5 Human dignity

Researchers must base their work on a fundamental respect for human dignity.

Human dignity is closely linked to individual inviolability. Respect for human dignity and personal integrity is formalised and laid down in a series of international laws and conventions on human rights.[17] In research ethics, this means that individuals have interests and integrity, which cannot be set aside in research in order to achieve greater understanding or to benefit society in other ways. Researchers must protect personal integrity, preserve individual freedom and self-determination, respect privacy and family life, and safeguard against harm and unreasonable strain. While research may help promote human dignity, it can also threaten it. Researchers must therefore show respect for human dignity in their choice of topic, in relation to the research subjects, and when reporting and publishing research results.

6 Privacy

Researchers must respect the participants' autonomy, integrity, freedom and right of co-determination.

From a legal perspective, the protection of privacy is linked to the processing of personal data. Thus, research must be conducted in accordance with basic considerations for data protection, such as personal integrity, privacy and responsible use and storage of personal data. However, privacy also has a wider scope in research ethics, and researchers must exercise due caution and responsibility

  • when self-respect or other values of importance to individuals are at stake;
  • when individuals have little influence on the decision to participate in research, for example in connection with research using the internet or at an institution;
  • when individuals have impaired or absent capacity to protect their own needs and interests;
  • when individuals actively contribute in acquiring data for research, for example by agreeing to be observed or interviewed;
  • when individuals can be identified, directly or indirectly, either as participants or as part of communities recognisable in publications or in other dissemination of research;
  • when a third party is affected by the research.

7 Duty to inform

Researchers must provide participants with adequate information about the field of research, the purpose of the research, who has funded the project, who will receive access to the information, the intended use of the results, and the consequences of participation in the research project.

The type of information required depends on the nature of the research; whether it takes the form of field studies, experiments or using the internet. There are various considerations associated with different types of source material and data; whether it is a matter of personal data, sensitive information, previously acquired material, anonymised material or information acquired from the internet. When collecting and processing personal data, especially sensitive personal data, researchers also have a statutory obligation to notify the subjects or participants in the research and must also obtain their consent (see Introduction and point 8).

Researchers must provide information in a neutral manner, so that the subjects are not exposed to undue pressure. The information must be adapted to the participatns' cultural background and communicated in a language they understand. In some research projects, it may be necessary to use an interpreter to provide the necessary information.

It may also be relevant to provide information about possible benefits associated with participating in the research, but this information must be clear and not raise unreasonable expectations on the part of the research subjects. Where relevant, researchers are required to make it clear that participation in the research does not affect their right to public services or the outcome of their cases and applications.

One exception from the main rule is when the research is conducted by means of observation in public arenas, on streets and in public squares. Researchers can normally carry out such research without informing the people involved. At the same time, registration of information and interaction using technical equipment (camera, video, tape recorders, etc.) implies that the observation material will be stored. This registration and storage may thus provide the foundation for a personal data register. In general, this requires that people are informed that they are the subjects of research, how long the material will be stored, and who will be using it. Research on and via the internet has a special status, and not everything that is openly available on the internet is public. NESH has therefore developed separate guidelines for internet research.[18]

Another exception is public figures, who may find that the increased attention they meet threatens their individual freedom. However, as they have voluntarily sought public attention, or have accepted positions that entail publicity, their freedom cannot be said to be threatened to the same extent as that of other persons. Public figures must expect the public aspects of their work to be the subject of research. They should nonetheless be informed of the purpose of the research when they take part as informants, out of consideration for their self-determination and freedom.

A third exception is when information cannot be given before the research is initiated, for example if a researcher cannot disclose the real purpose of an experiment. Such exceptions must be justified by the value of the research and the lack of alternatives, and the researcher must take particular care to comply with respect for human dignity and protection of individuals. It is often possible to give participants general information on the project in advance, and detailed information afterwards, both about the project and about why they were not fully informed beforehand.

