
004203 p.000300: Social Property Ownership home
004204 p.000300: Social Racial Minority racial
004205 p.000300: Social Religion religious
004206 p.000300: Social Religion special
004207 p.000300: Social Social social
004208 p.000300: Social Student student
...

Social / Religion

Searching for indicator religion:

(return to top)
...
003293 p.000300: Act
003294 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
003295 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
003296 p.000300: ...
003297 p.000300:
003298 p.000300: Social / Religion
003299 p.000300: Searching for indicator religious:
003300 p.000300:
003301 p.000300: (return to top)
003302 p.000300: ...
003303 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
...

...
004076 p.000300: party Political
004077 p.000300: physically LGBTQ+ Status
004078 p.000300: political Political
004079 p.000300: poor Economic/Poverty
004080 p.000300: racial Racial Minority
004081 p.000300: religious Religion
004082 p.000300: restricted Incarcerated
004083 p.000300: single Marital Status
004084 p.000300:
004085 p.000300: social Social
004086 p.000300: special Religion
004087 p.000300: student Student
004088 p.000300: threat Threat of Stigma
004089 p.000300: undue influence Undue Influence
004090 p.000300: union Trade Union Membership
...

...
004200 p.000300: Social opinion
004201 p.000300: Opinion
004202 p.000300: Social Police Officer officer
004203 p.000300: Social Property Ownership home
004204 p.000300: Social Racial Minority racial
004205 p.000300: Social Religion religious
004206 p.000300: Social Religion special
004207 p.000300: Social Social social
004208 p.000300: Social Student student
004209 p.000300: Social Threat of Stigma threat
004210 p.000300: Social Threat of Violence violence
...

Searching for indicator religious:

(return to top)
...
001328 p.000300:
001329 p.000300: ...
001330 p.000300: 001787 p.000042: individual.
001331 p.000300: 001788 p.000042:
001332 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
001333 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
001334 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
001335 p.000300: Act
001336 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
001337 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
...

...
001724 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
001725 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
001726 p.000300: 001787 p.000042: individual.
001727 p.000300: 001788 p.000042:
001728 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
001729 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
001730 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
001731 p.000300: Act
001732 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
001733 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
...

...
001754 p.000300: ...
001755 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
001756 p.000300: 001787 p.000042: individual.
001757 p.000300: 001788 p.000042:
001758 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
001759 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
001760 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
001761 p.000300: Act
001762 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
001763 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
...

...
002691 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
002692 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
002693 p.000300: 001787 p.000042: individual.
002694 p.000300: 001788 p.000042:
002695 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
002696 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
002697 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
002698 p.000300: Act
002699 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
002700 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
...

...
003286 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
003287 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
003288 p.000300: 001787 p.000042: individual.
003289 p.000300: 001788 p.000042:
003290 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
003291 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
003292 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
003293 p.000300: Act
003294 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
003295 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
003296 p.000300: ...
003297 p.000300:
003298 p.000300: Social / Religion
003299 p.000300: Searching for indicator religious:
003300 p.000300:
003301 p.000300: (return to top)
003302 p.000300: ...
003303 p.000300: 001785 p.000042: possession of, or is likely to come into the possession of, the data controller, and includes any expression of opinion
003304 p.000300: 001786 p.000042: about the individual and any indication of the intentions of the data controller or any other person in respect of the
003305 p.000300: 001787 p.000042: individual.
003306 p.000300: 001788 p.000042:
003307 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
003308 p.000300: 001790 p.000042: his/her political opinions, (c) his/her religious beliefs or other beliefs of a similar nature, (d) whether he/she is
003309 p.000300: 001791 p.000042: a member of a trade union (within the meaning of the [1992 c. 52.] TradeUnion and Labour Relations (Consolidation)
003310 p.000300: Act
003311 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
003312 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
...

...
004076 p.000300: party Political
004077 p.000300: physically LGBTQ+ Status
004078 p.000300: political Political
004079 p.000300: poor Economic/Poverty
004080 p.000300: racial Racial Minority
004081 p.000300: religious Religion
004082 p.000300: restricted Incarcerated
004083 p.000300: single Marital Status
004084 p.000300:
004085 p.000300: social Social
...

...
004114 p.000300: impairment ['cognitive', 'cognitive impairment', 'impaired']
004115 p.000300: influence ['drug']
004116 p.000300: party ['political']
004117 p.000300: political ['party']
004118 p.000300: poor ['economic']
004119 p.000300: religious ['special']
004120 p.000300: single ['engaged']
004121 p.000300: special ['religious']
004122 p.000300: vulnerable ['child', 'children']
004123 p.000300:
004124 p.000300:
004125 p.000300: Trigger Words
...

...
004200 p.000300: Social opinion
004201 p.000300: Opinion
004202 p.000300: Social Police Officer officer
004203 p.000300: Social Property Ownership home
004204 p.000300: Social Racial Minority racial
004205 p.000300: Social Religion religious
004206 p.000300: Social Religion special
004207 p.000300: Social Social social
004208 p.000300: Social Student student
004209 p.000300: Social Threat of Stigma threat
004210 p.000300: Social Threat of Violence violence
...

Searching for indicator special:

(return to top)
...
003311 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
003312 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
003313 p.000300: 001794 p.000042: committed by him/her, the disposal of such proceedings or the sentence of any court in such proceedings.
003314 p.000300: ...
003315 p.000300:
003316 p.000300: Searching for indicator special:
003317 p.000300:
003318 p.000300: (return to top)
003319 p.000300: ...
003320 p.000300: 000696 p.000017: ROs should undertake occasional ad hoc audits of ESRC-funded research. How often this is done will depend on the
...

...
003322 p.000300: 000697 p.000017: of ESRC research undertaken in the RO. In major ROs it is anticipated that a REC should undertake an audit of at
003323 p.000300: least
003324 p.000300: 000698 p.000017: one ESRC research project per year, randomly chosen, or in the case of a large centre, part of a project.
003325 p.000300: 000699 p.000017: Principal investigators and supervisors of students need to know that they should keep good records of their ethics
003326 p.000300: 000700 p.000017: procedures in case they are called to account. This could be a desk-based exercise, asking to see the consent
003327 p.000300: 000701 p.000017: documents, other special permissions and relevant paperwork, information on data storage and data sharing, as well
003328 p.000300: as a
003329 p.000300: 000702 p.000017: note from the principal investigator on changes that have been made, and highlighting specific problems.
003330 p.000300: 000703 p.000017:
003331 p.000300: 000704 p.000017: Where a REC or a designated sub-committee considers that a monitoring report or ad hoc audit has raised significant
...

...
004076 p.000300: party Political
004077 p.000300: physically LGBTQ+ Status
004078 p.000300: political Political
004079 p.000300: poor Economic/Poverty
004080 p.000300: racial Racial Minority
004081 p.000300: religious Religion
004082 p.000300: restricted Incarcerated
004083 p.000300: single Marital Status
004084 p.000300:
004085 p.000300: social Social
004086 p.000300: special Religion
004087 p.000300: student Student
004088 p.000300: threat Threat of Stigma
004089 p.000300: undue influence Undue Influence
004090 p.000300: union Trade Union Membership
...

...
004114 p.000300: impairment ['cognitive', 'cognitive impairment', 'impaired']
004115 p.000300: influence ['drug']
004116 p.000300: party ['political']
004117 p.000300: political ['party']
004118 p.000300: poor ['economic']
004119 p.000300: religious ['special']
004120 p.000300: single ['engaged']
004121 p.000300: special ['religious']
004122 p.000300: vulnerable ['child', 'children']
004123 p.000300:
004124 p.000300:
004125 p.000300: Trigger Words
...

...
004200 p.000300: Social opinion
004201 p.000300: Opinion
004202 p.000300: Social Police Officer officer
004203 p.000300: Social Property Ownership home
004204 p.000300: Social Racial Minority racial
004205 p.000300: Social Religion religious
004206 p.000300: Social Religion special
004207 p.000300: Social Social social
004208 p.000300: Social Student student
004209 p.000300: Social Threat of Stigma threat
004210 p.000300: Social Threat of Violence violence
...

Social / Social

Searching for indicator social:

(return to top)
...
000023 p.000300: 000031 p.000033: Appendix E: Example of ethical information in ESRC proposal 50
000024 p.000300: 000032 p.000033: Example of a completed Ethical Information section on ESRC proposal 50
000025 p.000300: 000033 p.000001: 1
000026 p.000300: 000034 p.000001:
000027 p.000300: 000035 p.000001: Introduction
000028 p.000300: 000036 p.000001: The Economic and Social Research Council (ESRC), in facilitating innovative and high quality research, expects that
000029 p.000300: the
000030 p.000300: 000037 p.000001: research we support will be carried out to a high ethical standard. By establishing the Framework for Research Ethics
000031 p.000300: 000038 p.000001: (FRE) we confirm our commitment to a process of regular review through consultation with the research community
000032 p.000300: and
...

...
000055 p.000300: 001132 p.000027: This might arise for two reasons. First, as is recognised elsewhere (see Tri-Council of Canada, 2002
000056 p.000300: 001133 p.000027: (http://www.pre.ethics.gc.ca/English/policystatement/introduction.cfm)) research may be ‘deliberately and
000057 p.000300: legitimately
000058 p.000300: 001134 p.000027: opposed to the interests of the research participants or organisations’ in cases where the objectives of the
000059 p.000300: research
000060 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
000061 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
000062 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
000063 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
000064 p.000300: on
000065 p.000300: 001139 p.000027: some of the research participants/organisations. Principles of justice should, however, mean that researchers would
000066 p.000300: 001140 p.000027: seek to minimise any personal harm to individuals. Secondly, researchers should also consider how to balance the
000067 p.000300: ...
...

...
000072 p.000300: 001898 p.000045: • Market Research Society (2014). Code of Conduct https://www.mrs.org.uk/standards/code_of_conduct/
000073 p.000300: 001899 p.000045: • Nuffield Council on Bioethics (2009). Dementia: Ethical Issues
000074 p.000300: 001900 p.000045: http://nuffieldbioethics.org/wp-content/uploads/2014/07/Dementia-report-Oct-09.pdf
000075 p.000300: 001901 p.000045: • Respect Project (2004). An EU code of Ethics for socio-economic research
000076 p.000300: www.respectproject.org/code/index.php
000077 p.000300: 001902 p.000045: • Social Research Association (2003). Ethics Guidelines http://the-sra.org.uk/research- ethics/ethics-guidelines/
000078 p.000300: 001903 p.000045: • UK Data Service ethics advice: http://ukdataservice.ac.uk/manage-data/legal-ethical.aspx
000079 p.000300: 001904 p.000045: • UKRIO Code of Practice for Research www.ukrio.org/what-we-do/code-of-practice- for-research
000080 p.000300: 001905 p.000045: • Universities and Colleges Employer Association (2011). Guidance on Health and Safety in Fieldwork
000081 p.000300: ...
...

...
000211 p.000300: 001132 p.000027: This might arise for two reasons. First, as is recognised elsewhere (see Tri-Council of Canada, 2002
000212 p.000300: 001133 p.000027: (http://www.pre.ethics.gc.ca/English/policystatement/introduction.cfm)) research may be ‘deliberately and
000213 p.000300: legitimately
000214 p.000300: 001134 p.000027: opposed to the interests of the research participants or organisations’ in cases where the objectives of the
000215 p.000300: research
000216 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
000217 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
000218 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
000219 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
000220 p.000300: on
000221 p.000300: 001139 p.000027: some of the research participants/organisations. Principles of justice should, however, mean that researchers would
000222 p.000300: 001140 p.000027: seek to minimise any personal harm to individuals. Secondly, researchers should also consider how to balance the
000223 p.000300: ...
...

...
000419 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
000420 p.000300: ...
000421 p.000300:
000422 p.000300: ...
000423 p.000300: 000885 p.000021: arrangements-for-research-ethics-committees/)apply to research involving research participants recruited through the
000424 p.000300: 000886 p.000021: NHS or Social Care services, and such research should be reviewed by a recognised and appropriate REC (see
000425 p.000300: Appendix D).
000426 p.000300: 000887 p.000022: 22
000427 p.000300: 000888 p.000022:
000428 p.000300: 000889 p.000022: In addition, research involving adults who come under the remit of the Mental Capacity Act 2005
...

...
000519 p.000300: 001310 p.000031: receive support to try to help them make their own decision. The potential participant has the right to disagree with
000520 p.000300: ...
000521 p.000300:
000522 p.000300: ...
000523 p.000300: 001326 p.000032: someone from a relevant organisation (such as a local church or charity); but they could also be a professional care
000524 p.000300: 001327 p.000032: worker (and thus could not be a personal consultee), such as the person’s GP, social worker or carer, providing
000525 p.000300: they
000526 p.000300: 001328 p.000032: have no connection with the research project.
000527 p.000300: 001329 p.000032:
000528 p.000300: 001330 p.000032: 2.3 Medical research
...

...
000744 p.000300: the
000745 p.000300: 000496 p.000012: appropriate RO authority. In defining a REC’s mandate and authority, the organisation should make clear the
000746 p.000300: 000497 p.000012: jurisdiction of a REC and its relationship to other relevant bodies or authorities both within and outside the RO.
000747 p.000300: 000498 p.000012:
000748 p.000300: 000499 p.000012: ROs are expected to monitor the operation of RECs for which they are responsible and the decisions they take in
000749 p.000300: 000500 p.000012: relation to social science proposals, according to the standards and guidelines set out here.
000750 p.000300: ...
000751 p.000300:
000752 p.000300: ...
000753 p.000300: 000531 p.000013: Remit and responsibilities of Research Ethics Committees
...

...
000820 p.000300: 001929 p.000046: www.hra.nhs.uk/resources/research-legislation-and-governance/research-governance- frameworks/
000821 p.000300: 001930 p.000046: • Health Research Authority, Standard Operating Procedures for Research Ethics Committees (2015)
000822 p.000300: 001931 p.000046: http://www.hra.nhs.uk/resources/research-legislation-and- governance/standard-operating-procedures/
000823 p.000300: 001932 p.000046: • The Ministry of Defense Research Ethics Committees (MODREC)
000824 p.000300: www.science.mod.uk/engagement/modrec/modrec.aspx
000825 p.000300: 001933 p.000046: • Social Care Research Ethics Committee www.screc.org.uk
000826 p.000300: 001934 p.000046: • Wellcome Trust Biobank Ethics and Governance Framework
000827 p.000300: ...
000828 p.000300:
000829 p.000300: ...
...

...
000858 p.000300: 000136 p.000003: maximise the benefit of the research and minimise potential risk of harm to participants and researchers. All potential
000859 p.000300: ...
000860 p.000300:
000861 p.000300: ...
000862 p.000300: 000499 p.000012: ROs are expected to monitor the operation of RECs for which they are responsible and the decisions they take in
000863 p.000300: 000500 p.000012: relation to social science proposals, according to the standards and guidelines set out here.
000864 p.000300: 000501 p.000012:
000865 p.000300: 000502 p.000012: Independence of Research Ethics Committees
000866 p.000300: 000503 p.000012: ROs are responsible for ensuring that the RECs within their organisation act independently. They should be free from
000867 p.000300: 000504 p.000012: bias and undue influence from the RO in which they are located, from the researchers whose proposals they consider
...

...
001110 p.000300: 000136 p.000003: maximise the benefit of the research and minimise potential risk of harm to participants and researchers. All potential
001111 p.000300: ...
001112 p.000300:
001113 p.000300: ...
001114 p.000300: 000499 p.000012: ROs are expected to monitor the operation of RECs for which they are responsible and the decisions they take in
001115 p.000300: 000500 p.000012: relation to social science proposals, according to the standards and guidelines set out here.
001116 p.000300: 000501 p.000012:
001117 p.000300: 000502 p.000012: Independence of Research Ethics Committees
001118 p.000300: 000503 p.000012: ROs are responsible for ensuring that the RECs within their organisation act independently. They should be free from
001119 p.000300: 000504 p.000012: bias and undue influence from the RO in which they are located, from the researchers whose proposals they consider
...

...
001143 p.000300: Health / HIV/AIDS
001144 p.000300: Searching for indicator hiv:
001145 p.000300:
001146 p.000300: (return to top)
001147 p.000300: ...
001148 p.000300: 001078 p.000026: generate. This is especially pertinent in the context of health-related research. But, in addition, social science
001149 p.000300: 001079 p.000026: raises a wider range of risks that needs to be considered by RECs. These include risk to a participant’s personal
001150 p.000300: 001080 p.000026: social standing, privacy, personal values and beliefs, their links tofamily and the wider community, and their
001151 p.000300: 001081 p.000026: position within occupational settings, as well as the adverse effects of revealing information that relates to illegal,
001152 p.000300: 001082 p.000026: sexual or deviant behaviour. Research, though it may carry no physical risk, can be disruptive and damaging to
001153 p.000300: research
001154 p.000300: 001083 p.000026: participants as individuals or to whole communities or categories of people, such as those with HIV infection.
...

...
001197 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
001198 p.000300: expertise
001199 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
001200 p.000300: research
001201 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
001202 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
001203 p.000300: 000520 p.000012: professional care or counselling, and individuals with specific methodological expertise (for example, quantitative or
001204 p.000300: 000521 p.000012: qualitative methods) relevant to the research they review. A REC should include among its membership people who
001205 p.000300: are
001206 p.000300: 000522 p.000012: collectively familiar with a range of
...

