Government of Canada
Symbol of the Government of Canada

Draft 2nd Edition of the TCPS (December 2008)

Chapter 9

RESEARCH INVOLVING ABORIGINAL PEOPLES

A. Interpreting the Ethics Framework in Aboriginal Contexts

This chapter interprets how the value of respect for human dignity and the core principles of concern for welfare, respect for autonomy and equal moral status of all humans, as articulated in Chapter 1 (“Ethics Framework”), apply in varied contexts of research involving Aboriginal peoples, including First Nations, Inuit and Métis.

Ethical codes to protect human dignity have historically been concerned with the well-being of individual participants, interpreted in this Policy as concern for participants’ physical and mental health. Concern for welfare includes individual well-being, but broadens the focus of ethics to consider individuals imbedded in relationships in their physical, social, economic and cultural environments. This Policy acknowledges the important role of Aboriginal communities, particularly those that exercise local or regional governing authority, in promoting collective interests that also serve individual well-being. The Policy also directs attention to ethical protections for the autonomy of individual members within communities and to the interests of urban and other Aboriginal populations who may not have formal representation in an Aboriginal governance structure.

Communities are particularly concerned that research should enhance their capacity to maintain their cultures, languages and identities as distinct peoples and to facilitate their full participation in Canadian society. The interpretation of welfare and the balance between concern for individual well-being and broader concerns for collective welfare may therefore differ significantly in an Aboriginal context, as compared with more individualistic social situations.

Where the social, cultural or linguistic distance between the community and researchers from outside the community is significant, the potential for misunderstanding is likewise significant. Engagement between the community involved and researchers, initiated prior to the actual research activities and maintained over the course of the research, can enhance ethical practice and the quality of research by promoting mutual trust and communication, establishing mutually beneficial research goals, and ensuring that the conduct of research is respectful of the well-being of individuals and the welfare of the collective, as understood by all parties involved.

Respect for autonomy is expressed principally through securing the voluntary, informed consent of research participants. First Nations, Inuit and Métis concerns for their continuity as peoples with distinctive origins, identities and rights have led to the development of ethical protocols to guide community-researcher relations. These protocols typically assign decision-making authority to a body or bodies acting for the collective. Community engagement in these situations, particularly when First Nations, Inuit or Métis communities with local governments are involved, may take the form of formal approval of a research undertaking. While such endorsement may be required to enable research, group approval is not a substitute for consent by participating individuals. A key consideration for researchers, research ethics boards (REBs) and participants is determining when voluntary, informed consent of individuals is sufficient and when the welfare of the relevant group is implicated, making community engagement a priority.

Respect for the equal moral status of all humans is easily compromised when a serious imbalance of power prevails between the researcher and participants. Resulting harms are seldom intentional. In the case of Aboriginal peoples, abuses have historically included appropriation of cultural property such as songs, stories and artifacts, devaluing of Indigenous knowledge as primitive or superstitious, violation of community norms regarding the use of human tissue and remains, and dissemination of information that stigmatized whole communities. Affirmation of Aboriginal rights and respect for community ethics codes and protocols are means to better ensure balance in the relationship between researchers and participants and mutual benefit in researcher-community relations.

B. Ethical Concerns in Research Involving Aboriginal Peoples

Aboriginal peoples have rights and interests that deserve recognition and respect by the research community. The articulation of ethics guidelines for research involving Aboriginal peoples is situated in a broader movement transforming the relationship between Aboriginal peoples and Canadian society. Research has a critical role to play in creating the knowledge base for mutually respectful relationships and full participation in Canadian life, with all its responsibilities and benefits.

The Aboriginal and treaty rights of Aboriginal peoples, including First Nations, Inuit and Métis peoples, were recognized and affirmed in the Constitution Act, 1982, creating an obligation on public institutions to acknowledge and support the desire of Aboriginal peoples to maintain their collective identity and the continuity of their cultures. This affirmation marks a break with Canada’s colonial past, in which the goal of public policy was to absorb Aboriginal peoples into Euro-Canadian society and erase their distinctive identities.

Research conducted ethically can benefit Aboriginal people and communities. However, intrusive or insensitive research can contribute to negative stereotypes of Aboriginal peoples, as well as inaccurate perceptions of research and researchers in Aboriginal societies. In the past, research concerning Aboriginal peoples has usually been initiated outside the Aboriginal community and carried out by non-Aboriginal personnel. Aboriginal people have had little opportunity to correct misinformation or to challenge ethnocentric and racist interpretations. In light of such experience, many Aboriginal people feel apprehensive about the activities of researchers.

