79C3C34C52B45572883A05D425EB0F82
Ethical Principles of Research in the Humanities and Social and Behavioural Sciences and Proposals for Ethical Review (2009)
https://www.tenk.fi/sites/tenk.fi/files/ethicalprinciples.pdf
http://leaux.net/URLS/ConvertAPI Text Files/4466E8A9E6583EE20AD082ACDF803102.en.txt
Examining the file media/Synopses/4466E8A9E6583EE20AD082ACDF803102.html:
This file was generated: 2020-12-01 07:26:19
| 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 Orphaned Trigger Words (Appendix (Indicator List, Indicator Peers, Trigger Words, Type/Vulnerability/Indicator Overlay)
Applicable Type / Vulnerability / Indicator Overlay for this Input
Political / Illegal Activity
Searching for indicator crime:
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p.000011: example, information concerning crimes is considered to be sensitive information that is subject to and restricted by
p.000011: the researcher's obligation of confidentiality. Information regarding individual subjects in research data may not be
p.000011: revealed to tax authorities, social welfare authorities or the police.
p.000011:
p.000011: An exception to the obligation of confidentiality is every citizen's obligation to report an imminent serious offence
p.000011: that can still be prevented.4 The deciding factor is the possibility to
p.000011:
p.000011: 4 Chapter 15 section 10 of the Penal Code (563/1998): "A person who knows of imminent genocide, preparation of
p.000011: genocide, breach of the prohibition of chemical weapons, breach of the prohibition of biological weapons, compromising
p.000011: of the sovereignty of Finland, treason, aggravated treason, espionage, aggravated espionage, high treason, aggravated
p.000011: high treason, rape, aggravated rape, aggravated sexual abuse of a child, murder, manslaughter, killing, aggravated
p.000011: assault, robbery, aggravated robbery, kidnapping, hostage taking, aggravated criminal mischief, aggravated
p.000011:
p.000012: 12
p.000012:
p.000012:
p.000012: prevent an offence. A researcher does not have an obligation to reveal information regarding crimes that have already
p.000012: been committed, unless revealing information helps to prevent an imminent serious crime.
p.000012:
p.000012: According to section 25 of the Child Welfare Act (417/2007), the obligation to confidentiality can be inapplicable if
p.000012: in the course of work a researcher discovers that "there is a child for whom it is necessary to investigate the need
p.000012: for child welfare on account of the child's need for care, circumstances endangering the child's development, or the
p.000012: child's behaviour".5 The primary starting point in a researcher's work is to ensure confidentiality and remain in the
p.000012: role of researcher. In studying children and young people one must respect their own opinion if they are mature enough
p.000012: to form an opinion. If a researcher decides on the basis of the Child Welfare Act to make a report, it is good practice
p.000012: to inform the subjects in question of this intention.
p.000012:
p.000012: 3.2 Storing or destroying research data
p.000012:
p.000012: Research in the humanities and social and behavioural sciences is not always repeatable, but the scientific community
p.000012: should have the possibility, if necessary, to verify research findings from the data analysed in a study. Openness is a
...
Political / criminal
Searching for indicator criminal:
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p.000011:
p.000011: Protecting privacy as a constitutional right protects citizens particularly against measures taken by public
p.000011: authorities. A researcher's task is to produce scientific information to help understand social problems or society and
p.000011: culture in general. This task does not include revealing information about individual subjects to authorities. For
p.000011: example, information concerning crimes is considered to be sensitive information that is subject to and restricted by
p.000011: the researcher's obligation of confidentiality. Information regarding individual subjects in research data may not be
p.000011: revealed to tax authorities, social welfare authorities or the police.
p.000011:
p.000011: An exception to the obligation of confidentiality is every citizen's obligation to report an imminent serious offence
p.000011: that can still be prevented.4 The deciding factor is the possibility to
p.000011:
p.000011: 4 Chapter 15 section 10 of the Penal Code (563/1998): "A person who knows of imminent genocide, preparation of
p.000011: genocide, breach of the prohibition of chemical weapons, breach of the prohibition of biological weapons, compromising
p.000011: of the sovereignty of Finland, treason, aggravated treason, espionage, aggravated espionage, high treason, aggravated
p.000011: high treason, rape, aggravated rape, aggravated sexual abuse of a child, murder, manslaughter, killing, aggravated
p.000011: assault, robbery, aggravated robbery, kidnapping, hostage taking, aggravated criminal mischief, aggravated
p.000011:
p.000012: 12
p.000012:
p.000012:
p.000012: prevent an offence. A researcher does not have an obligation to reveal information regarding crimes that have already
p.000012: been committed, unless revealing information helps to prevent an imminent serious crime.
p.000012:
p.000012: According to section 25 of the Child Welfare Act (417/2007), the obligation to confidentiality can be inapplicable if
p.000012: in the course of work a researcher discovers that "there is a child for whom it is necessary to investigate the need
p.000012: for child welfare on account of the child's need for care, circumstances endangering the child's development, or the
p.000012: child's behaviour".5 The primary starting point in a researcher's work is to ensure confidentiality and remain in the
p.000012: role of researcher. In studying children and young people one must respect their own opinion if they are mature enough
p.000012: to form an opinion. If a researcher decides on the basis of the Child Welfare Act to make a report, it is good practice
p.000012: to inform the subjects in question of this intention.
p.000012:
...
Health / Cognitive Impairment
Searching for indicator impairment:
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p.000012: Data that are carefully archived for secondary research reduce the need to collect research data containing
p.000012: identifiers. Archiving also reduces the research pressure on small population groups. It is particularly important to
p.000012: archive for secondary research data that have cultural, historical and/or scientific value.
p.000012:
p.000012: When necessary, the protection of privacy should be ensured through anonymisation measures and through the regulation
p.000012: of access to data for secondary research.
p.000012:
p.000012: If it is necessary to remove identifiers from data stored for secondary use, the goal of the anonymisation measures
p.000012: undertaken should be that secondary users of data cannot immediately identify individual subjects. In addition to
p.000012: direct identifiers (name, address, ID), indirect identifiers (workplace, school, place of residence, age, profession
p.000012: etc) can be removed from archived data or be recoded, categorised or otherwise masked.
p.000012:
p.000012: The protection of subjects' privacy should be ensured by setting strict conditions on the secondary use of data. Data
p.000012: can only be used for research purposes. In addition, secondary users of data should be requested to sign an agreement
p.000012: on the conditions set for secondary research and if needed also a pledge of confidentiality.
p.000012:
p.000012:
p.000012:
p.000012: endangerment of health, nuclear device offence, hijacking, an offence committed with terrorist intent referred to in
p.000012: chapter 34 a, section 1(1)(3), aggravated impairment of the environment or aggravated narcotics offence, and fails to
p.000012: report it to the authorities or the endangered person in time to prevent the offence, shall be sentenced, if the
p.000012: offence or a punishable attempt is committed, for a failure to report a serious offence to a fine or to imprisonment
p.000012: for at most six months."
p.000012:
p.000012: 5 In this connection cf. the judgement of the European Court of Human Rights, 2.12.2008 (Juppala v. Finland).
p.000012:
p.000013: 13
p.000013:
p.000013:
p.000013: If data containing identifiers are sensitive, and cannot be anonymized, and research subjects have not been asked to
p.000013: give permission to store the data, the datasets should be destroyed after the study has been completed. If data are of
p.000013: scientific value or historically unique, a request for permission to archive data can be submitted to the National
p.000013: Archives.
p.000013:
p.000013: 3.3 Protecting privacy in research publications
p.000013:
p.000013: Unlike research data, research publications are in the public domain. The need to protect privacy in publications must
p.000013: be evaluated on a case-by-case basis.
p.000013:
p.000013: For most studies, there is no need to present subjects in an identifiable way in published findings. The results of
p.000013: quantitative research are reported statistically, which means that there is no risk of identification even when the
p.000013: publication is based on data containing identifiers.
p.000013:
p.000013: In the case of qualitative data, the risk of identification must always be evaluated before any samples/quotations from
...
Health / Drug Usage
Searching for indicator influence:
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p.000004: transparent as possible within the framework of the Act on the Openness of Government Activities. This will prevent
p.000004: major policy differences between regional committees. The board recommends that requests for ethical reviews received
p.000004: by the committees and the statements they issue should be published on the websites of the committees.
p.000004:
p.000004: The National Advisory Board on Research Ethics will prepare a sample statement form for committees.
p.000004:
p.000004: In addition to ethical review, ethics committees can also handle other tasks that they deem necessary, such as the
p.000004: coordination of education in research ethics.
p.000004:
p.000004: 5 The National Advisory Board on Research Ethics' other proposals
p.000004:
p.000004: 1. A proposal to take measures to amend the Act on Medical Research so that it would cover all health research that
p.000004: involves an intervention in the physical integrity of subjects and so that the person in charge of the study could also
p.000004: be a scientifically qualified expert in some other field than medicine or dentistry.
p.000004:
p.000004: 2. A proposal to take measures to amend legislation so that the right guaranteed to children in the Constitution of
p.000004: Finland and in the UN Convention on the Rights of the Child to influence matters pertaining to themselves to a degree
p.000004: corresponding to their level of development is also implemented in matters regarding participation in research.2
p.000004:
p.000004: 3. The National Advisory Board on Research Ethics recommends that education in research ethics be promoted and given a
p.000004: permanent place in undergraduate and post- graduate education. The importance of ethics education has repeatedly come
p.000004: up in the Advisory Board’s own discussions, in the feedback from the scientific community to the Advisory Board, and in
p.000004: articles and seminar presentations on ethical review. Ethical issues in the humanities and social and behavioural
p.000004: sciences also essentially concern the research relationship and the possible consequences of research publications.
p.000004: Therefore, in addition to separate courses, ethics education in these fields should form an integral part of
p.000004: methodology training and research supervision. Since ethical issues in the humanities and social and behavioural
p.000004: sciences research cannot always be predicted and depend on the situation, graduate schools in particular should make
p.000004: sure that researchers are given opportunities to discuss any problematic situations with experienced researchers and
p.000004: with other post-graduate students.
p.000004:
p.000004: 2 See also Liisa Nieminen, Lapset tutkimuskohteena: Kuka päättää lapsen osallistumisesta tutkimukseen? Lakimies 2/2009,
...
p.000005:
p.000006: 6
p.000006:
p.000006:
p.000006: For example, a person with AIDS may not want his or her name registered on a written consent.
p.000006:
p.000006: Consent can be specific or general. General consent applies to research use in general. General consent can include
p.000006: conditions regarding the form in which data are recorded and archived and conditions set for the use of data in
p.000006: secondary research.
p.000006:
p.000006: If information obtained from subjects is combined with information in official registers, subjects must be given
p.000006: detailed information on the registers that will be used.
p.000006:
p.000006: Specific consent concerns the use of information in a particular study. Specific consent with regard to the use of data
p.000006: may be justified on the grounds that data cannot be anonymized and that archiving the data with identifiers for
p.000006: secondary research would in all likelihood be harmful to subjects.
p.000006:
p.000006: Subjects have the right to withdraw from a study at any stage, but this does not mean, however, that their prior input
p.000006: (interviews etc) cannot be used in the study.
p.000006:
p.000006: 1.2 Autonomy and research involving minors
p.000006:
p.000006: According to section 6 paragraph 3 of the Constitution of Finland, children must be treated equally and as individuals
p.000006: and must be allowed to influence matters pertaining to themselves to a degree corresponding to their level of
p.000006: development. The same right is also ensured in Article 12 of the UN Convention on the Rights of the Child. On the other
p.000006: hand, according to section 4 paragraph 1 of the Child Custody and Right of Access Act (361/1983), a guardian has the
p.000006: right to decide on a child's personal matters. Balancing this right and the above- mentioned principles in the
p.000006: Constitution and the UN Convention on the Rights of the Child is not always easy. Consequently, the National Advisory
p.000006: Board on Research Ethics has called for legislation to be clarified in this respect.
p.000006:
p.000006: In practice, it cannot be assumed that researchers should always request separate consent from a guardian when research
p.000006: involves minors. First, according to the above-mentioned principles children should be able to influence matters
p.000006: pertaining to themselves to a degree corresponding to their level of development. Second, there are situations where
p.000006: there may be differences in values and interests between a guardian and a minor, and requesting the guardian's consent
p.000006: may endanger the collection of comprehensive research data on the conditions and behaviour of minors, thus restricting
p.000006: the freedom of science, which is guaranteed by the Constitution. Third, there are studies which do not include risks
p.000006: and where requesting consent from the guardian would be difficult.
p.000006:
p.000006: 1.3 Autonomy and age limits
p.000006:
p.000006: Many studies that are conducted in schools and institutions of early childhood education and care can be carried out as
p.000006: part of the normal work of the institution or school. It is not necessary to request a guardian's permission if the
p.000006: director of an institution of early childhood education and care or the head teacher of a school has evaluated that the
p.000006: study would produce useful information for the institution or school and can be carried out as part of the normal
p.000006: activities of the institution or school. For example, observations, broad questionnaires and open interviews which do
p.000006: not collect directly identifying information
p.000006:
p.000007: 7
p.000007:
p.000007:
...
p.000011: be protected (back-up copies, user names, processing if necessary on computers not linked to a network), and to what
p.000011: extent identifiers will be deleted or stored in connection with the data to be analysed.
p.000011:
p.000011: If necessary, researchers or other research personnel handling data with identifiers can be required to sign a pledge
p.000011: of confidentiality. The research director or the principal investigator is responsible for written pledges. The
p.000011: confidentiality of data containing identifiers also applies to anyone using data, even if written pledges are not used.
p.000011:
p.000011: If subjects' personal data are not needed for data analysis, and there are no research grounds for storing them, paper
p.000011: materials containing identifiers must be destroyed, and identifiers must be removed from electronic files or else
p.000011: recoded, categorised or otherwise masked.
p.000011: Identifiers that are stored for the purpose of further contacts with subjects must be protected and stored separately
p.000011: from analysed data.
p.000011:
p.000011: If research data have been collected from official documents and registers without asking for subjects' consent, both
p.000011: identifiers and sensitive information must be destroyed as soon as they are unnecessary for conducting the research.
p.000011:
p.000011: The confidentiality of research data relies on restrictions on the processing, use and storage of data. Research data
p.000011: may not be used or handed over for other uses besides research. It is particularly unacceptable to reveal information
p.000011: on research data or hand over data in such a way that it could influence the evaluation, treatment or position of
p.000011: individual subjects.
p.000011: Research data may not be handed over to the media or for commercial purposes.
p.000011:
p.000011: Protecting privacy as a constitutional right protects citizens particularly against measures taken by public
p.000011: authorities. A researcher's task is to produce scientific information to help understand social problems or society and
p.000011: culture in general. This task does not include revealing information about individual subjects to authorities. For
p.000011: example, information concerning crimes is considered to be sensitive information that is subject to and restricted by
p.000011: the researcher's obligation of confidentiality. Information regarding individual subjects in research data may not be
p.000011: revealed to tax authorities, social welfare authorities or the police.
p.000011:
p.000011: An exception to the obligation of confidentiality is every citizen's obligation to report an imminent serious offence
p.000011: that can still be prevented.4 The deciding factor is the possibility to
p.000011:
p.000011: 4 Chapter 15 section 10 of the Penal Code (563/1998): "A person who knows of imminent genocide, preparation of
p.000011: genocide, breach of the prohibition of chemical weapons, breach of the prohibition of biological weapons, compromising
p.000011: of the sovereignty of Finland, treason, aggravated treason, espionage, aggravated espionage, high treason, aggravated
...
Health / Motherhood/Family
Searching for indicator family:
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p.000009: conduct research carefully and systematically and to publish results with proper arguments and shedding light on
p.000009: different perspectives in a balanced manner. Researchers and editors are responsible for compliance with ethical
p.000009: principles in research publications.
p.000009:
p.000009: 2.3 Studies containing risks of harm: an ethical review must be requested from the ethics committee
p.000009:
p.000009: Studies entailing possible risks that cannot be evaluated by research subjects themselves, and studies with potential
p.000009: to cause harm beyond the limits of normal life, must be evaluated in advance. This includes studies that 1) intervene
p.000009: in the physical integrity of subjects or 2) in which subjects undergo exceptionally strong stimuli and evaluating
p.000009: possible harm requires special expertise (for example, studies containing violence or pornography). In addition,
p.000009: studies in which the researcher is aware that there is a risk of causing long-term mental
p.000009:
p.000010: 10
p.000010:
p.000010:
p.000010: harm (trauma, depression, sleeplessness) beyond the risks encountered in normal life or studies that can signify a
p.000010: security risk to subjects (for example, studies concerning family violence) must be evaluated in advance.
p.000010:
p.000010: 3 PRIVACY AND DATA PROTECTION
p.000010:
p.000010: The protection of privacy is a right protected by the Constitution of Finland. It is also an established and important
p.000010: principle in research ethics. Data protection forms the most important area of privacy protection regarding the
p.000010: collection and processing of research data and the publication of results.
p.000010: Research ethics principles concerning the protection of privacy fall into three categories: 1) protecting research data
p.000010: and confidentiality, 2) storing or disposing of research data and 3) research publications. The goal is to find a
p.000010: balance between confidentiality and the openness of science and research.
p.000010:
p.000010: Principles concerning the protection of privacy do not apply to materials that are in the public domain or to published
p.000010: data, which can concern individuals and their activities in the fields of politics, business, official activities and
p.000010: culture. Guidelines concerning privacy and principles concerning data protection must be observed with regard to court
p.000010: sessions and court decisions, however.
p.000010:
p.000010: The Personal Data Act (523/1999) contains provisions on the processing of personal data. According to section 3,
p.000010: personal data means "any information on a private individual and any information on his/her personal characteristics or
p.000010: personal circumstances, where these are identifiable as concerning him/her or the members of his/her family or
p.000010: household".3
p.000010:
p.000010: According to the main principle in the Act, personal data can be processed with the consent of the subject. A basic
p.000010: principle regarding the collection and storage of personal data is the need for personal data in a study. Personal data
p.000010: may not be collected and stored unnecessarily. If research data can be reasonably analysed without direct identifiers
p.000010: and there are no research grounds for storing identifiers, only data from which identifiers have been removed may be
p.000010: produced for research purposes and stored for secondary research.
p.000010:
p.000010: Data with identifiers can be collected and used when this is appropriate from the viewpoint of that particular
p.000010: research. With the consent of the subject data can also be stored for secondary research with identifiers. Research in
p.000010: the humanities and social and behavioural sciences may require the processing and storage of identifiers. This may be
p.000010: based on the need to analyse data, later contacts with subjects or the historical and cultural significance of data.
p.000010: All contemporary data may also have historical and cultural significance.
p.000010:
p.000010: 3.1 Protecting research data and confidentiality
p.000010:
p.000010:
p.000010:
p.000010:
p.000010:
p.000010: 3 With regard to identifiability the most significant thing is whether a particular individual can be identified from
p.000010: data easily and without unreasonable costs. Identifiers in research data have traditionally been divided into direct
p.000010: and indirect identifiers. Direct identifiers are name, address, data of birth and a person's voice and picture.
p.000010: Indirect identifiers are, for example, place of residence, neighbourhood, education, job and family composition.
p.000010:
p.000011: 11
p.000011:
p.000011:
p.000011: The protection of data with identifiers must be carefully planned. The protection of subjects' privacy may not be
p.000011: jeopardized by the careless storage of data or unprotected electronic data transfers.
p.000011:
p.000011: Data security solutions for data with identifiers include decisions regarding where paper materials containing
p.000011: identifiers will be stored, at what stage unnecessary data will be destroyed or how their storage and archiving will be
p.000011: arranged for secondary research. Decisions must also be made regarding how electronic data containing identifiers will
p.000011: be protected (back-up copies, user names, processing if necessary on computers not linked to a network), and to what
p.000011: extent identifiers will be deleted or stored in connection with the data to be analysed.
p.000011:
p.000011: If necessary, researchers or other research personnel handling data with identifiers can be required to sign a pledge
p.000011: of confidentiality. The research director or the principal investigator is responsible for written pledges. The
p.000011: confidentiality of data containing identifiers also applies to anyone using data, even if written pledges are not used.
p.000011:
p.000011: If subjects' personal data are not needed for data analysis, and there are no research grounds for storing them, paper
p.000011: materials containing identifiers must be destroyed, and identifiers must be removed from electronic files or else
p.000011: recoded, categorised or otherwise masked.
p.000011: Identifiers that are stored for the purpose of further contacts with subjects must be protected and stored separately
p.000011: from analysed data.
p.000011:
...
Social / Access to Social Goods
Searching for indicator social welfare:
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p.000011: from analysed data.
p.000011:
p.000011: If research data have been collected from official documents and registers without asking for subjects' consent, both
p.000011: identifiers and sensitive information must be destroyed as soon as they are unnecessary for conducting the research.
p.000011:
p.000011: The confidentiality of research data relies on restrictions on the processing, use and storage of data. Research data
p.000011: may not be used or handed over for other uses besides research. It is particularly unacceptable to reveal information
p.000011: on research data or hand over data in such a way that it could influence the evaluation, treatment or position of
p.000011: individual subjects.
p.000011: Research data may not be handed over to the media or for commercial purposes.
p.000011:
p.000011: Protecting privacy as a constitutional right protects citizens particularly against measures taken by public
p.000011: authorities. A researcher's task is to produce scientific information to help understand social problems or society and
p.000011: culture in general. This task does not include revealing information about individual subjects to authorities. For
p.000011: example, information concerning crimes is considered to be sensitive information that is subject to and restricted by
p.000011: the researcher's obligation of confidentiality. Information regarding individual subjects in research data may not be
p.000011: revealed to tax authorities, social welfare authorities or the police.
p.000011:
p.000011: An exception to the obligation of confidentiality is every citizen's obligation to report an imminent serious offence
p.000011: that can still be prevented.4 The deciding factor is the possibility to
p.000011:
p.000011: 4 Chapter 15 section 10 of the Penal Code (563/1998): "A person who knows of imminent genocide, preparation of
p.000011: genocide, breach of the prohibition of chemical weapons, breach of the prohibition of biological weapons, compromising
p.000011: of the sovereignty of Finland, treason, aggravated treason, espionage, aggravated espionage, high treason, aggravated
p.000011: high treason, rape, aggravated rape, aggravated sexual abuse of a child, murder, manslaughter, killing, aggravated
p.000011: assault, robbery, aggravated robbery, kidnapping, hostage taking, aggravated criminal mischief, aggravated
p.000011:
p.000012: 12
p.000012:
p.000012:
p.000012: prevent an offence. A researcher does not have an obligation to reveal information regarding crimes that have already
p.000012: been committed, unless revealing information helps to prevent an imminent serious crime.
p.000012:
p.000012: According to section 25 of the Child Welfare Act (417/2007), the obligation to confidentiality can be inapplicable if
p.000012: in the course of work a researcher discovers that "there is a child for whom it is necessary to investigate the need
...
