Topic: Indigenous Peoples and National Minorities

Our topic pages are short summaries intended to highlight and inform on key research ethics topics and issues. The texts refer to relevant resources and references for further reading.

Who Are Indigenous Peoples and National Minorities?

There is no universal or internationally agreed definition of the term Indigenous peoples. Typical characteristics, however, include that they constitute a non-dominant group within the society in which they live, and that they have inhabited their territories since before present state borders were established. Indigenous peoples generally possess a distinct culture closely connected to the use of natural resources and often differ from the majority population in terms of social conditions, culture, and/or language. In Norway, the Sámi are recognized as the Indigenous people. 

National minorities are defined as groups with a longstanding connection to a country and who differ socially, culturally, and/or linguistically from the dominant population of that country. In Norway, the Kven/Norwegian Finns, Forest Finns, Jews, Roma, and Romani people/Taters are recognized as national minorities. 

Historical Injustice

Indigenous peoples and national minorities in Norway have long been subjected to marginalization, assimilation, oppression, and discrimination. The following national inquiries examine the state policies that have been implemented towards these groups and their consequences (not available in English):

• St.meld. nr. 15 (2000-2001). National Minorities in Norway: On State Policy Towards Jews, Kvens, Roma, Romani People and Forest Finns
• NOU 2015: 7. Assimilation and Resistance: Norwegian Policy Towards the Tater/Romani People from 1850 to the Present Day
• The Truth and Reconciliation Commission — A Foundation for Addressing the Norwegianization Policy and Injustices Against the Sámi, Kven/Norwegian Finns, and Forest Finns (2023)

Unethical Research Practices

Historically, research involving Indigenous peoples and national minorities has often been characterized by colonial attitudes – rooted in the idea that certain peoples, cultures, or nations are superior, more important, or more “civilized” than others, and therefore entitled to dominate them. Within the research context, ethnic minorities were frequently regarded as objects of study; research was often conducted without consent, and their cultures, traditions, and values were not respected. Moreover, research was sometimes used – or misused – to justify and reinforce discriminatory practices.

In the latter half of the nineteenth century and the first half of the twentieth century, Norwegian researchers conducted various studies of the Sámi and national minorities. These studies included cranial measurements, photography, and the collection of skeletal remains, with the purpose of categorizing humans into so-called “races” (see, for example, Jon Røyne Kyllingstad's Rase. En vitenskapshistorie (in Norwegian)).

Such research practices would today be regarded as unethical, degrading, and dehumanizing. They have contributed to deep-seated mistrust toward research and researchers among many individuals belonging to Indigenous peoples and national minorities.

For a discussion of the specific ethical challenges associated with research involving Indigenous peoples and national minorities, see the article Ethnic Minorities.

See also the case studies Reburial of Sámi Skeletons in Neiden and Repatriation of Collected Remains of New Zealand’s Indigenous Population in the Human Remains Committee’s Resource on the Repatriation of Human Remains.

Research Ethics Dimensions

Restoring trust in research involving Indigenous peoples and national minorities requires a strong ethical foundation. Both nationally and internationally, there has been growing awareness of these issues. Ongoing discussions highlight several recurring themes and questions, the most central of which are:

1. Informed Consent:
   Indigenous peoples and national minorities must understand the purpose of the research and provide voluntary, informed consent. How can voluntary, informed individual consent be ensured? Is it also necessary to obtain consent at the group level (collective consent)?
2. Participation and Co-determination:
   To what extent should Indigenous peoples and national minorities participate in different phases of a research project – planning, data collection, interpretation, and publication?
3. Cultural Respect and Sensitivity:
   Research should take into account the values, languages, beliefs, and ways of life of Indigenous peoples and national minorities. How can researchers ensure this in practice?
4. Return of Knowledge:
   How can researchers return knowledge to the communities so that it becomes accessible and beneficial to them?
5. Control over Data and Interpretations:
   To what extent should Indigenous peoples and national minorities have the ability to control how information about them is stored, used, and presented? How can one balance the individual’s right to control personal data with the group’s right to manage data concerning the collective?

National Guidelines and Frameworks

In Norway, there is no comprehensive set of guidelines specifically governing research involving Indigenous peoples and national minorities. Various guidelines and systems partially address this field.

All research in Norway must be conducted in accordance with recognized research ethical norms (Research Ethics Act §1). These norms are articulated in research ethics guidelines and include principles concerning informed consent, participation and co-determination, cultural respect and sensitivity, knowledge return, and control over one’s own data and interpretations. For more information on recognized research ethics norms, see Introduction to Research Ethics.

The Guidelines for Research Ethics in Science and Technology (NENT 2024, Nos. 17 and 18) emphasize that researchers should take into account other knowledge holders and knowledge systems, while also protecting them from unreasonable exploitation.

The Guidelines for Research Ethics in the Social Sciences and Humanities (NESH 2021, No. 32) stress the importance of “gaining knowledge about and respect the local context and social relations” when conducting research on cultural groups. At the same time, they underscore that such respect does not necessarily entail the acceptance of all cultural practices.