...
001257 p.000300: 001006 p.000024: disclosive when linked with other data within the public domain. The licensing regime provided by ESRC’s Data
001258 p.000300: Service
001259 p.000300: 001007 p.000024: Providers mitigates this risk considerably.
001260 p.000300: 001008 p.000024:
001261 p.000300: 001009 p.000024: There are also specific ethics issues relating to large-scale and longitudinal surveys, such as the Millennium Cohort
001262 p.000300: 001010 p.000024: Study, where social and other health or medical data is secured.
001263 p.000300: 001011 p.000024: The REC should consider issues such as the relation between opting in and out of the study and consent, data
001264 p.000300: security
001265 p.000300: 001012 p.000024: of named files and data and the anonymisation of individual respondents. It should ensure that proposals involving
001266 p.000300: 001013 p.000024: third parties such as
...

...
001271 p.000300: 001073 p.000026: What is the meaning of risk?
001272 p.000300: 001074 p.000026: Proposals should be considered in the context of the risks of the project. Ethics scrutiny should be proportionate to
001273 p.000300: 001075 p.000026: the level of risk and appetite for risk in the specific context of the research proposed and its potential benefits.
001274 p.000300: 001076 p.000026: Risk is often defined by reference to the potential physical or psychologicalharm, discomfort, stress or reputational
001275 p.000300: 001077 p.000026: risk to human participants (and participating groups, organisations and funders) that a research project might
001276 p.000300: 001078 p.000026: generate. This is especially pertinent in the context of health-related research. But, in addition, social science
001277 p.000300: 001079 p.000026: raises a wider range of risks that needs to be considered by RECs. These include risk to a participant’s personal
001278 p.000300: 001080 p.000026: social standing, privacy, personal values and beliefs, their links tofamily and the wider community, and their
001279 p.000300: 001081 p.000026: position within occupational settings, as well as the adverse effects of revealing information that relates to illegal,
001280 p.000300: 001082 p.000026: sexual or deviant behaviour. Research, though it may carry no physical risk, can be disruptive and damaging to
001281 p.000300: research
001282 p.000300: ...
...

...
001316 p.000300: 001367 p.000033: (http://www.hra-decisiontools.org.uk/ethics/).
001317 p.000300: 001368 p.000033:
001318 p.000300: 001369 p.000033: It is expected that a light-touch review by a REC will be able to provide an effective filter for projects that might
001319 p.000300: 001370 p.000033: otherwise have been inappropriately sent to an NHS REC, including those that while involving a physically invasive
001320 p.000300: 001371 p.000033: technique do not do so for clinical purposes. Similarly, the framework provides for review by a REC of large-scale,
001321 p.000300: 001372 p.000033: longitudinal social science studies that may seek information relating to respondents’ personalhealth profile.
001322 p.000300: 001373 p.000033:
001323 p.000300: 001374 p.000033: 2.4 Internet-mediated research
001324 p.000300: 001375 p.000033: Why should internet research receive full ethics review?
001325 p.000300: 001376 p.000033: In a fast developing area RECs may need to involve an independent expert in assessing research proposals that
...

...
001342 p.000300:
001343 p.000300: ...
001344 p.000300: 001900 p.000045: http://nuffieldbioethics.org/wp-content/uploads/2014/07/Dementia-report-Oct-09.pdf
001345 p.000300: 001901 p.000045: • Respect Project (2004). An EU code of Ethics for socio-economic research
001346 p.000300: www.respectproject.org/code/index.php
001347 p.000300: 001902 p.000045: • Social Research Association (2003). Ethics Guidelines http://the-sra.org.uk/research- ethics/ethics-guidelines/
001348 p.000300: 001903 p.000045: • UK Data Service ethics advice: http://ukdataservice.ac.uk/manage-data/legal-ethical.aspx
001349 p.000300: 001904 p.000045: • UKRIO Code of Practice for Research www.ukrio.org/what-we-do/code-of-practice- for-research
001350 p.000300: 001905 p.000045: • Universities and Colleges Employer Association (2011). Guidance on Health and Safety in Fieldwork
001351 p.000300: 001906 p.000045: www.ucea.ac.uk/en/publications/index.cfm/guidance-on-health-and-safety- in-fieldwork
...

...
001374 p.000300: 001929 p.000046: www.hra.nhs.uk/resources/research-legislation-and-governance/research-governance- frameworks/
001375 p.000300: 001930 p.000046: • Health Research Authority, Standard Operating Procedures for Research Ethics Committees (2015)
001376 p.000300: 001931 p.000046: http://www.hra.nhs.uk/resources/research-legislation-and- governance/standard-operating-procedures/
001377 p.000300: 001932 p.000046: • The Ministry of Defense Research Ethics Committees (MODREC)
001378 p.000300: www.science.mod.uk/engagement/modrec/modrec.aspx
001379 p.000300: 001933 p.000046: • Social Care Research Ethics Committee www.screc.org.uk
001380 p.000300: 001934 p.000046: • Wellcome Trust Biobank Ethics and Governance Framework
001381 p.000300: ...
001382 p.000300:
001383 p.000300: ...
001384 p.000300: 001959 p.000046: • The National Archives. Making a freedom of information request
001385 p.000300: 001960 p.000046: http://apps.nationalarchives.gov.uk/foi/requests.htm
001386 p.000300: 001961 p.000047: 47
001387 p.000300: 001962 p.000047:
001388 p.000300: 001963 p.000047: • Freedom of Information (Scotland) Act 2002 www.legislation.gov.uk/asp/2002/13/contents
001389 p.000300: 001964 p.000047: • Health and Social Care Act 2008 www.legislation.gov.uk/ukpga/2008/14/contents
001390 p.000300: 001965 p.000047: • Health and Social Care Act 2012 www.legislation.gov.uk/ukpga/2012/7/contents
001391 p.000300: 001966 p.000047: • Human Rights Act 1998 www.legislation.gov.uk/ukpga/1998/42/contents
001392 p.000300: 001967 p.000047: • Human Tissue Act 2004 www.legislation.gov.uk/ukpga/2004/30/contents
001393 p.000300: 001968 p.000047: • HRA Human Tissue Act 2004-Questions and Answers
001394 p.000300: 001969 p.000047: www.hra.nhs.uk/resources/research-legislation-and-governance/questions-and-answers- the-human-tissue-act-2004/
...

...
001459 p.000300:
001460 p.000300: ...
001461 p.000300: 001075 p.000026: the level of risk and appetite for risk in the specific context of the research proposed and its potential benefits.
001462 p.000300: 001076 p.000026: Risk is often defined by reference to the potential physical or psychologicalharm, discomfort, stress or reputational
001463 p.000300: 001077 p.000026: risk to human participants (and participating groups, organisations and funders) that a research project might
001464 p.000300: 001078 p.000026: generate. This is especially pertinent in the context of health-related research. But, in addition, social science
001465 p.000300: 001079 p.000026: raises a wider range of risks that needs to be considered by RECs. These include risk to a participant’s personal
001466 p.000300: 001080 p.000026: social standing, privacy, personal values and beliefs, their links tofamily and the wider community, and their
001467 p.000300: 001081 p.000026: position within occupational settings, as well as the adverse effects of revealing information that relates to illegal,
001468 p.000300: 001082 p.000026: sexual or deviant behaviour. Research, though it may carry no physical risk, can be disruptive and damaging to
001469 p.000300: research
001470 p.000300: 001083 p.000026: participants as individuals or to whole communities or categories of people, such as those with HIV infection.
...

...
001530 p.000300: ...
001531 p.000300: 000464 p.000011: media, researchers will also need to abide by the regulations set by the data producers subject to such regulations
001532 p.000300: 000465 p.000011: being consistent with legal and ethical guidelines (see also internet-mediated research in FAQs). The potential for
001533 p.000300: 000466 p.000011: identifiabilty of online sources, as well as ethical debates about how privacy is constituted in digital contexts,
001534 p.000300: 000467 p.000011: means that full ethics review may be appropriate for research involving these communities. For example, people often
001535 p.000300: 000468 p.000011: assume that social media sources are public domain, but it is quite likely that some service users – including
001536 p.000300: children
001537 p.000300: 000469 p.000011: – may not understand the implications of what they are doing, and those harvesting data may also uncover illegal
001538 p.000300: images
001539 p.000300: 000470 p.000011: or activities.
...

...
001556 p.000300: ...
001557 p.000300:
001558 p.000300: ...
001559 p.000300: 001076 p.000026: Risk is often defined by reference to the potential physical or psychologicalharm, discomfort, stress or reputational
001560 p.000300: 001077 p.000026: risk to human participants (and participating groups, organisations and funders) that a research project might
001561 p.000300: 001078 p.000026: generate. This is especially pertinent in the context of health-related research. But, in addition, social science
001562 p.000300: 001079 p.000026: raises a wider range of risks that needs to be considered by RECs. These include risk to a participant’s personal
001563 p.000300: 001080 p.000026: social standing, privacy, personal values and beliefs, their links tofamily and the wider community, and their
001564 p.000300: 001081 p.000026: position within occupational settings, as well as the adverse effects of revealing information that relates to illegal,
001565 p.000300: 001082 p.000026: sexual or deviant behaviour. Research, though it may carry no physical risk, can be disruptive and damaging to
001566 p.000300: research
001567 p.000300: 001083 p.000026: participants as individuals or to whole communities or categories of people, such as those with HIV infection.
...

...
001626 p.000300: 000372 p.000009: • Members of the public in a research capacity in research data collection, eg participatory research.
001627 p.000300: 000373 p.000009:
001628 p.000300: 000374 p.000009: • International partners or research undertaken outside of the UK where there may be issues of local practice and
001629 p.000300: 000375 p.000009: political sensitivities. In some cases partnership with a RO in the geographical area involved may prove helpful. It is
001630 p.000300: 000376 p.000009: also necessary to act in accordance with the legal and ethics review requirements in the countries included in the
001631 p.000300: 000377 p.000009: research. Researchers should also consider these issues when undertaking social media research, as most of this is
001632 p.000300: 000378 p.000009: international in scope as data are often drawn from a range of international settings.
001633 p.000300: 000379 p.000009:
001634 p.000300: ...
001635 p.000300:
...

...
001649 p.000300:
001650 p.000300: ...
001651 p.000300: 000857 p.000021: regard to specific schemes involving international collaboration. In many cases it is good practice to collaborate with
001652 p.000300: 000858 p.000021: a local RO or other relevant local experts (eg an NGO). Researchers should also consider these issues when
001653 p.000300: undertaking
001654 p.000300: 000859 p.000021: social media research as most of this is international in scope, as data is often drawn from a range of international
001655 p.000300: 000860 p.000021: settings.
001656 p.000300: 000861 p.000021:
001657 p.000300: 000862 p.000021: In addition, problems may occur where the research involves political sensitivities. Researchers may not be able to
001658 p.000300: 000863 p.000021: obtain permission for further research from authorities in that country unless they respect such sensitivities. Again,
...

...
001667 p.000300: 001132 p.000027: This might arise for two reasons. First, as is recognised elsewhere (see Tri-Council of Canada, 2002
001668 p.000300: 001133 p.000027: (http://www.pre.ethics.gc.ca/English/policystatement/introduction.cfm)) research may be ‘deliberately and
001669 p.000300: legitimately
001670 p.000300: 001134 p.000027: opposed to the interests of the research participants or organisations’ in cases where the objectives of the
001671 p.000300: research
001672 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
001673 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
001674 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
001675 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
001676 p.000300: on
001677 p.000300: 001139 p.000027: some of the research participants/organisations. Principles of justice should, however, mean that researchers would
001678 p.000300: ...
001679 p.000300:
...

...
001776 p.000300: 001886 p.000044: • Council of Europe (1953). Convention for the Protection of Human Rights and Fundamental Freedoms
001777 p.000300: 001887 p.000045: 45
001778 p.000300: 001888 p.000045:
001779 p.000300: ...
001780 p.000300:
001781 p.000300: Social / Access to Social Goods
001782 p.000300: Searching for indicator access:
001783 p.000300:
001784 p.000300: (return to top)
001785 p.000300: ...
...

...
001866 p.000300: ...
001867 p.000300:
001868 p.000300: ...
001869 p.000300: 000770 p.000019:
001870 p.000300: 000771 p.000019: The aim of this training should be to build confidence in individuals to recognise the need for ethics scrutiny with
001871 p.000300: 000772 p.000019: regard to social science research; throughout the lifecycle of the research, which includes the research activity,
001872 p.000300: 000773 p.000019: knowledge exchange and impact activities and further ethical consideration required for potential re-use of data;
001873 p.000300: 000774 p.000019: training should also help individuals understand the RO’s requirements and procedures for review; and to
001874 p.000300: understand how
001875 p.000300: 000775 p.000019: to access additional help, both internal and external to the RO.
...

...
001948 p.000300: 001018 p.000025: (https://www.mrs.org.uk/).
001949 p.000300: 001019 p.000025:
001950 p.000300: 001020 p.000025: Data access through technology
001951 p.000300: 001021 p.000025: Researchers are now making greater use of datasets which have been generated through internet-mediated
001952 p.000300: technology and
001953 p.000300: 001022 p.000025: social media. Researchers need to consider the ethical issues which arise; for example, the interpretation of
001954 p.000300: anonymity
001955 p.000300: 001023 p.000025: and whether participants (eg social media users) would consider data in the public domain to be private, the meaning
001956 p.000300: of
001957 p.000300: 001024 p.000025: informed consent in this context and the important issue of what permissions a researcher has over the data supplied
001958 p.000300: by
001959 p.000300: 001025 p.000025: the data producer (eg Facebook or Twitter data).
001960 p.000300: 001026 p.000025:
001961 p.000300: 001027 p.000025: Data access through biobank
001962 p.000300: 001028 p.000025: Social scientists are also making greater use of data held in a public or private biobank where broadconsent is often
001963 p.000300: 001029 p.000025: utilised. The UK Biobank (http://www.ukbiobank.ac.uk/ethics/) is an example of broad consent and has stringent
001964 p.000300: measures
001965 p.000300: 001030 p.000025: in place to ensure that participants are not identified.
001966 p.000300: 001031 p.000025:
...

...
002052 p.000300: ...
002053 p.000300:
002054 p.000300: ...
002055 p.000300: 002002 p.000048: www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.1001328
002056 p.000300: 002003 p.000048: • Observatory for Responsible Research and Innovation in ICT http://responsible- innovation.org.uk/torrii/
002057 p.000300: 002004 p.000048: • Salway et al (2011) Ethnic diversity and inequality ethical and scientific rigour in social research. Joseph
002058 p.000300: 002005 p.000048: Roundtree Foundation www.jrf.org.uk/publications/ethnic-diversity- social-research
002059 p.000300: 002006 p.000048: • Stevens, Leslie A. and Laurie, Graeme, The Administrative Data Research Centre Scotland: A Scoping Report on
002060 p.000300: the
002061 p.000300: 002007 p.000048: Legal & Ethical Issues Arising from Access & Linkage of Administrative Data (August 27, 2014). Edinburgh School of
002062 p.000300: Law
...

...
002064 p.000300: 002009 p.000048: http://dx.doi.org/10.2139/ssrn.2487971
002065 p.000300: 002010 p.000048:
002066 p.000300: 002011 p.000048:
002067 p.000300: ...
002068 p.000300:
002069 p.000300: Social / Breastfeeding Children
002070 p.000300: Searching for indicator justice:
002071 p.000300:
002072 p.000300: (return to top)
002073 p.000300: ...
002074 p.000300: 001134 p.000027: opposed to the interests of the research participants or organisations’ in cases where the objectives of the
002075 p.000300: research
002076 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
002077 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
002078 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
002079 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
002080 p.000300: on
002081 p.000300: 001139 p.000027: some of the research participants/organisations. Principles of justice should, however, mean that researchers would
002082 p.000300: 001140 p.000027: seek to minimise any personal harm to individuals. Secondly, researchers should also consider how to balance the
002083 p.000300: 001141 p.000027: potential of immediate or short-term risks to research participants against longer-term gains to future beneficiaries.
002084 p.000300: 001142 p.000027: It is the responsibility of the research proposers to make such a case in detail to a REC. In making a decision RECs
002085 p.000300: 001143 p.000027: may wish to consider safety issues and whether participants should have the right of protection.
002086 p.000300: ...
002087 p.000300:
002088 p.000300: Social / Child
002089 p.000300: Searching for indicator child:
002090 p.000300:
002091 p.000300: (return to top)
002092 p.000300: ...
...

...
002130 p.000300: 001987 p.000047: www.legislation.gov.uk/uksi/2013/1198/contents/made
002131 p.000300: 001988 p.000047: • Safeguarding Vulnerable Groups Act 2006 www.legislation.gov.uk/ukpga/2006/47/contents
002132 p.000300: 001989 p.000047: • Protecting of Vulnerable Groups (Scotland) Act 2007 www.legislation.gov.uk/asp/2007/14/contents
002133 p.000300: 001990 p.000047:
002134 p.000300: 001991 p.000047: Other links
002135 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
002136 p.000300: Science
002137 p.000300: 001993 p.000047: Research http://acss.wpengine.com/wp- content/uploads/2013/11/pb3_genericethicsprinciples.pdf
002138 p.000300: 001994 p.000047: • Dockett, S., Perry, B. (2011). Researching with young children: seeking assent. Child Indicators Research,
002139 p.000300: 001995 p.000047: 4(2):231-247, DOI: 10.1007/s12187-010-9084-0 www.victoria.ac.nz/education/pdf/ethics/Docket-Perry-2011.pdf
002140 p.000300: 001996 p.000048: 48
002141 p.000300: 001997 p.000048:
002142 p.000300: 001998 p.000048: • Ipsos-MORI Social Research Institute (2014). Dialogue on data
002143 p.000300: ...
002144 p.000300:
002145 p.000300: Searching for indicator children:
002146 p.000300:
...