First Nations, Inuit and Métis communities and organizations are assuming an increasingly active role in defining how they will relate to external researchers and sponsoring institutions. Community initiatives are grounded in the assertion of inherent Aboriginal rights and go beyond protective measures to ensure that research does no harm. They propose participation as partners in all phases of research to protect their cultural heritage, to ensure that their knowledge systems and understandings of the world are authentically reflected in research practice, and to secure equitable distribution of benefits between researchers and participant communities.

Cultural heritage may include artifacts, cultural property, collective knowledge and skills, and other intangibles that are transmitted from one generation to the next, such as folklore, customs, representations or practices. International instruments such as the United Nations Declaration on the Rights of Indigenous Peoples have helped to raise awareness of the substance of cultural heritage, the risks of misappropriation, and ethical obligations to respect and conserve the integrity of Indigenous knowledge systems.

Aboriginal or Indigenous knowledge is usually described as holistic, involving body, mind, feelings and spirit. Knowledge is specific to place, transmitted orally and rooted in the experience of multiple generations. Indigenous knowledge is expressed in symbols, arts, ceremonial and everyday practices, narratives and, most especially, in relationships. Indigenous peoples value their relationship with the land as a living entity that reveals the way of right living. Indigenous knowledge has gained recognition as a resource of potential benefit to modern society - for example, through traditional techniques of sustaining environmental systems in balance with human usage or knowledge of plant life for agricultural, medicinal and cosmetic purposes. Commercialization of Indigenous knowledge without benefit to communities from which the knowledge originated has prompted efforts to protect the interests of holders of Indigenous knowledge.

Aboriginal peoples in Canada encompass great diversity. First Nations, Inuit and Métis representatives declare that the term “Aboriginal” glosses over the distinctions among them, as peoples with their own histories, cultures and languages. Communities may be large and urbanized or small and isolated. They may be relatively close to a traditional, land-based way of life or integrated in a market economy. Governance may be exercised by a First Nation band council, an Inuit hamlet council, a Métis settlement council or a regional authority. First Nation, Inuit and Métis people who reside off a reserve, land claim territory or settlement now make up the majority of the Aboriginal population of Canada. They do not ordinarily have a governance or administrative structure to represent their interests. Communities are also becoming more diverse internally, as a result of formal education, employment, mobility and intermarriage with non-Aboriginal persons.

In light of ethical obligations to respect the rights of Aboriginal peoples as expressed in community codes and protocols; the local variations in cultural heritage and Indigenous knowledge; and the diversity among and within First Nation, Inuit and Métis communities, researchers should seek culturally informed advice appropriate to the context when their work involves Aboriginal participants.

C. Applying Provisions of this Policy in Aboriginal Contexts

This Policy provides guidance on issues that have been raised frequently in public consultations on revision of the original version of this Policy (1998), in the CIHR Guidelines for Health Research Involving Aboriginal People (2007), and in community protocols and ethics codes. The development of policy applications has also been informed by international dialogue that increasingly acknowledges the unique interest that Aboriginal peoples have in ensuring accurate and informed research concerning their heritage, customs and communities.

Applying this Policy in a way that accommodates the diversity of Aboriginal cultures and communities is complex. The fit between community protocols and institutional policies may be unclear, requiring researchers to adapt conventional practice or broker agreements. Multiple geographic communities or an urban community of interest engaged in research may not have representative bodies to provide guidance to researchers. Researchers and REBs are reminded that ethical judgment must be attentive to the specific context of a proposed project. Researchers and REB members unfamiliar with the changing context of Aboriginal research are advised to consult reference documents that provide a fuller exploration of the concerns cited in this chapter.

D. Research Processes and Ethics Review

When Articles in this Chapter Apply

Article 9.1 Researchers and research ethics boards should consider whether application of the core principles of this Policy require interpretation or adaptation in the context of proposed research involving Aboriginal participants, to demonstrate respect for Aboriginal rights and cultural heritage, the integrity of Indigenous knowledge systems, and the diversity among and within Aboriginal communities.

Application Protections for human research participants set out in this Policy apply to research involving Aboriginal people, with the provision that application of the principles and requirements may require interpretation or adaptation, in situations such as the following:

  1. Research is conducted on a defined First Nation territory, Inuit land claims territory or Métis settlement;
  2. The analysis of the research data will use Aboriginal identity or membership in an Aboriginal community as a variable;
  3. The research involves cultural property, Indigenous knowledge, or input from an Aboriginal community;
  4. There is a reasonable expectation that the research population will include a significant number of Aboriginal individuals;
  5. Recruitment criteria include Aboriginal identity as a factor for the entire study or for a subgroup in the study;
  6. The research question is concerned with Aboriginality or membership in a formal or informal Aboriginal community, or with characteristics of the community; or
  7. The interpretation of the research results will refer to Aboriginal peoples, language, history or culture.