Searching for indicator access:
(return to top)
p.000006: conditions regarding the form in which data are recorded and archived and conditions set for the use of data in
p.000006: secondary research.
p.000006:
p.000006: If information obtained from subjects is combined with information in official registers, subjects must be given
p.000006: detailed information on the registers that will be used.
p.000006:
p.000006: Specific consent concerns the use of information in a particular study. Specific consent with regard to the use of data
p.000006: may be justified on the grounds that data cannot be anonymized and that archiving the data with identifiers for
p.000006: secondary research would in all likelihood be harmful to subjects.
p.000006:
p.000006: Subjects have the right to withdraw from a study at any stage, but this does not mean, however, that their prior input
p.000006: (interviews etc) cannot be used in the study.
p.000006:
p.000006: 1.2 Autonomy and research involving minors
p.000006:
p.000006: According to section 6 paragraph 3 of the Constitution of Finland, children must be treated equally and as individuals
p.000006: and must be allowed to influence matters pertaining to themselves to a degree corresponding to their level of
p.000006: development. The same right is also ensured in Article 12 of the UN Convention on the Rights of the Child. On the other
p.000006: hand, according to section 4 paragraph 1 of the Child Custody and Right of Access Act (361/1983), a guardian has the
p.000006: right to decide on a child's personal matters. Balancing this right and the above- mentioned principles in the
p.000006: Constitution and the UN Convention on the Rights of the Child is not always easy. Consequently, the National Advisory
p.000006: Board on Research Ethics has called for legislation to be clarified in this respect.
p.000006:
p.000006: In practice, it cannot be assumed that researchers should always request separate consent from a guardian when research
p.000006: involves minors. First, according to the above-mentioned principles children should be able to influence matters
p.000006: pertaining to themselves to a degree corresponding to their level of development. Second, there are situations where
p.000006: there may be differences in values and interests between a guardian and a minor, and requesting the guardian's consent
p.000006: may endanger the collection of comprehensive research data on the conditions and behaviour of minors, thus restricting
p.000006: the freedom of science, which is guaranteed by the Constitution. Third, there are studies which do not include risks
p.000006: and where requesting consent from the guardian would be difficult.
p.000006:
p.000006: 1.3 Autonomy and age limits
p.000006:
...
p.000012: role of researcher. In studying children and young people one must respect their own opinion if they are mature enough
p.000012: to form an opinion. If a researcher decides on the basis of the Child Welfare Act to make a report, it is good practice
p.000012: to inform the subjects in question of this intention.
p.000012:
p.000012: 3.2 Storing or destroying research data
p.000012:
p.000012: Research in the humanities and social and behavioural sciences is not always repeatable, but the scientific community
p.000012: should have the possibility, if necessary, to verify research findings from the data analysed in a study. Openness is a
p.000012: key characteristic of science and also a precondition for testing the validity of scientific information, critically
p.000012: evaluating information and advancing science.
p.000012:
p.000012: Data that are carefully archived for secondary research reduce the need to collect research data containing
p.000012: identifiers. Archiving also reduces the research pressure on small population groups. It is particularly important to
p.000012: archive for secondary research data that have cultural, historical and/or scientific value.
p.000012:
p.000012: When necessary, the protection of privacy should be ensured through anonymisation measures and through the regulation
p.000012: of access to data for secondary research.
p.000012:
p.000012: If it is necessary to remove identifiers from data stored for secondary use, the goal of the anonymisation measures
p.000012: undertaken should be that secondary users of data cannot immediately identify individual subjects. In addition to
p.000012: direct identifiers (name, address, ID), indirect identifiers (workplace, school, place of residence, age, profession
p.000012: etc) can be removed from archived data or be recoded, categorised or otherwise masked.
p.000012:
p.000012: The protection of subjects' privacy should be ensured by setting strict conditions on the secondary use of data. Data
p.000012: can only be used for research purposes. In addition, secondary users of data should be requested to sign an agreement
p.000012: on the conditions set for secondary research and if needed also a pledge of confidentiality.
p.000012:
p.000012:
p.000012:
p.000012: endangerment of health, nuclear device offence, hijacking, an offence committed with terrorist intent referred to in
p.000012: chapter 34 a, section 1(1)(3), aggravated impairment of the environment or aggravated narcotics offence, and fails to
p.000012: report it to the authorities or the endangered person in time to prevent the offence, shall be sentenced, if the
p.000012: offence or a punishable attempt is committed, for a failure to report a serious offence to a fine or to imprisonment
p.000012: for at most six months."
p.000012:
p.000012: 5 In this connection cf. the judgement of the European Court of Human Rights, 2.12.2008 (Juppala v. Finland).
p.000012:
p.000013: 13
p.000013:
p.000013:
...
Social / Age
Searching for indicator age:
(return to top)
p.000002: review. However, committee work requires time and money. The National Advisory Board on Research Ethics was not asked
p.000002: to propose a financing model for the system. It should be noted that some secretaries of ethics committees established
p.000002: on the basis of the Medical Research Act are employed full-time, for example.
p.000002:
p.000002: The ethics committee can request an ethical review from an outside expert if a planned study will intervene in a
p.000002: subject's personal integrity and if it considers its own expertise inadequate for risk evaluation.
p.000002:
p.000002: 1 This also includes nursing science, health sciences and other sciences insofar as they use social and behavioural
p.000002: science research methods.
p.000002:
p.000003: 3
p.000003:
p.000003:
p.000003:
p.000003:
p.000003: 3 Scope of ethical review
p.000003:
p.000003: The National Advisory Board on Research Ethics considers that researchers must submit their research plan to ethical
p.000003: review if a study contains any of the following features:
p.000003:
p.000003: 1. The study involves an intervention in the physical integrity of subjects,
p.000003: 2. The study deviates from the principle of informed consent (ethical review is not required if the research is based
p.000003: on public documents, registries or archived data),
p.000003: 3. The subjects are children under the age of 15, and the study is not part of the normal activities of a school or an
p.000003: institution of early childhood education and care, and the data are collected without parental consent and without
p.000003: providing the parents or guardians the opportunity to prevent the child from taking part in the study,
p.000003: 4. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000003: expertise (for example, studies containing violence or pornography),
p.000003: 5. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000003: life,
p.000003: 6. The study can signify a security risk to subjects (for example, studies concerning domestic violence).
p.000003:
p.000003: A researcher can also request an ethical review if the research subject, the funding agency or a cooperation partner so
p.000003: requires or if the results are to be published in a scientific journal which requires ethical review. The reason for
p.000003: requesting an ethical review must always be specified.
p.000003:
p.000003: Ethical review does not mean transferring the ethical responsibility for the conduction and implementation of the study
...
p.000006: right to decide on a child's personal matters. Balancing this right and the above- mentioned principles in the
p.000006: Constitution and the UN Convention on the Rights of the Child is not always easy. Consequently, the National Advisory
p.000006: Board on Research Ethics has called for legislation to be clarified in this respect.
p.000006:
p.000006: In practice, it cannot be assumed that researchers should always request separate consent from a guardian when research
p.000006: involves minors. First, according to the above-mentioned principles children should be able to influence matters
p.000006: pertaining to themselves to a degree corresponding to their level of development. Second, there are situations where
p.000006: there may be differences in values and interests between a guardian and a minor, and requesting the guardian's consent
p.000006: may endanger the collection of comprehensive research data on the conditions and behaviour of minors, thus restricting
p.000006: the freedom of science, which is guaranteed by the Constitution. Third, there are studies which do not include risks
p.000006: and where requesting consent from the guardian would be difficult.
p.000006:
p.000006: 1.3 Autonomy and age limits
p.000006:
p.000006: Many studies that are conducted in schools and institutions of early childhood education and care can be carried out as
p.000006: part of the normal work of the institution or school. It is not necessary to request a guardian's permission if the
p.000006: director of an institution of early childhood education and care or the head teacher of a school has evaluated that the
p.000006: study would produce useful information for the institution or school and can be carried out as part of the normal
p.000006: activities of the institution or school. For example, observations, broad questionnaires and open interviews which do
p.000006: not collect directly identifying information
p.000006:
p.000007: 7
p.000007:
p.000007:
p.000007: (names, ID’s, addresses) for research purposes can be carried out without the consent of parents or some other
p.000007: guardian. In other cases they must be informed of the study.
p.000007:
p.000007: When studying minors outside an institution of early childhood education and care or school, researchers must
p.000007: themselves evaluate when it is necessary to ask for a guardian's separate consent or inform a guardian of the study so
p.000007: that the guardian can forbid the child from participating in the study. A study involving children under the age of 15
p.000007: can be conducted without a guardian's separate consent or informing a guardian if this is justified from the viewpoint
p.000007: of 1) the age and development level of subjects, 2) the subject and research method or 3) the need for information. If
p.000007: a study is to be conducted without a guardian's separate consent or informing a guardian, an ethical review must be
p.000007: requested for studies involving subjects under the age of 15.
p.000007:
p.000007: Researchers must always respect a minor's autonomy and the principle of voluntary participation, regardless of whether
p.000007: a guardian's consent has been obtained or not.
p.000007:
p.000007: 1.4 Information for subjects
p.000007:
p.000007: The information that must be provided to research subjects depends on the nature of data collection methods. In studies
p.000007: based on observation, interviews or questionnaires, subjects must be told what the study is about and what
p.000007: participating in the study means in concrete terms and how long it will take.
p.000007:
p.000007: Information regarding a study should include at least the following: 1) the researcher's contact information, 2) the
p.000007: research topic, 3) the method of collecting data and the estimated time required, 4) the purpose for which data will be
p.000007: collected, how it will be archived for secondary use, and 5) the voluntary nature of participation.
p.000007:
p.000007: Subjects may ask for additional information regarding the study and researchers should prepare for this in advance.
p.000007: Additional information can concern, for example, 1) a study's scientific or doctrinal orientation, 2) how confidential
p.000007: data will be protected and where data will be archived after the study, 3) how and when the results of the study will
p.000007: be published.
p.000007:
p.000007: In experimental studies sufficient information must be provided concerning the design of the experiment. Experimental
p.000007: designs vary considerably from one field to another. Determining the adequacy of information is always up to the
p.000007: researcher according to the guidelines in the particular field.
p.000007:
...
p.000012: to inform the subjects in question of this intention.
p.000012:
p.000012: 3.2 Storing or destroying research data
p.000012:
p.000012: Research in the humanities and social and behavioural sciences is not always repeatable, but the scientific community
p.000012: should have the possibility, if necessary, to verify research findings from the data analysed in a study. Openness is a
p.000012: key characteristic of science and also a precondition for testing the validity of scientific information, critically
p.000012: evaluating information and advancing science.
p.000012:
p.000012: Data that are carefully archived for secondary research reduce the need to collect research data containing
p.000012: identifiers. Archiving also reduces the research pressure on small population groups. It is particularly important to
p.000012: archive for secondary research data that have cultural, historical and/or scientific value.
p.000012:
p.000012: When necessary, the protection of privacy should be ensured through anonymisation measures and through the regulation
p.000012: of access to data for secondary research.
p.000012:
p.000012: If it is necessary to remove identifiers from data stored for secondary use, the goal of the anonymisation measures
p.000012: undertaken should be that secondary users of data cannot immediately identify individual subjects. In addition to
p.000012: direct identifiers (name, address, ID), indirect identifiers (workplace, school, place of residence, age, profession
p.000012: etc) can be removed from archived data or be recoded, categorised or otherwise masked.
p.000012:
p.000012: The protection of subjects' privacy should be ensured by setting strict conditions on the secondary use of data. Data
p.000012: can only be used for research purposes. In addition, secondary users of data should be requested to sign an agreement
p.000012: on the conditions set for secondary research and if needed also a pledge of confidentiality.
p.000012:
p.000012:
p.000012:
p.000012: endangerment of health, nuclear device offence, hijacking, an offence committed with terrorist intent referred to in
p.000012: chapter 34 a, section 1(1)(3), aggravated impairment of the environment or aggravated narcotics offence, and fails to
p.000012: report it to the authorities or the endangered person in time to prevent the offence, shall be sentenced, if the
p.000012: offence or a punishable attempt is committed, for a failure to report a serious offence to a fine or to imprisonment
p.000012: for at most six months."
p.000012:
p.000012: 5 In this connection cf. the judgement of the European Court of Human Rights, 2.12.2008 (Juppala v. Finland).
p.000012:
p.000013: 13
p.000013:
p.000013:
p.000013: If data containing identifiers are sensitive, and cannot be anonymized, and research subjects have not been asked to
p.000013: give permission to store the data, the datasets should be destroyed after the study has been completed. If data are of
p.000013: scientific value or historically unique, a request for permission to archive data can be submitted to the National
p.000013: Archives.
p.000013:
p.000013: 3.3 Protecting privacy in research publications
p.000013:
p.000013: Unlike research data, research publications are in the public domain. The need to protect privacy in publications must
p.000013: be evaluated on a case-by-case basis.
p.000013:
p.000013: For most studies, there is no need to present subjects in an identifiable way in published findings. The results of
p.000013: quantitative research are reported statistically, which means that there is no risk of identification even when the
p.000013: publication is based on data containing identifiers.
p.000013:
p.000013: In the case of qualitative data, the risk of identification must always be evaluated before any samples/quotations from
p.000013: the data are published: what indirect identifiers (workplace, school, place of residence, age, profession etc) will be
p.000013: left in the sample as such, what will be masked and what will be omitted altogether.
p.000013:
p.000013: In studying organizations or other social actors (institutions, associations, work communities, public bodies etc), the
p.000013: identifiability of the organization and its individual representatives must be evaluated separately in each case.
p.000013: Subjects generally participate in a study as individual representatives of their social or professional role. Anonymity
p.000013: in research publications does not necessarily prevent identification among those who are familiar with the unit or
p.000013: organization in question, however. Subjects should not be promised complete anonymity unless it can reasonably be
p.000013: guaranteed. Research publications should strive to treat individual subjects and the research target in a respectful
p.000013: manner. Critical findings regarding the research target should be explained analytically, avoiding a labelling
p.000013: attitude.
p.000013:
p.000013: In research, particularly in the humanities but also in the social sciences, it may be justifiable for research
p.000013: purposes and also ethically to present subjects by name in research publications. For example, a study based on
p.000013: interviews with experts can be published without removing the names of subjects or other identifiers. Agreement about
p.000013: this must be reached with research subjects in advance.
p.000013:
p.000013: If research concerns archived materials, the identifiability or non-identifiability of subjects in research
p.000013: publications depends on the conditions the distributing archive has set on the use of the data.
p.000013:
p.000013: 4 ETHICAL REVIEW
p.000013:
p.000013: In preparing a request for an ethical review and in evaluating the possible negative effects and risks of a study, the
p.000013: point of departure should be the ethical principles in the humanities and social and behavioural sciences (the autonomy
p.000013: of research subjects, avoiding harm, privacy and data protection). Evaluation never shifts responsibility for research
p.000013: ethics to the committee. In research in the humanities and social and behavioural sciences, ethical questions focus on
p.000013: the encounter between the researcher and the subject, which can include unanticipated factors. The researcher is always
p.000013: responsible for the ethical and moral solutions in a study.
p.000013:
p.000014: 14
p.000014:
p.000014:
p.000014:
p.000014: Researchers must submit their research plan to ethical review if a study contains any of the following features:
p.000014: 1. The study involves an intervention in the physical integrity of subjects.
p.000014: 2. The study deviates from the principle of informed consent (ethical review is not required if the research is based
p.000014: on public documents, registries or archived data).
p.000014: 3. The subjects are children under the age of 15 and the study is not part of the normal activities of a school or an
p.000014: institution of early childhood education and care and the data are collected without parental consent and without
p.000014: providing the parents or guardians the opportunity to forbid the child from taking part in the study.
p.000014: 4. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000014: expertise (for example studies containing violence or pornography).
p.000014: 5. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000014: life.
p.000014: 6. The study can signify a security risk to subjects (for example studies concerning domestic violence).
p.000014:
p.000014: A researcher can also request an ethical review if the research subject, the funding agency or a cooperation partner so
p.000014: requires or if the results are to be published in a scientific journal which requires ethical review. The reason for
p.000014: requesting an ethical review must always be specified.
p.000014:
p.000014: For example, according to the guidelines issued by the Academy of Finland, it is sufficient if a review is submitted
p.000014: after a positive funding decision.
p.000014:
p.000014: 4.1 Guidelines for reviewing studies
p.000014:
...
p.000015: scientific value of the study. Studies must be conducted in a manner that minimizes any negative effects and risks to
p.000015: subjects.
p.000015:
p.000016: 16
p.000016:
p.000016:
p.000016:
p.000016: Evaluating physical risks requires expertise and background information based on empirical studies. The ethics
p.000016: committee can if necessary request an ethical review from an outside expert if it considers its own expertise
p.000016: inadequate for risk evaluation.
p.000016:
p.000016: b. The study deviates from the principle of informed consent
p.000016:
p.000016: With regard to a study that deviates from the principle of informed consent, the ethics committee will evaluate whether
p.000016: conducting the study is ethically acceptable. Conducting the study is ethically acceptable if the following
p.000016: preconditions are met:
p.000016: 1. the research is justified, and it would not be possible to conduct the research if subjects were informed of the
p.000016: study and their consent asked for,
p.000016: 2. the data collection does not involve risks to participants,
p.000016: 3. if possible, research subjects will be informed afterwards of the nature and purpose of the research,
p.000016: 4. adequate attention is paid to the privacy of the research subjects and data protection issues.
p.000016:
p.000016: c. The subjects are children under the age of 15, and the study is not part of the normal activities of a school or an
p.000016: institution of early childhood education and care, and the data are collected without parental consent and without
p.000016: providing the parents or guardians the opportunity to forbid the child from taking part in the study
p.000016:
p.000016: A study involving children aged under 15 can be conducted without the consent of a parent or other guardian and without
p.000016: informing the parent or guardian if it does not involve risks to subjects, and the research design is justified by one
p.000016: or more of the following preconditions:
p.000016:
p.000016: 1) On the basis of subjects' age and level of development:
p.000016:
p.000016: The minors who are intended subjects are able to understand the research topic and what participating in the study
p.000016: requires of them in concrete terms.
p.000016:
p.000016: 2) On the basis of the research area and method:
p.000016:
p.000016: The research topic is not sensitive and asking for a parent's or guardian's consent is difficult in practice (for
p.000016: example, studies of youth clubs or school pupils' voluntary clubs etc).
p.000016:
p.000016: 3) From the viewpoint of the need for information:
p.000016:
p.000016: The subject matter of the study will prevent the collection of comprehensive data if parents’ consent must be requested
p.000016: for children's participation (for example, domestic violence, social problems etc), or the research covers issues which
p.000016: minors may not want their parents to know about (for example, use of intoxicating substances, sexual orientation etc).
p.000016:
p.000016: d. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000016: expertise (for example studies containing violence or pornography).
p.000016:
...