...
002187 p.000300: gatekeeper
002188 p.000300: 000351 p.000008: (eg employees recruited through their workplace). Permission for access to other groups, for example participants in a
002189 p.000300: ...
002190 p.000300:
002191 p.000300: ...
002192 p.000300: 000463 p.000011: critical to the research, such as in statements by public officials. For research that involves the use of social
002193 p.000300: 000464 p.000011: media, researchers will also need to abide by the regulations set by the data producers subject to such regulations
002194 p.000300: 000465 p.000011: being consistent with legal and ethical guidelines (see also internet-mediated research in FAQs). The potential for
002195 p.000300: 000466 p.000011: identifiabilty of online sources, as well as ethical debates about how privacy is constituted in digital contexts,
002196 p.000300: 000467 p.000011: means that full ethics review may be appropriate for research involving these communities. For example, people often
002197 p.000300: 000468 p.000011: assume that social media sources are public domain, but it is quite likely that some service users – including
002198 p.000300: children
002199 p.000300: 000469 p.000011: – may not understand the implications of what they are doing, and those harvesting data may also uncover illegal
002200 p.000300: images
002201 p.000300: 000470 p.000011: or activities.
...

...
002214 p.000300: 000935 p.000023: clearance (https://www.gov.uk/government/organisations/disclosure-and-barring-service). The DBS offers
002215 p.000300: organisations a
002216 p.000300: 000936 p.000023: means to check the criminal record of researchers to ensure that they do not have a history that would make them
002217 p.000300: 000937 p.000023: unsuitable for work involving children and vulnerable adults. The responsibility for ensuring that applicants are
002218 p.000300: 000938 p.000023: suitable to work with such groups ultimately rests with individual employers. In some cases other individuals (such as
002219 p.000300: 000939 p.000023: a head teacher or social services manager) may be better placed to provide information on necessary disclosures (see
002220 p.000300: 000940 p.000023: the Safeguarding Vulnerable Groups Act 2006 (http://www.legislation.gov.uk/ukpga/2006/47/contents); Rehabilitation
002221 p.000300: of
002222 p.000300: 000941 p.000023: Offenders Act 1974 (http://www.legislation.gov.uk/ukpga/1974/53); the Rehabilitation of Offenders Act 1974
002223 p.000300: (Exceptions
...

...
002367 p.000300: 001987 p.000047: www.legislation.gov.uk/uksi/2013/1198/contents/made
002368 p.000300: 001988 p.000047: • Safeguarding Vulnerable Groups Act 2006 www.legislation.gov.uk/ukpga/2006/47/contents
002369 p.000300: 001989 p.000047: • Protecting of Vulnerable Groups (Scotland) Act 2007 www.legislation.gov.uk/asp/2007/14/contents
002370 p.000300: 001990 p.000047:
002371 p.000300: 001991 p.000047: Other links
002372 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
002373 p.000300: Science
002374 p.000300: 001993 p.000047: Research http://acss.wpengine.com/wp- content/uploads/2013/11/pb3_genericethicsprinciples.pdf
002375 p.000300: 001994 p.000047: • Dockett, S., Perry, B. (2011). Researching with young children: seeking assent. Child Indicators Research,
002376 p.000300: 001995 p.000047: 4(2):231-247, DOI: 10.1007/s12187-010-9084-0 www.victoria.ac.nz/education/pdf/ethics/Docket-Perry-2011.pdf
002377 p.000300: 001996 p.000048: 48
002378 p.000300: 001997 p.000048:
002379 p.000300: 001998 p.000048: • Ipsos-MORI Social Research Institute (2014). Dialogue on data
002380 p.000300: ...
002381 p.000300: Searching for indicator vulnerable:
002382 p.000300:
002383 p.000300: (return to top)
...

...
002434 p.000300: 000935 p.000023: clearance (https://www.gov.uk/government/organisations/disclosure-and-barring-service). The DBS offers
002435 p.000300: organisations a
002436 p.000300: 000936 p.000023: means to check the criminal record of researchers to ensure that they do not have a history that would make them
002437 p.000300: 000937 p.000023: unsuitable for work involving children and vulnerable adults. The responsibility for ensuring that applicants are
002438 p.000300: 000938 p.000023: suitable to work with such groups ultimately rests with individual employers. In some cases other individuals (such as
002439 p.000300: 000939 p.000023: a head teacher or social services manager) may be better placed to provide information on necessary disclosures (see
002440 p.000300: 000940 p.000023: the Safeguarding Vulnerable Groups Act 2006 (http://www.legislation.gov.uk/ukpga/2006/47/contents); Rehabilitation
002441 p.000300: of
002442 p.000300: 000941 p.000023: Offenders Act 1974 (http://www.legislation.gov.uk/ukpga/1974/53); the Rehabilitation of Offenders Act 1974
002443 p.000300: (Exceptions
...

...
002548 p.000300: 001987 p.000047: www.legislation.gov.uk/uksi/2013/1198/contents/made
002549 p.000300: 001988 p.000047: • Safeguarding Vulnerable Groups Act 2006 www.legislation.gov.uk/ukpga/2006/47/contents
002550 p.000300: 001989 p.000047: • Protecting of Vulnerable Groups (Scotland) Act 2007 www.legislation.gov.uk/asp/2007/14/contents
002551 p.000300: 001990 p.000047:
002552 p.000300: 001991 p.000047: Other links
002553 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
002554 p.000300: Science
002555 p.000300: 001993 p.000047: Research http://acss.wpengine.com/wp- content/uploads/2013/11/pb3_genericethicsprinciples.pdf
002556 p.000300: ...
002557 p.000300:
002558 p.000300: Social / Educational
002559 p.000300: Searching for indicator education:
002560 p.000300:
002561 p.000300: (return to top)
002562 p.000300: ...
...

...
002580 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
002581 p.000300: expertise
002582 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
002583 p.000300: research
002584 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
002585 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
002586 p.000300: 000520 p.000012: professional care or counselling, and individuals with specific methodological expertise (for example, quantitative or
002587 p.000300: 000521 p.000012: qualitative methods) relevant to the research they review. A REC should include among its membership people who
002588 p.000300: are
002589 p.000300: 000522 p.000012: collectively familiar with a range of
...

...
002591 p.000300: ...
002592 p.000300:
002593 p.000300: ...
002594 p.000300: 001990 p.000047:
002595 p.000300: 001991 p.000047: Other links
002596 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
002597 p.000300: Science
002598 p.000300: 001993 p.000047: Research http://acss.wpengine.com/wp- content/uploads/2013/11/pb3_genericethicsprinciples.pdf
002599 p.000300: 001994 p.000047: • Dockett, S., Perry, B. (2011). Researching with young children: seeking assent. Child Indicators Research,
002600 p.000300: 001995 p.000047: 4(2):231-247, DOI: 10.1007/s12187-010-9084-0 www.victoria.ac.nz/education/pdf/ethics/Docket-Perry-2011.pdf
002601 p.000300: 001996 p.000048: 48
002602 p.000300: 001997 p.000048:
002603 p.000300: 001998 p.000048: • Ipsos-MORI Social Research Institute (2014). Dialogue on data
002604 p.000300: 001999 p.000048: www.esrc.ac.uk/_images/Dialogue_on_Data_report_tcm8-30270.pdf
002605 p.000300: ...
002606 p.000300:
002607 p.000300: Searching for indicator educational:
...

...
002609 p.000300: (return to top)
002610 p.000300: ...
002611 p.000300: 001871 p.000044: • Association of Internet Researchers (2012). Ethical decision-making and internet research 2.0
002612 p.000300: 001872 p.000044: http://aoir.org/ethics/
002613 p.000300: 001873 p.000044: • Association of Internet Researchers, Ethics guide http://ethics.aoir.org/index.php?title=Main_Page
002614 p.000300: 001874 p.000044: • Association of Social Anthropologists of the UK and the Commonwealth (ASA) 2011. Ethical Guidelines for good
002615 p.000300: 001875 p.000044: research practice www.theasa.org/ethics.shtml
002616 p.000300: 001876 p.000044: • British Educational Research Association (2012) Ethics and Educational Research
002617 p.000300: 001877 p.000044: www.bera.ac.uk/resources/ethics-and-educational-research
002618 p.000300: 001878 p.000044: • British Psychological Society (2014) Code of Human Research Ethics
002619 p.000300: 001879 p.000044: www.bps.org.uk/publications/policy-and-guidelines/research-guidelines-policy- documents/research-guidelines-poli
002620 p.000300: 001880 p.000044: • British Psychological Society Ethics Guidelines for internet-mediated research (2013)
002621 p.000300: 001881 p.000044: www.bps.org.uk/publications/policy-and-guidelines/research-guidelines-policy- documents/research-guidelines-poli
002622 p.000300: ...
002623 p.000300:
002624 p.000300: Social / Elderly
002625 p.000300: Searching for indicator elderly:
002626 p.000300:
002627 p.000300: (return to top)
002628 p.000300: ...
...

...
002650 p.000300: 001582 p.000038: 38
002651 p.000300: 001583 p.000038:
002652 p.000300: 001584 p.000038: o How, where, and by whom participants will be identified, approached, and recruited?
002653 p.000300: ...
002654 p.000300:
002655 p.000300: Social / Ethnicity
002656 p.000300: Searching for indicator ethnic:
002657 p.000300:
002658 p.000300: (return to top)
002659 p.000300: ...
...

...
002677 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
002678 p.000300: expertise
002679 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
002680 p.000300: research
002681 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
002682 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
002683 p.000300: 000520 p.000012: professional care or counselling, and individuals with specific methodological expertise (for example, quantitative or
002684 p.000300: 000521 p.000012: qualitative methods) relevant to the research they review. A REC should include among its membership people who
002685 p.000300: are
002686 p.000300: 000522 p.000012: collectively familiar with a range of
...

...
002704 p.000300: 001999 p.000048: www.esrc.ac.uk/_images/Dialogue_on_Data_report_tcm8-30270.pdf
002705 p.000300: 002000 p.000048: • Janssens ACJW, Kraft P (2012) Research Conducted Using Data Obtained through Online Communities: Ethical
002706 p.000300: 002001 p.000048: Implications of Methodological Limitations. PLoS Med 9(10): e1001328. doi:10.1371/journal.pmed.1001328
002707 p.000300: 002002 p.000048: www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.1001328
002708 p.000300: 002003 p.000048: • Observatory for Responsible Research and Innovation in ICT http://responsible- innovation.org.uk/torrii/
002709 p.000300: 002004 p.000048: • Salway et al (2011) Ethnic diversity and inequality ethical and scientific rigour in social research. Joseph
002710 p.000300: 002005 p.000048: Roundtree Foundation www.jrf.org.uk/publications/ethnic-diversity- social-research
002711 p.000300: 002006 p.000048: • Stevens, Leslie A. and Laurie, Graeme, The Administrative Data Research Centre Scotland: A Scoping Report on
002712 p.000300: the
002713 p.000300: 002007 p.000048: Legal & Ethical Issues Arising from Access & Linkage of Administrative Data (August 27, 2014). Edinburgh School of
002714 p.000300: Law
...

...
002729 p.000300: 002101 p.000050: pseudonyms. The raw data of each street survey will be collated in password protected computers and accessed by
002730 p.000300: the
002731 p.000300: 002102 p.000050: principal investigator and the two research assistants. The data will then be systematised and stored in two
002732 p.000300: ...
002733 p.000300:
002734 p.000300: Social / Fetus/Neonate
002735 p.000300: Searching for indicator capacity:
002736 p.000300:
002737 p.000300: (return to top)
002738 p.000300: ...
...

...
002765 p.000300: ...
002766 p.000300:
002767 p.000300: ...
002768 p.000300: 000884 p.000021: (http://www.hra.nhs.uk/resources/research-legislation-and-governance/governance-
002769 p.000300: 000885 p.000021: arrangements-for-research-ethics-committees/)apply to research involving research participants recruited through the
002770 p.000300: 000886 p.000021: NHS or Social Care services, and such research should be reviewed by a recognised and appropriate REC (see
002771 p.000300: Appendix D).
002772 p.000300: 000887 p.000022: 22
002773 p.000300: 000888 p.000022:
002774 p.000300: 000889 p.000022: In addition, research involving adults who come under the remit of the Mental Capacity Act 2005
...

...
002955 p.000300: 001978 p.000047: http://wales.gov.uk/dhss/publications/health/mentalhealth/mentalcapacityact/2117019/m caconsente.pdf?lang=en
002956 p.000300: 001979 p.000047: • Adults with Incapacity (Scotland) Act 2000 www.legislation.gov.uk/asp/2000/4/section/10
002957 p.000300: 001980 p.000047: • Adults with Incapacity Act 2000: Code of practice (2010) For practitioners authorised to carry out medical
002958 p.000300: 001981 p.000047: treatment or research under Part 5 of the Act www.scotland.gov.uk/Publications/2010/10/20153801/0
002959 p.000300: ...
002960 p.000300: Social / Gender
002961 p.000300: Searching for indicator gender:
002962 p.000300:
002963 p.000300: (return to top)
002964 p.000300: ...
...

...
002972 p.000300: 000329 p.000008:
002973 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
002974 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
002975 p.000300: ...
002976 p.000300:
002977 p.000300: Social / In Nursing Home
002978 p.000300: Searching for indicator nursing home:
002979 p.000300:
002980 p.000300: (return to top)
002981 p.000300: ...
...

...
002989 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
002990 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
002991 p.000300: 001508 p.000036: lives)
002992 p.000300: ...
002993 p.000300:
002994 p.000300: Social / Incarcerated
002995 p.000300: Searching for indicator restricted:
002996 p.000300:
002997 p.000300: (return to top)
002998 p.000300: ...
...

...
003008 p.000300: 001756 p.000041:
003009 p.000300: 001757 p.000041: Freely-given informed consent: Informed consent entails giving sufficient information about the research and ensuring
003010 p.000300: 001758 p.000041: that there is no explicit or implicit coercion so that prospective participants can make an informed and free decision
003011 p.000300: ...
003012 p.000300:
003013 p.000300: Social / LGBTQ+ Status
003014 p.000300: Searching for indicator physically:
003015 p.000300:
003016 p.000300: (return to top)
003017 p.000300: ...
...

...
003020 p.000300: 001367 p.000033: (http://www.hra-decisiontools.org.uk/ethics/).
003021 p.000300: 001368 p.000033:
003022 p.000300: 001369 p.000033: It is expected that a light-touch review by a REC will be able to provide an effective filter for projects that might
003023 p.000300: 001370 p.000033: otherwise have been inappropriately sent to an NHS REC, including those that while involving a physically invasive
003024 p.000300: 001371 p.000033: technique do not do so for clinical purposes. Similarly, the framework provides for review by a REC of large-scale,
003025 p.000300: 001372 p.000033: longitudinal social science studies that may seek information relating to respondents’ personalhealth profile.
003026 p.000300: 001373 p.000033:
003027 p.000300: 001374 p.000033: 2.4 Internet-mediated research
003028 p.000300: ...
003029 p.000300:
003030 p.000300: Social / Linguistic Proficiency
003031 p.000300: Searching for indicator deceased:
003032 p.000300:
003033 p.000300: (return to top)
003034 p.000300: ...
...

...
003042 p.000300: 000332 p.000008: (http://www.legislation.gov.uk/asp/2006/4/contents) and to the relevant NHS policy requirements for REC reviews. See
003043 p.000300: 000333 p.000008: also HTA Code of Practice (http://www.hta.gov.uk/legislationpoliciesandcodesofpractice/codesofpractice.cfm), NHS
003044 p.000300: 000334 p.000008: Research Scotland (NRS) (http://www.nhsresearchscotland.org.uk/).
003045 p.000300: ...
003046 p.000300:
003047 p.000300: Social / Literacy
003048 p.000300: Searching for indicator literate:
003049 p.000300:
003050 p.000300: (return to top)
003051 p.000300: ...
...

...
003074 p.000300: 001764 p.000042:
003075 p.000300: 001765 p.000042: recorded. In other circumstances, for example telephone interviews, written or witnessed consent may not be
003076 p.000300: possible,
003077 p.000300: ...
003078 p.000300:
003079 p.000300: Social / Marital Status
003080 p.000300: Searching for indicator engaged:
003081 p.000300:
003082 p.000300: (return to top)
003083 p.000300: ...
...

...
003162 p.000300: 000874 p.000021: 1.10 Duplication of submission should be avoided
003163 p.000300: 000875 p.000021: Researchers and ROs should avoid duplication of ethics review. The appropriate review body will be determined by
003164 p.000300: the
003165 p.000300: 000876 p.000021: issues raised by the research, the nature of the data to be obtained and the population of participants to be included
003166 p.000300: 000877 p.000021: in the study. This will apply to both single-discipline research and interdisciplinary research, especially where
003167 p.000300: 000878 p.000021: social and biomedical scientists are working together. For a full review ESRC does not require an organisational REC
003168 p.000300: 000879 p.000021: and a NHS REC to be involved. Researchers should submit proposals either to the REC of their RO or to HRA
003169 p.000300: 000880 p.000021: (http://www.hra.nhs.uk/) for review by NHS RECs across the UK, including the Gene Therapy Advisory Committee
003170 p.000300: (GTAC),
003171 p.000300: 000881 p.000021: and to the Social Care REC.
003172 p.000300: ...
003173 p.000300:
003174 p.000300: Social / Philosophical Differences/Difference of Opinion
003175 p.000300: Searching for indicator opinion:
003176 p.000300:
003177 p.000300: (return to top)
003178 p.000300: ...
003179 p.000300: 001780 p.000042: example), should be completed for all social science research projects. RECs need to confirm that only a light-touch
003180 p.000300: 001781 p.000042: review is justified.
003181 p.000300: 001782 p.000042:
003182 p.000300: 001783 p.000042: Personal data: Under the Data Protection Act 1998 ‘personal data’ is defined as data which relates to a living
003183 p.000300: 001784 p.000042: individual who can be identified a) from those data or, b) from those data and other information which is in the
...