8 Consent and obligation to notify

When a research project deals with personal data, researchers are obliged to inform the participants or subjects of research and to obtain their consent. The consent must be freely given, informed, and in an explicit form.

The obligation to obtain consent is set out in the Personal Data Act, and all processing of personal data in research must be reported to a data protection officer. When researchers process sensitive personal data, either a license is required from the Data Protection Authority or a recommendation from a data protection officer (see the Introduction).

The obligation to obtain consent will prevent violations of personal integrity, and safeguard the freedom and self-determination of the participants. The consent must be based on information about the purpose of the project, the methods, risks, possible discomfort, and other consequences of importance to the participants. Consent also makes it possible to conduct research that involves a certain risk of strain.

Freely given consent means that the consent has been obtained without external pressure or constraints on individual freedom. Such pressure may arise from the presence of the researcher, or it can be mediated through persons in authority with whom the researcher has been in contact. Rewarding or paying participants may also influence the informants' motivation to take part in research projects, and may influence the responses provided by the participants, thus constituting a source of error in the data collected.

The fact that consent is informed means that a researcher has provided adequate information about what it means to take part in a research project. The need for clear information is particularly great when the research involves a risk of strain (see point 7).

That the consent is given in an explicit form means that the participants clearly state that they understand what it actually means to take part in the research project. They must have real opportunities to refrain from taking part without this presenting an disadvantage, and they must be fully aware that they can end their participation at any time without this having any negative consequences. Researchers must ensure that the participants have actually understood this information. This responsibility does not end even if an agreement has been signed, requiring researchers to be alert at all times.

It should also be possible to document the consent, both to substantiate the researcher's responsibility and to safeguard the rights of research subjects. Usually, there should be a signed consent form, but sometimes other types of documentation may be more suitable.

Impaired or absent capacity to consent

Freely given and informed consent is difficult to obtain in some types of research. Such research can raise ethical concerns if the need for protection against harm, or the need for freedom, self-determination and privacy are jeopardised to any significant extent. In such cases, researchers have a special responsibility for protecting the integrity of the individuals. This may apply, for example, to research involving individuals that either have an impaired or absent capacity to give a free and informed consent.

The question of impaired or absent capacity to consent is usually raised in connection with research involving children, the mentally ill, persons with intellectual disabilities, persons suffering from dementia and intoxicated individuals. Individuals unable to give a free and informed consent will generally only be included in research when a) it cannot be conducted on individuals who are able to give consent, and b) it can be shown to be probable that the research in question is of direct or substantial benefit to the individuals or group being studied. In some cases, it may be a matter of research where the knowledge may benefit the group in question, but where any direct benefit to the individuals included is absent, uncertain or in the remote future. A prerequisite for including individuals who cannot give a free and informed consent is that any risk and strain associated with the study are negligible for the individuals included.

Research without consent

Although a free and informed consent is the general rule, exceptions can be made in situations in which the research does not imply direct contact with the participants, where the data being processed is not particularly sensitive, and where the utility value of the research clearly exceeds any disadvantages for the individuals involved. One example is the use of existing registry data, where it is not feasible to obtain consent from all of the persons covered by the registers. In such cases, researchers have a special responsibility to explain in detail the potential beneficial value of the results, and for informing the parties involved and the general public about the purpose and results of the project, for example through the internet or other media like newspapers, radio and television (see also point 10).

9 Confidentiality

Generally, researchers must process data acquired about personal matters confidentially. Personal data must normally be de-identified, while publication and dissemination of the research material must normally be anonymised. In certain situations, researchers must nonetheless balance confidentiality and the obligation to notify.

When researchers promise confidentiality to participants, the pledge implies that the information will not be passed on in ways that can identify the individuals. Both the credibility of the researchers and the participants' trust in research are closely linked to confidentiality. At the same time, the requirement of confidentiality has a legal aspect associated with protection of personal integrity and privacy, and both the Public Administration Act and the Personal Data Act set limits on the type of confidentiality researchers can promise participants. Researchers must therefore communicate clearly the limits of the pledge of confidentiality.

