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:
(return to top)
...
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:
(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 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
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...
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
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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']
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...
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
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...
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:
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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
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...
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
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...
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 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
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...
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:
(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: ...
...
...
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:
(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)
...
...
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:
(return to top)
...
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
Indicator | Vulnerability |
abuse | Victim of Abuse |
access | Access to Social Goods |
age | Diminished Autonomy |
aids | HIV/AIDS |
authority | Relationship to Authority |
autonomy | Impaired Autonomy |
cadavers | Cadavers |
capacity | Fetus/Neonate |
child | Child |
children | Child |
coercion | Presence of Coercion |
cognitive | Cognitive Impairment |
cognitive impairment | Cognitive Impairment |
cultural | Cultural Differences |
culture | Cultural Differences |
deceased | Linguistic Proficiency |
dependence | Drug Dependence |
dependent | Dependent |
difference of opinion | Philosophical Differences/Difference of Opinion |
diminished | Illegal Activity |
diminished autonomy | Impaired Autonomy |
disability | Mentally Disabled |
disabled | Child |
drug | Drug Usage |
drug usage | Drug Usage |
economic | Economic/Poverty |
education | Educational |
educational | Educational |
elderly | Elderly |
engaged | Marital Status |
ethnic | Ethnicity |
ethnicity | Ethnicity |
family | Motherhood/Family |
fetus | Fetus/Neonate |
gender | Gender |
health | Health |
hiv | HIV/AIDS |
home | Property Ownership |
ill | Physically Ill |
illegal | Illegal Activity |
illegal activity | Illegal Activity |
illness | Physically Ill |
impaired | Cognitive Impairment |
impaired autonomy | Impaired Autonomy |
impairment | Cognitive Impairment |
incapacitated | Incapacitated |
incapacity | Incapacitated |
incarcerated | Incarcerated |
influence | Drug Usage |
justice | Breastfeeding Children |
lgbtq+ | LGBTQ+ Status |
linguistic proficiency | Linguistic Proficiency |
literacy | Literacy |
literate | Literacy |
marital status | Marital Status |
mentally | Mentally Disabled |
mentally disabled | Mentally Disabled |
minor | Youth/Minors |
minority | Racial Minority |
minors | Youth/Minors |
motherhood | Motherhood/Family |
neonate | Homeless Persons |
nursing home | In Nursing Home |
officer | Police Officer |
opinion | Philosophical Differences/Difference of Opinion |
party | Political |
philosophical differences | Philosophical Differences/Difference of Opinion |
physically | LGBTQ+ Status |
police | Police Officer |
political | Political |
poor | Economic/Poverty |
poverty | Economic/Poverty |
property ownership | Property Ownership |
racial | Racial Minority |
racial minority | Racial Minority |
relationship to authority | Relationship to Authority |
religion | Religion |
religious | Religion |
restricted | Incarcerated |
single | Marital Status |
social | Social |
social goods | Access to Social Goods |
special | Religion |
stigma | Threat of Stigma |
student | Student |
threat | Threat of Stigma |
undue influence | Undue Influence |
union | Trade Union Membership |
usage | Laboratory Staff |
victim | Victim of Abuse |
violence | Threat of Violence |
vulnerability | Other Country |
vulnerable | Child |
welfare | Welfare Recipient |
welfare recipient | Welfare Recipient |
women | Women |
youth | Youth/Minors |
Indicator Peers (Indicators in Same Vulnerabilty)
Indicator | Peers |
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
Document Match Map - Line Numbers where Indicators and Trigger Words Appear
Refer to E1E7C98544042A411A34EC881D1753FE
---- ....|...10....|...20....|...30....|...40....|...50....|...60....|...70....|...80....|...90....|..100
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_____________________________________________________________