...
003186 p.000300: 001787 p.000042: individual.
003187 p.000300: 001788 p.000042:
003188 p.000300: 001789 p.000042: Under this act, personal data consists of information as to (a) the racial or ethnic origin of the data subject, (b)
003189 p.000300: ...
003190 p.000300:
003191 p.000300: Social / Police Officer
003192 p.000300: Searching for indicator officer:
003193 p.000300:
003194 p.000300: (return to top)
003195 p.000300: ...
...

...
003255 p.000300: 001555 p.000037: question, design or conduct over the course of the research should be notified to the Faculty/School Research Ethics
003256 p.000300: 001556 p.000037: Officer and may require a new application for ethics review.
003257 p.000300: 001557 p.000037:
003258 p.000300: 001558 p.000037: Points to consider when planning research
003259 p.000300: 001559 p.000037:
003260 p.000300: 001560 p.000037: This section aims to facilitate the process of considering ethics around social science research: it is not intended to
003261 p.000300: ...
003262 p.000300:
003263 p.000300: Social / Property Ownership
003264 p.000300: Searching for indicator home:
003265 p.000300:
003266 p.000300: (return to top)
003267 p.000300: ...
...

...
003275 p.000300: 001506 p.000036: covert observation of people in non- public places, use of deception in experimental studies)
003276 p.000300: 001507 p.000036: Will the study involve discussion of sensitive or potentially sensitive topics? (eg sexual activity, drug use, personal
003277 p.000300: 001508 p.000036: lives)
003278 p.000300: ...
003279 p.000300:
003280 p.000300: Social / Racial Minority
003281 p.000300: Searching for indicator racial:
003282 p.000300:
003283 p.000300: (return to top)
003284 p.000300: ...
...

...
003293 p.000300: Act
003294 p.000300: 001792 p.000042: 1992), (e) his/her physical or mental health or condition, (f) his/her sexual life, (g) the commission or alleged
003295 p.000300: 001793 p.000042: commission by him/her of any offence, or (h) any proceedings for any offence committed or alleged to have been
003296 p.000300: ...
003297 p.000300:
003298 p.000300: Social / Religion
003299 p.000300: Searching for indicator religious:
003300 p.000300:
003301 p.000300: (return to top)
003302 p.000300: ...
...

...
003330 p.000300: 000703 p.000017:
003331 p.000300: 000704 p.000017: Where a REC or a designated sub-committee considers that a monitoring report or ad hoc audit has raised significant
003332 p.000300: 000705 p.000017: concerns about the ethics in the conduct of the study, it should request a full and detailed account of the research
003333 p.000300: ...
003334 p.000300:
003335 p.000300: Social / Social
003336 p.000300: Searching for indicator social:
003337 p.000300:
003338 p.000300: (return to top)
003339 p.000300: ...
003340 p.000300: 000031 p.000033: Appendix E: Example of ethical information in ESRC proposal 50
003341 p.000300: 000032 p.000033: Example of a completed Ethical Information section on ESRC proposal 50
003342 p.000300: 000033 p.000001: 1
003343 p.000300: 000034 p.000001:
003344 p.000300: 000035 p.000001: Introduction
003345 p.000300: 000036 p.000001: The Economic and Social Research Council (ESRC), in facilitating innovative and high quality research, expects that
003346 p.000300: the
003347 p.000300: 000037 p.000001: research we support will be carried out to a high ethical standard. By establishing the Framework for Research Ethics
003348 p.000300: 000038 p.000001: (FRE) we confirm our commitment to a process of regular review through consultation with the research community
003349 p.000300: and
003350 p.000300: 000039 p.000001: stakeholders, to ensure ethical standards reflect changing scientific agendas and policy developments.
003351 p.000300: 000040 p.000001:
003352 p.000300: 000041 p.000001: This document establishes key principles and minimum requirements and confirms what we regard as good practice for
003353 p.000300: all
003354 p.000300: 000042 p.000001: social science research. It also identifies requirements for ethics review for the research we are asked to support.
003355 p.000300: 000043 p.000001: Whilst adherence to these requirements is mandatory for ESRC-funded research, the guidance is also a useful tool to
003356 p.000300: 000044 p.000001: other audiences including other funders, research organisations (ROs), Research Ethics Committees (RECs),
003357 p.000300: individual
003358 p.000300: 000045 p.000001: researchers, research teams (including teams with non- academic researchers) and research participants.
...

...
003363 p.000300: 000372 p.000009: • Members of the public in a research capacity in research data collection, eg participatory research.
003364 p.000300: 000373 p.000009:
003365 p.000300: 000374 p.000009: • International partners or research undertaken outside of the UK where there may be issues of local practice and
003366 p.000300: 000375 p.000009: political sensitivities. In some cases partnership with a RO in the geographical area involved may prove helpful. It is
003367 p.000300: 000376 p.000009: also necessary to act in accordance with the legal and ethics review requirements in the countries included in the
003368 p.000300: 000377 p.000009: research. Researchers should also consider these issues when undertaking social media research, as most of this is
003369 p.000300: 000378 p.000009: international in scope as data are often drawn from a range of international settings.
003370 p.000300: 000379 p.000009:
003371 p.000300: 000380 p.000009: • Social media and participants recruited or identified through the internet, in particular when the understanding
003372 p.000300: 000381 p.000009: of privacy in these settings is contentious where sensitive issues are discussed - for example in ‘closed’
003373 p.000300: discussion
003374 p.000300: 000382 p.000009: groups where there is potential for quotes to be identifiable and including where visual images are used.
003375 p.000300: 000383 p.000009:
...

...
003382 p.000300: 000457 p.000011: published minutes of a meeting would not be considered ‘personal data’ requiring ethics review, nor would
003383 p.000300: interviews
003384 p.000300: 000458 p.000011: broadcast on radio or television or online, nor diaries or letters in the public domain.
003385 p.000300: 000459 p.000011:
003386 p.000300: 000460 p.000011: Information provided in forums or spaces on the internet that are intentionally public would be considered ‘in the
003387 p.000300: 000461 p.000011: public domain’, but the public nature of any communication or information on the internet or through social media
003388 p.000300: 000462 p.000011: should always be critically examined, and the identity of individuals protected, wherever possible, unless it is
003389 p.000300: 000463 p.000011: critical to the research, such as in statements by public officials. For research that involves the use of social
003390 p.000300: 000464 p.000011: media, researchers will also need to abide by the regulations set by the data producers subject to such regulations
003391 p.000300: 000465 p.000011: being consistent with legal and ethical guidelines (see also internet-mediated research in FAQs). The potential for
003392 p.000300: 000466 p.000011: identifiabilty of online sources, as well as ethical debates about how privacy is constituted in digital contexts,
003393 p.000300: 000467 p.000011: means that full ethics review may be appropriate for research involving these communities. For example, people often
003394 p.000300: 000468 p.000011: assume that social media sources are public domain, but it is quite likely that some service users – including
003395 p.000300: children
003396 p.000300: 000469 p.000011: – may not understand the implications of what they are doing, and those harvesting data may also uncover illegal
003397 p.000300: images
003398 p.000300: 000470 p.000011: or activities.
...

...
003405 p.000300: the
003406 p.000300: 000496 p.000012: appropriate RO authority. In defining a REC’s mandate and authority, the organisation should make clear the
003407 p.000300: 000497 p.000012: jurisdiction of a REC and its relationship to other relevant bodies or authorities both within and outside the RO.
003408 p.000300: 000498 p.000012:
003409 p.000300: 000499 p.000012: ROs are expected to monitor the operation of RECs for which they are responsible and the decisions they take in
003410 p.000300: 000500 p.000012: relation to social science proposals, according to the standards and guidelines set out here.
003411 p.000300: 000501 p.000012:
003412 p.000300: 000502 p.000012: Independence of Research Ethics Committees
003413 p.000300: 000503 p.000012: ROs are responsible for ensuring that the RECs within their organisation act independently. They should be free from
003414 p.000300: 000504 p.000012: bias and undue influence from the RO in which they are located, from the researchers whose proposals they consider
...

...
003422 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
003423 p.000300: expertise
003424 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
003425 p.000300: research
003426 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
003427 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
003428 p.000300: 000520 p.000012: professional care or counselling, and individuals with specific methodological expertise (for example, quantitative or
003429 p.000300: 000521 p.000012: qualitative methods) relevant to the research they review. A REC should include among its membership people who
003430 p.000300: are
003431 p.000300: 000522 p.000012: collectively familiar with a range of
...

...
003436 p.000300: 000762 p.000018: ethics issues within the research lifecycle). These minimum standards may be achieved
003437 p.000300: 000763 p.000019: 19
003438 p.000300: 000764 p.000019:
003439 p.000300: 000765 p.000019: through programmes at organisational, faculty, departmental, research centre or unit level.
003440 p.000300: 000766 p.000019:
003441 p.000300: 000767 p.000019: We expect social scientists to engage with ethics issues from the start of their research careers. ROs should ensure
003442 p.000300: 000768 p.000019: that social science postgraduate training programmes in the doctoral centres incorporate the range of issues in this
003443 p.000300: 000769 p.000019: framework.
003444 p.000300: 000770 p.000019:
003445 p.000300: 000771 p.000019: The aim of this training should be to build confidence in individuals to recognise the need for ethics scrutiny with
003446 p.000300: 000772 p.000019: regard to social science research; throughout the lifecycle of the research, which includes the research activity,
003447 p.000300: 000773 p.000019: knowledge exchange and impact activities and further ethical consideration required for potential re-use of data;
003448 p.000300: 000774 p.000019: training should also help individuals understand the RO’s requirements and procedures for review; and to
003449 p.000300: understand how
003450 p.000300: 000775 p.000019: to access additional help, both internal and external to the RO.
...

...
003457 p.000300: 000856 p.000021: UK Data Protection Act (http://www.legislation.gov.uk/ukpga/1998/29/contents). These issues need to be borne in
003458 p.000300: mind in
003459 p.000300: 000857 p.000021: regard to specific schemes involving international collaboration. In many cases it is good practice to collaborate with
003460 p.000300: 000858 p.000021: a local RO or other relevant local experts (eg an NGO). Researchers should also consider these issues when
003461 p.000300: undertaking
003462 p.000300: 000859 p.000021: social media research as most of this is international in scope, as data is often drawn from a range of international
003463 p.000300: 000860 p.000021: settings.
003464 p.000300: 000861 p.000021:
003465 p.000300: 000862 p.000021: In addition, problems may occur where the research involves political sensitivities. Researchers may not be able to
003466 p.000300: 000863 p.000021: obtain permission for further research from authorities in that country unless they respect such sensitivities. Again,
...

...
003471 p.000300: 000874 p.000021: 1.10 Duplication of submission should be avoided
003472 p.000300: 000875 p.000021: Researchers and ROs should avoid duplication of ethics review. The appropriate review body will be determined by
003473 p.000300: the
003474 p.000300: 000876 p.000021: issues raised by the research, the nature of the data to be obtained and the population of participants to be included
003475 p.000300: 000877 p.000021: in the study. This will apply to both single-discipline research and interdisciplinary research, especially where
003476 p.000300: 000878 p.000021: social and biomedical scientists are working together. For a full review ESRC does not require an organisational REC
003477 p.000300: 000879 p.000021: and a NHS REC to be involved. Researchers should submit proposals either to the REC of their RO or to HRA
003478 p.000300: 000880 p.000021: (http://www.hra.nhs.uk/) for review by NHS RECs across the UK, including the Gene Therapy Advisory Committee
003479 p.000300: (GTAC),
003480 p.000300: 000881 p.000021: and to the Social Care REC.
003481 p.000300: 000882 p.000021:
003482 p.000300: 000883 p.000021: The Governance Arrangements for Research Ethics Committees (GAfREC)
003483 p.000300: 000884 p.000021: (http://www.hra.nhs.uk/resources/research-legislation-and-governance/governance-
003484 p.000300: 000885 p.000021: arrangements-for-research-ethics-committees/)apply to research involving research participants recruited through the
003485 p.000300: 000886 p.000021: NHS or Social Care services, and such research should be reviewed by a recognised and appropriate REC (see
003486 p.000300: Appendix D).
003487 p.000300: 000887 p.000022: 22
003488 p.000300: 000888 p.000022:
003489 p.000300: 000889 p.000022: In addition, research involving adults who come under the remit of the Mental Capacity Act 2005
...

...
003495 p.000300: 000911 p.000022: in which the original participants are identifiable may violate privacy and the original consent given.
003496 p.000300: 000912 p.000022:
003497 p.000300: 000913 p.000022: UK Data Protection Act 1998 (DPA)
003498 p.000300: 000914 p.000022: It is important that those undertaking research are aware that the Data Protection Principles embodied in the DPA
003499 p.000300: apply
003500 p.000300: 000915 p.000022: to their work. Social science research often involves the processing of personal data. Researchers should be aware
003501 p.000300: that
003502 p.000300: 000916 p.000022: the processing of any information relating to an identifiable living individual constitutes ‘personal data
003503 p.000300: processing’
003504 p.000300: 000917 p.000022: and is subject to the provisions of the Data Protection Act 1998
...

...
003511 p.000300: 000935 p.000023: clearance (https://www.gov.uk/government/organisations/disclosure-and-barring-service). The DBS offers
003512 p.000300: organisations a
003513 p.000300: 000936 p.000023: means to check the criminal record of researchers to ensure that they do not have a history that would make them
003514 p.000300: 000937 p.000023: unsuitable for work involving children and vulnerable adults. The responsibility for ensuring that applicants are
003515 p.000300: 000938 p.000023: suitable to work with such groups ultimately rests with individual employers. In some cases other individuals (such as
003516 p.000300: 000939 p.000023: a head teacher or social services manager) may be better placed to provide information on necessary disclosures (see
003517 p.000300: 000940 p.000023: the Safeguarding Vulnerable Groups Act 2006 (http://www.legislation.gov.uk/ukpga/2006/47/contents); Rehabilitation
003518 p.000300: of
003519 p.000300: 000941 p.000023: Offenders Act 1974 (http://www.legislation.gov.uk/ukpga/1974/53); the Rehabilitation of Offenders Act 1974
003520 p.000300: (Exceptions
...