Social / Child
Searching for indicator child:
(return to top)
p.000002: The ethics committee can request an ethical review from an outside expert if a planned study will intervene in a
p.000002: subject's personal integrity and if it considers its own expertise inadequate for risk evaluation.
p.000002:
p.000002: 1 This also includes nursing science, health sciences and other sciences insofar as they use social and behavioural
p.000002: science research methods.
p.000002:
p.000003: 3
p.000003:
p.000003:
p.000003:
p.000003:
p.000003: 3 Scope of ethical review
p.000003:
p.000003: The National Advisory Board on Research Ethics considers that researchers must submit their research plan to ethical
p.000003: review if a study contains any of the following features:
p.000003:
p.000003: 1. The study involves an intervention in the physical integrity of subjects,
p.000003: 2. The study deviates from the principle of informed consent (ethical review is not required if the research is based
p.000003: on public documents, registries or archived data),
p.000003: 3. The subjects are children under the age of 15, and the study is not part of the normal activities of a school or an
p.000003: institution of early childhood education and care, and the data are collected without parental consent and without
p.000003: providing the parents or guardians the opportunity to prevent the child from taking part in the study,
p.000003: 4. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000003: expertise (for example, studies containing violence or pornography),
p.000003: 5. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000003: life,
p.000003: 6. The study can signify a security risk to subjects (for example, studies concerning domestic violence).
p.000003:
p.000003: A researcher can also request an ethical review if the research subject, the funding agency or a cooperation partner so
p.000003: requires or if the results are to be published in a scientific journal which requires ethical review. The reason for
p.000003: requesting an ethical review must always be specified.
p.000003:
p.000003: Ethical review does not mean transferring the ethical responsibility for the conduction and implementation of the study
p.000003: from the researcher to the ethics committee. Which ethics committee will conduct the review will depend on the location
p.000003: of the organization where the researcher works.
p.000003:
p.000003: The National Advisory Board on Research Ethics proposes that the ethics committees to be established should also
...
p.000004: transparent as possible within the framework of the Act on the Openness of Government Activities. This will prevent
p.000004: major policy differences between regional committees. The board recommends that requests for ethical reviews received
p.000004: by the committees and the statements they issue should be published on the websites of the committees.
p.000004:
p.000004: The National Advisory Board on Research Ethics will prepare a sample statement form for committees.
p.000004:
p.000004: In addition to ethical review, ethics committees can also handle other tasks that they deem necessary, such as the
p.000004: coordination of education in research ethics.
p.000004:
p.000004: 5 The National Advisory Board on Research Ethics' other proposals
p.000004:
p.000004: 1. A proposal to take measures to amend the Act on Medical Research so that it would cover all health research that
p.000004: involves an intervention in the physical integrity of subjects and so that the person in charge of the study could also
p.000004: be a scientifically qualified expert in some other field than medicine or dentistry.
p.000004:
p.000004: 2. A proposal to take measures to amend legislation so that the right guaranteed to children in the Constitution of
p.000004: Finland and in the UN Convention on the Rights of the Child to influence matters pertaining to themselves to a degree
p.000004: corresponding to their level of development is also implemented in matters regarding participation in research.2
p.000004:
p.000004: 3. The National Advisory Board on Research Ethics recommends that education in research ethics be promoted and given a
p.000004: permanent place in undergraduate and post- graduate education. The importance of ethics education has repeatedly come
p.000004: up in the Advisory Board’s own discussions, in the feedback from the scientific community to the Advisory Board, and in
p.000004: articles and seminar presentations on ethical review. Ethical issues in the humanities and social and behavioural
p.000004: sciences also essentially concern the research relationship and the possible consequences of research publications.
p.000004: Therefore, in addition to separate courses, ethics education in these fields should form an integral part of
p.000004: methodology training and research supervision. Since ethical issues in the humanities and social and behavioural
p.000004: sciences research cannot always be predicted and depend on the situation, graduate schools in particular should make
p.000004: sure that researchers are given opportunities to discuss any problematic situations with experienced researchers and
p.000004: with other post-graduate students.
p.000004:
...
p.000005: scientific practice and procedures for handling misconduct and fraud in science" (2002).
p.000005:
p.000005: Ethical principles of research in the humanities and social and behavioural sciences are divided into three areas:
p.000005: 1. Respecting the autonomy of research subjects,
p.000005: 2. Avoiding harm and
p.000005: 3. Privacy and data protection.
p.000005:
p.000005: 1 THE AUTONOMY OF RESEARCH SUBJECTS
p.000005:
p.000005: 1.1 Voluntary participation
p.000005:
p.000005: Participation in research should be voluntary and based on informed consent. An exception from the principle of
p.000005: voluntary consent can be made when research is conducted on published and public information and archived materials.
p.000005: Research concerning official registries and documents and carried out without the consent of research subjects is
p.000005: governed by legislation.
p.000005:
p.000005: Research subjects can give consent orally or in writing, or their behaviour can otherwise be interpreted to mean that
p.000005: they have given consent to participate. For example, assenting to a polite request for an interview or responding to a
p.000005: questionnaire or request for a written response indicates that the subject has consented to be studied.
p.000005:
p.000005: In institutional settings (prisons, child protection institutions, hospitals, homes for the elderly etc) it is
p.000005: important to make sure that consent is given voluntarily by each and every subject. In evaluating the matter, attention
p.000005: must also be paid to the nature of the study, i.e. the degree to which personal matters are dealt with (need to protect
p.000005: privacy). If the research intervenes in personal integrity, it is particularly important to ensure the the genuineness
p.000005: of consent. On the whole, researchers should always take into account the constitutional rights guaranteed to each
p.000005: individual.
p.000005:
p.000005: If research intervenes in the physical integrity of subjects, consent must always be given in writing or in some other
p.000005: certifiable way, unless this is contrary to the interests of subjects.
p.000005:
p.000006: 6
p.000006:
p.000006:
p.000006: For example, a person with AIDS may not want his or her name registered on a written consent.
p.000006:
p.000006: Consent can be specific or general. General consent applies to research use in general. General consent can include
p.000006: conditions regarding the form in which data are recorded and archived and conditions set for the use of data in
p.000006: secondary research.
p.000006:
p.000006: If information obtained from subjects is combined with information in official registers, subjects must be given
p.000006: detailed information on the registers that will be used.
p.000006:
p.000006: Specific consent concerns the use of information in a particular study. Specific consent with regard to the use of data
p.000006: may be justified on the grounds that data cannot be anonymized and that archiving the data with identifiers for
p.000006: secondary research would in all likelihood be harmful to subjects.
p.000006:
p.000006: Subjects have the right to withdraw from a study at any stage, but this does not mean, however, that their prior input
p.000006: (interviews etc) cannot be used in the study.
p.000006:
p.000006: 1.2 Autonomy and research involving minors
p.000006:
p.000006: According to section 6 paragraph 3 of the Constitution of Finland, children must be treated equally and as individuals
p.000006: and must be allowed to influence matters pertaining to themselves to a degree corresponding to their level of
p.000006: development. The same right is also ensured in Article 12 of the UN Convention on the Rights of the Child. On the other
p.000006: hand, according to section 4 paragraph 1 of the Child Custody and Right of Access Act (361/1983), a guardian has the
p.000006: right to decide on a child's personal matters. Balancing this right and the above- mentioned principles in the
p.000006: Constitution and the UN Convention on the Rights of the Child is not always easy. Consequently, the National Advisory
p.000006: Board on Research Ethics has called for legislation to be clarified in this respect.
p.000006:
p.000006: In practice, it cannot be assumed that researchers should always request separate consent from a guardian when research
p.000006: involves minors. First, according to the above-mentioned principles children should be able to influence matters
p.000006: pertaining to themselves to a degree corresponding to their level of development. Second, there are situations where
p.000006: there may be differences in values and interests between a guardian and a minor, and requesting the guardian's consent
p.000006: may endanger the collection of comprehensive research data on the conditions and behaviour of minors, thus restricting
p.000006: the freedom of science, which is guaranteed by the Constitution. Third, there are studies which do not include risks
p.000006: and where requesting consent from the guardian would be difficult.
p.000006:
p.000006: 1.3 Autonomy and age limits
p.000006:
p.000006: Many studies that are conducted in schools and institutions of early childhood education and care can be carried out as
p.000006: part of the normal work of the institution or school. It is not necessary to request a guardian's permission if the
p.000006: director of an institution of early childhood education and care or the head teacher of a school has evaluated that the
p.000006: study would produce useful information for the institution or school and can be carried out as part of the normal
p.000006: activities of the institution or school. For example, observations, broad questionnaires and open interviews which do
p.000006: not collect directly identifying information
p.000006:
p.000007: 7
p.000007:
p.000007:
p.000007: (names, ID’s, addresses) for research purposes can be carried out without the consent of parents or some other
p.000007: guardian. In other cases they must be informed of the study.
p.000007:
p.000007: When studying minors outside an institution of early childhood education and care or school, researchers must
p.000007: themselves evaluate when it is necessary to ask for a guardian's separate consent or inform a guardian of the study so
p.000007: that the guardian can forbid the child from participating in the study. A study involving children under the age of 15
p.000007: can be conducted without a guardian's separate consent or informing a guardian if this is justified from the viewpoint
p.000007: of 1) the age and development level of subjects, 2) the subject and research method or 3) the need for information. If
p.000007: a study is to be conducted without a guardian's separate consent or informing a guardian, an ethical review must be
p.000007: requested for studies involving subjects under the age of 15.
p.000007:
p.000007: Researchers must always respect a minor's autonomy and the principle of voluntary participation, regardless of whether
p.000007: a guardian's consent has been obtained or not.
p.000007:
p.000007: 1.4 Information for subjects
p.000007:
p.000007: The information that must be provided to research subjects depends on the nature of data collection methods. In studies
p.000007: based on observation, interviews or questionnaires, subjects must be told what the study is about and what
p.000007: participating in the study means in concrete terms and how long it will take.
p.000007:
p.000007: Information regarding a study should include at least the following: 1) the researcher's contact information, 2) the
...
p.000008: themselves. If the subjects know what matters will be dealt with on the basis of the information that is supplied to
p.000008: them, by giving consent they have demonstrated their willingness to participate in the study while being aware of the
p.000008: study's scope and methods. If subjects participate in a study by writing about their experiences or answering a
p.000008: questionnaire, they regulate their own participation by avoiding matters and questions that they consider damaging or
p.000008: harmful.
p.000008:
p.000009: 9
p.000009:
p.000009:
p.000009: People experience things in different ways. The same research questions or topics can arouse different reactions in
p.000009: different people. Research situations can and may include the same kind of mental strain and feelings (disappointment,
p.000009: joy, sadness, hate, shame, frustration etc) as in everyday life in dealing with different aspects of human life.
p.000009:
p.000009: If a study includes interaction with subjects (participant observation, experimental study, interviews), subjects must
p.000009: be treated politely and with respect for their human dignity.
p.000009:
p.000009: A researcher must make sure that the principle of voluntary participation is also observed in situations where there is
p.000009: interaction with subjects. A subject's annoyance, embarrassment, fearfulness or physical fatigue can be sufficient
p.000009: grounds for the researcher to discontinue the study as far as the subject is concerned, even if the subject does not
p.000009: expressly refuse to continue. It is essential to ensure that subjects are participating voluntarily when studying
p.000009: people in institutional settings (hospitals, prisons, child protection institutions, homes for the elderly etc).
p.000009: Unnecessary mental strain can be avoided by testing in advance how much time subjects' participation will take.
p.000009:
p.000009: 2.2 Avoiding financial and social harm
p.000009:
p.000009: Financial and social harm to subjects is more likely if a study does not observe the ethical principles concerning
p.000009: privacy and data protection. According to the principles, systematic care must be shown in handling and storing
p.000009: confidential information. Furthermore, the duty of confidentiality must be observed regarding subjects' private matters
p.000009: (see ethical principles regarding privacy and data protection).
p.000009:
p.000009: Research publications can have harmful consequences for subjects. The risk of harm is greatest if results are presented
p.000009: judgmentally, in a prejudiced way or disrespectfully. Harm can also be caused by publishing results giving a negative
p.000009: picture that are not based on comprehensive data or the systematic analysis of data.
p.000009:
p.000009: Researchers should avoid any damage or harm to subjects that may be caused by research publications. However, this
p.000009: principle should not prevent the publication of research findings that may not be pleasing to subjects in all respects.
...
p.000011: individual subjects.
p.000011: Research data may not be handed over to the media or for commercial purposes.
p.000011:
p.000011: Protecting privacy as a constitutional right protects citizens particularly against measures taken by public
p.000011: authorities. A researcher's task is to produce scientific information to help understand social problems or society and
p.000011: culture in general. This task does not include revealing information about individual subjects to authorities. For
p.000011: example, information concerning crimes is considered to be sensitive information that is subject to and restricted by
p.000011: the researcher's obligation of confidentiality. Information regarding individual subjects in research data may not be
p.000011: revealed to tax authorities, social welfare authorities or the police.
p.000011:
p.000011: An exception to the obligation of confidentiality is every citizen's obligation to report an imminent serious offence
p.000011: that can still be prevented.4 The deciding factor is the possibility to
p.000011:
p.000011: 4 Chapter 15 section 10 of the Penal Code (563/1998): "A person who knows of imminent genocide, preparation of
p.000011: genocide, breach of the prohibition of chemical weapons, breach of the prohibition of biological weapons, compromising
p.000011: of the sovereignty of Finland, treason, aggravated treason, espionage, aggravated espionage, high treason, aggravated
p.000011: high treason, rape, aggravated rape, aggravated sexual abuse of a child, murder, manslaughter, killing, aggravated
p.000011: assault, robbery, aggravated robbery, kidnapping, hostage taking, aggravated criminal mischief, aggravated
p.000011:
p.000012: 12
p.000012:
p.000012:
p.000012: prevent an offence. A researcher does not have an obligation to reveal information regarding crimes that have already
p.000012: been committed, unless revealing information helps to prevent an imminent serious crime.
p.000012:
p.000012: According to section 25 of the Child Welfare Act (417/2007), the obligation to confidentiality can be inapplicable if
p.000012: in the course of work a researcher discovers that "there is a child for whom it is necessary to investigate the need
p.000012: for child welfare on account of the child's need for care, circumstances endangering the child's development, or the
p.000012: child's behaviour".5 The primary starting point in a researcher's work is to ensure confidentiality and remain in the
p.000012: role of researcher. In studying children and young people one must respect their own opinion if they are mature enough
p.000012: to form an opinion. If a researcher decides on the basis of the Child Welfare Act to make a report, it is good practice
p.000012: to inform the subjects in question of this intention.
p.000012:
p.000012: 3.2 Storing or destroying research data
p.000012:
p.000012: Research in the humanities and social and behavioural sciences is not always repeatable, but the scientific community
p.000012: should have the possibility, if necessary, to verify research findings from the data analysed in a study. Openness is a
p.000012: key characteristic of science and also a precondition for testing the validity of scientific information, critically
p.000012: evaluating information and advancing science.
p.000012:
p.000012: Data that are carefully archived for secondary research reduce the need to collect research data containing
p.000012: identifiers. Archiving also reduces the research pressure on small population groups. It is particularly important to
p.000012: archive for secondary research data that have cultural, historical and/or scientific value.
p.000012:
p.000012: When necessary, the protection of privacy should be ensured through anonymisation measures and through the regulation
p.000012: of access to data for secondary research.
p.000012:
p.000012: If it is necessary to remove identifiers from data stored for secondary use, the goal of the anonymisation measures
p.000012: undertaken should be that secondary users of data cannot immediately identify individual subjects. In addition to
p.000012: direct identifiers (name, address, ID), indirect identifiers (workplace, school, place of residence, age, profession
p.000012: etc) can be removed from archived data or be recoded, categorised or otherwise masked.
...
p.000013: of research subjects, avoiding harm, privacy and data protection). Evaluation never shifts responsibility for research
p.000013: ethics to the committee. In research in the humanities and social and behavioural sciences, ethical questions focus on
p.000013: the encounter between the researcher and the subject, which can include unanticipated factors. The researcher is always
p.000013: responsible for the ethical and moral solutions in a study.
p.000013:
p.000014: 14
p.000014:
p.000014:
p.000014:
p.000014: Researchers must submit their research plan to ethical review if a study contains any of the following features:
p.000014: 1. The study involves an intervention in the physical integrity of subjects.
p.000014: 2. The study deviates from the principle of informed consent (ethical review is not required if the research is based
p.000014: on public documents, registries or archived data).
p.000014: 3. The subjects are children under the age of 15 and the study is not part of the normal activities of a school or an
p.000014: institution of early childhood education and care and the data are collected without parental consent and without
p.000014: providing the parents or guardians the opportunity to forbid the child from taking part in the study.
p.000014: 4. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000014: expertise (for example studies containing violence or pornography).
p.000014: 5. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000014: life.
p.000014: 6. The study can signify a security risk to subjects (for example studies concerning domestic violence).
p.000014:
p.000014: A researcher can also request an ethical review if the research subject, the funding agency or a cooperation partner so
p.000014: requires or if the results are to be published in a scientific journal which requires ethical review. The reason for
p.000014: requesting an ethical review must always be specified.
p.000014:
p.000014: For example, according to the guidelines issued by the Academy of Finland, it is sufficient if a review is submitted
p.000014: after a positive funding decision.
p.000014:
p.000014: 4.1 Guidelines for reviewing studies
p.000014:
p.000014: An ethical review examines the plan for collecting data, how the study will be carried out, the information that will
p.000014: be given to subjects and the plan for processing and storing data from the perspective of avoiding risks and harm. The
p.000014: review weighs possible negative effects or harm to subjects resulting from participation in the study in relation to
...
p.000016: inadequate for risk evaluation.
p.000016:
p.000016: b. The study deviates from the principle of informed consent
p.000016:
p.000016: With regard to a study that deviates from the principle of informed consent, the ethics committee will evaluate whether
p.000016: conducting the study is ethically acceptable. Conducting the study is ethically acceptable if the following
p.000016: preconditions are met:
p.000016: 1. the research is justified, and it would not be possible to conduct the research if subjects were informed of the
p.000016: study and their consent asked for,
p.000016: 2. the data collection does not involve risks to participants,
p.000016: 3. if possible, research subjects will be informed afterwards of the nature and purpose of the research,
p.000016: 4. adequate attention is paid to the privacy of the research subjects and data protection issues.
p.000016:
p.000016: c. The subjects are children under the age of 15, and the study is not part of the normal activities of a school or an
p.000016: institution of early childhood education and care, and the data are collected without parental consent and without
p.000016: providing the parents or guardians the opportunity to forbid the child from taking part in the study
p.000016:
p.000016: A study involving children aged under 15 can be conducted without the consent of a parent or other guardian and without
p.000016: informing the parent or guardian if it does not involve risks to subjects, and the research design is justified by one
p.000016: or more of the following preconditions:
p.000016:
p.000016: 1) On the basis of subjects' age and level of development:
p.000016:
p.000016: The minors who are intended subjects are able to understand the research topic and what participating in the study
p.000016: requires of them in concrete terms.
p.000016:
p.000016: 2) On the basis of the research area and method:
p.000016:
p.000016: The research topic is not sensitive and asking for a parent's or guardian's consent is difficult in practice (for
p.000016: example, studies of youth clubs or school pupils' voluntary clubs etc).
p.000016:
p.000016: 3) From the viewpoint of the need for information:
p.000016:
p.000016: The subject matter of the study will prevent the collection of comprehensive data if parents’ consent must be requested
...
Searching for indicator children:
(return to top)
p.000002: review. However, committee work requires time and money. The National Advisory Board on Research Ethics was not asked
p.000002: to propose a financing model for the system. It should be noted that some secretaries of ethics committees established
p.000002: on the basis of the Medical Research Act are employed full-time, for example.
p.000002:
p.000002: The ethics committee can request an ethical review from an outside expert if a planned study will intervene in a
p.000002: subject's personal integrity and if it considers its own expertise inadequate for risk evaluation.
p.000002:
p.000002: 1 This also includes nursing science, health sciences and other sciences insofar as they use social and behavioural
p.000002: science research methods.
p.000002:
p.000003: 3
p.000003:
p.000003:
p.000003:
p.000003:
p.000003: 3 Scope of ethical review
p.000003:
p.000003: The National Advisory Board on Research Ethics considers that researchers must submit their research plan to ethical
p.000003: review if a study contains any of the following features:
p.000003:
p.000003: 1. The study involves an intervention in the physical integrity of subjects,
p.000003: 2. The study deviates from the principle of informed consent (ethical review is not required if the research is based
p.000003: on public documents, registries or archived data),
p.000003: 3. The subjects are children under the age of 15, and the study is not part of the normal activities of a school or an
p.000003: institution of early childhood education and care, and the data are collected without parental consent and without
p.000003: providing the parents or guardians the opportunity to prevent the child from taking part in the study,
p.000003: 4. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000003: expertise (for example, studies containing violence or pornography),
p.000003: 5. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000003: life,
p.000003: 6. The study can signify a security risk to subjects (for example, studies concerning domestic violence).
p.000003:
p.000003: A researcher can also request an ethical review if the research subject, the funding agency or a cooperation partner so
p.000003: requires or if the results are to be published in a scientific journal which requires ethical review. The reason for
p.000003: requesting an ethical review must always be specified.
p.000003:
p.000003: Ethical review does not mean transferring the ethical responsibility for the conduction and implementation of the study
...
p.000004:
p.000004: The National Advisory Board on Research Ethics considers it important that the work of ethics committees should be as
p.000004: transparent as possible within the framework of the Act on the Openness of Government Activities. This will prevent
p.000004: major policy differences between regional committees. The board recommends that requests for ethical reviews received
p.000004: by the committees and the statements they issue should be published on the websites of the committees.
p.000004:
p.000004: The National Advisory Board on Research Ethics will prepare a sample statement form for committees.
p.000004:
p.000004: In addition to ethical review, ethics committees can also handle other tasks that they deem necessary, such as the
p.000004: coordination of education in research ethics.
p.000004:
p.000004: 5 The National Advisory Board on Research Ethics' other proposals
p.000004:
p.000004: 1. A proposal to take measures to amend the Act on Medical Research so that it would cover all health research that
p.000004: involves an intervention in the physical integrity of subjects and so that the person in charge of the study could also
p.000004: be a scientifically qualified expert in some other field than medicine or dentistry.
p.000004:
p.000004: 2. A proposal to take measures to amend legislation so that the right guaranteed to children in the Constitution of
p.000004: Finland and in the UN Convention on the Rights of the Child to influence matters pertaining to themselves to a degree
p.000004: corresponding to their level of development is also implemented in matters regarding participation in research.2
p.000004:
p.000004: 3. The National Advisory Board on Research Ethics recommends that education in research ethics be promoted and given a
p.000004: permanent place in undergraduate and post- graduate education. The importance of ethics education has repeatedly come
p.000004: up in the Advisory Board’s own discussions, in the feedback from the scientific community to the Advisory Board, and in
p.000004: articles and seminar presentations on ethical review. Ethical issues in the humanities and social and behavioural
p.000004: sciences also essentially concern the research relationship and the possible consequences of research publications.
p.000004: Therefore, in addition to separate courses, ethics education in these fields should form an integral part of
p.000004: methodology training and research supervision. Since ethical issues in the humanities and social and behavioural
p.000004: sciences research cannot always be predicted and depend on the situation, graduate schools in particular should make
...
p.000005: certifiable way, unless this is contrary to the interests of subjects.
p.000005:
p.000006: 6
p.000006:
p.000006:
p.000006: For example, a person with AIDS may not want his or her name registered on a written consent.
p.000006:
p.000006: Consent can be specific or general. General consent applies to research use in general. General consent can include
p.000006: conditions regarding the form in which data are recorded and archived and conditions set for the use of data in
p.000006: secondary research.
p.000006:
p.000006: If information obtained from subjects is combined with information in official registers, subjects must be given
p.000006: detailed information on the registers that will be used.
p.000006:
p.000006: Specific consent concerns the use of information in a particular study. Specific consent with regard to the use of data
p.000006: may be justified on the grounds that data cannot be anonymized and that archiving the data with identifiers for
p.000006: secondary research would in all likelihood be harmful to subjects.