Sometimes a conflict can arise between the duty of confidentiality and the obligation to notify. The research may reveal censurable or illegal situations that can expose researchers to conflicting loyalties, particularly with a view to the promise of confidentiality. Researchers must therefore not allow themselves to become dependent on the participants, and such conflicts can be prevented by explaining the limits on the promise of confidentiality. This also applies to processing of data that is subject to protection of sources.[19]

In given situations, the duty of confidentiality must yield to the duty to prevent a criminal offence.[20] Researchers are legally bound to prevent a criminal offence or report it to the police, without regard for the duty of confidentiality. This includes suspicion of espionage, acts of terrorism, murder, rape, incest or domestic violence. [21] Children are particularly entitled to protection, and when abuse or neglect are suspected, researchers also have a duty of disclosure and must report the matter to the child welfare authorities. This applies to everyone, notwithstanding the duty of confidentiality. [22]

10 Limited re-use

Identifiable personal data collected for a specific research purpose cannot automatically be used for other research.

Generally, re-use of identifiable personal data requires the consent of the participants. This does not apply to anonymised data, acquired for example for use in statistics, where the researcher cannot link persons and data. When the data have been anonymised, the researcher does not know which person the data and the material come from. However, anonymity must not be confused with de-identified data, where personal data are removed, so that no unauthorised persons are able to establish who the research subjects are, but where the researcher is able to link individuals and data.

Re-use of such de-identified data requires consent if researchers supplement registry studies with data obtained through active contact with the participants. When re-using and linking this type of data set, for example in registry studies that are large-scale, of a long duration, or which use geodata, it may also be possible to locate or identify individuals indirectly. In such cases, researchers should make renewed attempts to obtain consent, even though this is difficult in practice. If researchers do not find it possible to obtain
consent, they have a particular responsibility to explain why the research is of such great benifit that it justifies deviating from this principle. In such cases, researchers have a general responsibility to inform the persons involved and the general public (see point 7).

11 Storage of personal data

Data related to identifiable individuals must be stored responsibly. Such data must not be stored any longer than what is necessary to achieve the objective for which it was collected.

Data protection involves not only the protection of individuals against abuse of personal data, but also of citizens in relation to the State. This is why strict rules govern the establishment of public personal data registers. However, this must be balanced against the benefits achieved through research on registry data. It is also important to preserve material for future generations, but research institutions must follow the rules regarding proper storage. It is vital to establish and observe good routines for ensuring the quality of data registers and for any re-use and deletion of registers or other data, which may be linked to individuals (see the Personal Data Act).

Storage of personal data normally triggers an obligation to obtain consent. The legislation places strict requirements on safe storage of lists of names or other data that permit the identification of individuals. If storage of such data is necessary, the identifiable
personal data must be stored securely and separately from other research data. The other material stored may contain a reference number to link it to the list of personal data. All research material must be kept securely, and inaccessible to unauthorised persons.

It must be clearly decided and communicated to the participants in advance whether or not the material is to be destroyed at the end of the project. It must also be explained plainly how, and in what form, the material will be stored to make it possible to verify analyses and conclusions or for other researchers to re-use the material. The material must be stored securely at a dedicated institution like the Norwegian Centre for Research Data (formerly NSD) or the National Archives of Norway.

Generally, it is important to ensure that public archives and private archives of value to research are kept for posterity and made available for research. The National Archives play an important role here. [23]

12 Responsibility for avoiding harm

Researchers are responsible for ensuring that participants are not exposed to serious physical harm or other severe or unreasonable strain as result of the research.

In humanities and social science research, there is usually little risk of participants being exposed to serious physical harm. However, serious mental strain is a possibility. This may be more difficult to define and predict, and it can be difficult to assess the long-term effects, if any. «Strain» is used here in a broad sense, and it covers both everyday discomfort, risk of retraumatisation, and also more serious mental strain which the research may cause the participants. Researchers nevertheless have responsibility for participants not being subjected to serious or unreasonable pain or stress.