In some primary research, Aboriginal identity of participants may become known only at the point of conducting the research. In such cases, researchers will need to consult with individuals providing data to determine whether cultural accommodations, such as access to a culturally informed advisor or linkage with a community, are appropriate.

General Requirement to Inform REBs on Community Engagement

Article 9.2 In research proposals involving one or more Aboriginal communities or a significant number of Aboriginal participants, researchers shall inform the research ethics board of how they have engaged or intend to engage the community in approving, advising on or managing the project. The nature and extent of community engagement should be appropriate to the type of community and proportionate to the level of Aboriginal involvement in the research.

Application First Nation, Inuit, Métis, urban and rural communities differ significantly from one another, and they are characterized by increasing internal diversity. Engagement with the relevant community throughout the research process is the preferred means of ensuring that the ethical protections incorporated in a project respect the identities, interests and circumstances of participants. In the following examples, List A illustrates degrees of Aboriginal involvement in a variety of research projects and List B gives examples of community engagement proportionate to the level of Aboriginal involvement in each type of project cited.

List A: Examples of Aboriginal involvement

  1. Research directly involving a defined Aboriginal community with formal leadership. Example: a project that examines the incidence of diabetes in Pond Inlet.
  2. Research involving Aboriginal people who comprise a sizable proportion of the study or community and where Aboriginal-specific conclusions are intended. Example: a comparative study of access to public housing in Prince Albert, Saskatchewan.
  3. Research involving Aboriginal people who are part of a larger community (regardless of their proportion) that is the subject of research, and where Aboriginal-specific conclusions are anticipated. Example: a study of student retention in high schools in the Sault Ste. Marie district of Ontario.
  4. Research involving Aboriginal people who comprise a sizeable proportion of the larger community that is the subject of research even if no Aboriginal-specific conclusions will be made. Example: research on employment development programs serving residents of Winnipeg’s inner city.
  5. Research that may incidentally involve a small proportion of Aboriginal individuals but is not intended to single out or describe characteristics of Aboriginal people in the study. Example: a study of the effectiveness of therapies to control high blood pressure in a sample of hospital out-patients.
  6. Natural sciences research on First Nation or Inuit territories where Aboriginal people may act as co-investigators or benefit from findings. Example: research on contaminants in sources of country food in northern Quebec.

List B: Examples of proportionate community engagement

  1. Permission of the land claims organization that carries authority to approve research in Nunavut is required. Agreement of the hamlet council in Pond Inlet will normally be a condition of approval. The local health committee may co-manage the project.
  2. The tribal council representing local First Nation communities may partner with the Prince Albert city council to sponsor, implement and use the results of the housing study.
  3. A committee to advise the District Board of Education and the researchers conducting the retention study may be convened, representing First Nations, Métis organizations and urban Aboriginal people whose children are affected.
  4. Aboriginal service agencies may be engaged to help recruit Aboriginal participants and secure community representation on an oversight committee, to ensure cultural sensitivity in collecting and interpreting data on employment program impacts.
  5. If Aboriginal individuals self-identify during the collection of primary data in the blood pressure study, researchers should inquire whether culturally appropriate assistance is desired to interpret or support compliance with protocols. Since Aboriginal participation is incidental rather than scheduled, informing the REB is not required. However, it should be noted that including markers of Aboriginal identity in data may reveal anomalies that warrant further, more targeted, research.
  6. Research that involves the collection and analysis of tissue samples from animals and does not involve human participants does not require REB review under provisions of this Policy. Inuit and First Nations protocols may, nevertheless, require regional and local permission and reporting of findings to communities on whose traditional territories the research takes place and who may benefit from the research.

The evidence of community engagement in a project may vary from a formal agreement setting out terms of co-management, to verbal approval of the proposed research in a group setting (which should be recorded), to informal advice from an ad hoc committee. Where a researcher has an ongoing relationship with a community, a letter or equivalent evidence of endorsement by a relevant leader or authority may signal approval to proceed with the research.

Communities vary widely in the level of human and material resources they have available to collaborate with research initiatives. First Nation communities have gone furthest in developing bodies to provide ethics oversight. Inuit land claims organizations have the authority to oversee research but have limited personnel available to fill the technical and professional roles in research implementation. Small, remote communities and urban populations have the most limited organizational resources to advise or collaborate in research. The least organizationally developed communities are the most vulnerable to exploitation and should be supported in expanding their capacity to participate rather than suffering dilution of ethical safeguards.