p.000006:
p.000006: Subjects have the right to withdraw from a study at any stage, but this does not mean, however, that their prior input
p.000006: (interviews etc) cannot be used in the study.
p.000006:
p.000006: 1.2 Autonomy and research involving minors
p.000006:
p.000006: According to section 6 paragraph 3 of the Constitution of Finland, children must be treated equally and as individuals
p.000006: and must be allowed to influence matters pertaining to themselves to a degree corresponding to their level of
p.000006: development. The same right is also ensured in Article 12 of the UN Convention on the Rights of the Child. On the other
p.000006: hand, according to section 4 paragraph 1 of the Child Custody and Right of Access Act (361/1983), a guardian has the
p.000006: right to decide on a child's personal matters. Balancing this right and the above- mentioned principles in the
p.000006: Constitution and the UN Convention on the Rights of the Child is not always easy. Consequently, the National Advisory
p.000006: Board on Research Ethics has called for legislation to be clarified in this respect.
p.000006:
p.000006: In practice, it cannot be assumed that researchers should always request separate consent from a guardian when research
p.000006: involves minors. First, according to the above-mentioned principles children should be able to influence matters
p.000006: pertaining to themselves to a degree corresponding to their level of development. Second, there are situations where
p.000006: there may be differences in values and interests between a guardian and a minor, and requesting the guardian's consent
p.000006: may endanger the collection of comprehensive research data on the conditions and behaviour of minors, thus restricting
p.000006: the freedom of science, which is guaranteed by the Constitution. Third, there are studies which do not include risks
p.000006: and where requesting consent from the guardian would be difficult.
p.000006:
p.000006: 1.3 Autonomy and age limits
p.000006:
p.000006: Many studies that are conducted in schools and institutions of early childhood education and care can be carried out as
p.000006: part of the normal work of the institution or school. It is not necessary to request a guardian's permission if the
p.000006: director of an institution of early childhood education and care or the head teacher of a school has evaluated that the
p.000006: study would produce useful information for the institution or school and can be carried out as part of the normal
p.000006: activities of the institution or school. For example, observations, broad questionnaires and open interviews which do
p.000006: not collect directly identifying information
p.000006:
p.000007: 7
p.000007:
p.000007:
p.000007: (names, ID’s, addresses) for research purposes can be carried out without the consent of parents or some other
p.000007: guardian. In other cases they must be informed of the study.
p.000007:
p.000007: When studying minors outside an institution of early childhood education and care or school, researchers must
p.000007: themselves evaluate when it is necessary to ask for a guardian's separate consent or inform a guardian of the study so
p.000007: that the guardian can forbid the child from participating in the study. A study involving children under the age of 15
p.000007: can be conducted without a guardian's separate consent or informing a guardian if this is justified from the viewpoint
p.000007: of 1) the age and development level of subjects, 2) the subject and research method or 3) the need for information. If
p.000007: a study is to be conducted without a guardian's separate consent or informing a guardian, an ethical review must be
p.000007: requested for studies involving subjects under the age of 15.
p.000007:
p.000007: Researchers must always respect a minor's autonomy and the principle of voluntary participation, regardless of whether
p.000007: a guardian's consent has been obtained or not.
p.000007:
p.000007: 1.4 Information for subjects
p.000007:
p.000007: The information that must be provided to research subjects depends on the nature of data collection methods. In studies
p.000007: based on observation, interviews or questionnaires, subjects must be told what the study is about and what
p.000007: participating in the study means in concrete terms and how long it will take.
p.000007:
p.000007: Information regarding a study should include at least the following: 1) the researcher's contact information, 2) the
p.000007: research topic, 3) the method of collecting data and the estimated time required, 4) the purpose for which data will be
p.000007: collected, how it will be archived for secondary use, and 5) the voluntary nature of participation.
p.000007:
...
p.000011: assault, robbery, aggravated robbery, kidnapping, hostage taking, aggravated criminal mischief, aggravated
p.000011:
p.000012: 12
p.000012:
p.000012:
p.000012: prevent an offence. A researcher does not have an obligation to reveal information regarding crimes that have already
p.000012: been committed, unless revealing information helps to prevent an imminent serious crime.
p.000012:
p.000012: According to section 25 of the Child Welfare Act (417/2007), the obligation to confidentiality can be inapplicable if
p.000012: in the course of work a researcher discovers that "there is a child for whom it is necessary to investigate the need
p.000012: for child welfare on account of the child's need for care, circumstances endangering the child's development, or the
p.000012: child's behaviour".5 The primary starting point in a researcher's work is to ensure confidentiality and remain in the
p.000012: role of researcher. In studying children and young people one must respect their own opinion if they are mature enough
p.000012: to form an opinion. If a researcher decides on the basis of the Child Welfare Act to make a report, it is good practice
p.000012: to inform the subjects in question of this intention.
p.000012:
p.000012: 3.2 Storing or destroying research data
p.000012:
p.000012: Research in the humanities and social and behavioural sciences is not always repeatable, but the scientific community
p.000012: should have the possibility, if necessary, to verify research findings from the data analysed in a study. Openness is a
p.000012: key characteristic of science and also a precondition for testing the validity of scientific information, critically
p.000012: evaluating information and advancing science.
p.000012:
p.000012: Data that are carefully archived for secondary research reduce the need to collect research data containing
p.000012: identifiers. Archiving also reduces the research pressure on small population groups. It is particularly important to
p.000012: archive for secondary research data that have cultural, historical and/or scientific value.
p.000012:
p.000012: When necessary, the protection of privacy should be ensured through anonymisation measures and through the regulation
p.000012: of access to data for secondary research.
p.000012:
p.000012: If it is necessary to remove identifiers from data stored for secondary use, the goal of the anonymisation measures
...
p.000013: this must be reached with research subjects in advance.
p.000013:
p.000013: If research concerns archived materials, the identifiability or non-identifiability of subjects in research
p.000013: publications depends on the conditions the distributing archive has set on the use of the data.
p.000013:
p.000013: 4 ETHICAL REVIEW
p.000013:
p.000013: In preparing a request for an ethical review and in evaluating the possible negative effects and risks of a study, the
p.000013: point of departure should be the ethical principles in the humanities and social and behavioural sciences (the autonomy
p.000013: of research subjects, avoiding harm, privacy and data protection). Evaluation never shifts responsibility for research
p.000013: ethics to the committee. In research in the humanities and social and behavioural sciences, ethical questions focus on
p.000013: the encounter between the researcher and the subject, which can include unanticipated factors. The researcher is always
p.000013: responsible for the ethical and moral solutions in a study.
p.000013:
p.000014: 14
p.000014:
p.000014:
p.000014:
p.000014: Researchers must submit their research plan to ethical review if a study contains any of the following features:
p.000014: 1. The study involves an intervention in the physical integrity of subjects.
p.000014: 2. The study deviates from the principle of informed consent (ethical review is not required if the research is based
p.000014: on public documents, registries or archived data).
p.000014: 3. The subjects are children under the age of 15 and the study is not part of the normal activities of a school or an
p.000014: institution of early childhood education and care and the data are collected without parental consent and without
p.000014: providing the parents or guardians the opportunity to forbid the child from taking part in the study.
p.000014: 4. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000014: expertise (for example studies containing violence or pornography).
p.000014: 5. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000014: life.
p.000014: 6. The study can signify a security risk to subjects (for example studies concerning domestic violence).
p.000014:
p.000014: A researcher can also request an ethical review if the research subject, the funding agency or a cooperation partner so
p.000014: requires or if the results are to be published in a scientific journal which requires ethical review. The reason for
p.000014: requesting an ethical review must always be specified.
p.000014:
p.000014: For example, according to the guidelines issued by the Academy of Finland, it is sufficient if a review is submitted
...
p.000015: scientific value of the study. Studies must be conducted in a manner that minimizes any negative effects and risks to
p.000015: subjects.
p.000015:
p.000016: 16
p.000016:
p.000016:
p.000016:
p.000016: Evaluating physical risks requires expertise and background information based on empirical studies. The ethics
p.000016: committee can if necessary request an ethical review from an outside expert if it considers its own expertise
p.000016: inadequate for risk evaluation.
p.000016:
p.000016: b. The study deviates from the principle of informed consent
p.000016:
p.000016: With regard to a study that deviates from the principle of informed consent, the ethics committee will evaluate whether
p.000016: conducting the study is ethically acceptable. Conducting the study is ethically acceptable if the following
p.000016: preconditions are met:
p.000016: 1. the research is justified, and it would not be possible to conduct the research if subjects were informed of the
p.000016: study and their consent asked for,
p.000016: 2. the data collection does not involve risks to participants,
p.000016: 3. if possible, research subjects will be informed afterwards of the nature and purpose of the research,
p.000016: 4. adequate attention is paid to the privacy of the research subjects and data protection issues.
p.000016:
p.000016: c. The subjects are children under the age of 15, and the study is not part of the normal activities of a school or an
p.000016: institution of early childhood education and care, and the data are collected without parental consent and without
p.000016: providing the parents or guardians the opportunity to forbid the child from taking part in the study
p.000016:
p.000016: A study involving children aged under 15 can be conducted without the consent of a parent or other guardian and without
p.000016: informing the parent or guardian if it does not involve risks to subjects, and the research design is justified by one
p.000016: or more of the following preconditions:
p.000016:
p.000016: 1) On the basis of subjects' age and level of development:
p.000016:
p.000016: The minors who are intended subjects are able to understand the research topic and what participating in the study
p.000016: requires of them in concrete terms.
p.000016:
p.000016: 2) On the basis of the research area and method:
p.000016:
p.000016: The research topic is not sensitive and asking for a parent's or guardian's consent is difficult in practice (for
p.000016: example, studies of youth clubs or school pupils' voluntary clubs etc).
p.000016:
p.000016: 3) From the viewpoint of the need for information:
p.000016:
p.000016: The subject matter of the study will prevent the collection of comprehensive data if parents’ consent must be requested
p.000016: for children's participation (for example, domestic violence, social problems etc), or the research covers issues which
p.000016: minors may not want their parents to know about (for example, use of intoxicating substances, sexual orientation etc).
p.000016:
p.000016: d. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000016: expertise (for example studies containing violence or pornography).
p.000016:
p.000016: e. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000016: life.
p.000016:
p.000017: 17
p.000017:
p.000017:
p.000017:
p.000017: f. The study can entail a security risk to subjects (for example studies concerning domestic violence).
p.000017:
p.000017: The researcher must describe possible negative effects and risks so that the ethics committee can evaluate whether the
p.000017: study is ethical, weighing possible risks to subjects against the intended scientific value of the study. Studies must
p.000017: be conducted so as to minimize any negative effects and risks to subjects.
p.000017:
p.000017: The intended scientific value will be weighed against possible negative effects and the measures that are taken to
...
Social / Elderly
Searching for indicator elderly:
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p.000005: 1. Respecting the autonomy of research subjects,
p.000005: 2. Avoiding harm and
p.000005: 3. Privacy and data protection.
p.000005:
p.000005: 1 THE AUTONOMY OF RESEARCH SUBJECTS
p.000005:
p.000005: 1.1 Voluntary participation
p.000005:
p.000005: Participation in research should be voluntary and based on informed consent. An exception from the principle of
p.000005: voluntary consent can be made when research is conducted on published and public information and archived materials.
p.000005: Research concerning official registries and documents and carried out without the consent of research subjects is
p.000005: governed by legislation.
p.000005:
p.000005: Research subjects can give consent orally or in writing, or their behaviour can otherwise be interpreted to mean that
p.000005: they have given consent to participate. For example, assenting to a polite request for an interview or responding to a
p.000005: questionnaire or request for a written response indicates that the subject has consented to be studied.
p.000005:
p.000005: In institutional settings (prisons, child protection institutions, hospitals, homes for the elderly etc) it is
p.000005: important to make sure that consent is given voluntarily by each and every subject. In evaluating the matter, attention
p.000005: must also be paid to the nature of the study, i.e. the degree to which personal matters are dealt with (need to protect
p.000005: privacy). If the research intervenes in personal integrity, it is particularly important to ensure the the genuineness
p.000005: of consent. On the whole, researchers should always take into account the constitutional rights guaranteed to each
p.000005: individual.
p.000005:
p.000005: If research intervenes in the physical integrity of subjects, consent must always be given in writing or in some other
p.000005: certifiable way, unless this is contrary to the interests of subjects.
p.000005:
p.000006: 6
p.000006:
p.000006:
p.000006: For example, a person with AIDS may not want his or her name registered on a written consent.
p.000006:
p.000006: Consent can be specific or general. General consent applies to research use in general. General consent can include
p.000006: conditions regarding the form in which data are recorded and archived and conditions set for the use of data in
p.000006: secondary research.
p.000006:
p.000006: If information obtained from subjects is combined with information in official registers, subjects must be given
p.000006: detailed information on the registers that will be used.
p.000006:
...
p.000008: them, by giving consent they have demonstrated their willingness to participate in the study while being aware of the
p.000008: study's scope and methods. If subjects participate in a study by writing about their experiences or answering a
p.000008: questionnaire, they regulate their own participation by avoiding matters and questions that they consider damaging or
p.000008: harmful.
p.000008:
p.000009: 9
p.000009:
p.000009:
p.000009: People experience things in different ways. The same research questions or topics can arouse different reactions in
p.000009: different people. Research situations can and may include the same kind of mental strain and feelings (disappointment,
p.000009: joy, sadness, hate, shame, frustration etc) as in everyday life in dealing with different aspects of human life.
p.000009:
p.000009: If a study includes interaction with subjects (participant observation, experimental study, interviews), subjects must
p.000009: be treated politely and with respect for their human dignity.
p.000009:
p.000009: A researcher must make sure that the principle of voluntary participation is also observed in situations where there is
p.000009: interaction with subjects. A subject's annoyance, embarrassment, fearfulness or physical fatigue can be sufficient
p.000009: grounds for the researcher to discontinue the study as far as the subject is concerned, even if the subject does not
p.000009: expressly refuse to continue. It is essential to ensure that subjects are participating voluntarily when studying
p.000009: people in institutional settings (hospitals, prisons, child protection institutions, homes for the elderly etc).
p.000009: Unnecessary mental strain can be avoided by testing in advance how much time subjects' participation will take.
p.000009:
p.000009: 2.2 Avoiding financial and social harm
p.000009:
p.000009: Financial and social harm to subjects is more likely if a study does not observe the ethical principles concerning
p.000009: privacy and data protection. According to the principles, systematic care must be shown in handling and storing
p.000009: confidential information. Furthermore, the duty of confidentiality must be observed regarding subjects' private matters
p.000009: (see ethical principles regarding privacy and data protection).
p.000009:
p.000009: Research publications can have harmful consequences for subjects. The risk of harm is greatest if results are presented
p.000009: judgmentally, in a prejudiced way or disrespectfully. Harm can also be caused by publishing results giving a negative
p.000009: picture that are not based on comprehensive data or the systematic analysis of data.
p.000009:
p.000009: Researchers should avoid any damage or harm to subjects that may be caused by research publications. However, this
p.000009: principle should not prevent the publication of research findings that may not be pleasing to subjects in all respects.
p.000009: A researcher's task is to produce new information without having to fear the reaction of authorities or other research
p.000009: subjects.
...
Social / Incarcerated
Searching for indicator restricted:
(return to top)
p.000009:
p.000009: 2.2 Avoiding financial and social harm
p.000009:
p.000009: Financial and social harm to subjects is more likely if a study does not observe the ethical principles concerning
p.000009: privacy and data protection. According to the principles, systematic care must be shown in handling and storing
p.000009: confidential information. Furthermore, the duty of confidentiality must be observed regarding subjects' private matters
p.000009: (see ethical principles regarding privacy and data protection).
p.000009:
p.000009: Research publications can have harmful consequences for subjects. The risk of harm is greatest if results are presented
p.000009: judgmentally, in a prejudiced way or disrespectfully. Harm can also be caused by publishing results giving a negative
p.000009: picture that are not based on comprehensive data or the systematic analysis of data.
p.000009:
p.000009: Researchers should avoid any damage or harm to subjects that may be caused by research publications. However, this
p.000009: principle should not prevent the publication of research findings that may not be pleasing to subjects in all respects.
p.000009: A researcher's task is to produce new information without having to fear the reaction of authorities or other research
p.000009: subjects.
p.000009: Particularly research concerning the use of power and the functioning of social institutions must not be restricted on
p.000009: the grounds that results can have negative effects for subjects. The best way to ensure freedom of research is to
p.000009: conduct research carefully and systematically and to publish results with proper arguments and shedding light on
p.000009: different perspectives in a balanced manner. Researchers and editors are responsible for compliance with ethical
p.000009: principles in research publications.
p.000009:
p.000009: 2.3 Studies containing risks of harm: an ethical review must be requested from the ethics committee
p.000009:
p.000009: Studies entailing possible risks that cannot be evaluated by research subjects themselves, and studies with potential
p.000009: to cause harm beyond the limits of normal life, must be evaluated in advance. This includes studies that 1) intervene
p.000009: in the physical integrity of subjects or 2) in which subjects undergo exceptionally strong stimuli and evaluating
p.000009: possible harm requires special expertise (for example, studies containing violence or pornography). In addition,
p.000009: studies in which the researcher is aware that there is a risk of causing long-term mental
p.000009:
p.000010: 10
p.000010:
p.000010:
p.000010: harm (trauma, depression, sleeplessness) beyond the risks encountered in normal life or studies that can signify a
...
p.000011: materials containing identifiers must be destroyed, and identifiers must be removed from electronic files or else
p.000011: recoded, categorised or otherwise masked.
p.000011: Identifiers that are stored for the purpose of further contacts with subjects must be protected and stored separately
p.000011: from analysed data.
p.000011:
p.000011: If research data have been collected from official documents and registers without asking for subjects' consent, both
p.000011: identifiers and sensitive information must be destroyed as soon as they are unnecessary for conducting the research.
p.000011:
p.000011: The confidentiality of research data relies on restrictions on the processing, use and storage of data. Research data
p.000011: may not be used or handed over for other uses besides research. It is particularly unacceptable to reveal information
p.000011: on research data or hand over data in such a way that it could influence the evaluation, treatment or position of
p.000011: individual subjects.
p.000011: Research data may not be handed over to the media or for commercial purposes.
p.000011:
p.000011: Protecting privacy as a constitutional right protects citizens particularly against measures taken by public
p.000011: authorities. A researcher's task is to produce scientific information to help understand social problems or society and
p.000011: culture in general. This task does not include revealing information about individual subjects to authorities. For
p.000011: example, information concerning crimes is considered to be sensitive information that is subject to and restricted by
p.000011: the researcher's obligation of confidentiality. Information regarding individual subjects in research data may not be
p.000011: revealed to tax authorities, social welfare authorities or the police.
p.000011:
p.000011: An exception to the obligation of confidentiality is every citizen's obligation to report an imminent serious offence
p.000011: that can still be prevented.4 The deciding factor is the possibility to
p.000011:
p.000011: 4 Chapter 15 section 10 of the Penal Code (563/1998): "A person who knows of imminent genocide, preparation of
p.000011: genocide, breach of the prohibition of chemical weapons, breach of the prohibition of biological weapons, compromising
p.000011: of the sovereignty of Finland, treason, aggravated treason, espionage, aggravated espionage, high treason, aggravated
p.000011: high treason, rape, aggravated rape, aggravated sexual abuse of a child, murder, manslaughter, killing, aggravated
p.000011: assault, robbery, aggravated robbery, kidnapping, hostage taking, aggravated criminal mischief, aggravated
p.000011:
p.000012: 12
p.000012:
p.000012:
p.000012: prevent an offence. A researcher does not have an obligation to reveal information regarding crimes that have already
p.000012: been committed, unless revealing information helps to prevent an imminent serious crime.
p.000012:
p.000012: According to section 25 of the Child Welfare Act (417/2007), the obligation to confidentiality can be inapplicable if
...
Social / Linguistic Proficiency
Searching for indicator language:
(return to top)
p.000002: rules. The National Advisory Board on Research Ethics proposes an ethical review system for the humanities and social
p.000002: and behavioural sciences. The review system would follow the same principles as the guidelines published by the
p.000002: National Advisory Board on Research Ethics entitled "Good scientific practice and procedures for handling misconduct
p.000002: and fraud in science" (2002). The scientific community (universities, research institutions, universities of applied
p.000002: sciences and funding agencies) has broadly made a commitment to comply with those guidelines.
p.000002:
p.000002: With the new proposal, this commitment would also include the obligation to arrange ethical review in the manner
p.000002: proposed by the National Advisory Board, and applying the ethical principles published by it. The commitment model
p.000002: provides a flexible possibility to alter the ethical review system and ethical guidelines on the basis of experience if
p.000002: this is necessary.
p.000002:
p.000002: 2 Establishment of ethics committees
p.000002:
p.000002: The National Advisory Board on Research Ethics proposes that universities and research organizations that have made a
p.000002: commitment to comply with the guidelines arrange ethical review in the way they consider best. If no organs exist to
p.000002: deal with ethical issues, ethics committees can be established within the organization or through regional cooperation.
p.000002: Cooperation can also be based on language (Finnish or Swedish).
p.000002:
p.000002: The National Advisory Board on Research Ethics recommends the establishment of regional committees particularly if, in
p.000002: addition to a university, smaller research organizations or universities of applied sciences operate in the region. The
p.000002: initiative to establish regional ethics committees should be taken by university rectors.
p.000002:
p.000002: Since ethical review examines a study's research methods, committees' composition should ensure familiarity with the
p.000002: content of research fields and broad expertise in research methods as opposed to electing representatives of every
p.000002: possible subject in the humanities and social and behavioural sciences. If necessary, the committee can ask for an
p.000002: expert in a particular field to evaluate an application if it considers its own expertise inadequate for risk
p.000002: evaluation.
p.000002:
p.000002: The National Advisory Board on Research Ethics considers it important that no fee should be charged for an ethical
p.000002: review. However, committee work requires time and money. The National Advisory Board on Research Ethics was not asked
p.000002: to propose a financing model for the system. It should be noted that some secretaries of ethics committees established
p.000002: on the basis of the Medical Research Act are employed full-time, for example.
p.000002:
p.000002: The ethics committee can request an ethical review from an outside expert if a planned study will intervene in a
...