...
003528 p.000300: 001006 p.000024: disclosive when linked with other data within the public domain. The licensing regime provided by ESRC’s Data
003529 p.000300: Service
003530 p.000300: 001007 p.000024: Providers mitigates this risk considerably.
003531 p.000300: 001008 p.000024:
003532 p.000300: 001009 p.000024: There are also specific ethics issues relating to large-scale and longitudinal surveys, such as the Millennium Cohort
003533 p.000300: 001010 p.000024: Study, where social and other health or medical data is secured.
003534 p.000300: 001011 p.000024: The REC should consider issues such as the relation between opting in and out of the study and consent, data
003535 p.000300: security
003536 p.000300: 001012 p.000024: of named files and data and the anonymisation of individual respondents. It should ensure that proposals involving
003537 p.000300: 001013 p.000024: third parties such as
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003543 p.000300: 001018 p.000025: (https://www.mrs.org.uk/).
003544 p.000300: 001019 p.000025:
003545 p.000300: 001020 p.000025: Data access through technology
003546 p.000300: 001021 p.000025: Researchers are now making greater use of datasets which have been generated through internet-mediated
003547 p.000300: technology and
003548 p.000300: 001022 p.000025: social media. Researchers need to consider the ethical issues which arise; for example, the interpretation of
003549 p.000300: anonymity
003550 p.000300: 001023 p.000025: and whether participants (eg social media users) would consider data in the public domain to be private, the meaning
003551 p.000300: of
003552 p.000300: 001024 p.000025: informed consent in this context and the important issue of what permissions a researcher has over the data supplied
003553 p.000300: by
003554 p.000300: 001025 p.000025: the data producer (eg Facebook or Twitter data).
003555 p.000300: 001026 p.000025:
003556 p.000300: 001027 p.000025: Data access through biobank
003557 p.000300: 001028 p.000025: Social scientists are also making greater use of data held in a public or private biobank where broadconsent is often
003558 p.000300: 001029 p.000025: utilised. The UK Biobank (http://www.ukbiobank.ac.uk/ethics/) is an example of broad consent and has stringent
003559 p.000300: measures
003560 p.000300: 001030 p.000025: in place to ensure that participants are not identified.
003561 p.000300: 001031 p.000025:
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003566 p.000300: 001073 p.000026: What is the meaning of risk?
003567 p.000300: 001074 p.000026: Proposals should be considered in the context of the risks of the project. Ethics scrutiny should be proportionate to
003568 p.000300: 001075 p.000026: the level of risk and appetite for risk in the specific context of the research proposed and its potential benefits.
003569 p.000300: 001076 p.000026: Risk is often defined by reference to the potential physical or psychologicalharm, discomfort, stress or reputational
003570 p.000300: 001077 p.000026: risk to human participants (and participating groups, organisations and funders) that a research project might
003571 p.000300: 001078 p.000026: generate. This is especially pertinent in the context of health-related research. But, in addition, social science
003572 p.000300: 001079 p.000026: raises a wider range of risks that needs to be considered by RECs. These include risk to a participant’s personal
003573 p.000300: 001080 p.000026: social standing, privacy, personal values and beliefs, their links tofamily and the wider community, and their
003574 p.000300: 001081 p.000026: position within occupational settings, as well as the adverse effects of revealing information that relates to illegal,
003575 p.000300: 001082 p.000026: sexual or deviant behaviour. Research, though it may carry no physical risk, can be disruptive and damaging to
003576 p.000300: research
003577 p.000300: 001083 p.000026: participants as individuals or to whole communities or categories of people, such as those with HIV infection.
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003583 p.000300: how
003584 p.000300: 001092 p.000026: different projects carry potentially different risks, and how these can be usefully identified through questions that
003585 p.000300: 001093 p.000026: help anticipate ethics difficulties.
003586 p.000300: 001094 p.000026:
003587 p.000300: 001095 p.000026: Research projects that involve researchers from more than one discipline can include further risk, especially where the
003588 p.000300: 001096 p.000026: research team includes researchers from non-social science areas or non-academic research organisations. For
003589 p.000300: example,
003590 p.000300: 001097 p.000026: social science researchers working with medical researchers who undertake qualitative research as part of a
003591 p.000300: 001098 p.000026: non-clinical trial should be aware of potential risks when working in interdisciplinary research. The form of vigilance
003592 p.000300: 001099 p.000026: required for the management of physical risk used in medical or biomedical research is inappropriate for the
003593 p.000300: management
003594 p.000300: 001100 p.000026: of the social risks that may be present in social science research. RECs should provide guidance and advice to
003595 p.000300: 001101 p.000026: researchers about ways in which risks can be minimised and participants protected from harm, while at the same time
003596 p.000300: 001102 p.000026: offering advice on the prioritisation and different degrees of risk.
003597 p.000300: 001103 p.000026:
003598 p.000300: 001104 p.000026: How do you inform participants of potential risks?
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003603 p.000300: 001132 p.000027: This might arise for two reasons. First, as is recognised elsewhere (see Tri-Council of Canada, 2002
003604 p.000300: 001133 p.000027: (http://www.pre.ethics.gc.ca/English/policystatement/introduction.cfm)) research may be ‘deliberately and
003605 p.000300: legitimately
003606 p.000300: 001134 p.000027: opposed to the interests of the research participants or organisations’ in cases where the objectives of the
003607 p.000300: research
003608 p.000300: 001135 p.000027: are to reveal and critique fundamental economic, political or cultural disadvantage or exploitation. Much social
003609 p.000300: 001136 p.000027: science research has a critical role to play in exploring and questioning social, cultural and economic structures and
003610 p.000300: 001137 p.000027: processes (for example relating to patterns of power and social inequality, and institutional dynamics and regimes that
003611 p.000300: 001138 p.000027: disadvantage some social groups over others, intentionally or not). Such research results may have a negative impact
003612 p.000300: on
003613 p.000300: 001139 p.000027: some of the research participants/organisations. Principles of justice should, however, mean that researchers would
003614 p.000300: 001140 p.000027: seek to minimise any personal harm to individuals. Secondly, researchers should also consider how to balance the
003615 p.000300: 001141 p.000027: potential of immediate or short-term risks to research participants against longer-term gains to future beneficiaries.
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003620 p.000300: 001234 p.000030: 30
003621 p.000300: 001235 p.000030:
003622 p.000300: 001236 p.000030: How do you obtain consent in multi-disciplinary projects?
003623 p.000300: 001237 p.000030: In cases of multi or inter-disciplinary research the definition of informed consent should be given very careful
003624 p.000300: 001238 p.000030: consideration. The relationship between researchers and participants may vary between disciplines or in projects using
003625 p.000300: 001239 p.000030: diverse methodologies. In the case of participatory social science research, consent to participate is seen as an
003626 p.000300: 001240 p.000030: ongoing and
003627 p.000300: 001241 p.000030: open- ended process. Consent here is not simply resolved through the formal signing of aconsent document at the
003628 p.000300: start
003629 p.000300: 001242 p.000030: of research. Instead it is continually open to revision and questioning. Highly formalised or bureaucratic ways of
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003634 p.000300: 001266 p.000030: and warranted.
003635 p.000300: 001267 p.000030:
003636 p.000300: 001268 p.000030: Covert research may be undertaken when it may provide unique forms of evidence that are crucial to the research
003637 p.000300: 001269 p.000030: objectives and methodology or where overt observation might alter the phenomenon being studied. The broad principle
003638 p.000300: 001270 p.000030: should be that covert research should not be undertaken lightly or routinely. It is only justified if important issues
003639 p.000300: 001271 p.000030: are being addressed and if matters of social significance which cannot be uncovered in other ways are likely to be
003640 p.000300: 001272 p.000030: discovered. Normally, social scientists should ensure that research participants are aware of and consent to
003641 p.000300: 001273 p.000030: arrangements made with regard to the management and security of data, the preservation of anonymity, and any risk
003642 p.000300: that
003643 p.000300: 001274 p.000030: might arise during or beyond the project itself, and how these might be minimised or avoided.
003644 p.000300: 001275 p.000030: Disciplinary professional ethics codes may be helpful here. Where the research design is
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003650 p.000300: 001323 p.000032:
003651 p.000300: 001324 p.000032: If no personal consultee can be identified, a nominated consultee should be proposed by the researcher. This is
003652 p.000300: someone
003653 p.000300: 001325 p.000032: who is prepared to be consulted by the researcher, but has no connection with the research project - for example,
003654 p.000300: 001326 p.000032: someone from a relevant organisation (such as a local church or charity); but they could also be a professional care
003655 p.000300: 001327 p.000032: worker (and thus could not be a personal consultee), such as the person’s GP, social worker or carer, providing
003656 p.000300: they
003657 p.000300: 001328 p.000032: have no connection with the research project.
003658 p.000300: 001329 p.000032:
003659 p.000300: 001330 p.000032: 2.3 Medical research
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003665 p.000300: 001360 p.000033: What happens when research is undertaken with medical clinicians?
003666 p.000300: 001361 p.000033: Initially, a light-touch review by the RO’s REC should identify those projects that need to be reviewed by an NHS
003667 p.000300: REC
003668 p.000300: 001362 p.000033: (through HRA (http://www.hra.nhs.uk/resources/applying-to- recs/nhs-rec-central-booking-service-cbs/)) regardless of
003669 p.000300: 001363 p.000033: the level of risk. Such projects will involve any of the following groups: NHS patients and service users and their
003670 p.000300: 001364 p.000033: families (including carers and past patients, if identified through NHS records). Research involving NHS and social
003671 p.000300: 001365 p.000033: care staff who are recruited as research participants by virtue of their professional role may require NHS REC review
003672 p.000300: 001366 p.000033: only if they raise significant ethical issues. Please see the HRA approval decision tool
003673 p.000300: 001367 p.000033: (http://www.hra-decisiontools.org.uk/ethics/).
003674 p.000300: 001368 p.000033:
003675 p.000300: 001369 p.000033: It is expected that a light-touch review by a REC will be able to provide an effective filter for projects that might
003676 p.000300: 001370 p.000033: otherwise have been inappropriately sent to an NHS REC, including those that while involving a physically invasive
003677 p.000300: 001371 p.000033: technique do not do so for clinical purposes. Similarly, the framework provides for review by a REC of large-scale,
003678 p.000300: 001372 p.000033: longitudinal social science studies that may seek information relating to respondents’ personalhealth profile.
003679 p.000300: 001373 p.000033:
003680 p.000300: 001374 p.000033: 2.4 Internet-mediated research
003681 p.000300: 001375 p.000033: Why should internet research receive full ethics review?
003682 p.000300: 001376 p.000033: In a fast developing area RECs may need to involve an independent expert in assessing research proposals that
003683 p.000300: break new
003684 p.000300: 001377 p.000033: ground. Internet research can take place in a range of settings, for example email, chat rooms, web pages, social
003685 p.000300: media
003686 p.000300: 001378 p.000033: and various forms of ‘instant messaging’. These can pose specific ethical dilemmas.
003687 p.000300: 001379 p.000033:
003688 p.000300: 001380 p.000033: For example, what constitutes ‘privacy’ in an online environment? How easy is it to get informed consent from
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003695 p.000300: 001555 p.000037: question, design or conduct over the course of the research should be notified to the Faculty/School Research Ethics
003696 p.000300: 001556 p.000037: Officer and may require a new application for ethics review.
003697 p.000300: 001557 p.000037:
003698 p.000300: 001558 p.000037: Points to consider when planning research
003699 p.000300: 001559 p.000037:
003700 p.000300: 001560 p.000037: This section aims to facilitate the process of considering ethics around social science research: it is not intended to
003701 p.000300: 001561 p.000037: be definitive but may help to highlight potential issues to researchers.
003702 p.000300: 001562 p.000037:
003703 p.000300: 001563 p.000037: Further information on the issues raised in this list can be found in the main body of the framework as well as in
003704 p.000300: 001564 p.000037: ethics guidelines from Learned Societies and subject-specific guides. Please see Appendix D for links to websites that
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003708 p.000300: 001694 p.000040: Biobank (research tissue bank (http://www.nres.nhs.uk/applications/approval-
003709 p.000300: 001695 p.000040: requirements/ethical-review-requirements/research-tissue-banks-biobanks/)): A collection of human tissue or other
003710 p.000300: 001696 p.000040: biological material, which is stored for potential research use beyond the life of a specific project.
003711 p.000300: 001697 p.000040:
003712 p.000300: 001698 p.000040: Biosocial Research: The interdisciplinary interplay between biology, experiences and behaviours over the course of
003713 p.000300: 001699 p.000040: life. This encompasses multi-disciplinary science from the fields of biological, medical and social sciences.
003714 p.000300: 001700 p.000040:
003715 p.000300: 001701 p.000040: Broad consent: has been seen as essential to facilitating biobank research. Participants are asked toconsent to the
003716 p.000300: 001702 p.000040: use of samples and data within a biobank, at the time of collection rather than to a specific project or types of
003717 p.000300: 001703 p.000040: research. Broad consent means consenting to a framework for future research of certain types. Included in this
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003721 p.000300: 001775 p.000042: provide the perspective of the research participant to the REC.
003722 p.000300: 001776 p.000042:
003723 p.000300: 001777 p.000042: Light-touch review: All ESRC-funded research should undergo at least a light-touch review. Light-touch reviews identify
003724 p.000300: 001778 p.000042: those projects where the potential for risk of harm to participants and others affected by the proposed research is
003725 p.000300: 001779 p.000042: minimal. In many cases this is the only ethics review necessary. An RO ethics checklist (see Appendix A for an
003726 p.000300: 001780 p.000042: example), should be completed for all social science research projects. RECs need to confirm that only a light-touch
003727 p.000300: 001781 p.000042: review is justified.
003728 p.000300: 001782 p.000042:
003729 p.000300: 001783 p.000042: Personal data: Under the Data Protection Act 1998 ‘personal data’ is defined as data which relates to a living
003730 p.000300: 001784 p.000042: individual who can be identified a) from those data or, b) from those data and other information which is in the
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003736 p.000300: 001865 p.000044: • ESRC Administrative Data Research Network – Protecting Privacy (2015) http://www.adrn.ac.uk/protecting-
003737 p.000300: privacy
003738 p.000300: 001866 p.000044: • UK Data Service advice on managing and sharing data (2014) http://ukdataservice.ac.uk/manage-data.aspx
003739 p.000300: 001867 p.000044:
003740 p.000300: 001868 p.000044: Professional ethics codes and guidelines
003741 p.000300: 001869 p.000044: • Academy of Social Sciences (2014). Developing Generic Ethics Principles in Social Science Research -
003742 p.000300: 001870 p.000044: http://acss.org.uk/developing-generic-ethics-principles-social- science/
003743 p.000300: 001871 p.000044: • Association of Internet Researchers (2012). Ethical decision-making and internet research 2.0
003744 p.000300: 001872 p.000044: http://aoir.org/ethics/
003745 p.000300: 001873 p.000044: • Association of Internet Researchers, Ethics guide http://ethics.aoir.org/index.php?title=Main_Page
003746 p.000300: 001874 p.000044: • Association of Social Anthropologists of the UK and the Commonwealth (ASA) 2011. Ethical Guidelines for good
003747 p.000300: 001875 p.000044: research practice www.theasa.org/ethics.shtml
003748 p.000300: 001876 p.000044: • British Educational Research Association (2012) Ethics and Educational Research
003749 p.000300: 001877 p.000044: www.bera.ac.uk/resources/ethics-and-educational-research
003750 p.000300: 001878 p.000044: • British Psychological Society (2014) Code of Human Research Ethics
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003755 p.000300: 001898 p.000045: • Market Research Society (2014). Code of Conduct https://www.mrs.org.uk/standards/code_of_conduct/
003756 p.000300: 001899 p.000045: • Nuffield Council on Bioethics (2009). Dementia: Ethical Issues
003757 p.000300: 001900 p.000045: http://nuffieldbioethics.org/wp-content/uploads/2014/07/Dementia-report-Oct-09.pdf
003758 p.000300: 001901 p.000045: • Respect Project (2004). An EU code of Ethics for socio-economic research
003759 p.000300: www.respectproject.org/code/index.php
003760 p.000300: 001902 p.000045: • Social Research Association (2003). Ethics Guidelines http://the-sra.org.uk/research- ethics/ethics-guidelines/
003761 p.000300: 001903 p.000045: • UK Data Service ethics advice: http://ukdataservice.ac.uk/manage-data/legal-ethical.aspx
003762 p.000300: 001904 p.000045: • UKRIO Code of Practice for Research www.ukrio.org/what-we-do/code-of-practice- for-research
003763 p.000300: 001905 p.000045: • Universities and Colleges Employer Association (2011). Guidance on Health and Safety in Fieldwork
003764 p.000300: 001906 p.000045: www.ucea.ac.uk/en/publications/index.cfm/guidance-on-health-and-safety- in-fieldwork
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003769 p.000300: 001929 p.000046: www.hra.nhs.uk/resources/research-legislation-and-governance/research-governance- frameworks/
003770 p.000300: 001930 p.000046: • Health Research Authority, Standard Operating Procedures for Research Ethics Committees (2015)
003771 p.000300: 001931 p.000046: http://www.hra.nhs.uk/resources/research-legislation-and- governance/standard-operating-procedures/
003772 p.000300: 001932 p.000046: • The Ministry of Defense Research Ethics Committees (MODREC)
003773 p.000300: www.science.mod.uk/engagement/modrec/modrec.aspx
003774 p.000300: 001933 p.000046: • Social Care Research Ethics Committee www.screc.org.uk
003775 p.000300: 001934 p.000046: • Wellcome Trust Biobank Ethics and Governance Framework
003776 p.000300: 001935 p.000046: www.wellcome.ac.uk/about-us/publications/reports/biomedical- ethics/wtd003284.htm
003777 p.000300: 001936 p.000046:
003778 p.000300: 001937 p.000046: Relevant legislation
003779 p.000300: 001938 p.000046: • Data Protection Act 1998 www.legislation.gov.uk/ukpga/1998/29/contents
003780 p.000300: 001939 p.000046: • Information Commissioner’s Office (2014). The Guide to Data Protection https://ico.org.uk/media/for-
003781 p.000300: 001940 p.000046: organisations/documents/1607/the_guide_to_data_protection.pdf
003782 p.000300: 001941 p.000046: • Information Commissioner’s Office (2014). Social Networking and online forums- When does the DPA apply?
003783 p.000300: 001942 p.000046: https://ico.org.uk/media/for- organisations/documents/1600/social-networking-and-online-forums-dpa-guidance.pdf
003784 p.000300: 001943 p.000046: • Information Commissioner’s Office (2014). Big Data and data protection
003785 p.000300: 001944 p.000046: http://ico.org.uk/for_organisations/guidance_index/~/media/documents/library/Data_Pr
003786 p.000300: 001945 p.000046: otection/Practical_application/big-data-and-data-protection.pdf
003787 p.000300: 001946 p.000046: • Information Commissioner’s Office (2014). Data Controllers and data processors: what the difference is and
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003792 p.000300: 001959 p.000046: • The National Archives. Making a freedom of information request
003793 p.000300: 001960 p.000046: http://apps.nationalarchives.gov.uk/foi/requests.htm
003794 p.000300: 001961 p.000047: 47
003795 p.000300: 001962 p.000047:
003796 p.000300: 001963 p.000047: • Freedom of Information (Scotland) Act 2002 www.legislation.gov.uk/asp/2002/13/contents
003797 p.000300: 001964 p.000047: • Health and Social Care Act 2008 www.legislation.gov.uk/ukpga/2008/14/contents
003798 p.000300: 001965 p.000047: • Health and Social Care Act 2012 www.legislation.gov.uk/ukpga/2012/7/contents
003799 p.000300: 001966 p.000047: • Human Rights Act 1998 www.legislation.gov.uk/ukpga/1998/42/contents
003800 p.000300: 001967 p.000047: • Human Tissue Act 2004 www.legislation.gov.uk/ukpga/2004/30/contents
003801 p.000300: 001968 p.000047: • HRA Human Tissue Act 2004-Questions and Answers
003802 p.000300: 001969 p.000047: www.hra.nhs.uk/resources/research-legislation-and-governance/questions-and-answers- the-human-tissue-act-2004/
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003806 p.000300: 001987 p.000047: www.legislation.gov.uk/uksi/2013/1198/contents/made
003807 p.000300: 001988 p.000047: • Safeguarding Vulnerable Groups Act 2006 www.legislation.gov.uk/ukpga/2006/47/contents
003808 p.000300: 001989 p.000047: • Protecting of Vulnerable Groups (Scotland) Act 2007 www.legislation.gov.uk/asp/2007/14/contents
003809 p.000300: 001990 p.000047:
003810 p.000300: 001991 p.000047: Other links
003811 p.000300: 001992 p.000047: • Academy of social sciences (2013) Professional Briefings 3: Developing Generic Ethics Principles in Social
003812 p.000300: Science
003813 p.000300: 001993 p.000047: Research http://acss.wpengine.com/wp- content/uploads/2013/11/pb3_genericethicsprinciples.pdf
003814 p.000300: 001994 p.000047: • Dockett, S., Perry, B. (2011). Researching with young children: seeking assent. Child Indicators Research,
003815 p.000300: 001995 p.000047: 4(2):231-247, DOI: 10.1007/s12187-010-9084-0 www.victoria.ac.nz/education/pdf/ethics/Docket-Perry-2011.pdf
003816 p.000300: 001996 p.000048: 48
003817 p.000300: 001997 p.000048:
003818 p.000300: 001998 p.000048: • Ipsos-MORI Social Research Institute (2014). Dialogue on data
003819 p.000300: 001999 p.000048: www.esrc.ac.uk/_images/Dialogue_on_Data_report_tcm8-30270.pdf
003820 p.000300: 002000 p.000048: • Janssens ACJW, Kraft P (2012) Research Conducted Using Data Obtained through Online Communities: Ethical
003821 p.000300: 002001 p.000048: Implications of Methodological Limitations. PLoS Med 9(10): e1001328. doi:10.1371/journal.pmed.1001328
003822 p.000300: 002002 p.000048: www.plosmedicine.org/article/info%3Adoi%2F10.1371%2Fjournal.pmed.1001328
003823 p.000300: 002003 p.000048: • Observatory for Responsible Research and Innovation in ICT http://responsible- innovation.org.uk/torrii/
003824 p.000300: 002004 p.000048: • Salway et al (2011) Ethnic diversity and inequality ethical and scientific rigour in social research. Joseph
003825 p.000300: 002005 p.000048: Roundtree Foundation www.jrf.org.uk/publications/ethnic-diversity- social-research
003826 p.000300: 002006 p.000048: • Stevens, Leslie A. and Laurie, Graeme, The Administrative Data Research Centre Scotland: A Scoping Report on
003827 p.000300: the
003828 p.000300: 002007 p.000048: Legal & Ethical Issues Arising from Access & Linkage of Administrative Data (August 27, 2014). Edinburgh School of
003829 p.000300: Law
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003835 p.000300: 002103 p.000050: password-protected external storage drives, since the digital and visual data generates large storage requirements.
003836 p.000300: 002104 p.000050: Storage drives will be stored in the secure office of the principal investigator.
003837 p.000300: 002105 p.000050:
003838 p.000300: 002106 p.000050: The second stage of data collection involves focus group workshops related to two of the selected streets. The
003839 p.000300: 002107 p.000050: workshops will be arranged with respective local authorities, traders and local organisations to understand how these
003840 p.000300: 002108 p.000050: streets are organized, managed and imagined. For this stage of research I will work alongside 'Social Life', a social
003841 p.000300: 002109 p.000050: enterprise created by the Young Foundation. We will establish a specific ethics protocol for this stage of research,
003842 p.000300: 002110 p.000050: drawing on Social Life's extensive expertise in working with local authorities, community organisations and frontline
003843 p.000300: 002111 p.000050: agencies, and submitting the protocol for review to the LSE Research Ethics Committee. Time has been allocated
003844 p.000300: prior to
003845 p.000300: 002112 p.000050: the workshops, to meet with relevant authorities and associations to develop appropriate workshop forums, and to
003846 p.000300: review
003847 p.000300: 002113 p.000050: approaches to participation, confidentiality and dissemination. Feedback on workshop findings will be offered to local
003848 p.000300: 002114 p.000050: authorities and associations through a summary report. More generally, participants will be able to view project
003849 p.000300: ...
003850 p.000300:
003851 p.000300: Social / Student
003852 p.000300: Searching for indicator student:
003853 p.000300:
003854 p.000300: (return to top)
003855 p.000300: ...
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003936 p.000300: 001469 p.000035: An appropriate checklist should be completed before potential participants are approached to take part in any
003937 p.000300: research.
003938 p.000300: 001470 p.000035:
003939 p.000300: ...
003940 p.000300:
003941 p.000300: Social / Threat of Stigma
003942 p.000300: Searching for indicator threat:
003943 p.000300:
003944 p.000300: (return to top)
003945 p.000300: ...
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003953 p.000300: 000906 p.000022: databases. Periodic audit of data storage arrangements at all levels is likely to be necessary to ensure compliance
003954 p.000300: 000907 p.000022: with both legal obligations and good research practice. Regular staff training is another avenue for ensuring
003955 p.000300: 000908 p.000022: appropriate practice.
003956 p.000300: ...
003957 p.000300:
003958 p.000300: Social / Threat of Violence
003959 p.000300: Searching for indicator violence:
003960 p.000300:
003961 p.000300: (return to top)
003962 p.000300: ...
...