Health research is regulated by the Health Research Act, which is based on respect for human dignity, integrity, autonomy, and protection against harm and discrimination. All research projects covered by this Act must be reviewed by the Regional Committees for Medical and Health Research Ethics (REK) (with certain exceptions; see REK’s website for further information). Decisions made by REK may be appealed to the National Committee for Medical and Health Research Ethics (NEM).

Drawing on the principle of Indigenous peoples’ right to self-determination as recognized in UN conventions and declarations (see fact box), the Sámi Parliament has adopted Ethical Guidelines for Sámi Health Research (not available in English). These guidelines state, among other things, that “free and informed Sámi collective consent must be obtained before a Sámi health research project is initiated.” They outline the core values on which Sámi health research should be based and specify the requirements for applications seeking collective consent. Furthermore, the guidelines specify that “Sámi consent shall be provided by the body designated by the Sámi Parliament for this purpose. The collective consent supplements other necessary approvals and does not affect the individual’s right to consent or refuse participation in research projects.” The authority to grant such consent lies with the Ethics Committee for Sámi Health Research. REK requires applicants to obtain approval from this committee, and REK approval is conditional upon the committee’s prior consent.

Ethical considerations concerning research on human remains belonging to Indigenous peoples and national minorities are addressed in the Guidelines for Ethical Research on Human Remains (Human Remains Committee, 2022, No. 5). The National Committee for Research Ethics on Human Remains (Human Remains Committee) provides guidance and advice on ethical issues related to research on ancient human remains. When research involves Sámi human remains, approval from the Sámi Parliament is generally required.

Global Guidelines and Frameworks

Several countries have developed comprehensive frameworks or guidelines for research involving Indigenous peoples.

In Finland, the Sámi Parliament and several universities have jointly developed interdisciplinary Ethical Guidelines for Research involving the Sámi People in Finland (English version from page 32). The purpose of these guidelines is to promote culturally safe environments and research practices. Implementation of the guidelines relies on researchers’ self-regulation, and research of this kind is not subject to committee review.

In Australia, two sets of ethical guidelines apply to Indigenous research. The National Health and Medical Research Council (NHMRC) has issued the Ethical guidelines for research with Aboriginal and Torres Strait Islander peoples: Guidelines for researchers and stakeholders (2018). These guidelines establish ethical principles intended to ensure that research is safe, respectful, responsible, of high quality, and beneficial to Aboriginal and Torres Strait Islander peoples and their communities. They apply to all research, not only health and medical research. 

The Australian Institute of Aboriginal and Torres Strait Islander Studies (AIATSIS) has developed the AIATSIS Code of Ethics for Aboriginal and Torres Strait Islander Research (2020). This code is based on the principles of Indigenous self-determination, Indigenous leadership, Impact and value, and Sustainability and accountability. AIATSIS maintains its own ethics committee that approves research projects in accordance with the code, though such approval is not mandatory. 

In New Zealand, Pūtaiora and the National Ethics Advisory Committee (NEAC) have developed ethical guidelines grounded in tikanga Māori—traditional Māori protocols and practices. The Te Ara Tika Guidelines for Maori Research Ethics are designed to guide ethics committee members in assessing research involving Māori communities.

In Canada, the three major research councils have established the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans – TCPS 2 (2022), which is founded on the core principles of respect for persons, justice, concern for welfare, and reciprocity. Chapter 9: Research Involving the First Nations, Inuit, and Metis Peoples of Canada i TCPS 2 provides an ethical framework for research involving Indigenous peoples in Canada. This chapter acknowledges the unique cultural perspectives, histories, and knowledge ownership of Indigenous peoples and aims to address past imbalances and potential exploitation.

In South Africa, ethical guidelines have been developed for and by the San peoples: the San Code of Research Ethics. These guidelines were formulated through workshops supported by San organizations (SASI, SASC, WIMSA) and the EU project TRUST. The code is built on the core values of respect, fairness, care, and honesty, as well as on the right to control one’s own processes. 

In the United States, many Indigenous tribes have established their own ethics committees – such as the Navajo Nation Human Research Review Board – which require approval for any research involving the tribe or its lands. These ethical reviews are grounded in tribal sovereignty and the protection of tribal culture and interests, alongside the Belmont-rapporten (ethical framework for human research) and the Common Rule (45 CFR 46) (regulations for the protection of human subjects in research). 

International Cooperation

The 7th World Conference on Research Integrity, held in Cape Town in 2022, adopted the Cape Town Statement on Fostering Research Integrity through Fairness and Equity. The statement highlights fairness and equity as essential components of research integrity. A dedicated section (paragraphs 18–20) addresses the recognition of Indigenous knowledge and the concept of epistemic justice.

The CARE Principles for Indigenous Data Governance, launched in 2019, aim to ensure that Indigenous peoples maintain fair and sovereign control over data concerning them – whether biological, health-related, social, or cultural. While the FAIR-prinsippene (Findable, Accessible, Interoperable, Reusable) focus on the technical aspects of data accessibility, the CARE Principles (Collective Benefit, Authority to Control, Responsibility, Ethics) emphasize human rights, power relations, and justice.

 

This page has been translated to English with assistance from ChatGPT.