Social / Occupation
Searching for indicator job:
(return to top)
p.000010: principle regarding the collection and storage of personal data is the need for personal data in a study. Personal data
p.000010: may not be collected and stored unnecessarily. If research data can be reasonably analysed without direct identifiers
p.000010: and there are no research grounds for storing identifiers, only data from which identifiers have been removed may be
p.000010: produced for research purposes and stored for secondary research.
p.000010:
p.000010: Data with identifiers can be collected and used when this is appropriate from the viewpoint of that particular
p.000010: research. With the consent of the subject data can also be stored for secondary research with identifiers. Research in
p.000010: the humanities and social and behavioural sciences may require the processing and storage of identifiers. This may be
p.000010: based on the need to analyse data, later contacts with subjects or the historical and cultural significance of data.
p.000010: All contemporary data may also have historical and cultural significance.
p.000010:
p.000010: 3.1 Protecting research data and confidentiality
p.000010:
p.000010:
p.000010:
p.000010:
p.000010:
p.000010: 3 With regard to identifiability the most significant thing is whether a particular individual can be identified from
p.000010: data easily and without unreasonable costs. Identifiers in research data have traditionally been divided into direct
p.000010: and indirect identifiers. Direct identifiers are name, address, data of birth and a person's voice and picture.
p.000010: Indirect identifiers are, for example, place of residence, neighbourhood, education, job and family composition.
p.000010:
p.000011: 11
p.000011:
p.000011:
p.000011: The protection of data with identifiers must be carefully planned. The protection of subjects' privacy may not be
p.000011: jeopardized by the careless storage of data or unprotected electronic data transfers.
p.000011:
p.000011: Data security solutions for data with identifiers include decisions regarding where paper materials containing
p.000011: identifiers will be stored, at what stage unnecessary data will be destroyed or how their storage and archiving will be
p.000011: arranged for secondary research. Decisions must also be made regarding how electronic data containing identifiers will
p.000011: be protected (back-up copies, user names, processing if necessary on computers not linked to a network), and to what
p.000011: extent identifiers will be deleted or stored in connection with the data to be analysed.
p.000011:
p.000011: If necessary, researchers or other research personnel handling data with identifiers can be required to sign a pledge
p.000011: of confidentiality. The research director or the principal investigator is responsible for written pledges. The
p.000011: confidentiality of data containing identifiers also applies to anyone using data, even if written pledges are not used.
p.000011:
p.000011: If subjects' personal data are not needed for data analysis, and there are no research grounds for storing them, paper
p.000011: materials containing identifiers must be destroyed, and identifiers must be removed from electronic files or else
p.000011: recoded, categorised or otherwise masked.
p.000011: Identifiers that are stored for the purpose of further contacts with subjects must be protected and stored separately
p.000011: from analysed data.
...
Social / Police Officer
Searching for indicator police:
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p.000007:
p.000008: 8
p.000008:
p.000008:
p.000008:
p.000008: If a study deviates from the principle of informed consent, an ethical review from the research ethics committee is
p.000008: always required.
p.000008:
p.000008: An exception from the principle of informed consent can be made if advance information would distort the results of the
p.000008: study. As a matter of principle, studies on the use of power should be allowed without the consent of those in power.
p.000008: There are also groups and subcultures that researchers cannot approach without using an assumed identity for the sake
p.000008: of their own safety.
p.000008:
p.000008: Data collection can deviate from the principle of informed consent in a number of ways:
p.000008:
p.000008: 1. Research subjects may be given all the relevant information but participation is not voluntary (e.g., a study based
p.000008: on participant observation of military conscripts or the observation of work processes where the organization's
p.000008: management has given permission for the research).
p.000008: 2. Research subjects may be given insufficient or misleading information about the role of the researcher. For example,
p.000008: the researcher may not identify him/herself as a researcher but does not give misleading information (e.g.,
p.000008: observational data collected from an emergency room or riding with a police squad) or the researcher may work under a
p.000008: covert role (e.g., to mislead research subjects in a field study of discrimination).
p.000008: 3. The researcher identifies him/herself but gives misleading information about the content of the study.
p.000008:
p.000008: Observing subjects in a public place does not require their consent or an ethical review from the ethics committee.
p.000008: Technical recording equipment can be used in a public place provided the principles regarding privacy and data
p.000008: protection are observed in the use, storage and archiving of data.
p.000008:
p.000008: 2 AVOIDING HARM
p.000008:
p.000008: An important task of historical and social research is to produce information on the improper functioning of social
p.000008: institutions and problems regarding the use of power.
p.000008:
p.000008: Possible harm resulting from research can stem from the collection of data, the storage of data and consequences
p.000008: following the publication of studies.
p.000008:
p.000008: 2.1 Avoiding mental harm
p.000008:
p.000008: Avoiding mental harm includes treating subjects with respect and reporting findings in a respectful way in research
p.000008: publications.
p.000008:
p.000008: How sensitive a subject matter is and what the limits of privacy are depend primarily on the research subjects
p.000008: themselves. If the subjects know what matters will be dealt with on the basis of the information that is supplied to
...
p.000011: from analysed data.
p.000011:
p.000011: If research data have been collected from official documents and registers without asking for subjects' consent, both
p.000011: identifiers and sensitive information must be destroyed as soon as they are unnecessary for conducting the research.
p.000011:
p.000011: The confidentiality of research data relies on restrictions on the processing, use and storage of data. Research data
p.000011: may not be used or handed over for other uses besides research. It is particularly unacceptable to reveal information
p.000011: on research data or hand over data in such a way that it could influence the evaluation, treatment or position of
p.000011: individual subjects.
p.000011: Research data may not be handed over to the media or for commercial purposes.
p.000011:
p.000011: Protecting privacy as a constitutional right protects citizens particularly against measures taken by public
p.000011: authorities. A researcher's task is to produce scientific information to help understand social problems or society and
p.000011: culture in general. This task does not include revealing information about individual subjects to authorities. For
p.000011: example, information concerning crimes is considered to be sensitive information that is subject to and restricted by
p.000011: the researcher's obligation of confidentiality. Information regarding individual subjects in research data may not be
p.000011: revealed to tax authorities, social welfare authorities or the police.
p.000011:
p.000011: An exception to the obligation of confidentiality is every citizen's obligation to report an imminent serious offence
p.000011: that can still be prevented.4 The deciding factor is the possibility to
p.000011:
p.000011: 4 Chapter 15 section 10 of the Penal Code (563/1998): "A person who knows of imminent genocide, preparation of
p.000011: genocide, breach of the prohibition of chemical weapons, breach of the prohibition of biological weapons, compromising
p.000011: of the sovereignty of Finland, treason, aggravated treason, espionage, aggravated espionage, high treason, aggravated
p.000011: high treason, rape, aggravated rape, aggravated sexual abuse of a child, murder, manslaughter, killing, aggravated
p.000011: assault, robbery, aggravated robbery, kidnapping, hostage taking, aggravated criminal mischief, aggravated
p.000011:
p.000012: 12
p.000012:
p.000012:
p.000012: prevent an offence. A researcher does not have an obligation to reveal information regarding crimes that have already
p.000012: been committed, unless revealing information helps to prevent an imminent serious crime.
p.000012:
p.000012: According to section 25 of the Child Welfare Act (417/2007), the obligation to confidentiality can be inapplicable if
p.000012: in the course of work a researcher discovers that "there is a child for whom it is necessary to investigate the need
...
Social / Soldier
Searching for indicator military:
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p.000007: Regardless of how data are collected, requests by the subjects for additional information must be answered truthfully.
p.000007: Research personnel should be trained to answer questions. In some studies, such as studies based on participant
p.000007: observation, the research relation deepens over time, and it is natural to provide increasingly detailed information on
p.000007: the objectives and content of the study along the way.
p.000007:
p.000007: 1.5 Exceptions from informed consent: an ethical review must be requested from the ethics committee
p.000007:
p.000008: 8
p.000008:
p.000008:
p.000008:
p.000008: If a study deviates from the principle of informed consent, an ethical review from the research ethics committee is
p.000008: always required.
p.000008:
p.000008: An exception from the principle of informed consent can be made if advance information would distort the results of the
p.000008: study. As a matter of principle, studies on the use of power should be allowed without the consent of those in power.
p.000008: There are also groups and subcultures that researchers cannot approach without using an assumed identity for the sake
p.000008: of their own safety.
p.000008:
p.000008: Data collection can deviate from the principle of informed consent in a number of ways:
p.000008:
p.000008: 1. Research subjects may be given all the relevant information but participation is not voluntary (e.g., a study based
p.000008: on participant observation of military conscripts or the observation of work processes where the organization's
p.000008: management has given permission for the research).
p.000008: 2. Research subjects may be given insufficient or misleading information about the role of the researcher. For example,
p.000008: the researcher may not identify him/herself as a researcher but does not give misleading information (e.g.,
p.000008: observational data collected from an emergency room or riding with a police squad) or the researcher may work under a
p.000008: covert role (e.g., to mislead research subjects in a field study of discrimination).
p.000008: 3. The researcher identifies him/herself but gives misleading information about the content of the study.
p.000008:
p.000008: Observing subjects in a public place does not require their consent or an ethical review from the ethics committee.
p.000008: Technical recording equipment can be used in a public place provided the principles regarding privacy and data
p.000008: protection are observed in the use, storage and archiving of data.
p.000008:
p.000008: 2 AVOIDING HARM
p.000008:
p.000008: An important task of historical and social research is to produce information on the improper functioning of social
p.000008: institutions and problems regarding the use of power.
p.000008:
p.000008: Possible harm resulting from research can stem from the collection of data, the storage of data and consequences
p.000008: following the publication of studies.
p.000008:
...
Social / Student
Searching for indicator student:
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p.000003: life,
p.000003: 6. The study can signify a security risk to subjects (for example, studies concerning domestic violence).
p.000003:
p.000003: A researcher can also request an ethical review if the research subject, the funding agency or a cooperation partner so
p.000003: requires or if the results are to be published in a scientific journal which requires ethical review. The reason for
p.000003: requesting an ethical review must always be specified.
p.000003:
p.000003: Ethical review does not mean transferring the ethical responsibility for the conduction and implementation of the study
p.000003: from the researcher to the ethics committee. Which ethics committee will conduct the review will depend on the location
p.000003: of the organization where the researcher works.
p.000003:
p.000003: The National Advisory Board on Research Ethics proposes that the ethics committees to be established should also
p.000003: evaluate studies that are conducted in health-care institutions that do not fall within the category of medical
p.000003: research as defined in the Act on Medical Research.
p.000003:
p.000003: The guidelines for ethical review are intended to cover post-graduate research. Thesis supervisors are responsible for
p.000003: ensuring that thesis work complies with the ethical principles. If the planned thesis research includes any of the
p.000003: features requiring ethical review, the student, together with his/her supervisor, must ask the ethics committee for an
p.000003: ethical review.
p.000003:
p.000003: 4 Ethics committees' work
p.000003:
p.000003: The evaluation carried out by the ethics committees should be based on the ethical principles prepared by the National
p.000003: Advisory Board on Research Ethics.
p.000003:
p.000003: Ethics committees will give a statement on the ethical acceptability of a planned study. The permission to actually
p.000003: conduct the study will be given by the organization/research target
p.000003:
p.000004: 4
p.000004:
p.000004:
p.000004: where the research is conducted, and individual research subjects will give their consent to participate in the study.
p.000004:
p.000004: A researcher can ask for a statement on an ethics committee's statement from the National Advisory Board on Research
p.000004: Ethics if he/she does not approve the changes recommended by the ethics committee.
p.000004:
p.000004: The National Advisory Board on Research Ethics considers it important that the work of ethics committees should be as
p.000004: transparent as possible within the framework of the Act on the Openness of Government Activities. This will prevent
...
Social / Threat of Violence
Searching for indicator violence:
(return to top)
p.000002:
p.000002: 1 This also includes nursing science, health sciences and other sciences insofar as they use social and behavioural
p.000002: science research methods.
p.000002:
p.000003: 3
p.000003:
p.000003:
p.000003:
p.000003:
p.000003: 3 Scope of ethical review
p.000003:
p.000003: The National Advisory Board on Research Ethics considers that researchers must submit their research plan to ethical
p.000003: review if a study contains any of the following features:
p.000003:
p.000003: 1. The study involves an intervention in the physical integrity of subjects,
p.000003: 2. The study deviates from the principle of informed consent (ethical review is not required if the research is based
p.000003: on public documents, registries or archived data),
p.000003: 3. The subjects are children under the age of 15, and the study is not part of the normal activities of a school or an
p.000003: institution of early childhood education and care, and the data are collected without parental consent and without
p.000003: providing the parents or guardians the opportunity to prevent the child from taking part in the study,
p.000003: 4. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000003: expertise (for example, studies containing violence or pornography),
p.000003: 5. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000003: life,
p.000003: 6. The study can signify a security risk to subjects (for example, studies concerning domestic violence).
p.000003:
p.000003: A researcher can also request an ethical review if the research subject, the funding agency or a cooperation partner so
p.000003: requires or if the results are to be published in a scientific journal which requires ethical review. The reason for
p.000003: requesting an ethical review must always be specified.
p.000003:
p.000003: Ethical review does not mean transferring the ethical responsibility for the conduction and implementation of the study
p.000003: from the researcher to the ethics committee. Which ethics committee will conduct the review will depend on the location
p.000003: of the organization where the researcher works.
p.000003:
p.000003: The National Advisory Board on Research Ethics proposes that the ethics committees to be established should also
p.000003: evaluate studies that are conducted in health-care institutions that do not fall within the category of medical
p.000003: research as defined in the Act on Medical Research.
p.000003:
p.000003: The guidelines for ethical review are intended to cover post-graduate research. Thesis supervisors are responsible for
p.000003: ensuring that thesis work complies with the ethical principles. If the planned thesis research includes any of the
p.000003: features requiring ethical review, the student, together with his/her supervisor, must ask the ethics committee for an
p.000003: ethical review.
p.000003:
p.000003: 4 Ethics committees' work
p.000003:
...
p.000009:
p.000009: Researchers should avoid any damage or harm to subjects that may be caused by research publications. However, this
p.000009: principle should not prevent the publication of research findings that may not be pleasing to subjects in all respects.
p.000009: A researcher's task is to produce new information without having to fear the reaction of authorities or other research
p.000009: subjects.
p.000009: Particularly research concerning the use of power and the functioning of social institutions must not be restricted on
p.000009: the grounds that results can have negative effects for subjects. The best way to ensure freedom of research is to
p.000009: conduct research carefully and systematically and to publish results with proper arguments and shedding light on
p.000009: different perspectives in a balanced manner. Researchers and editors are responsible for compliance with ethical
p.000009: principles in research publications.
p.000009:
p.000009: 2.3 Studies containing risks of harm: an ethical review must be requested from the ethics committee
p.000009:
p.000009: Studies entailing possible risks that cannot be evaluated by research subjects themselves, and studies with potential
p.000009: to cause harm beyond the limits of normal life, must be evaluated in advance. This includes studies that 1) intervene
p.000009: in the physical integrity of subjects or 2) in which subjects undergo exceptionally strong stimuli and evaluating
p.000009: possible harm requires special expertise (for example, studies containing violence or pornography). In addition,
p.000009: studies in which the researcher is aware that there is a risk of causing long-term mental
p.000009:
p.000010: 10
p.000010:
p.000010:
p.000010: harm (trauma, depression, sleeplessness) beyond the risks encountered in normal life or studies that can signify a
p.000010: security risk to subjects (for example, studies concerning family violence) must be evaluated in advance.
p.000010:
p.000010: 3 PRIVACY AND DATA PROTECTION
p.000010:
p.000010: The protection of privacy is a right protected by the Constitution of Finland. It is also an established and important
p.000010: principle in research ethics. Data protection forms the most important area of privacy protection regarding the
p.000010: collection and processing of research data and the publication of results.
p.000010: Research ethics principles concerning the protection of privacy fall into three categories: 1) protecting research data
p.000010: and confidentiality, 2) storing or disposing of research data and 3) research publications. The goal is to find a
p.000010: balance between confidentiality and the openness of science and research.
p.000010:
p.000010: Principles concerning the protection of privacy do not apply to materials that are in the public domain or to published
p.000010: data, which can concern individuals and their activities in the fields of politics, business, official activities and
p.000010: culture. Guidelines concerning privacy and principles concerning data protection must be observed with regard to court
p.000010: sessions and court decisions, however.
p.000010:
p.000010: The Personal Data Act (523/1999) contains provisions on the processing of personal data. According to section 3,
...
p.000013: ethics to the committee. In research in the humanities and social and behavioural sciences, ethical questions focus on
p.000013: the encounter between the researcher and the subject, which can include unanticipated factors. The researcher is always
p.000013: responsible for the ethical and moral solutions in a study.
p.000013:
p.000014: 14
p.000014:
p.000014:
p.000014:
p.000014: Researchers must submit their research plan to ethical review if a study contains any of the following features:
p.000014: 1. The study involves an intervention in the physical integrity of subjects.
p.000014: 2. The study deviates from the principle of informed consent (ethical review is not required if the research is based
p.000014: on public documents, registries or archived data).
p.000014: 3. The subjects are children under the age of 15 and the study is not part of the normal activities of a school or an
p.000014: institution of early childhood education and care and the data are collected without parental consent and without
p.000014: providing the parents or guardians the opportunity to forbid the child from taking part in the study.
p.000014: 4. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000014: expertise (for example studies containing violence or pornography).
p.000014: 5. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000014: life.
p.000014: 6. The study can signify a security risk to subjects (for example studies concerning domestic violence).
p.000014:
p.000014: A researcher can also request an ethical review if the research subject, the funding agency or a cooperation partner so
p.000014: requires or if the results are to be published in a scientific journal which requires ethical review. The reason for
p.000014: requesting an ethical review must always be specified.
p.000014:
p.000014: For example, according to the guidelines issued by the Academy of Finland, it is sufficient if a review is submitted
p.000014: after a positive funding decision.
p.000014:
p.000014: 4.1 Guidelines for reviewing studies
p.000014:
p.000014: An ethical review examines the plan for collecting data, how the study will be carried out, the information that will
p.000014: be given to subjects and the plan for processing and storing data from the perspective of avoiding risks and harm. The
p.000014: review weighs possible negative effects or harm to subjects resulting from participation in the study in relation to
p.000014: the intended scientific value of the study. The starting point is always the ethical principles in the humanities and
p.000014: social and behavioural sciences (the autonomy of research subjects, avoiding harm, privacy and data protection).
p.000014:
p.000014: If necessary, ethical guidelines in the particular research field should also be applied.6
p.000014:
p.000014: In the humanities and social and behavioural sciences, evaluating scientific value and risks is not a utilitarian
p.000014: cost-benefit analysis but rather a question of normative evaluation of values that are in themselves incommensurable.
...
p.000016:
p.000016: A study involving children aged under 15 can be conducted without the consent of a parent or other guardian and without
p.000016: informing the parent or guardian if it does not involve risks to subjects, and the research design is justified by one
p.000016: or more of the following preconditions:
p.000016:
p.000016: 1) On the basis of subjects' age and level of development:
p.000016:
p.000016: The minors who are intended subjects are able to understand the research topic and what participating in the study
p.000016: requires of them in concrete terms.
p.000016:
p.000016: 2) On the basis of the research area and method:
p.000016:
p.000016: The research topic is not sensitive and asking for a parent's or guardian's consent is difficult in practice (for
p.000016: example, studies of youth clubs or school pupils' voluntary clubs etc).
p.000016:
p.000016: 3) From the viewpoint of the need for information:
p.000016:
p.000016: The subject matter of the study will prevent the collection of comprehensive data if parents’ consent must be requested
p.000016: for children's participation (for example, domestic violence, social problems etc), or the research covers issues which
p.000016: minors may not want their parents to know about (for example, use of intoxicating substances, sexual orientation etc).
p.000016:
p.000016: d. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000016: expertise (for example studies containing violence or pornography).
p.000016:
p.000016: e. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000016: life.
p.000016:
p.000017: 17
p.000017:
p.000017:
p.000017:
p.000017: f. The study can entail a security risk to subjects (for example studies concerning domestic violence).
p.000017:
p.000017: The researcher must describe possible negative effects and risks so that the ethics committee can evaluate whether the
p.000017: study is ethical, weighing possible risks to subjects against the intended scientific value of the study. Studies must
p.000017: be conducted so as to minimize any negative effects and risks to subjects.
p.000017:
p.000017: The intended scientific value will be weighed against possible negative effects and the measures that are taken to
p.000017: reduce negative effects to subjects during or after the study (physical and mental harm) or to prevent them altogether
p.000017: (data protection). The evaluation must take into consideration subjects' free will and autonomy. After all, subjects
p.000017: themselves are always able to evaluate to some extent their own risks of participating in a study.
p.000017:
p.000017: In evaluating experimental studies, the ethical guidelines in the particular field can be applied in a supplementary
...