...
003970 p.000300: 000329 p.000008:
003971 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003972 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
003973 p.000300: ...
003974 p.000300:
003975 p.000300: Social / Victim of Abuse
003976 p.000300: Searching for indicator abuse:
003977 p.000300:
003978 p.000300: (return to top)
003979 p.000300: ...
...

...
003987 p.000300: 000329 p.000008:
003988 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003989 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
003990 p.000300: ...
003991 p.000300:
003992 p.000300: Social / Women
003993 p.000300: Searching for indicator women:
003994 p.000300:
003995 p.000300: (return to top)
003996 p.000300: ...
...

...
004005 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
004006 p.000300: expertise
004007 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
004008 p.000300: research
004009 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
004010 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
004011 p.000300: ...
004012 p.000300:
004013 p.000300: Social / Youth/Minors
004014 p.000300: Searching for indicator minor:
004015 p.000300:
004016 p.000300: (return to top)
004017 p.000300: ...
...

...
004028 p.000300: ...
004029 p.000300: Appendix
004030 p.000300: Indicator List
004031 p.000300: Indicator Vulnerability
004032 p.000300: abuse Victim of Abuse
004033 p.000300: access Access to Social Goods
004034 p.000300: age Diminished Autonomy
004035 p.000300: authority Relationship to Authority
004036 p.000300: autonomy Impaired Autonomy
004037 p.000300: cadavers Cadavers
...

...
004080 p.000300: racial Racial Minority
004081 p.000300: religious Religion
004082 p.000300: restricted Incarcerated
004083 p.000300: single Marital Status
004084 p.000300:
004085 p.000300: social Social
004086 p.000300: special Religion
004087 p.000300: student Student
004088 p.000300: threat Threat of Stigma
004089 p.000300: undue influence Undue Influence
...

...
004176 p.000300: Health Physically Ill illness
004177 p.000300: Political Illegal Activity illegal
004178 p.000300: Political Political party
004179 p.000300: Political Political political
004180 p.000300: Political Trade Union Membership union
004181 p.000300: Social Access to Social Goods access
004182 p.000300: Social Breastfeeding Children justice
004183 p.000300: Social Child child
004184 p.000300: Social Child children
004185 p.000300: Social Child vulnerable
004186 p.000300: Social Educational education
004187 p.000300: Social Educational educational
004188 p.000300: Social Elderly elderly
004189 p.000300: Social Ethnicity ethnic
004190 p.000300: Social Fetus/Neonate capacity
004191 p.000300: Social Gender gender
004192 p.000300: Social In Nursing Home nursing home
004193 p.000300: Social Incarcerated restricted
004194 p.000300: Social LGBTQ+ Status physically
004195 p.000300: Social Linguistic Proficiency deceased
004196 p.000300: Social Literacy literate
004197 p.000300: Social Marital Status engaged
004198 p.000300: Social Marital Status single
004199 p.000300: Philosophical Differences/Difference of
004200 p.000300: Social opinion
004201 p.000300: Opinion
004202 p.000300: Social Police Officer officer
004203 p.000300: Social Property Ownership home
004204 p.000300: Social Racial Minority racial
004205 p.000300: Social Religion religious
004206 p.000300: Social Religion special
004207 p.000300: Social Social social
004208 p.000300: Social Student student
004209 p.000300: Social Threat of Stigma threat
004210 p.000300: Social Threat of Violence violence
004211 p.000300: Social Victim of Abuse abuse
004212 p.000300: Social Women women
004213 p.000300: Social Youth/Minors minor
004214 p.000300:
004215 p.000300:
004216 p.000300: Document Match Map - Line Numbers where Indicators and Trigger Words Appear
004217 p.000300: Refer to 5A71EB3B079C385D77612EE96779F088
...

Social / Student

Searching for indicator student:

(return to top)
...
002144 p.000300:
002145 p.000300: Searching for indicator children:
002146 p.000300:
002147 p.000300: (return to top)
002148 p.000300: ...
002149 p.000300: 000282 p.000006: Many student projects may require only a light-touch review. However, this cannot be assumed; projects, including
002150 p.000300: 000283 p.000006: student projects, which involve more than minimal risk, should receive a full REC review. Some RECs have facilitated
002151 p.000300: 000284 p.000006: ethics approval for research
002152 p.000300: 000285 p.000007: 7
002153 p.000300: 000286 p.000007:
002154 p.000300: 000287 p.000007: with potentially vulnerable people by establishing ethics protocols for commonly occurring situations, such as research
...

...
002380 p.000300: ...
002381 p.000300: Searching for indicator vulnerable:
002382 p.000300:
002383 p.000300: (return to top)
002384 p.000300: ...
002385 p.000300: 000282 p.000006: Many student projects may require only a light-touch review. However, this cannot be assumed; projects, including
002386 p.000300: 000283 p.000006: student projects, which involve more than minimal risk, should receive a full REC review. Some RECs have facilitated
002387 p.000300: 000284 p.000006: ethics approval for research
002388 p.000300: 000285 p.000007: 7
002389 p.000300: 000286 p.000007:
002390 p.000300: 000287 p.000007: with potentially vulnerable people by establishing ethics protocols for commonly occurring situations, such as research
...

...
003846 p.000300: review
003847 p.000300: 002113 p.000050: approaches to participation, confidentiality and dissemination. Feedback on workshop findings will be offered to local
003848 p.000300: 002114 p.000050: authorities and associations through a summary report. More generally, participants will be able to view project
003849 p.000300: ...
003850 p.000300:
003851 p.000300: Social / Student
003852 p.000300: Searching for indicator student:
003853 p.000300:
003854 p.000300: (return to top)
003855 p.000300: ...
003856 p.000300: 000009 p.000011: 11
003857 p.000300: 000010 p.000011: 1.5 ROs should establish procedures for monitoring research 18
003858 p.000300: 000011 p.000011: 1.6 Complaints, appeals and conflict of interest procedures should be in place 19
003859 p.000300: 000012 p.000011: 1.7 Arrangements should be made for training researchers, research students, supervisors and member of RECs
003860 p.000300: 000013 p.000019: 19
003861 p.000300: 000014 p.000019: 1.8 Student research and ethics review 20
003862 p.000300: 000015 p.000019: 1.9 Arrangements should be made for collaborative research 21
003863 p.000300: 000016 p.000019: 1.10 Duplication of submission should be avoided 22
003864 p.000300: 000017 p.000019: 1.11 Legal and data protection requirements should be met 23
003865 p.000300: 000018 p.000019: 2. Frequently asked questions 27
...

...
003869 p.000300: 000277 p.000006: • a published timetable of the maximum time necessary for undertaking light-touch and full ethics reviews.
003870 p.000300: 000278 p.000006:
003871 p.000300: 000279 p.000006: Types of review
003872 p.000300: 000280 p.000006: A light-touch review, when fully justified, identifies projects where the actual or potential risk of harm to
003873 p.000300: 000281 p.000006: participants (and others affected by the proposed research) is minimal.
003874 p.000300: 000282 p.000006: Many student projects may require only a light-touch review. However, this cannot be assumed; projects, including
003875 p.000300: 000283 p.000006: student projects, which involve more than minimal risk, should receive a full REC review. Some RECs have facilitated
003876 p.000300: 000284 p.000006: ethics approval for research
003877 p.000300: 000285 p.000007: 7
003878 p.000300: 000286 p.000007:
003879 p.000300: 000287 p.000007: with potentially vulnerable people by establishing ethics protocols for commonly occurring situations, such as research
...

...
003883 p.000300: 000600 p.000014:
003884 p.000300: 000601 p.000014:
003885 p.000300: 000602 p.000015: 15
003886 p.000300: 000603 p.000015:
003887 p.000300: 000604 p.000015: Ethics review application forms and protocols
003888 p.000300: 000605 p.000015: Research proposals, including student proposals, submitted for review to a REC might be expected to include most,
003889 p.000300: but
003890 p.000300: 000606 p.000015: not necessarily all, of the following information in a way that is understandable to a lay member, though the precise
003891 p.000300: 000607 p.000015: way this is done is left to the discretion of the RO:
003892 p.000300: 000608 p.000015:
...

...
003897 p.000300: 000781 p.000019: • research managers, and heads of research groups, centres or departments
003898 p.000300: 000782 p.000019: • members of local and organisation-wide RECs, including lay members
003899 p.000300: 000783 p.000019: • postgraduate students in local ethics review requirements (in addition to any more generalethics training)
003900 p.000300: 000784 p.000019: • undergraduate students whose projects may require ethics review.
003901 p.000300: 000785 p.000019:
003902 p.000300: 000786 p.000019: 1.8 Student research and ethics review
003903 p.000300: 000787 p.000019: The same principles should apply to student research as to all other research. The ESRC recommends that ROs
003904 p.000300: should
003905 p.000300: 000788 p.000019: establish procedures specifically for reviewing research projects undertaken by undergraduate students and students
003906 p.000300: on
003907 p.000300: 000789 p.000019: taught postgraduate courses. Student research poses particular challenges in relation toethics review because of the
003908 p.000300: 000790 p.000019: large numbers, short timescales and limited scope of the projects involved.
003909 p.000300: 000791 p.000019: Supervisors of research postgraduate students should work closely with their students in considering ethical aspects of
003910 p.000300: 000792 p.000019: proposed research in keeping with this framework.
003911 p.000300: 000793 p.000019:
003912 p.000300: 000794 p.000019: The same high ethical standards should be expected in student research. It cannot be assumed that all students’
003913 p.000300: 000795 p.000019: projects involve minimal risk. Student projects involving research potentially requiring a fullethics review may need
003914 p.000300: 000796 p.000019: careful consideration.
003915 p.000300: 000797 p.000019: However, in many cases student research may be managed at school/department level and overseen by a light-touch
003916 p.000300: 000798 p.000019: departmental ethics committee using an initial checklist.
003917 p.000300: 000799 p.000019: Established protocols for commonly occurring research, as mentioned previously, can expedite the review process. It
003918 p.000300: 000800 p.000019: should be made clear to potential research participants that the study is a student project. ROs also need to ensure
003919 p.000300: 000801 p.000019: that students are not exposed to undue risk in conducting their research.
003920 p.000300: 000802 p.000019:
003921 p.000300: 000803 p.000019: The ESRC already provides Guidance and information for ESRC-funded students
003922 p.000300: 000804 p.000019: (http://www.esrc.ac.uk/funding-and-guidance/postgraduates/esrc-students/index.aspx). These guidelines include
...

...
003928 p.000300: 001462 p.000035: Organisations (ROs) will have their own checklist and procedures in place for submitting proposals to their Research
003929 p.000300: 001463 p.000035: Ethics Committees.
003930 p.000300: 001464 p.000035:
003931 p.000300: 001465 p.000035: Before completing a checklist please refer to the appropriate RO’s Code of Practice on ethical standards for
003932 p.000300: research
003933 p.000300: 001466 p.000035: involving human participants. The principal investigator or (where the principal investigator is a student) the
003934 p.000300: 001467 p.000035: supervisor, is responsible for exercising appropriate professional judgment in determining the ethics review required.
003935 p.000300: 001468 p.000035:
003936 p.000300: 001469 p.000035: An appropriate checklist should be completed before potential participants are approached to take part in any
003937 p.000300: research.
...

...
004082 p.000300: restricted Incarcerated
004083 p.000300: single Marital Status
004084 p.000300:
004085 p.000300: social Social
004086 p.000300: special Religion
004087 p.000300: student Student
004088 p.000300: threat Threat of Stigma
004089 p.000300: undue influence Undue Influence
004090 p.000300: union Trade Union Membership
004091 p.000300: usage Laboratory Staff
...

...
004203 p.000300: Social Property Ownership home
004204 p.000300: Social Racial Minority racial
004205 p.000300: Social Religion religious
004206 p.000300: Social Religion special
004207 p.000300: Social Social social
004208 p.000300: Social Student student
004209 p.000300: Social Threat of Stigma threat
004210 p.000300: Social Threat of Violence violence
004211 p.000300: Social Victim of Abuse abuse
004212 p.000300: Social Women women
...

Social / Threat of Stigma

Searching for indicator stigma:

(return to top)
...
003936 p.000300: 001469 p.000035: An appropriate checklist should be completed before potential participants are approached to take part in any
003937 p.000300: research.
003938 p.000300: 001470 p.000035:
003939 p.000300: ...
003940 p.000300:
003941 p.000300: Social / Threat of Stigma
003942 p.000300: Searching for indicator threat:
003943 p.000300:
003944 p.000300: (return to top)
003945 p.000300: ...
003946 p.000300: 000899 p.000022:
...

...
004083 p.000300: single Marital Status
004084 p.000300:
004085 p.000300: social Social
004086 p.000300: special Religion
004087 p.000300: student Student
004088 p.000300: threat Threat of Stigma
004089 p.000300: undue influence Undue Influence
004090 p.000300: union Trade Union Membership
004091 p.000300: usage Laboratory Staff
004092 p.000300: violence Threat of Violence
004093 p.000300: vulnerable Child
004094 p.000300: welfare Welfare Recipient
004095 p.000300: women Women
004096 p.000300:
...