The risk of causing minor strain must be balanced against both the benifit of the research for society and the value for the participants. Researchers must justify such benifit and value as specifically as possible, also to the parties involved (through information retrospectively). Researchers should also ensure that individuals involved are offered professional follow-up in order to process any problems that have arisen as a result of participation in the project.

13 Respect for third parties

Researchers should consider and anticipate effects on third parties that are not directly included in the research.

Interviews, archival studies and observations often result in the researcher gaining access to information about far more individuals than those who are the focus of the study. The research may have an impact on the privacy and close relationships of individuals who are not included in the research, but who are drawn in as parties closely related to the participants. In some cases, for example when a researcher observes groups and communities, it can be difficult to protect the privacy of individuals who have not given consent directly, or who have actively declined, but who nevertheless remain in the situation. Researchers have a responsibility nonetheless to protect the privacy of those individuals who are directly or indirectly affected by the research project.

Studies can be conducted in small and transparent communities, and the protection of third parties is especially important in such circumstances. Researchers should take account of the possible negative consequences for third parties. This is particularly important when vulnerable individuals, like children and minors, are indirectly involved in the research.

In a society in which research results are used to assess and adjust decisions, it can be very difficult to prevent research from having negative consequences for groups and institutions. Researchers should be aware of potential unintended consequences of their research, for example that other members of a group feel unreasonably exposed. The consideration of strain on the part of third parties should be weighed against the consideration of the critical function of the research and the pursuit of truth.

14 Protection of children

Children and adolescents who take part in research are particularly entitled to protection.

Research on children and their lives and living conditions is valuable and important. Children and adolescents are key contributors to this research. Their specific needs and interests must be protected in ways supplementary to the general treatment of adult subjects. Children are developing individuals, and they have different needs and abilities at various phases. Researchers must know enough about children to be able to adapt both their methods and the direction of their research to the ages of the participants. Age-specific information must be provided about the project and the consequences of the research, and they must be informed that participation is voluntary and that they may withdraw from the study at any time. Consent is more problematic for research on children than research on adults. Children are often more willing to obey authority than adults, and they often feel that they cannot object. Nor are they always able to see the consequences of participating in research. [24]

In general, minors who have turned 15 can consent to researchers collecting and using their personal data. If a child is under the age of 15, researchers must usually obtain consent from their parents or guardians. An exception is made for sensitive personal data, which can only be acquired with the consent of the parents. In such cases, authorisation from the Data Protection Authority or a recommendation from a data protection officer is also required. [25]

At the same time, it is important to treat minors as independent individuals. According to the Children Act, a child who has reached seven years of age, or younger children who are able to form their own opinions on a matter, must be provided with information and the opportunity to express their opinions. When a child has reached twelve years of age, a great deal of weight must be attached to his or her opinions. In addition to the parents or guardians giving formal consent, it is necessary that the children themselves accept participation to the extent that they are able to do so.

There may also be conflicts of interest between children and their parents or guardians. In that event, it is important to clarify the child's capacity to grant consent on their own behalf. In some cases, it may be right to let children and adolescents take part in the research without the consent of their parents. The requirement of confidentiality particularly applies when children take part in research. However, situations can arise in which researchers are either legally or ethically required to provide confidential information, whether it be to the child's next-of-kin, adult helpers or the child welfare service. The obligation to notify applies, for example, if researchers learn that children are subject to abuse, assault or neglect (see point 9).

15 Respect for privacy and family life

Researchers must respect individuals' privacy and family life. Participants are entitled to check whether confidential information about them is made available to others.

Respect for privacy aims at protecting individuals against unwanted interference and exposure. This applies not only to emotional issues, but also to questions that involve sickness and health, political and religious opinions, and sexuality.