Social / Victim of Abuse
Searching for indicator trauma:
(return to top)
p.000002: science research methods.
p.000002:
p.000003: 3
p.000003:
p.000003:
p.000003:
p.000003:
p.000003: 3 Scope of ethical review
p.000003:
p.000003: The National Advisory Board on Research Ethics considers that researchers must submit their research plan to ethical
p.000003: review if a study contains any of the following features:
p.000003:
p.000003: 1. The study involves an intervention in the physical integrity of subjects,
p.000003: 2. The study deviates from the principle of informed consent (ethical review is not required if the research is based
p.000003: on public documents, registries or archived data),
p.000003: 3. The subjects are children under the age of 15, and the study is not part of the normal activities of a school or an
p.000003: institution of early childhood education and care, and the data are collected without parental consent and without
p.000003: providing the parents or guardians the opportunity to prevent the child from taking part in the study,
p.000003: 4. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000003: expertise (for example, studies containing violence or pornography),
p.000003: 5. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000003: life,
p.000003: 6. The study can signify a security risk to subjects (for example, studies concerning domestic violence).
p.000003:
p.000003: A researcher can also request an ethical review if the research subject, the funding agency or a cooperation partner so
p.000003: requires or if the results are to be published in a scientific journal which requires ethical review. The reason for
p.000003: requesting an ethical review must always be specified.
p.000003:
p.000003: Ethical review does not mean transferring the ethical responsibility for the conduction and implementation of the study
p.000003: from the researcher to the ethics committee. Which ethics committee will conduct the review will depend on the location
p.000003: of the organization where the researcher works.
p.000003:
p.000003: The National Advisory Board on Research Ethics proposes that the ethics committees to be established should also
p.000003: evaluate studies that are conducted in health-care institutions that do not fall within the category of medical
p.000003: research as defined in the Act on Medical Research.
p.000003:
p.000003: The guidelines for ethical review are intended to cover post-graduate research. Thesis supervisors are responsible for
p.000003: ensuring that thesis work complies with the ethical principles. If the planned thesis research includes any of the
...
p.000009: subjects.
p.000009: Particularly research concerning the use of power and the functioning of social institutions must not be restricted on
p.000009: the grounds that results can have negative effects for subjects. The best way to ensure freedom of research is to
p.000009: conduct research carefully and systematically and to publish results with proper arguments and shedding light on
p.000009: different perspectives in a balanced manner. Researchers and editors are responsible for compliance with ethical
p.000009: principles in research publications.
p.000009:
p.000009: 2.3 Studies containing risks of harm: an ethical review must be requested from the ethics committee
p.000009:
p.000009: Studies entailing possible risks that cannot be evaluated by research subjects themselves, and studies with potential
p.000009: to cause harm beyond the limits of normal life, must be evaluated in advance. This includes studies that 1) intervene
p.000009: in the physical integrity of subjects or 2) in which subjects undergo exceptionally strong stimuli and evaluating
p.000009: possible harm requires special expertise (for example, studies containing violence or pornography). In addition,
p.000009: studies in which the researcher is aware that there is a risk of causing long-term mental
p.000009:
p.000010: 10
p.000010:
p.000010:
p.000010: harm (trauma, depression, sleeplessness) beyond the risks encountered in normal life or studies that can signify a
p.000010: security risk to subjects (for example, studies concerning family violence) must be evaluated in advance.
p.000010:
p.000010: 3 PRIVACY AND DATA PROTECTION
p.000010:
p.000010: The protection of privacy is a right protected by the Constitution of Finland. It is also an established and important
p.000010: principle in research ethics. Data protection forms the most important area of privacy protection regarding the
p.000010: collection and processing of research data and the publication of results.
p.000010: Research ethics principles concerning the protection of privacy fall into three categories: 1) protecting research data
p.000010: and confidentiality, 2) storing or disposing of research data and 3) research publications. The goal is to find a
p.000010: balance between confidentiality and the openness of science and research.
p.000010:
p.000010: Principles concerning the protection of privacy do not apply to materials that are in the public domain or to published
p.000010: data, which can concern individuals and their activities in the fields of politics, business, official activities and
...
p.000013: the encounter between the researcher and the subject, which can include unanticipated factors. The researcher is always
p.000013: responsible for the ethical and moral solutions in a study.
p.000013:
p.000014: 14
p.000014:
p.000014:
p.000014:
p.000014: Researchers must submit their research plan to ethical review if a study contains any of the following features:
p.000014: 1. The study involves an intervention in the physical integrity of subjects.
p.000014: 2. The study deviates from the principle of informed consent (ethical review is not required if the research is based
p.000014: on public documents, registries or archived data).
p.000014: 3. The subjects are children under the age of 15 and the study is not part of the normal activities of a school or an
p.000014: institution of early childhood education and care and the data are collected without parental consent and without
p.000014: providing the parents or guardians the opportunity to forbid the child from taking part in the study.
p.000014: 4. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000014: expertise (for example studies containing violence or pornography).
p.000014: 5. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000014: life.
p.000014: 6. The study can signify a security risk to subjects (for example studies concerning domestic violence).
p.000014:
p.000014: A researcher can also request an ethical review if the research subject, the funding agency or a cooperation partner so
p.000014: requires or if the results are to be published in a scientific journal which requires ethical review. The reason for
p.000014: requesting an ethical review must always be specified.
p.000014:
p.000014: For example, according to the guidelines issued by the Academy of Finland, it is sufficient if a review is submitted
p.000014: after a positive funding decision.
p.000014:
p.000014: 4.1 Guidelines for reviewing studies
p.000014:
p.000014: An ethical review examines the plan for collecting data, how the study will be carried out, the information that will
p.000014: be given to subjects and the plan for processing and storing data from the perspective of avoiding risks and harm. The
p.000014: review weighs possible negative effects or harm to subjects resulting from participation in the study in relation to
p.000014: the intended scientific value of the study. The starting point is always the ethical principles in the humanities and
p.000014: social and behavioural sciences (the autonomy of research subjects, avoiding harm, privacy and data protection).
p.000014:
p.000014: If necessary, ethical guidelines in the particular research field should also be applied.6
p.000014:
...
p.000016: The minors who are intended subjects are able to understand the research topic and what participating in the study
p.000016: requires of them in concrete terms.
p.000016:
p.000016: 2) On the basis of the research area and method:
p.000016:
p.000016: The research topic is not sensitive and asking for a parent's or guardian's consent is difficult in practice (for
p.000016: example, studies of youth clubs or school pupils' voluntary clubs etc).
p.000016:
p.000016: 3) From the viewpoint of the need for information:
p.000016:
p.000016: The subject matter of the study will prevent the collection of comprehensive data if parents’ consent must be requested
p.000016: for children's participation (for example, domestic violence, social problems etc), or the research covers issues which
p.000016: minors may not want their parents to know about (for example, use of intoxicating substances, sexual orientation etc).
p.000016:
p.000016: d. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000016: expertise (for example studies containing violence or pornography).
p.000016:
p.000016: e. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000016: life.
p.000016:
p.000017: 17
p.000017:
p.000017:
p.000017:
p.000017: f. The study can entail a security risk to subjects (for example studies concerning domestic violence).
p.000017:
p.000017: The researcher must describe possible negative effects and risks so that the ethics committee can evaluate whether the
p.000017: study is ethical, weighing possible risks to subjects against the intended scientific value of the study. Studies must
p.000017: be conducted so as to minimize any negative effects and risks to subjects.
p.000017:
p.000017: The intended scientific value will be weighed against possible negative effects and the measures that are taken to
p.000017: reduce negative effects to subjects during or after the study (physical and mental harm) or to prevent them altogether
p.000017: (data protection). The evaluation must take into consideration subjects' free will and autonomy. After all, subjects
p.000017: themselves are always able to evaluate to some extent their own risks of participating in a study.
p.000017:
p.000017: In evaluating experimental studies, the ethical guidelines in the particular field can be applied in a supplementary
...
Searching for indicator abuse:
(return to top)
p.000011: individual subjects.
p.000011: Research data may not be handed over to the media or for commercial purposes.
p.000011:
p.000011: Protecting privacy as a constitutional right protects citizens particularly against measures taken by public
p.000011: authorities. A researcher's task is to produce scientific information to help understand social problems or society and
p.000011: culture in general. This task does not include revealing information about individual subjects to authorities. For
p.000011: example, information concerning crimes is considered to be sensitive information that is subject to and restricted by
p.000011: the researcher's obligation of confidentiality. Information regarding individual subjects in research data may not be
p.000011: revealed to tax authorities, social welfare authorities or the police.
p.000011:
p.000011: An exception to the obligation of confidentiality is every citizen's obligation to report an imminent serious offence
p.000011: that can still be prevented.4 The deciding factor is the possibility to
p.000011:
p.000011: 4 Chapter 15 section 10 of the Penal Code (563/1998): "A person who knows of imminent genocide, preparation of
p.000011: genocide, breach of the prohibition of chemical weapons, breach of the prohibition of biological weapons, compromising
p.000011: of the sovereignty of Finland, treason, aggravated treason, espionage, aggravated espionage, high treason, aggravated
p.000011: high treason, rape, aggravated rape, aggravated sexual abuse of a child, murder, manslaughter, killing, aggravated
p.000011: assault, robbery, aggravated robbery, kidnapping, hostage taking, aggravated criminal mischief, aggravated
p.000011:
p.000012: 12
p.000012:
p.000012:
p.000012: prevent an offence. A researcher does not have an obligation to reveal information regarding crimes that have already
p.000012: been committed, unless revealing information helps to prevent an imminent serious crime.
p.000012:
p.000012: According to section 25 of the Child Welfare Act (417/2007), the obligation to confidentiality can be inapplicable if
p.000012: in the course of work a researcher discovers that "there is a child for whom it is necessary to investigate the need
p.000012: for child welfare on account of the child's need for care, circumstances endangering the child's development, or the
p.000012: child's behaviour".5 The primary starting point in a researcher's work is to ensure confidentiality and remain in the
p.000012: role of researcher. In studying children and young people one must respect their own opinion if they are mature enough
...
Social / Youth/Minors
Searching for indicator minor:
(return to top)
p.000006: and must be allowed to influence matters pertaining to themselves to a degree corresponding to their level of
p.000006: development. The same right is also ensured in Article 12 of the UN Convention on the Rights of the Child. On the other
p.000006: hand, according to section 4 paragraph 1 of the Child Custody and Right of Access Act (361/1983), a guardian has the
p.000006: right to decide on a child's personal matters. Balancing this right and the above- mentioned principles in the
p.000006: Constitution and the UN Convention on the Rights of the Child is not always easy. Consequently, the National Advisory
p.000006: Board on Research Ethics has called for legislation to be clarified in this respect.
p.000006:
p.000006: In practice, it cannot be assumed that researchers should always request separate consent from a guardian when research
p.000006: involves minors. First, according to the above-mentioned principles children should be able to influence matters
p.000006: pertaining to themselves to a degree corresponding to their level of development. Second, there are situations where
p.000006: there may be differences in values and interests between a guardian and a minor, and requesting the guardian's consent
p.000006: may endanger the collection of comprehensive research data on the conditions and behaviour of minors, thus restricting
p.000006: the freedom of science, which is guaranteed by the Constitution. Third, there are studies which do not include risks
p.000006: and where requesting consent from the guardian would be difficult.
p.000006:
p.000006: 1.3 Autonomy and age limits
p.000006:
p.000006: Many studies that are conducted in schools and institutions of early childhood education and care can be carried out as
p.000006: part of the normal work of the institution or school. It is not necessary to request a guardian's permission if the
p.000006: director of an institution of early childhood education and care or the head teacher of a school has evaluated that the
p.000006: study would produce useful information for the institution or school and can be carried out as part of the normal
p.000006: activities of the institution or school. For example, observations, broad questionnaires and open interviews which do
p.000006: not collect directly identifying information
p.000006:
p.000007: 7
p.000007:
p.000007:
p.000007: (names, ID’s, addresses) for research purposes can be carried out without the consent of parents or some other
p.000007: guardian. In other cases they must be informed of the study.
p.000007:
p.000007: When studying minors outside an institution of early childhood education and care or school, researchers must
p.000007: themselves evaluate when it is necessary to ask for a guardian's separate consent or inform a guardian of the study so
p.000007: that the guardian can forbid the child from participating in the study. A study involving children under the age of 15
p.000007: can be conducted without a guardian's separate consent or informing a guardian if this is justified from the viewpoint
p.000007: of 1) the age and development level of subjects, 2) the subject and research method or 3) the need for information. If
p.000007: a study is to be conducted without a guardian's separate consent or informing a guardian, an ethical review must be
p.000007: requested for studies involving subjects under the age of 15.
p.000007:
p.000007: Researchers must always respect a minor's autonomy and the principle of voluntary participation, regardless of whether
p.000007: a guardian's consent has been obtained or not.
p.000007:
p.000007: 1.4 Information for subjects
p.000007:
p.000007: The information that must be provided to research subjects depends on the nature of data collection methods. In studies
p.000007: based on observation, interviews or questionnaires, subjects must be told what the study is about and what
p.000007: participating in the study means in concrete terms and how long it will take.
p.000007:
p.000007: Information regarding a study should include at least the following: 1) the researcher's contact information, 2) the
p.000007: research topic, 3) the method of collecting data and the estimated time required, 4) the purpose for which data will be
p.000007: collected, how it will be archived for secondary use, and 5) the voluntary nature of participation.
p.000007:
p.000007: Subjects may ask for additional information regarding the study and researchers should prepare for this in advance.
p.000007: Additional information can concern, for example, 1) a study's scientific or doctrinal orientation, 2) how confidential
p.000007: data will be protected and where data will be archived after the study, 3) how and when the results of the study will
p.000007: be published.
p.000007:
p.000007: In experimental studies sufficient information must be provided concerning the design of the experiment. Experimental
p.000007: designs vary considerably from one field to another. Determining the adequacy of information is always up to the
p.000007: researcher according to the guidelines in the particular field.
p.000007:
p.000007: If a study intervenes in the physical integrity of subjects, the information given to subjects must comply with the
...
Searching for indicator youth:
(return to top)
p.000016: institution of early childhood education and care, and the data are collected without parental consent and without
p.000016: providing the parents or guardians the opportunity to forbid the child from taking part in the study
p.000016:
p.000016: A study involving children aged under 15 can be conducted without the consent of a parent or other guardian and without
p.000016: informing the parent or guardian if it does not involve risks to subjects, and the research design is justified by one
p.000016: or more of the following preconditions:
p.000016:
p.000016: 1) On the basis of subjects' age and level of development:
p.000016:
p.000016: The minors who are intended subjects are able to understand the research topic and what participating in the study
p.000016: requires of them in concrete terms.
p.000016:
p.000016: 2) On the basis of the research area and method:
p.000016:
p.000016: The research topic is not sensitive and asking for a parent's or guardian's consent is difficult in practice (for
p.000016: example, studies of youth clubs or school pupils' voluntary clubs etc).
p.000016:
p.000016: 3) From the viewpoint of the need for information:
p.000016:
p.000016: The subject matter of the study will prevent the collection of comprehensive data if parents’ consent must be requested
p.000016: for children's participation (for example, domestic violence, social problems etc), or the research covers issues which
p.000016: minors may not want their parents to know about (for example, use of intoxicating substances, sexual orientation etc).
p.000016:
p.000016: d. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000016: expertise (for example studies containing violence or pornography).
p.000016:
p.000016: e. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000016: life.
p.000016:
p.000017: 17
p.000017:
p.000017:
p.000017:
p.000017: f. The study can entail a security risk to subjects (for example studies concerning domestic violence).
p.000017:
p.000017: The researcher must describe possible negative effects and risks so that the ethics committee can evaluate whether the
...
Social / education
Searching for indicator education:
(return to top)
p.000002: to propose a financing model for the system. It should be noted that some secretaries of ethics committees established
p.000002: on the basis of the Medical Research Act are employed full-time, for example.
p.000002:
p.000002: The ethics committee can request an ethical review from an outside expert if a planned study will intervene in a
p.000002: subject's personal integrity and if it considers its own expertise inadequate for risk evaluation.
p.000002:
p.000002: 1 This also includes nursing science, health sciences and other sciences insofar as they use social and behavioural
p.000002: science research methods.
p.000002:
p.000003: 3
p.000003:
p.000003:
p.000003:
p.000003:
p.000003: 3 Scope of ethical review
p.000003:
p.000003: The National Advisory Board on Research Ethics considers that researchers must submit their research plan to ethical
p.000003: review if a study contains any of the following features:
p.000003:
p.000003: 1. The study involves an intervention in the physical integrity of subjects,
p.000003: 2. The study deviates from the principle of informed consent (ethical review is not required if the research is based
p.000003: on public documents, registries or archived data),
p.000003: 3. The subjects are children under the age of 15, and the study is not part of the normal activities of a school or an
p.000003: institution of early childhood education and care, and the data are collected without parental consent and without
p.000003: providing the parents or guardians the opportunity to prevent the child from taking part in the study,
p.000003: 4. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000003: expertise (for example, studies containing violence or pornography),
p.000003: 5. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000003: life,
p.000003: 6. The study can signify a security risk to subjects (for example, studies concerning domestic violence).
p.000003:
p.000003: A researcher can also request an ethical review if the research subject, the funding agency or a cooperation partner so
p.000003: requires or if the results are to be published in a scientific journal which requires ethical review. The reason for
p.000003: requesting an ethical review must always be specified.
p.000003:
p.000003: Ethical review does not mean transferring the ethical responsibility for the conduction and implementation of the study
p.000003: from the researcher to the ethics committee. Which ethics committee will conduct the review will depend on the location
p.000003: of the organization where the researcher works.
p.000003:
...
p.000003: conduct the study will be given by the organization/research target
p.000003:
p.000004: 4
p.000004:
p.000004:
p.000004: where the research is conducted, and individual research subjects will give their consent to participate in the study.
p.000004:
p.000004: A researcher can ask for a statement on an ethics committee's statement from the National Advisory Board on Research
p.000004: Ethics if he/she does not approve the changes recommended by the ethics committee.
p.000004:
p.000004: The National Advisory Board on Research Ethics considers it important that the work of ethics committees should be as
p.000004: transparent as possible within the framework of the Act on the Openness of Government Activities. This will prevent
p.000004: major policy differences between regional committees. The board recommends that requests for ethical reviews received
p.000004: by the committees and the statements they issue should be published on the websites of the committees.
p.000004:
p.000004: The National Advisory Board on Research Ethics will prepare a sample statement form for committees.
p.000004:
p.000004: In addition to ethical review, ethics committees can also handle other tasks that they deem necessary, such as the
p.000004: coordination of education in research ethics.
p.000004:
p.000004: 5 The National Advisory Board on Research Ethics' other proposals
p.000004:
p.000004: 1. A proposal to take measures to amend the Act on Medical Research so that it would cover all health research that
p.000004: involves an intervention in the physical integrity of subjects and so that the person in charge of the study could also
p.000004: be a scientifically qualified expert in some other field than medicine or dentistry.
p.000004:
p.000004: 2. A proposal to take measures to amend legislation so that the right guaranteed to children in the Constitution of
p.000004: Finland and in the UN Convention on the Rights of the Child to influence matters pertaining to themselves to a degree
p.000004: corresponding to their level of development is also implemented in matters regarding participation in research.2
p.000004:
p.000004: 3. The National Advisory Board on Research Ethics recommends that education in research ethics be promoted and given a
p.000004: permanent place in undergraduate and post- graduate education. The importance of ethics education has repeatedly come
p.000004: up in the Advisory Board’s own discussions, in the feedback from the scientific community to the Advisory Board, and in
p.000004: articles and seminar presentations on ethical review. Ethical issues in the humanities and social and behavioural
p.000004: sciences also essentially concern the research relationship and the possible consequences of research publications.
p.000004: Therefore, in addition to separate courses, ethics education in these fields should form an integral part of
p.000004: methodology training and research supervision. Since ethical issues in the humanities and social and behavioural
p.000004: sciences research cannot always be predicted and depend on the situation, graduate schools in particular should make
p.000004: sure that researchers are given opportunities to discuss any problematic situations with experienced researchers and
p.000004: with other post-graduate students.
p.000004:
p.000004: 2 See also Liisa Nieminen, Lapset tutkimuskohteena: Kuka päättää lapsen osallistumisesta tutkimukseen? Lakimies 2/2009,
p.000004: pp. 226-253.
p.000004:
p.000005: 5
p.000005:
p.000005:
p.000005:
p.000005: 4. The National Advisory Board on Research Ethics considers it important that the functionality of the proposed new
p.000005: system and the ethical review guidelines, as well as any problems that may arise, are evaluated by the end of 2011. For
p.000005: this purpose, information should be collected on the composition and activities of the ethics committees. Basic
p.000005: information on requests for ethical review should be collected 1) by discipline, 2) according to the reasons for
p.000005: requests, 3) according to the main data collection method and 4) on applications that have to be reconsidered and
p.000005: changes recommended by the committee along with the reasons for suggested alterations. The National Advisory Board on
p.000005: Research Ethics will draft a form for collecting information.
p.000005:
p.000005: ETHICAL PRINCIPLES OF RESEARCH IN THE HUMANITIES AND SOCIAL AND BEHAVIOURAL SCIENCES
p.000005:
...
p.000006: Constitution and the UN Convention on the Rights of the Child is not always easy. Consequently, the National Advisory
p.000006: Board on Research Ethics has called for legislation to be clarified in this respect.
p.000006:
p.000006: In practice, it cannot be assumed that researchers should always request separate consent from a guardian when research
p.000006: involves minors. First, according to the above-mentioned principles children should be able to influence matters
p.000006: pertaining to themselves to a degree corresponding to their level of development. Second, there are situations where
p.000006: there may be differences in values and interests between a guardian and a minor, and requesting the guardian's consent
p.000006: may endanger the collection of comprehensive research data on the conditions and behaviour of minors, thus restricting
p.000006: the freedom of science, which is guaranteed by the Constitution. Third, there are studies which do not include risks
p.000006: and where requesting consent from the guardian would be difficult.
p.000006:
p.000006: 1.3 Autonomy and age limits
p.000006:
p.000006: Many studies that are conducted in schools and institutions of early childhood education and care can be carried out as
p.000006: part of the normal work of the institution or school. It is not necessary to request a guardian's permission if the
p.000006: director of an institution of early childhood education and care or the head teacher of a school has evaluated that the
p.000006: study would produce useful information for the institution or school and can be carried out as part of the normal
p.000006: activities of the institution or school. For example, observations, broad questionnaires and open interviews which do
p.000006: not collect directly identifying information
p.000006:
p.000007: 7
p.000007:
p.000007:
p.000007: (names, ID’s, addresses) for research purposes can be carried out without the consent of parents or some other
p.000007: guardian. In other cases they must be informed of the study.