...
004204 p.000300: Social Racial Minority racial
004205 p.000300: Social Religion religious
004206 p.000300: Social Religion special
004207 p.000300: Social Social social
004208 p.000300: Social Student student
004209 p.000300: Social Threat of Stigma threat
004210 p.000300: Social Threat of Violence violence
004211 p.000300: Social Victim of Abuse abuse
004212 p.000300: Social Women women
004213 p.000300: Social Youth/Minors minor
004214 p.000300:
...

Searching for indicator threat:

(return to top)
...
003936 p.000300: 001469 p.000035: An appropriate checklist should be completed before potential participants are approached to take part in any
003937 p.000300: research.
003938 p.000300: 001470 p.000035:
003939 p.000300: ...
003940 p.000300:
003941 p.000300: Social / Threat of Stigma
003942 p.000300: Searching for indicator threat:
003943 p.000300:
003944 p.000300: (return to top)
003945 p.000300: ...
003946 p.000300: 000899 p.000022:
003947 p.000300: 000900 p.000022: 1.11 Legal and data protection requirements should be met
003948 p.000300: 000901 p.000022: Data requirements
003949 p.000300: 000902 p.000022: ROs should ensure that appropriate practical arrangements are in place to maintain the integrity and security of
003950 p.000300: 000903 p.000022: research data. Clear direction should be provided on where responsibilities reside in all these areas. Researchers may
003951 p.000300: 000904 p.000022: not appreciate the threat to data integrity and security presented by routinely-used collection and storage methods,
003952 p.000300: 000905 p.000022: such as computer files on hard drives and similar devices, portable computing equipment and memory, email and
003953 p.000300: 000906 p.000022: databases. Periodic audit of data storage arrangements at all levels is likely to be necessary to ensure compliance
003954 p.000300: 000907 p.000022: with both legal obligations and good research practice. Regular staff training is another avenue for ensuring
003955 p.000300: 000908 p.000022: appropriate practice.
003956 p.000300: ...
003957 p.000300:
003958 p.000300: Social / Threat of Violence
003959 p.000300: Searching for indicator violence:
003960 p.000300:
003961 p.000300: (return to top)
003962 p.000300: ...
...

...
004083 p.000300: single Marital Status
004084 p.000300:
004085 p.000300: social Social
004086 p.000300: special Religion
004087 p.000300: student Student
004088 p.000300: threat Threat of Stigma
004089 p.000300: undue influence Undue Influence
004090 p.000300: union Trade Union Membership
004091 p.000300: usage Laboratory Staff
004092 p.000300: violence Threat of Violence
004093 p.000300: vulnerable Child
004094 p.000300: welfare Welfare Recipient
004095 p.000300: women Women
004096 p.000300:
...

...
004204 p.000300: Social Racial Minority racial
004205 p.000300: Social Religion religious
004206 p.000300: Social Religion special
004207 p.000300: Social Social social
004208 p.000300: Social Student student
004209 p.000300: Social Threat of Stigma threat
004210 p.000300: Social Threat of Violence violence
004211 p.000300: Social Victim of Abuse abuse
004212 p.000300: Social Women women
004213 p.000300: Social Youth/Minors minor
004214 p.000300:
...

Social / Threat of Violence

Searching for indicator violence:

(return to top)
...
001180 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001181 p.000300: 000323 p.000008: 8
001182 p.000300: 000324 p.000008:
001183 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001184 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001185 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001186 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001187 p.000300: 000329 p.000008:
001188 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001189 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
001434 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001435 p.000300: 000323 p.000008: 8
001436 p.000300: 000324 p.000008:
001437 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001438 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001439 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001440 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001441 p.000300: 000329 p.000008:
001442 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001443 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
001519 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001520 p.000300: 000323 p.000008: 8
001521 p.000300: 000324 p.000008:
001522 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001523 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001524 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001525 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001526 p.000300: 000329 p.000008:
001527 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001528 p.000300: ...
...

...
001612 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001613 p.000300: 000323 p.000008: 8
001614 p.000300: 000324 p.000008:
001615 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001616 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001617 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001618 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001619 p.000300: 000329 p.000008:
001620 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001621 p.000300: ...
...

...
002660 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
002661 p.000300: 000323 p.000008: 8
002662 p.000300: 000324 p.000008:
002663 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
002664 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
002665 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
002666 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
002667 p.000300: 000329 p.000008:
002668 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
002669 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
002965 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
002966 p.000300: 000323 p.000008: 8
002967 p.000300: 000324 p.000008:
002968 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
002969 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
002970 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
002971 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
002972 p.000300: 000329 p.000008:
002973 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
002974 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
003032 p.000300:
003033 p.000300: (return to top)
003034 p.000300: ...
003035 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003036 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003037 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003038 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003039 p.000300: 000329 p.000008:
003040 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003041 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
003953 p.000300: 000906 p.000022: databases. Periodic audit of data storage arrangements at all levels is likely to be necessary to ensure compliance
003954 p.000300: 000907 p.000022: with both legal obligations and good research practice. Regular staff training is another avenue for ensuring
003955 p.000300: 000908 p.000022: appropriate practice.
003956 p.000300: ...
003957 p.000300:
003958 p.000300: Social / Threat of Violence
003959 p.000300: Searching for indicator violence:
003960 p.000300:
003961 p.000300: (return to top)
003962 p.000300: ...
003963 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
003964 p.000300: 000323 p.000008: 8
003965 p.000300: 000324 p.000008:
003966 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003967 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003968 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003969 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003970 p.000300: 000329 p.000008:
003971 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003972 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
003980 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
003981 p.000300: 000323 p.000008: 8
003982 p.000300: 000324 p.000008:
003983 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003984 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003985 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003986 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003987 p.000300: 000329 p.000008:
003988 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003989 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
004087 p.000300: student Student
004088 p.000300: threat Threat of Stigma
004089 p.000300: undue influence Undue Influence
004090 p.000300: union Trade Union Membership
004091 p.000300: usage Laboratory Staff
004092 p.000300: violence Threat of Violence
004093 p.000300: vulnerable Child
004094 p.000300: welfare Welfare Recipient
004095 p.000300: women Women
004096 p.000300:
...

...
004205 p.000300: Social Religion religious
004206 p.000300: Social Religion special
004207 p.000300: Social Social social
004208 p.000300: Social Student student
004209 p.000300: Social Threat of Stigma threat
004210 p.000300: Social Threat of Violence violence
004211 p.000300: Social Victim of Abuse abuse
004212 p.000300: Social Women women
004213 p.000300: Social Youth/Minors minor
004214 p.000300:
...

Social / Victim of Abuse

Searching for indicator abuse:

(return to top)
...
001180 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001181 p.000300: 000323 p.000008: 8
001182 p.000300: 000324 p.000008:
001183 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001184 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001185 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001186 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001187 p.000300: 000329 p.000008:
001188 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001189 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
001434 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001435 p.000300: 000323 p.000008: 8
001436 p.000300: 000324 p.000008:
001437 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001438 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001439 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001440 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001441 p.000300: 000329 p.000008:
001442 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001443 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
001519 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001520 p.000300: 000323 p.000008: 8
001521 p.000300: 000324 p.000008:
001522 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001523 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001524 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001525 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001526 p.000300: 000329 p.000008:
001527 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001528 p.000300: ...
...

...
001612 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
001613 p.000300: 000323 p.000008: 8
001614 p.000300: 000324 p.000008:
001615 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
001616 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
001617 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
001618 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
001619 p.000300: 000329 p.000008:
001620 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
001621 p.000300: ...
...

...
002660 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
002661 p.000300: 000323 p.000008: 8
002662 p.000300: 000324 p.000008:
002663 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
002664 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
002665 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
002666 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
002667 p.000300: 000329 p.000008:
002668 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
002669 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
002965 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
002966 p.000300: 000323 p.000008: 8
002967 p.000300: 000324 p.000008:
002968 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
002969 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
002970 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
002971 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
002972 p.000300: 000329 p.000008:
002973 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
002974 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
003032 p.000300:
003033 p.000300: (return to top)
003034 p.000300: ...
003035 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003036 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003037 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003038 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003039 p.000300: 000329 p.000008:
003040 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003041 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
003963 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
003964 p.000300: 000323 p.000008: 8
003965 p.000300: 000324 p.000008:
003966 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003967 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003968 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003969 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003970 p.000300: 000329 p.000008:
003971 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003972 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
003973 p.000300: ...
003974 p.000300:
003975 p.000300: Social / Victim of Abuse
003976 p.000300: Searching for indicator abuse:
003977 p.000300:
003978 p.000300: (return to top)
003979 p.000300: ...
003980 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
003981 p.000300: 000323 p.000008: 8
003982 p.000300: 000324 p.000008:
003983 p.000300: 000325 p.000008: (http://www.legislation.gov.uk/asp/2000/4/section/10).
003984 p.000300: 000326 p.000008: • Potentially sensitive topics, for example participants’ sexual behaviour, illegal or political behaviour,
003985 p.000300: 000327 p.000008: experience of violence, abuse or exploitation, mental health, their personal or family lives, or their gender or ethnic
003986 p.000300: 000328 p.000008: status. Elite interviews may also fall into this category.
003987 p.000300: 000329 p.000008:
003988 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003989 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
...

...
004027 p.000300: 000223 p.000005: • The ESRC’s guidance and information for ESRC-funded students
004028 p.000300: ...
004029 p.000300: Appendix
004030 p.000300: Indicator List
004031 p.000300: Indicator Vulnerability
004032 p.000300: abuse Victim of Abuse
004033 p.000300: access Access to Social Goods
004034 p.000300: age Diminished Autonomy
004035 p.000300: authority Relationship to Authority
004036 p.000300: autonomy Impaired Autonomy
...

...
004206 p.000300: Social Religion special
004207 p.000300: Social Social social
004208 p.000300: Social Student student
004209 p.000300: Social Threat of Stigma threat
004210 p.000300: Social Threat of Violence violence
004211 p.000300: Social Victim of Abuse abuse
004212 p.000300: Social Women women
004213 p.000300: Social Youth/Minors minor
004214 p.000300:
004215 p.000300:
...

Searching for indicator victim:

(return to top)
...
003970 p.000300: 000329 p.000008:
003971 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003972 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
003973 p.000300: ...
003974 p.000300:
003975 p.000300: Social / Victim of Abuse
003976 p.000300: Searching for indicator abuse:
003977 p.000300:
003978 p.000300: (return to top)
003979 p.000300: ...
003980 p.000300: 000322 p.000007: which is operating under The Adults with Incapacity (Scotland) Act 2000
...

...
004027 p.000300: 000223 p.000005: • The ESRC’s guidance and information for ESRC-funded students
004028 p.000300: ...
004029 p.000300: Appendix
004030 p.000300: Indicator List
004031 p.000300: Indicator Vulnerability
004032 p.000300: abuse Victim of Abuse
004033 p.000300: access Access to Social Goods
004034 p.000300: age Diminished Autonomy
004035 p.000300: authority Relationship to Authority
004036 p.000300: autonomy Impaired Autonomy
...

...
004206 p.000300: Social Religion special
004207 p.000300: Social Social social
004208 p.000300: Social Student student
004209 p.000300: Social Threat of Stigma threat
004210 p.000300: Social Threat of Violence violence
004211 p.000300: Social Victim of Abuse abuse
004212 p.000300: Social Women women
004213 p.000300: Social Youth/Minors minor
004214 p.000300:
004215 p.000300:
...

Social / Women

Searching for indicator women:

(return to top)
...
001190 p.000300: ...
001191 p.000300:
001192 p.000300: ...
001193 p.000300: 000513 p.000012: of the community and wider society as well as the researchers and funders of research.
001194 p.000300: 000514 p.000012:
001195 p.000300: 000515 p.000012: RECs should be multidisciplinary and comprised of both men and women. They should include at least one lay
001196 p.000300: member with
001197 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
001198 p.000300: expertise
001199 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
...

...
002573 p.000300: and
002574 p.000300: ...
002575 p.000300:
002576 p.000300: ...
002577 p.000300: 000514 p.000012:
002578 p.000300: 000515 p.000012: RECs should be multidisciplinary and comprised of both men and women. They should include at least one lay
002579 p.000300: member with
002580 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
002581 p.000300: expertise
002582 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
...

...
002670 p.000300: ...
002671 p.000300:
002672 p.000300: ...
002673 p.000300: 000513 p.000012: of the community and wider society as well as the researchers and funders of research.
002674 p.000300: 000514 p.000012:
002675 p.000300: 000515 p.000012: RECs should be multidisciplinary and comprised of both men and women. They should include at least one lay
002676 p.000300: member with
002677 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
002678 p.000300: expertise
002679 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
...

...
003415 p.000300: and
003416 p.000300: ...
003417 p.000300:
003418 p.000300: ...
003419 p.000300: 000514 p.000012:
003420 p.000300: 000515 p.000012: RECs should be multidisciplinary and comprised of both men and women. They should include at least one lay
003421 p.000300: member with
003422 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
003423 p.000300: expertise
003424 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
...

...
003987 p.000300: 000329 p.000008:
003988 p.000300: 000330 p.000008: • Deceased persons. Researchers should adhere to relevant legislation ie Human Tissue Act 2004
003989 p.000300: 000331 p.000008: (http://www.legislation.gov.uk/ukpga/2004/30/contents), Human Tissue (Sc) Act 2006
003990 p.000300: ...
003991 p.000300:
003992 p.000300: Social / Women
003993 p.000300: Searching for indicator women:
003994 p.000300:
003995 p.000300: (return to top)
003996 p.000300: ...
003997 p.000300: 000510 p.000012: necessary to provide competent and rigorous ethics review of the submitted research proposals, and to do so from a
003998 p.000300: 000511 p.000012: position that is independent of both the researchers and the RO in which it is located. Its composition and
003999 p.000300: 000512 p.000012: independence are important in establishing the legitimacy of the opinions expressed and the decisions made, in the
004000 p.000300: eyes
004001 p.000300: 000513 p.000012: of the community and wider society as well as the researchers and funders of research.
004002 p.000300: 000514 p.000012:
004003 p.000300: 000515 p.000012: RECs should be multidisciplinary and comprised of both men and women. They should include at least one lay
004004 p.000300: member with
004005 p.000300: 000516 p.000012: no affiliation to the RO in question. There should be a chairperson and members who have broad experience and
004006 p.000300: expertise
004007 p.000300: 000517 p.000012: in the areas of research regularly reviewed by the REC and members who have the confidence and esteem of the
...

...
004090 p.000300: union Trade Union Membership
004091 p.000300: usage Laboratory Staff
004092 p.000300: violence Threat of Violence
004093 p.000300: vulnerable Child
004094 p.000300: welfare Welfare Recipient
004095 p.000300: women Women
004096 p.000300:
004097 p.000300:
004098 p.000300: Indicator Peers (Indicators in Same Vulnerabilty)
004099 p.000300: Indicator Peers
...

...
004207 p.000300: Social Social social
004208 p.000300: Social Student student
004209 p.000300: Social Threat of Stigma threat
004210 p.000300: Social Threat of Violence violence
004211 p.000300: Social Victim of Abuse abuse
004212 p.000300: Social Women women
004213 p.000300: Social Youth/Minors minor
004214 p.000300:
004215 p.000300:
004216 p.000300: Document Match Map - Line Numbers where Indicators and Trigger Words Appear
...

Social / Youth/Minors

Searching for indicator minor:

(return to top)
...
004008 p.000300: research
004009 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
004010 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
004011 p.000300: ...
004012 p.000300:
004013 p.000300: Social / Youth/Minors
004014 p.000300: Searching for indicator minor:
004015 p.000300:
004016 p.000300: (return to top)
004017 p.000300: ...
004018 p.000300: 000214 p.000005: • If review by the REC shows that a project requires major changes which will alter it substantially and the project
004019 p.000300: 000215 p.000005: can no longer attract ESRC support, payments may be suspended and the grant terminated. This is likely to be an
004020 p.000300: 000216 p.000005: extremely rare occurrence since the proposal will already have undergone external peer-review which should identify
004021 p.000300: 000217 p.000005: such severe problems.
004022 p.000300: 000218 p.000005:
004023 p.000300: 000219 p.000005: • Approval for minor changes to a project following REC review is delegated to the RO. If ongoing review by a REC
004024 p.000300: 000220 p.000005: shows that a project requires major changes in the lifetime of the research which will alter it so much that it can no
004025 p.000300: 000221 p.000005: longer attract ESRC support, this should be referred to ESRC.
004026 p.000300: 000222 p.000005:
004027 p.000300: 000223 p.000005: • The ESRC’s guidance and information for ESRC-funded students
...

...
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
004070 p.000300: minor Youth/Minors
004071 p.000300: nursing home In Nursing Home
004072 p.000300: officer Police Officer
004073 p.000300: Philosophical Differences/Difference of
004074 p.000300: opinion
...

...
004208 p.000300: Social Student student
004209 p.000300: Social Threat of Stigma threat
004210 p.000300: Social Threat of Violence violence
004211 p.000300: Social Victim of Abuse abuse
004212 p.000300: Social Women women
004213 p.000300: Social Youth/Minors minor
004214 p.000300:
004215 p.000300:
004216 p.000300: Document Match Map - Line Numbers where Indicators and Trigger Words Appear
004217 p.000300: Refer to 5A71EB3B079C385D77612EE96779F088
...

Searching for indicator minors:

(return to top)
...
004008 p.000300: research
004009 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
004010 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
004011 p.000300: ...
004012 p.000300:
004013 p.000300: Social / Youth/Minors
004014 p.000300: Searching for indicator minor:
004015 p.000300:
004016 p.000300: (return to top)
004017 p.000300: ...
004018 p.000300: 000214 p.000005: • If review by the REC shows that a project requires major changes which will alter it substantially and the project
...