Researchers should be especially attentive when they ask questions regarding intimate matters and they should avoid putting pressure on participants. What participants perceive as sensitive information may vary from one individual or group to the next.

It can be difficult to distinguish between the private and the public sphere, for example when conducting research on and via the internet. When using material from such interactions, researchers must be duly aware of the fact that people's understanding of what is private and what is public in such media may vary. [26]

16 Respect for the values and motives of others

Researchers must not ascribe irrational or unworthy motives to participants without providing convincing documentation and justification. Researchers must show respect for the values and views of research participants, not least when they differ from those generally accepted by society at large.

Research is often concerned with the behaviour and values of minorities, e.g. religious groups, ethnic minorities, youth groups, or political subcultures. Some persons may find this research to be intrusive or offensive. Researchers must take seriously the participants' understanding of themselves and avoid representations that diminish their legitimate rights.

In many research projects in the humanities and social sciences, where actions are often used in explanations, the participants' motives often play a key role. There is frequently uncertainty associated with exploration of motives, not least when it comes to research on other cultures or historical periods. A clear distinction should therefore be drawn between description and interpretation, or between documentation of actual courses of events and different interpretations of such events.

At the same time, the participants' motives are often directly associated with their social roles. For example, researchers may assume that politicians seek influence, that business leaders seek profit, or that there are conflicts between generations. Stronger evidence is required to ascribe more unusual motives to participants. Special documentation and argumentation are required for providing accounts of actions that ascribe unworthy motives to participants or motives other than those they invoke themselves.

17 Respect for posthumous reputations

It is important to act with care when conducting research on deceased persons.

Respect, documentation and accountability are also required when conducting research on deceased persons. Out of respect for the deceased and their beraved, researchers should choose their words with care. Archives and documents left behind by deceased persons may also contain sensitive personal data, and researchers must handle information about deceased persons and their descendants with care and respect. Research on graves and human remains must be conducted with respect by the researchers.27

18 Defining roles and responsibilities

Researchers are responsible for explaining to the participants the limitations, expectations and requirements associated with their role as researchers.

In situations where researchers relate to participants in a variety of capacities, they are responsible for defining the limits of their role and responsibility as a researcher. Examples are a combination of the roles of researcher and therapist when evaluating possible courses of treatment or the roles of researcher and teacher in a teaching situation. Participant observation in fieldwork may also lead researchers to establish friendships and close relationships with (some) participants or students. Parallel roles may serve a valuable purpose in research, but the use of information obtained by virtue of such parallel roles also requires a free and informed consent if used for research purposes.

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[17] Article 102 of the Norwegian Constitution.

[18] NESH, Ethical Guidelines for Internet Research, Oslo (2003) 2016.

[19] Eivind Smith, Taushetsplikt og kildevern for forskere [Confidentiality and protection of sources for researchers], NESH, Oslo 1998.

[20] Section 196 of the General Civil Penal Code.

[21] The National Research Ethics Committees, Forskeres taushetsplikt og meldeplikt [Researchers' duty of confidentiality and duty of notification], edited by Hallvard Fossheim (NESH) and Helene Ingierd (NENT), Oslo 2013.

[22] Section 6-4 of the Child Welfare Act.

[23] The Archives Act.

[24] The National Research Ethics Committees, Barn i forskning. Etiske dimensjoner [Children in research. Ethical dimensions], edited by Hallvard Fossheim (NESH), Jacob Hølen (NEM) and Helene Ingierd (NESH), Oslo 2013.

[25] The Consumer Ombudsman and the Data Protection Authority, Barn og unges personopplysninger: Veiledning for innhenting og bruk [Guidelines for the collection and use of personal data on children and young persons], Oslo 2004.

[26] NESH, Ethical Guidelines for Internet Research, Oslo (2003) 2016.

[27] The National Committee for Research Ethics on Human Remains, Etiske retningslinjer for forskning på menneskelige levninger [Ethical Guidelines for Research on Human Remains], Oslo 2013.