p.000007:
p.000007: When studying minors outside an institution of early childhood education and care or school, researchers must
p.000007: themselves evaluate when it is necessary to ask for a guardian's separate consent or inform a guardian of the study so
p.000007: that the guardian can forbid the child from participating in the study. A study involving children under the age of 15
p.000007: can be conducted without a guardian's separate consent or informing a guardian if this is justified from the viewpoint
p.000007: of 1) the age and development level of subjects, 2) the subject and research method or 3) the need for information. If
p.000007: a study is to be conducted without a guardian's separate consent or informing a guardian, an ethical review must be
p.000007: requested for studies involving subjects under the age of 15.
p.000007:
p.000007: Researchers must always respect a minor's autonomy and the principle of voluntary participation, regardless of whether
p.000007: a guardian's consent has been obtained or not.
p.000007:
p.000007: 1.4 Information for subjects
p.000007:
p.000007: The information that must be provided to research subjects depends on the nature of data collection methods. In studies
p.000007: based on observation, interviews or questionnaires, subjects must be told what the study is about and what
...
p.000010: principle regarding the collection and storage of personal data is the need for personal data in a study. Personal data
p.000010: may not be collected and stored unnecessarily. If research data can be reasonably analysed without direct identifiers
p.000010: and there are no research grounds for storing identifiers, only data from which identifiers have been removed may be
p.000010: produced for research purposes and stored for secondary research.
p.000010:
p.000010: Data with identifiers can be collected and used when this is appropriate from the viewpoint of that particular
p.000010: research. With the consent of the subject data can also be stored for secondary research with identifiers. Research in
p.000010: the humanities and social and behavioural sciences may require the processing and storage of identifiers. This may be
p.000010: based on the need to analyse data, later contacts with subjects or the historical and cultural significance of data.
p.000010: All contemporary data may also have historical and cultural significance.
p.000010:
p.000010: 3.1 Protecting research data and confidentiality
p.000010:
p.000010:
p.000010:
p.000010:
p.000010:
p.000010: 3 With regard to identifiability the most significant thing is whether a particular individual can be identified from
p.000010: data easily and without unreasonable costs. Identifiers in research data have traditionally been divided into direct
p.000010: and indirect identifiers. Direct identifiers are name, address, data of birth and a person's voice and picture.
p.000010: Indirect identifiers are, for example, place of residence, neighbourhood, education, job and family composition.
p.000010:
p.000011: 11
p.000011:
p.000011:
p.000011: The protection of data with identifiers must be carefully planned. The protection of subjects' privacy may not be
p.000011: jeopardized by the careless storage of data or unprotected electronic data transfers.
p.000011:
p.000011: Data security solutions for data with identifiers include decisions regarding where paper materials containing
p.000011: identifiers will be stored, at what stage unnecessary data will be destroyed or how their storage and archiving will be
p.000011: arranged for secondary research. Decisions must also be made regarding how electronic data containing identifiers will
p.000011: be protected (back-up copies, user names, processing if necessary on computers not linked to a network), and to what
p.000011: extent identifiers will be deleted or stored in connection with the data to be analysed.
p.000011:
p.000011: If necessary, researchers or other research personnel handling data with identifiers can be required to sign a pledge
p.000011: of confidentiality. The research director or the principal investigator is responsible for written pledges. The
p.000011: confidentiality of data containing identifiers also applies to anyone using data, even if written pledges are not used.
p.000011:
p.000011: If subjects' personal data are not needed for data analysis, and there are no research grounds for storing them, paper
p.000011: materials containing identifiers must be destroyed, and identifiers must be removed from electronic files or else
p.000011: recoded, categorised or otherwise masked.
...
p.000013:
p.000013: 4 ETHICAL REVIEW
p.000013:
p.000013: In preparing a request for an ethical review and in evaluating the possible negative effects and risks of a study, the
p.000013: point of departure should be the ethical principles in the humanities and social and behavioural sciences (the autonomy
p.000013: of research subjects, avoiding harm, privacy and data protection). Evaluation never shifts responsibility for research
p.000013: ethics to the committee. In research in the humanities and social and behavioural sciences, ethical questions focus on
p.000013: the encounter between the researcher and the subject, which can include unanticipated factors. The researcher is always
p.000013: responsible for the ethical and moral solutions in a study.
p.000013:
p.000014: 14
p.000014:
p.000014:
p.000014:
p.000014: Researchers must submit their research plan to ethical review if a study contains any of the following features:
p.000014: 1. The study involves an intervention in the physical integrity of subjects.
p.000014: 2. The study deviates from the principle of informed consent (ethical review is not required if the research is based
p.000014: on public documents, registries or archived data).
p.000014: 3. The subjects are children under the age of 15 and the study is not part of the normal activities of a school or an
p.000014: institution of early childhood education and care and the data are collected without parental consent and without
p.000014: providing the parents or guardians the opportunity to forbid the child from taking part in the study.
p.000014: 4. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000014: expertise (for example studies containing violence or pornography).
p.000014: 5. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000014: life.
p.000014: 6. The study can signify a security risk to subjects (for example studies concerning domestic violence).
p.000014:
p.000014: A researcher can also request an ethical review if the research subject, the funding agency or a cooperation partner so
p.000014: requires or if the results are to be published in a scientific journal which requires ethical review. The reason for
p.000014: requesting an ethical review must always be specified.
p.000014:
p.000014: For example, according to the guidelines issued by the Academy of Finland, it is sufficient if a review is submitted
p.000014: after a positive funding decision.
p.000014:
p.000014: 4.1 Guidelines for reviewing studies
p.000014:
p.000014: An ethical review examines the plan for collecting data, how the study will be carried out, the information that will
...
p.000015: subjects.
p.000015:
p.000016: 16
p.000016:
p.000016:
p.000016:
p.000016: Evaluating physical risks requires expertise and background information based on empirical studies. The ethics
p.000016: committee can if necessary request an ethical review from an outside expert if it considers its own expertise
p.000016: inadequate for risk evaluation.
p.000016:
p.000016: b. The study deviates from the principle of informed consent
p.000016:
p.000016: With regard to a study that deviates from the principle of informed consent, the ethics committee will evaluate whether
p.000016: conducting the study is ethically acceptable. Conducting the study is ethically acceptable if the following
p.000016: preconditions are met:
p.000016: 1. the research is justified, and it would not be possible to conduct the research if subjects were informed of the
p.000016: study and their consent asked for,
p.000016: 2. the data collection does not involve risks to participants,
p.000016: 3. if possible, research subjects will be informed afterwards of the nature and purpose of the research,
p.000016: 4. adequate attention is paid to the privacy of the research subjects and data protection issues.
p.000016:
p.000016: c. The subjects are children under the age of 15, and the study is not part of the normal activities of a school or an
p.000016: institution of early childhood education and care, and the data are collected without parental consent and without
p.000016: providing the parents or guardians the opportunity to forbid the child from taking part in the study
p.000016:
p.000016: A study involving children aged under 15 can be conducted without the consent of a parent or other guardian and without
p.000016: informing the parent or guardian if it does not involve risks to subjects, and the research design is justified by one
p.000016: or more of the following preconditions:
p.000016:
p.000016: 1) On the basis of subjects' age and level of development:
p.000016:
p.000016: The minors who are intended subjects are able to understand the research topic and what participating in the study
p.000016: requires of them in concrete terms.
p.000016:
p.000016: 2) On the basis of the research area and method:
p.000016:
p.000016: The research topic is not sensitive and asking for a parent's or guardian's consent is difficult in practice (for
p.000016: example, studies of youth clubs or school pupils' voluntary clubs etc).
p.000016:
p.000016: 3) From the viewpoint of the need for information:
p.000016:
...
Social / parents
Searching for indicator parent:
(return to top)
p.000016: conducting the study is ethically acceptable. Conducting the study is ethically acceptable if the following
p.000016: preconditions are met:
p.000016: 1. the research is justified, and it would not be possible to conduct the research if subjects were informed of the
p.000016: study and their consent asked for,
p.000016: 2. the data collection does not involve risks to participants,
p.000016: 3. if possible, research subjects will be informed afterwards of the nature and purpose of the research,
p.000016: 4. adequate attention is paid to the privacy of the research subjects and data protection issues.
p.000016:
p.000016: c. The subjects are children under the age of 15, and the study is not part of the normal activities of a school or an
p.000016: institution of early childhood education and care, and the data are collected without parental consent and without
p.000016: providing the parents or guardians the opportunity to forbid the child from taking part in the study
p.000016:
p.000016: A study involving children aged under 15 can be conducted without the consent of a parent or other guardian and without
p.000016: informing the parent or guardian if it does not involve risks to subjects, and the research design is justified by one
p.000016: or more of the following preconditions:
p.000016:
p.000016: 1) On the basis of subjects' age and level of development:
p.000016:
p.000016: The minors who are intended subjects are able to understand the research topic and what participating in the study
p.000016: requires of them in concrete terms.
p.000016:
p.000016: 2) On the basis of the research area and method:
p.000016:
p.000016: The research topic is not sensitive and asking for a parent's or guardian's consent is difficult in practice (for
p.000016: example, studies of youth clubs or school pupils' voluntary clubs etc).
p.000016:
p.000016: 3) From the viewpoint of the need for information:
p.000016:
p.000016: The subject matter of the study will prevent the collection of comprehensive data if parents’ consent must be requested
p.000016: for children's participation (for example, domestic violence, social problems etc), or the research covers issues which
p.000016: minors may not want their parents to know about (for example, use of intoxicating substances, sexual orientation etc).
p.000016:
p.000016: d. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000016: expertise (for example studies containing violence or pornography).
p.000016:
p.000016: e. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000016: life.
p.000016:
p.000017: 17
p.000017:
p.000017:
p.000017:
...
Searching for indicator parents:
(return to top)
p.000002: on the basis of the Medical Research Act are employed full-time, for example.
p.000002:
p.000002: The ethics committee can request an ethical review from an outside expert if a planned study will intervene in a
p.000002: subject's personal integrity and if it considers its own expertise inadequate for risk evaluation.
p.000002:
p.000002: 1 This also includes nursing science, health sciences and other sciences insofar as they use social and behavioural
p.000002: science research methods.
p.000002:
p.000003: 3
p.000003:
p.000003:
p.000003:
p.000003:
p.000003: 3 Scope of ethical review
p.000003:
p.000003: The National Advisory Board on Research Ethics considers that researchers must submit their research plan to ethical
p.000003: review if a study contains any of the following features:
p.000003:
p.000003: 1. The study involves an intervention in the physical integrity of subjects,
p.000003: 2. The study deviates from the principle of informed consent (ethical review is not required if the research is based
p.000003: on public documents, registries or archived data),
p.000003: 3. The subjects are children under the age of 15, and the study is not part of the normal activities of a school or an
p.000003: institution of early childhood education and care, and the data are collected without parental consent and without
p.000003: providing the parents or guardians the opportunity to prevent the child from taking part in the study,
p.000003: 4. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000003: expertise (for example, studies containing violence or pornography),
p.000003: 5. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000003: life,
p.000003: 6. The study can signify a security risk to subjects (for example, studies concerning domestic violence).
p.000003:
p.000003: A researcher can also request an ethical review if the research subject, the funding agency or a cooperation partner so
p.000003: requires or if the results are to be published in a scientific journal which requires ethical review. The reason for
p.000003: requesting an ethical review must always be specified.
p.000003:
p.000003: Ethical review does not mean transferring the ethical responsibility for the conduction and implementation of the study
p.000003: from the researcher to the ethics committee. Which ethics committee will conduct the review will depend on the location
p.000003: of the organization where the researcher works.
p.000003:
...
p.000006: there may be differences in values and interests between a guardian and a minor, and requesting the guardian's consent
p.000006: may endanger the collection of comprehensive research data on the conditions and behaviour of minors, thus restricting
p.000006: the freedom of science, which is guaranteed by the Constitution. Third, there are studies which do not include risks
p.000006: and where requesting consent from the guardian would be difficult.
p.000006:
p.000006: 1.3 Autonomy and age limits
p.000006:
p.000006: Many studies that are conducted in schools and institutions of early childhood education and care can be carried out as
p.000006: part of the normal work of the institution or school. It is not necessary to request a guardian's permission if the
p.000006: director of an institution of early childhood education and care or the head teacher of a school has evaluated that the
p.000006: study would produce useful information for the institution or school and can be carried out as part of the normal
p.000006: activities of the institution or school. For example, observations, broad questionnaires and open interviews which do
p.000006: not collect directly identifying information
p.000006:
p.000007: 7
p.000007:
p.000007:
p.000007: (names, ID’s, addresses) for research purposes can be carried out without the consent of parents or some other
p.000007: guardian. In other cases they must be informed of the study.
p.000007:
p.000007: When studying minors outside an institution of early childhood education and care or school, researchers must
p.000007: themselves evaluate when it is necessary to ask for a guardian's separate consent or inform a guardian of the study so
p.000007: that the guardian can forbid the child from participating in the study. A study involving children under the age of 15
p.000007: can be conducted without a guardian's separate consent or informing a guardian if this is justified from the viewpoint
p.000007: of 1) the age and development level of subjects, 2) the subject and research method or 3) the need for information. If
p.000007: a study is to be conducted without a guardian's separate consent or informing a guardian, an ethical review must be
p.000007: requested for studies involving subjects under the age of 15.
p.000007:
p.000007: Researchers must always respect a minor's autonomy and the principle of voluntary participation, regardless of whether
p.000007: a guardian's consent has been obtained or not.
p.000007:
p.000007: 1.4 Information for subjects
p.000007:
...
p.000013: point of departure should be the ethical principles in the humanities and social and behavioural sciences (the autonomy
p.000013: of research subjects, avoiding harm, privacy and data protection). Evaluation never shifts responsibility for research
p.000013: ethics to the committee. In research in the humanities and social and behavioural sciences, ethical questions focus on
p.000013: the encounter between the researcher and the subject, which can include unanticipated factors. The researcher is always
p.000013: responsible for the ethical and moral solutions in a study.
p.000013:
p.000014: 14
p.000014:
p.000014:
p.000014:
p.000014: Researchers must submit their research plan to ethical review if a study contains any of the following features:
p.000014: 1. The study involves an intervention in the physical integrity of subjects.
p.000014: 2. The study deviates from the principle of informed consent (ethical review is not required if the research is based
p.000014: on public documents, registries or archived data).
p.000014: 3. The subjects are children under the age of 15 and the study is not part of the normal activities of a school or an
p.000014: institution of early childhood education and care and the data are collected without parental consent and without
p.000014: providing the parents or guardians the opportunity to forbid the child from taking part in the study.
p.000014: 4. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000014: expertise (for example studies containing violence or pornography).
p.000014: 5. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000014: life.
p.000014: 6. The study can signify a security risk to subjects (for example studies concerning domestic violence).
p.000014:
p.000014: A researcher can also request an ethical review if the research subject, the funding agency or a cooperation partner so
p.000014: requires or if the results are to be published in a scientific journal which requires ethical review. The reason for
p.000014: requesting an ethical review must always be specified.
p.000014:
p.000014: For example, according to the guidelines issued by the Academy of Finland, it is sufficient if a review is submitted
p.000014: after a positive funding decision.
p.000014:
p.000014: 4.1 Guidelines for reviewing studies
p.000014:
p.000014: An ethical review examines the plan for collecting data, how the study will be carried out, the information that will
p.000014: be given to subjects and the plan for processing and storing data from the perspective of avoiding risks and harm. The
...
p.000016: committee can if necessary request an ethical review from an outside expert if it considers its own expertise
p.000016: inadequate for risk evaluation.
p.000016:
p.000016: b. The study deviates from the principle of informed consent
p.000016:
p.000016: With regard to a study that deviates from the principle of informed consent, the ethics committee will evaluate whether
p.000016: conducting the study is ethically acceptable. Conducting the study is ethically acceptable if the following
p.000016: preconditions are met:
p.000016: 1. the research is justified, and it would not be possible to conduct the research if subjects were informed of the
p.000016: study and their consent asked for,
p.000016: 2. the data collection does not involve risks to participants,
p.000016: 3. if possible, research subjects will be informed afterwards of the nature and purpose of the research,
p.000016: 4. adequate attention is paid to the privacy of the research subjects and data protection issues.
p.000016:
p.000016: c. The subjects are children under the age of 15, and the study is not part of the normal activities of a school or an
p.000016: institution of early childhood education and care, and the data are collected without parental consent and without
p.000016: providing the parents or guardians the opportunity to forbid the child from taking part in the study
p.000016:
p.000016: A study involving children aged under 15 can be conducted without the consent of a parent or other guardian and without
p.000016: informing the parent or guardian if it does not involve risks to subjects, and the research design is justified by one
p.000016: or more of the following preconditions:
p.000016:
p.000016: 1) On the basis of subjects' age and level of development:
p.000016:
p.000016: The minors who are intended subjects are able to understand the research topic and what participating in the study
p.000016: requires of them in concrete terms.
p.000016:
p.000016: 2) On the basis of the research area and method:
p.000016:
p.000016: The research topic is not sensitive and asking for a parent's or guardian's consent is difficult in practice (for
p.000016: example, studies of youth clubs or school pupils' voluntary clubs etc).
p.000016:
p.000016: 3) From the viewpoint of the need for information:
p.000016:
p.000016: The subject matter of the study will prevent the collection of comprehensive data if parents’ consent must be requested
p.000016: for children's participation (for example, domestic violence, social problems etc), or the research covers issues which
p.000016: minors may not want their parents to know about (for example, use of intoxicating substances, sexual orientation etc).
p.000016:
p.000016: d. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000016: expertise (for example studies containing violence or pornography).
p.000016:
p.000016: e. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000016: life.
p.000016:
p.000017: 17
p.000017:
p.000017:
p.000017:
p.000017: f. The study can entail a security risk to subjects (for example studies concerning domestic violence).
p.000017:
p.000017: The researcher must describe possible negative effects and risks so that the ethics committee can evaluate whether the
p.000017: study is ethical, weighing possible risks to subjects against the intended scientific value of the study. Studies must
p.000017: be conducted so as to minimize any negative effects and risks to subjects.
p.000017:
p.000017: The intended scientific value will be weighed against possible negative effects and the measures that are taken to
p.000017: reduce negative effects to subjects during or after the study (physical and mental harm) or to prevent them altogether
p.000017: (data protection). The evaluation must take into consideration subjects' free will and autonomy. After all, subjects
...
Social / philosophical differences/differences of opinion
Searching for indicator opinion:
(return to top)
p.000011: high treason, rape, aggravated rape, aggravated sexual abuse of a child, murder, manslaughter, killing, aggravated
p.000011: assault, robbery, aggravated robbery, kidnapping, hostage taking, aggravated criminal mischief, aggravated
p.000011:
p.000012: 12
p.000012:
p.000012:
p.000012: prevent an offence. A researcher does not have an obligation to reveal information regarding crimes that have already
p.000012: been committed, unless revealing information helps to prevent an imminent serious crime.
p.000012:
p.000012: According to section 25 of the Child Welfare Act (417/2007), the obligation to confidentiality can be inapplicable if
p.000012: in the course of work a researcher discovers that "there is a child for whom it is necessary to investigate the need
p.000012: for child welfare on account of the child's need for care, circumstances endangering the child's development, or the
p.000012: child's behaviour".5 The primary starting point in a researcher's work is to ensure confidentiality and remain in the
p.000012: role of researcher. In studying children and young people one must respect their own opinion if they are mature enough
p.000012: to form an opinion. If a researcher decides on the basis of the Child Welfare Act to make a report, it is good practice
p.000012: to inform the subjects in question of this intention.
p.000012:
p.000012: 3.2 Storing or destroying research data
p.000012:
p.000012: Research in the humanities and social and behavioural sciences is not always repeatable, but the scientific community
p.000012: should have the possibility, if necessary, to verify research findings from the data analysed in a study. Openness is a
p.000012: key characteristic of science and also a precondition for testing the validity of scientific information, critically
p.000012: evaluating information and advancing science.
p.000012:
p.000012: Data that are carefully archived for secondary research reduce the need to collect research data containing
p.000012: identifiers. Archiving also reduces the research pressure on small population groups. It is particularly important to
p.000012: archive for secondary research data that have cultural, historical and/or scientific value.
p.000012:
p.000012: When necessary, the protection of privacy should be ensured through anonymisation measures and through the regulation
p.000012: of access to data for secondary research.
p.000012:
p.000012: If it is necessary to remove identifiers from data stored for secondary use, the goal of the anonymisation measures
p.000012: undertaken should be that secondary users of data cannot immediately identify individual subjects. In addition to
...