...
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
004070 p.000300: minor Youth/Minors
004071 p.000300: nursing home In Nursing Home
004072 p.000300: officer Police Officer
004073 p.000300: Philosophical Differences/Difference of
004074 p.000300: opinion
...

...
004208 p.000300: Social Student student
004209 p.000300: Social Threat of Stigma threat
004210 p.000300: Social Threat of Violence violence
004211 p.000300: Social Victim of Abuse abuse
004212 p.000300: Social Women women
004213 p.000300: Social Youth/Minors minor
004214 p.000300:
004215 p.000300:
004216 p.000300: Document Match Map - Line Numbers where Indicators and Trigger Words Appear
004217 p.000300: Refer to 5A71EB3B079C385D77612EE96779F088
...

Searching for indicator youth:

(return to top)
...
004008 p.000300: research
004009 p.000300: 000518 p.000012: community. RECs would also benefit from including individuals who reflect ethnic diversity, users of specialist health,
004010 p.000300: 000519 p.000012: education or social services (where these are the focus of research activities), individuals with experience of
004011 p.000300: ...
004012 p.000300:
004013 p.000300: Social / Youth/Minors
004014 p.000300: Searching for indicator minor:
004015 p.000300:
004016 p.000300: (return to top)
004017 p.000300: ...
004018 p.000300: 000214 p.000005: • If review by the REC shows that a project requires major changes which will alter it substantially and the project
...

...
004065 p.000300: impairment Cognitive Impairment
004066 p.000300: incapacity Incapacitated
004067 p.000300: influence Drug Usage
004068 p.000300: justice Breastfeeding Children
004069 p.000300: literate Literacy
004070 p.000300: minor Youth/Minors
004071 p.000300: nursing home In Nursing Home
004072 p.000300: officer Police Officer
004073 p.000300: Philosophical Differences/Difference of
004074 p.000300: opinion
...

...
004208 p.000300: Social Student student
004209 p.000300: Social Threat of Stigma threat
004210 p.000300: Social Threat of Violence violence
004211 p.000300: Social Victim of Abuse abuse
004212 p.000300: Social Women women
004213 p.000300: Social Youth/Minors minor
004214 p.000300:
004215 p.000300:
004216 p.000300: Document Match Map - Line Numbers where Indicators and Trigger Words Appear
004217 p.000300: Refer to 5A71EB3B079C385D77612EE96779F088
...

Appendix

Indicator List

IndicatorVulnerability
abuseVictim of Abuse
accessAccess to Social Goods
ageDiminished Autonomy
aidsHIV/AIDS
authorityRelationship to Authority
autonomyImpaired Autonomy
cadaversCadavers
capacityFetus/Neonate
childChild
childrenChild
coercionPresence of Coercion
cognitiveCognitive Impairment
cognitive impairmentCognitive Impairment
culturalCultural Differences
cultureCultural Differences
deceasedLinguistic Proficiency
dependenceDrug Dependence
dependentDependent
difference of opinionPhilosophical Differences/Difference of Opinion
diminishedIllegal Activity
diminished autonomyImpaired Autonomy
disabilityMentally Disabled
disabledChild
drugDrug Usage
drug usageDrug Usage
economicEconomic/Poverty
educationEducational
educationalEducational
elderlyElderly
engagedMarital Status
ethnicEthnicity
ethnicityEthnicity
familyMotherhood/Family
fetusFetus/Neonate
genderGender
healthHealth
hivHIV/AIDS
homeProperty Ownership
illPhysically Ill
illegalIllegal Activity
illegal activityIllegal Activity
illnessPhysically Ill
impairedCognitive Impairment
impaired autonomyImpaired Autonomy
impairmentCognitive Impairment
incapacitatedIncapacitated
incapacityIncapacitated
incarceratedIncarcerated
influenceDrug Usage
justiceBreastfeeding Children
lgbtq+LGBTQ+ Status
linguistic proficiencyLinguistic Proficiency
literacyLiteracy
literateLiteracy
marital statusMarital Status
mentallyMentally Disabled
mentally disabledMentally Disabled
minorYouth/Minors
minorityRacial Minority
minorsYouth/Minors
motherhoodMotherhood/Family
neonateHomeless Persons
nursing homeIn Nursing Home
officerPolice Officer
opinionPhilosophical Differences/Difference of Opinion
partyPolitical
philosophical differencesPhilosophical Differences/Difference of Opinion
physicallyLGBTQ+ Status
policePolice Officer
politicalPolitical
poorEconomic/Poverty
povertyEconomic/Poverty
property ownershipProperty Ownership
racialRacial Minority
racial minorityRacial Minority
relationship to authorityRelationship to Authority
religionReligion
religiousReligion
restrictedIncarcerated
singleMarital Status
socialSocial
social goodsAccess to Social Goods
specialReligion
stigmaThreat of Stigma
studentStudent
threatThreat of Stigma
undue influenceUndue Influence
unionTrade Union Membership
usageLaboratory Staff
victimVictim of Abuse
violenceThreat of Violence
vulnerabilityOther Country
vulnerableChild
welfareWelfare Recipient
welfare recipientWelfare Recipient
womenWomen
youthYouth/Minors

Indicator Peers (Indicators in Same Vulnerabilty)

IndicatorPeers
abuse['victim']
access['social goods']
aids['gender', 'hiv']
authority['relationship to authority']
autonomy['diminished autonomy', 'impaired autonomy']
capacity['fetus']
child['disabled', 'children', 'vulnerable']
children['child', 'disabled', 'vulnerable']
cognitive['cognitive impairment', 'impairment', 'impaired']
cognitive impairment['cognitive', 'impairment', 'impaired']
cultural['culture']
culture['cultural']
deceased['linguistic proficiency']
difference of opinion['philosophical differences', 'opinion']
diminished['illegal', 'illegal activity']
diminished autonomy['autonomy', 'impaired autonomy']
disability['mentally', 'mentally disabled']
disabled['child', 'children', 'vulnerable']
drug['influence', 'drug usage']
drug usage['influence', 'drug']
economic['poverty', 'poor']
education['educational']
educational['education']
engaged['marital status', 'single']
ethnic['ethnicity']
ethnicity['ethnic']
family['motherhood']
fetus['capacity']
gender['aids']
hiv['aids']
home['property ownership']
ill['illness']
illegal['illegal activity', 'diminished']
illegal activity['illegal', 'diminished']
illness['ill']
impaired['cognitive', 'cognitive impairment', 'impairment']
impaired autonomy['autonomy', 'diminished autonomy']
impairment['cognitive', 'cognitive impairment', 'impaired']
incapacitated['incapacity']
incapacity['incapacitated']
incarcerated['restricted']
influence['drug', 'drug usage']
lgbtq+['physically']
linguistic proficiency['deceased']
literacy['literate']
literate['literacy']
marital status['single', 'engaged']
mentally['mentally disabled', 'disability']
mentally disabled['mentally', 'disability']
minor['minors', 'youth']
minority['racial', 'racial minority']
minors['minor', 'youth']
motherhood['family']
officer['police']
opinion['philosophical differences', 'difference of opinion']
party['political']
philosophical differences['opinion', 'difference of opinion']
physically['lgbtq+']
police['officer']
political['party']
poor['poverty', 'economic']
poverty['poor', 'economic']
property ownership['home']
racial['racial minority', 'minority']
racial minority['racial', 'minority']
relationship to authority['authority']
religion['special', 'religious']
religious['special', 'religion']
restricted['incarcerated']
single['marital status', 'engaged']
social goods['access']
special['religion', 'religious']
stigma['threat']
threat['stigma']
victim['abuse']
vulnerable['child', 'disabled', 'children']
welfare['welfare recipient']
welfare recipient['welfare']
youth['minor', 'minors']

Trigger Words

consent

developing

ethics

harm

protect

protection

risk

self-determination

sensitive

vulnerable


Applicable Type / Vulnerability / Indicator Overlay for this Input

Vulnerability TypeVulnerabilityIndicator
EconomicEconomic/Povertyeconomic
EconomicEconomic/Povertypoor
EconomicEconomic/Povertypoverty
EconomicWelfare Recipientwelfare
EconomicWelfare Recipientwelfare recipient
General/OtherCultural Differencescultural
General/OtherCultural Differencesculture
General/OtherDependentdependent
General/OtherDiminished Autonomyage
General/OtherImpaired Autonomyautonomy
General/OtherImpaired Autonomydiminished autonomy
General/OtherImpaired Autonomyimpaired autonomy
General/OtherIncapacitatedincapacitated
General/OtherIncapacitatedincapacity
General/OtherLaboratory Staffusage
General/OtherOther Countryvulnerability
General/OtherPresence of Coercioncoercion
General/OtherRelationship to Authorityauthority
General/OtherRelationship to Authorityrelationship to authority
General/OtherUndue Influenceundue influence
HealthCadaverscadavers
HealthCognitive Impairmentcognitive
HealthCognitive Impairmentcognitive impairment
HealthCognitive Impairmentimpaired
HealthCognitive Impairmentimpairment
HealthDrug Dependencedependence
HealthDrug Usagedrug
HealthDrug Usagedrug usage
HealthDrug Usageinfluence
HealthHIV/AIDSaids
HealthHIV/AIDShiv
HealthHealthhealth
HealthMentally Disableddisability
HealthMentally Disabledmentally
HealthMentally Disabledmentally disabled
HealthMotherhood/Familyfamily
HealthMotherhood/Familymotherhood
HealthPhysically Illill
HealthPhysically Illillness
PoliticalIllegal Activitydiminished
PoliticalIllegal Activityillegal
PoliticalIllegal Activityillegal activity
PoliticalPoliticalparty
PoliticalPoliticalpolitical
PoliticalTrade Union Membershipunion
SocialAccess to Social Goodsaccess
SocialAccess to Social Goodssocial goods
SocialBreastfeeding Childrenjustice
SocialChildchild
SocialChildchildren
SocialChilddisabled
SocialChildvulnerable
SocialEducationaleducation
SocialEducationaleducational
SocialElderlyelderly
SocialEthnicityethnic
SocialEthnicityethnicity
SocialFetus/Neonatecapacity
SocialFetus/Neonatefetus
SocialGenderaids
SocialGendergender
SocialHomeless Personsneonate
SocialIn Nursing Homenursing home
SocialIncarceratedincarcerated
SocialIncarceratedrestricted
SocialLGBTQ+ Statuslgbtq+
SocialLGBTQ+ Statusphysically
SocialLinguistic Proficiencydeceased
SocialLinguistic Proficiencylinguistic proficiency
SocialLiteracyliteracy
SocialLiteracyliterate
SocialMarital Statusengaged
SocialMarital Statusmarital status
SocialMarital Statussingle
SocialPhilosophical Differences/Difference of Opiniondifference of opinion
SocialPhilosophical Differences/Difference of Opinionopinion
SocialPhilosophical Differences/Difference of Opinionphilosophical differences
SocialPolice Officerofficer
SocialPolice Officerpolice
SocialProperty Ownershiphome
SocialProperty Ownershipproperty ownership
SocialRacial Minorityminority
SocialRacial Minorityracial
SocialRacial Minorityracial minority
SocialReligionreligion
SocialReligionreligious
SocialReligionspecial
SocialSocialsocial
SocialStudentstudent
SocialThreat of Stigmastigma
SocialThreat of Stigmathreat
SocialThreat of Violenceviolence
SocialVictim of Abuseabuse
SocialVictim of Abusevictim
SocialWomenwomen
SocialYouth/Minorsminor
SocialYouth/Minorsminors
SocialYouth/Minorsyouth

Document Match Map - Line Numbers where Indicators and Trigger Words Appear

Refer to E1E7C98544042A411A34EC881D1753FE

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0000 _________X____X__XX________X_X____________XX__XX_______X___XXXX_XX___XX___X_XX_X_____XX_X________X__

0100 _______X__X____XX_____X___X___X____XX___X___X_____XX__XXX_________X__X___________XX______XX___X____X

0200 X_X________X___XXXX_XX__X_____XX__XX__X____________X_X_________X___XX_____XX____X__XX_X_X_____XXXXX_

0300 XX_X_____X_X_XXX___________X_X______XX___XX_XX_X_XX_______X____XX______XX_______XX_XXX____X___X__X__

0400 _XX____X_XX__XX___X___XX___XX___X_X_X_XX_X_X______X__X_X_XX_X_XX_X_XXXX_XXXXXX__X_______XXXXXX____X_

0500 X__X_X_XX__X_X_X_X_____X____X__X____X____XX____X_______XXX_________XXXX______XXXXXXX_X________X___X_

0600 X_XX_XX_____XX________XX_XX_____XXXX_X_X_____XX_X_X_____________X_X_______X_X__XX__X_____X___XXXX___

0700 _XX________X________X_X__X_XX__XX_________X_X___X___X____XXX__X_____X____X__XXX_________X__X_XX_____

0800 X____XX_X______X_XX_X_X_XX____X_X__X_______XX________XX_XX____X_X_X_________XX_X_X_____X__XX___XX___

0900 _X_X__X__XX____X__XX_X_X____XX____X______X____X__XX_X_X____XX____X______X___XX_X_XXXX_XXX__X____X__X

1000 X_X_X_____X_X_XX_X_XX_X_X___XX____X______XX______X__X___X___XX___X_XX_X_XX_X_XXX____XXX_X_______X___

1100 _____XX_XX____X_X_X_________XX_X_X_____X__XX___XXXXX_X_______XX____X_X__X_XX__XX___XX__X______X_____

1200 XX________X____XXX__X___X____XXXX_______X____X__X_________X_XXX_______XXXXXXXXXX____XXX_XXXXXX__X___

1300 ____X__XXX_____X__X_X__XX______XXX_X________X_XX_XX____XX_X_____X____X_XX_X_X_XX________XX_______XXX

1400 XXXXXX_X__XX_____X__XX_X_X__XX___X___XX__X______XXXXX_XX____XXXXXXXX_X________XX__XXX_______XX___X_X

1500 _XXXX_XXXX_XX____XX___XX__X______XXXX___________XXX_______XXXXXXX_X_______XX_XXXXX_XX___XX________XX

1600 X____X____XX___XX__X_____X__XXX_____X____XX_X________X__X__________X___XXXX_X________X_X_______X____

1700 X__________XX_XXXX_____X___XXX_X____XX________X_X________XXX_X_______X___XXX____XX___X______X__X____

1800 ____XXXXX_XX_X__X___XX_________X_XX____________X__________X_X________XX___X________X____XX_X__X___X_

1900 ____X____X_____X___X____X____X__X__XXX_______X___X__X_X_X___XXX______XXXX_X_X_XXX__X___X____XXX_X___

2000 XX_X_XX_XX___X_________X__X______________X____X_________XX__X_______XX_____XXXX_XX__X__XX______X__X_

2100 _X______X_X_XXX__X_X_X________XX__X__XX__X__X___XXX__XX_XX______X__XX_X_X________XXXXX_X___X___XXXX_

2200 _________X_XX___X_XX_____XX_XX_X_XX____XXX________X_X_XXX__X_X_X__________X_X__________XXXXXX__X_X_X

2300 _X__X___XX____X_______X__X_XX__________XXX__X________X__X_X________XX__X__XX__X_X___XXX__XX_XX______

2400 X__XX_X_X_________X__X_______X_XX___X_XX_____XX_XX_X_XX____XXX________X_X_XXX__X_________XXXXXX___XX

2500 ____X__________XX__X__X__________XXX____________XX__X____XX________X_________X_____XX__________X__XX

2600 __X___X____XXXXXXX_X___XX______XXXXX_XX___X__X_XX_____XX___X___XX__X______X_____XX________X___XXX_X_

2700 ________XX__X________XX_X________XX_____XX_X_X__X_X_____X__X__XX____XX___XX___X_X_X_XX_X_X_______X_X

2800 __X_X_XX_X_XX_X_XXXX_XXXXXX_______XXXXXX____X_X__X_X_XX__X_X_X_X___X____XX__XXX______X____XX____X___

2900 _____X__X_________XXX_______X___XXXX____________XXXXXXXXX__XX___X___XX__X___XX_______XXX_X___XX___X_

3000 ___X_X__XX__XX_____X__X_X____XX____XX__X______XX___XXX__X_X_X____XX__X____X___XX_______XX___________

3100 __X___X_XXX_X_____X______XXX__X___________X___X_XXX_X_________X__XX___X__XX___X__X_X___X__XX_____X__

3200 _XX_X_______XX_X__X_________X__X____________XX_X_____XXX___X__XX_______XXX_X___XX____X___XXX_X___XX_

3300 __X___XXX_X____X________XXX____X__XX________X_X______X_X______X__XXX__XX_________X____X_X___XXXX____

3400 ___X_X___X_X_X_____X_____XX________X____XX__XX___X______X____X__X______X__XX___X_X_XX___XX___XX_XX_X

3500 ___X_X___X___X_XX____________X_XXX__________X__X_X_X___XXX_______XXXXXXXXXX_X_______X_XX_X_X_XXX____

3600 ___X___XXXX_XX_______XX_X_X___________XXX__X____X_____X____X________XX__X__X_X__XX_X___X______XX___X

3700 ___X________X_X_X______XXX__X__________XXX_XXXXXXX___X___X_XX_XX___X_X_X_XXX__XX_XXX_X__________XX__

3800 ______XX__X__XX__X_____XX__X___________XXXX_______XX________X__X____X__X_XXX__X_______XX__________XX

3900 _XX___X____XX_XX_XX_________X___XX______XX____X___X______XX___X___XX__X___XX___X___XX__X___XX___X___

4000 __X_____XX__XX________X_______XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX_XXXXXXXXXXX____X

4100 XXXXXXXXXXXXXXXXXXXXXX___X_____________X_X_X__XXX_XXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXXX

4200 XXXXXXXXXXXXX_____________________________________________________________