General/Other / Impaired Autonomy
Searching for indicator autonomy:
(return to top)
p.000004: with other post-graduate students.
p.000004:
p.000004: 2 See also Liisa Nieminen, Lapset tutkimuskohteena: Kuka päättää lapsen osallistumisesta tutkimukseen? Lakimies 2/2009,
p.000004: pp. 226-253.
p.000004:
p.000005: 5
p.000005:
p.000005:
p.000005:
p.000005: 4. The National Advisory Board on Research Ethics considers it important that the functionality of the proposed new
p.000005: system and the ethical review guidelines, as well as any problems that may arise, are evaluated by the end of 2011. For
p.000005: this purpose, information should be collected on the composition and activities of the ethics committees. Basic
p.000005: information on requests for ethical review should be collected 1) by discipline, 2) according to the reasons for
p.000005: requests, 3) according to the main data collection method and 4) on applications that have to be reconsidered and
p.000005: changes recommended by the committee along with the reasons for suggested alterations. The National Advisory Board on
p.000005: Research Ethics will draft a form for collecting information.
p.000005:
p.000005: ETHICAL PRINCIPLES OF RESEARCH IN THE HUMANITIES AND SOCIAL AND BEHAVIOURAL SCIENCES
p.000005:
p.000005: All research must comply with the guidelines prepared by the National Advisory Board on Research Ethics entitled "Good
p.000005: scientific practice and procedures for handling misconduct and fraud in science" (2002).
p.000005:
p.000005: Ethical principles of research in the humanities and social and behavioural sciences are divided into three areas:
p.000005: 1. Respecting the autonomy of research subjects,
p.000005: 2. Avoiding harm and
p.000005: 3. Privacy and data protection.
p.000005:
p.000005: 1 THE AUTONOMY OF RESEARCH SUBJECTS
p.000005:
p.000005: 1.1 Voluntary participation
p.000005:
p.000005: Participation in research should be voluntary and based on informed consent. An exception from the principle of
p.000005: voluntary consent can be made when research is conducted on published and public information and archived materials.
p.000005: Research concerning official registries and documents and carried out without the consent of research subjects is
p.000005: governed by legislation.
p.000005:
p.000005: Research subjects can give consent orally or in writing, or their behaviour can otherwise be interpreted to mean that
p.000005: they have given consent to participate. For example, assenting to a polite request for an interview or responding to a
p.000005: questionnaire or request for a written response indicates that the subject has consented to be studied.
p.000005:
p.000005: In institutional settings (prisons, child protection institutions, hospitals, homes for the elderly etc) it is
p.000005: important to make sure that consent is given voluntarily by each and every subject. In evaluating the matter, attention
p.000005: must also be paid to the nature of the study, i.e. the degree to which personal matters are dealt with (need to protect
...
p.000005: individual.
p.000005:
p.000005: If research intervenes in the physical integrity of subjects, consent must always be given in writing or in some other
p.000005: certifiable way, unless this is contrary to the interests of subjects.
p.000005:
p.000006: 6
p.000006:
p.000006:
p.000006: For example, a person with AIDS may not want his or her name registered on a written consent.
p.000006:
p.000006: Consent can be specific or general. General consent applies to research use in general. General consent can include
p.000006: conditions regarding the form in which data are recorded and archived and conditions set for the use of data in
p.000006: secondary research.
p.000006:
p.000006: If information obtained from subjects is combined with information in official registers, subjects must be given
p.000006: detailed information on the registers that will be used.
p.000006:
p.000006: Specific consent concerns the use of information in a particular study. Specific consent with regard to the use of data
p.000006: may be justified on the grounds that data cannot be anonymized and that archiving the data with identifiers for
p.000006: secondary research would in all likelihood be harmful to subjects.
p.000006:
p.000006: Subjects have the right to withdraw from a study at any stage, but this does not mean, however, that their prior input
p.000006: (interviews etc) cannot be used in the study.
p.000006:
p.000006: 1.2 Autonomy and research involving minors
p.000006:
p.000006: According to section 6 paragraph 3 of the Constitution of Finland, children must be treated equally and as individuals
p.000006: and must be allowed to influence matters pertaining to themselves to a degree corresponding to their level of
p.000006: development. The same right is also ensured in Article 12 of the UN Convention on the Rights of the Child. On the other
p.000006: hand, according to section 4 paragraph 1 of the Child Custody and Right of Access Act (361/1983), a guardian has the
p.000006: right to decide on a child's personal matters. Balancing this right and the above- mentioned principles in the
p.000006: Constitution and the UN Convention on the Rights of the Child is not always easy. Consequently, the National Advisory
p.000006: Board on Research Ethics has called for legislation to be clarified in this respect.
p.000006:
p.000006: In practice, it cannot be assumed that researchers should always request separate consent from a guardian when research
p.000006: involves minors. First, according to the above-mentioned principles children should be able to influence matters
p.000006: pertaining to themselves to a degree corresponding to their level of development. Second, there are situations where
p.000006: there may be differences in values and interests between a guardian and a minor, and requesting the guardian's consent
p.000006: may endanger the collection of comprehensive research data on the conditions and behaviour of minors, thus restricting
p.000006: the freedom of science, which is guaranteed by the Constitution. Third, there are studies which do not include risks
p.000006: and where requesting consent from the guardian would be difficult.
p.000006:
p.000006: 1.3 Autonomy and age limits
p.000006:
p.000006: Many studies that are conducted in schools and institutions of early childhood education and care can be carried out as
p.000006: part of the normal work of the institution or school. It is not necessary to request a guardian's permission if the
p.000006: director of an institution of early childhood education and care or the head teacher of a school has evaluated that the
p.000006: study would produce useful information for the institution or school and can be carried out as part of the normal
p.000006: activities of the institution or school. For example, observations, broad questionnaires and open interviews which do
p.000006: not collect directly identifying information
p.000006:
p.000007: 7
p.000007:
p.000007:
p.000007: (names, ID’s, addresses) for research purposes can be carried out without the consent of parents or some other
p.000007: guardian. In other cases they must be informed of the study.
p.000007:
p.000007: When studying minors outside an institution of early childhood education and care or school, researchers must
p.000007: themselves evaluate when it is necessary to ask for a guardian's separate consent or inform a guardian of the study so
p.000007: that the guardian can forbid the child from participating in the study. A study involving children under the age of 15
p.000007: can be conducted without a guardian's separate consent or informing a guardian if this is justified from the viewpoint
p.000007: of 1) the age and development level of subjects, 2) the subject and research method or 3) the need for information. If
p.000007: a study is to be conducted without a guardian's separate consent or informing a guardian, an ethical review must be
p.000007: requested for studies involving subjects under the age of 15.
p.000007:
p.000007: Researchers must always respect a minor's autonomy and the principle of voluntary participation, regardless of whether
p.000007: a guardian's consent has been obtained or not.
p.000007:
p.000007: 1.4 Information for subjects
p.000007:
p.000007: The information that must be provided to research subjects depends on the nature of data collection methods. In studies
p.000007: based on observation, interviews or questionnaires, subjects must be told what the study is about and what
p.000007: participating in the study means in concrete terms and how long it will take.
p.000007:
p.000007: Information regarding a study should include at least the following: 1) the researcher's contact information, 2) the
p.000007: research topic, 3) the method of collecting data and the estimated time required, 4) the purpose for which data will be
p.000007: collected, how it will be archived for secondary use, and 5) the voluntary nature of participation.
p.000007:
p.000007: Subjects may ask for additional information regarding the study and researchers should prepare for this in advance.
p.000007: Additional information can concern, for example, 1) a study's scientific or doctrinal orientation, 2) how confidential
p.000007: data will be protected and where data will be archived after the study, 3) how and when the results of the study will
p.000007: be published.
p.000007:
p.000007: In experimental studies sufficient information must be provided concerning the design of the experiment. Experimental
p.000007: designs vary considerably from one field to another. Determining the adequacy of information is always up to the
p.000007: researcher according to the guidelines in the particular field.
p.000007:
p.000007: If a study intervenes in the physical integrity of subjects, the information given to subjects must comply with the
p.000007: guidelines issued on the basis of the Act on Medical Research as far as these apply.
...
p.000013: In studying organizations or other social actors (institutions, associations, work communities, public bodies etc), the
p.000013: identifiability of the organization and its individual representatives must be evaluated separately in each case.
p.000013: Subjects generally participate in a study as individual representatives of their social or professional role. Anonymity
p.000013: in research publications does not necessarily prevent identification among those who are familiar with the unit or
p.000013: organization in question, however. Subjects should not be promised complete anonymity unless it can reasonably be
p.000013: guaranteed. Research publications should strive to treat individual subjects and the research target in a respectful
p.000013: manner. Critical findings regarding the research target should be explained analytically, avoiding a labelling
p.000013: attitude.
p.000013:
p.000013: In research, particularly in the humanities but also in the social sciences, it may be justifiable for research
p.000013: purposes and also ethically to present subjects by name in research publications. For example, a study based on
p.000013: interviews with experts can be published without removing the names of subjects or other identifiers. Agreement about
p.000013: this must be reached with research subjects in advance.
p.000013:
p.000013: If research concerns archived materials, the identifiability or non-identifiability of subjects in research
p.000013: publications depends on the conditions the distributing archive has set on the use of the data.
p.000013:
p.000013: 4 ETHICAL REVIEW
p.000013:
p.000013: In preparing a request for an ethical review and in evaluating the possible negative effects and risks of a study, the
p.000013: point of departure should be the ethical principles in the humanities and social and behavioural sciences (the autonomy
p.000013: of research subjects, avoiding harm, privacy and data protection). Evaluation never shifts responsibility for research
p.000013: ethics to the committee. In research in the humanities and social and behavioural sciences, ethical questions focus on
p.000013: the encounter between the researcher and the subject, which can include unanticipated factors. The researcher is always
p.000013: responsible for the ethical and moral solutions in a study.
p.000013:
p.000014: 14
p.000014:
p.000014:
p.000014:
p.000014: Researchers must submit their research plan to ethical review if a study contains any of the following features:
p.000014: 1. The study involves an intervention in the physical integrity of subjects.
p.000014: 2. The study deviates from the principle of informed consent (ethical review is not required if the research is based
p.000014: on public documents, registries or archived data).
p.000014: 3. The subjects are children under the age of 15 and the study is not part of the normal activities of a school or an
p.000014: institution of early childhood education and care and the data are collected without parental consent and without
p.000014: providing the parents or guardians the opportunity to forbid the child from taking part in the study.
...
p.000014: expertise (for example studies containing violence or pornography).
p.000014: 5. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000014: life.
p.000014: 6. The study can signify a security risk to subjects (for example studies concerning domestic violence).
p.000014:
p.000014: A researcher can also request an ethical review if the research subject, the funding agency or a cooperation partner so
p.000014: requires or if the results are to be published in a scientific journal which requires ethical review. The reason for
p.000014: requesting an ethical review must always be specified.
p.000014:
p.000014: For example, according to the guidelines issued by the Academy of Finland, it is sufficient if a review is submitted
p.000014: after a positive funding decision.
p.000014:
p.000014: 4.1 Guidelines for reviewing studies
p.000014:
p.000014: An ethical review examines the plan for collecting data, how the study will be carried out, the information that will
p.000014: be given to subjects and the plan for processing and storing data from the perspective of avoiding risks and harm. The
p.000014: review weighs possible negative effects or harm to subjects resulting from participation in the study in relation to
p.000014: the intended scientific value of the study. The starting point is always the ethical principles in the humanities and
p.000014: social and behavioural sciences (the autonomy of research subjects, avoiding harm, privacy and data protection).
p.000014:
p.000014: If necessary, ethical guidelines in the particular research field should also be applied.6
p.000014:
p.000014: In the humanities and social and behavioural sciences, evaluating scientific value and risks is not a utilitarian
p.000014: cost-benefit analysis but rather a question of normative evaluation of values that are in themselves incommensurable.
p.000014: Evaluation ensures that a study does not contain unnecessary risks that could be avoided without reducing the
p.000014: scientific value of the study.
p.000014: Next, one must decide whether risks on the whole are morally acceptable. Research which entails higher risks may be
p.000014: morally acceptable if the scientific value of the study is very high, and the study does not cause harm to subjects
p.000014: (studies that are not based on informed
p.000014:
p.000014:
p.000014: 6 There are separate ethic codes in psychology and economics, for example. In addition research institutions keeping
p.000014: statutory registers have ethical guidelines concerning register data.
p.000014:
p.000015: 15
p.000015:
p.000015:
p.000015: consent), or the people participating in the study can evaluate possible harm themselves on the basis of the
p.000015: information that is supplied to them.
p.000015:
p.000015: If a study does not have the features listed above (1-6) and does not present a risk of causing long-term mental harm
...
p.000016:
p.000016: d. The study exposes research subjects to exceptionally strong stimuli and evaluating possible harm requires special
p.000016: expertise (for example studies containing violence or pornography).
p.000016:
p.000016: e. The study may cause long-term mental harm (trauma, depression, sleeplessness) beyond the risks encountered in normal
p.000016: life.
p.000016:
p.000017: 17
p.000017:
p.000017:
p.000017:
p.000017: f. The study can entail a security risk to subjects (for example studies concerning domestic violence).
p.000017:
p.000017: The researcher must describe possible negative effects and risks so that the ethics committee can evaluate whether the
p.000017: study is ethical, weighing possible risks to subjects against the intended scientific value of the study. Studies must
p.000017: be conducted so as to minimize any negative effects and risks to subjects.
p.000017:
p.000017: The intended scientific value will be weighed against possible negative effects and the measures that are taken to
p.000017: reduce negative effects to subjects during or after the study (physical and mental harm) or to prevent them altogether
p.000017: (data protection). The evaluation must take into consideration subjects' free will and autonomy. After all, subjects
p.000017: themselves are always able to evaluate to some extent their own risks of participating in a study.
p.000017:
p.000017: In evaluating experimental studies, the ethical guidelines in the particular field can be applied in a supplementary
...
General/Other / Public Emergency
Searching for indicator emergency:
(return to top)
p.000007:
p.000008: 8
p.000008:
p.000008:
p.000008:
p.000008: If a study deviates from the principle of informed consent, an ethical review from the research ethics committee is
p.000008: always required.
p.000008:
p.000008: An exception from the principle of informed consent can be made if advance information would distort the results of the
p.000008: study. As a matter of principle, studies on the use of power should be allowed without the consent of those in power.
p.000008: There are also groups and subcultures that researchers cannot approach without using an assumed identity for the sake
p.000008: of their own safety.
p.000008:
p.000008: Data collection can deviate from the principle of informed consent in a number of ways:
p.000008:
p.000008: 1. Research subjects may be given all the relevant information but participation is not voluntary (e.g., a study based
p.000008: on participant observation of military conscripts or the observation of work processes where the organization's
p.000008: management has given permission for the research).
p.000008: 2. Research subjects may be given insufficient or misleading information about the role of the researcher. For example,
p.000008: the researcher may not identify him/herself as a researcher but does not give misleading information (e.g.,
p.000008: observational data collected from an emergency room or riding with a police squad) or the researcher may work under a
p.000008: covert role (e.g., to mislead research subjects in a field study of discrimination).
p.000008: 3. The researcher identifies him/herself but gives misleading information about the content of the study.
p.000008:
p.000008: Observing subjects in a public place does not require their consent or an ethical review from the ethics committee.
p.000008: Technical recording equipment can be used in a public place provided the principles regarding privacy and data
p.000008: protection are observed in the use, storage and archiving of data.
p.000008:
p.000008: 2 AVOIDING HARM
p.000008:
p.000008: An important task of historical and social research is to produce information on the improper functioning of social
p.000008: institutions and problems regarding the use of power.
p.000008:
p.000008: Possible harm resulting from research can stem from the collection of data, the storage of data and consequences
p.000008: following the publication of studies.
p.000008:
p.000008: 2.1 Avoiding mental harm
p.000008:
p.000008: Avoiding mental harm includes treating subjects with respect and reporting findings in a respectful way in research
p.000008: publications.
p.000008:
p.000008: How sensitive a subject matter is and what the limits of privacy are depend primarily on the research subjects
...
General/Other / declaration of helsinki
Searching for indicator helsinki:
(return to top)
p.000001: 1
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001: Ethical principles of research in the humanities and social and behavioural sciences and proposals for ethical review
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001:
p.000001: National Advisory Board on Research Ethics Helsinki 2009
p.000001:
p.000002: 2
p.000002:
p.000002:
p.000002: THE NATIONAL ADVISORY BOARD ON RESEARCH ETHICS' PROPOSALS
p.000002:
p.000002: 1 Ethical review and its organizational framework in the humanities and social and behavioural sciences1
p.000002:
p.000002: Science should be practiced primarily with the help of the scientific community's own critical review and joint ethical
p.000002: rules. The National Advisory Board on Research Ethics proposes an ethical review system for the humanities and social
p.000002: and behavioural sciences. The review system would follow the same principles as the guidelines published by the
p.000002: National Advisory Board on Research Ethics entitled "Good scientific practice and procedures for handling misconduct
p.000002: and fraud in science" (2002). The scientific community (universities, research institutions, universities of applied
p.000002: sciences and funding agencies) has broadly made a commitment to comply with those guidelines.
p.000002:
p.000002: With the new proposal, this commitment would also include the obligation to arrange ethical review in the manner
p.000002: proposed by the National Advisory Board, and applying the ethical principles published by it. The commitment model
p.000002: provides a flexible possibility to alter the ethical review system and ethical guidelines on the basis of experience if
p.000002: this is necessary.
p.000002:
p.000002: 2 Establishment of ethics committees
p.000002:
p.000002: The National Advisory Board on Research Ethics proposes that universities and research organizations that have made a
...
Orphaned Trigger Words
p.000014:
p.000014: In the humanities and social and behavioural sciences, evaluating scientific value and risks is not a utilitarian
p.000014: cost-benefit analysis but rather a question of normative evaluation of values that are in themselves incommensurable.
p.000014: Evaluation ensures that a study does not contain unnecessary risks that could be avoided without reducing the
p.000014: scientific value of the study.
p.000014: Next, one must decide whether risks on the whole are morally acceptable. Research which entails higher risks may be
p.000014: morally acceptable if the scientific value of the study is very high, and the study does not cause harm to subjects
p.000014: (studies that are not based on informed
p.000014:
p.000014:
p.000014: 6 There are separate ethic codes in psychology and economics, for example. In addition research institutions keeping
p.000014: statutory registers have ethical guidelines concerning register data.
p.000014:
p.000015: 15
p.000015:
p.000015:
p.000015: consent), or the people participating in the study can evaluate possible harm themselves on the basis of the
p.000015: information that is supplied to them.
p.000015:
p.000015: If a study does not have the features listed above (1-6) and does not present a risk of causing long-term mental harm
p.000015: beyond the risks encountered in normal life, this should be mentioned in the request for an ethical review. In this
p.000015: case, the committee will primarily evaluate the information supplied to subjects as well as matters concerning privacy
p.000015: and data protection. If a study entails any of the features listed above (1-6), the ethics committees must also
p.000015: evaluate the proposed research methods in relation to research questions and the value of the new information that the
p.000015: study is intending to provide.
p.000015:
p.000015: Information for subjects
p.000015:
p.000015: The committee will check that the informing of research subjects is planned appropriately. Information regarding a
p.000015: study includes at least the following: 1) the researcher's contact information, 2) the research topic, 3) the method of
p.000015: collecting data and the estimated time required, 4) the purpose for which data will be collected, used in secondary
p.000015: research and archived, and 5) the voluntary nature of participation.
p.000015:
p.000015: In experimental studies, sufficient information must be provided concerning the design of the experiment. Experimental
p.000015: designs vary considerably from one research field to another.
p.000015: Ethics committees will determine whether the proposed level of information is adequate.
p.000015:
p.000015: If a study intervenes in the physical integrity of subjects, the information given to subjects must comply with the
p.000015: guidelines issued on the basis of the Act on Medical Research, as far as these apply.
p.000015:
p.000015: Privacy and data protection
p.000015:
p.000015: An ethical review examines a study's data management plan and ensures that technical data security solutions have been
p.000015: planned. The data management plan must describe 1) how data containing identifiers will be protected or identifiers
p.000015: removed, 2) whether signing a pledge of confidentiality will be required from persons using or processing the personal
p.000015: data and 3) the plan for archiving the data for secondary research or alternatively destroying personal data after the
p.000015: study has been completed.
p.000015:
p.000015: Ethics committees do not review the protection of privacy in research publications. Researchers and editors are
p.000015: responsible for compliance with ethical principles in research publications.
p.000015:
p.000015: 4.2 Special review guidelines regarding different research designs:
p.000015:
p.000015: a. The study involves an intervention in the physical integrity of subjects
p.000015:
p.000015: The ethical guidelines for medical research can be applied in planning and reviewing studies that involve an
p.000015: intervention in the physical integrity of subjects (see http://www.etene.org/tukija/dokumentit/Muistlco.pdf). The
p.000015: committee will evaluate anticipated negative effects (risks, harm and their probability) in relation to the intended
p.000015: scientific value of the study. Studies must be conducted in a manner that minimizes any negative effects and risks to
p.000015: subjects.
p.000015:
p.000016: 16
p.000016:
p.000016:
p.000016:
p.000016: Evaluating physical risks requires expertise and background information based on empirical studies. The ethics
p.000016: committee can if necessary request an ethical review from an outside expert if it considers its own expertise
p.000016: inadequate for risk evaluation.
p.000016:
p.000016: b. The study deviates from the principle of informed consent
p.000016:
p.000016: With regard to a study that deviates from the principle of informed consent, the ethics committee will evaluate whether
p.000016: conducting the study is ethically acceptable. Conducting the study is ethically acceptable if the following
p.000016: preconditions are met:
...
Appendix
Indicator List
| Indicator | Vulnerability |
|---|
| abuse | Victim of Abuse |
| access | Access to Social Goods |
| age | Age |
| autonomy | Impaired Autonomy |
| child | Child |
| children | Child |
| crime | Illegal Activity |
| criminal | criminal |
| education | education |
| elderly | Elderly |
| emergency | Public Emergency |
| family | Motherhood/Family |
| helsinki | declaration of helsinki |
| impairment | Cognitive Impairment |
| influence | Drug Usage |
| job | Occupation |
| language | Linguistic Proficiency |
| military | Soldier |
| minor | Youth/Minors |
| opinion | philosophical differences/differences of opinion |
| parent | parents |
| parents | parents |
| police | Police Officer |
| restricted | Incarcerated |
| social welfare | Access to Social Goods |
| student | Student |
| trauma | Victim of Abuse |
| violence | Threat of Violence |
| youth | Youth/Minors |
Indicator Peers (Indicators in Same Vulnerability)
| Indicator | Peers |
|---|
| abuse | ['trauma'] |
| access | ['socialXwelfare'] |
| child | ['children'] |
| children | ['child'] |
| minor | ['youth'] |
| parent | ['parents'] |
| parents | ['parent'] |
| social welfare | ['access'] |
| trauma | ['abuse'] |
| youth | ['minor'] |
Trigger Words
consent
cultural
ethics
harm
protect
protection
risk
sensitive
welfare
Applicable Type / Vulnerability / Indicator Overlay for this Input