Where Aboriginal participants or communities do not designate an organization or individuals to represent their interests, the responsibility for securing culturally informed advice on ethical protections rests with the researcher or the sponsoring institution.

Research involving multiple Aboriginal communities may adopt varied models of community engagement. Regional bodies or national organizations such as the Mi’kmaq Ethics Watch in Nova Scotia or the Assembly of First Nations provide guidance on research and ethics for constituent communities. Review and endorsement of a research initiative by such an organization may facilitate but not substitute for local engagement.

Historical, genealogical or analytical research that does not collect data from living persons is not ordinarily subject to REB review. Findings of such research nevertheless may have an impact on the identity or heritage of persons or communities. Seeking advice to ensure that cultural perspectives are acknowledged would constitute good practice.

Research on First Nations, Inuit or Métis Territory Requires Consultation

Article 9.3 Where a proposed research project is to be conducted on territory where a First Nation or Métis government has authority or on territory included in an Inuit land claim settlement, researchers are required to consult with formal leaders of the territory or administrators of the settlement agreement, except as provided under Articles 9.7 and 9.8.

Application Community engagement is set out as a basic expectation in research involving Aboriginal participants and communities (Article 9.2, above). Where Aboriginal authorities exercise jurisdiction over designated territory provisions of Article 8.4 in Chapter 8 (“Multi-jurisdictional Research”) may also apply, requiring ethics review of research proposals “by the REB or similar body, where such exists, at the collaborating institution(s) in the host research site.”

Representative Inuit organizations have mandates under land claims agreements to review, approve and monitor research conducted on their territories. Many First Nations have adopted ethical codes and research protocols as an expression of self-determination and an inherent right to self-government, which has been recognized in federal government policy. National bodies such as the First Nations Information Governance Committee of the Assembly of First Nations and regional bodies such as the Mi’kmaq Ethics Watch provide guidance on ethical practices but defer to local communities to make decisions on endorsing research activities.

Mail-out, telephone and Internet surveys to poll members on First Nation or Inuit territories are subject to the same requirements of community engagement and ethics review as are other forms of research involving Aboriginal peoples.

While the legal basis for governance of research may vary depending on the community, the practical requirement of engaging community leaders and the ethical obligation to respect community views on well-being and welfare remain consistent.

Article 9.4 Researchers are required to obtain free, and informed consent of individual participants in research projects involving Aboriginal people, in accordance with provisions of Chapter 3 (“Free and Informed Consent”) and in addition to group engagement, where appropriate.

Application In no case is community or organizational agreement a substitute for individuals’ informed consent to participate in a research project. Researchers should be sensitive to the possibility that an individual’s decision to participate or withhold participation in research may be constrained by group influence. While conformity to the group may be by choice, any undue influence on the exercise of autonomy should be mitigated where possible.

Respect for Community Ethics Codes and Protocols

Article 9.5 Where prospective participants signify that a community ethics code or protocol is in effect, researchers and research ethics boards shall take into consideration the code or protocol that applies in the territory or organization. The similarity, divergence or overlap of such code or protocol with this Policy, and clarification of mutual expectations, should be considered by all parties in advance of launching a particular project.

Application Where communities indicate that they endorse a particular ethics code or research protocol, or when individuals participate in research as members of a community or organization adhering to such protocols, researchers and REBs should take into consideration the code or protocol that applies in the territory or organization and seek to harmonize any differences that may arise between that code or protocol and this Policy.

Many First Nations communities across Canada have adopted an ethics code identified by the principles of ownership, control, access and possession (OCAP), which asserts ownership, control, access and possession of research processes affecting them. The principle of ownership asserts that a community or group owns information collectively in the same way that an individual owns personal information and that the community or group can therefore choose to share it (or not) under conditions that they specify. The principle of control asserts that First Nations peoples, their communities and representative bodies have a right to control all aspects of research and information management processes that affect them. Control can extend to all stages of a research project, from conception to completion. The principle of access asserts that First Nations peoples must have access to data about themselves and their communities collected in the course of research, and they have a right to make decisions regarding access by others to their collective information. Possession of data need not be exercised at the local level. In the case of the Regional Longitudinal Health Survey funded by Health Canada and administered by First Nation agencies, communities typically delegate stewardship of data to a regional organization that has adequate infrastructure to manage confidential personal data. OCAP principles together represent assertion of self-determination applied to research.

Inuit Tapiriit Kanatami, which represents four Inuit regions, has published a guide for negotiating research relationships with Inuit communities.

Métis communities, women’s groups and urban organizations aspire to assume a larger role in research affecting their members, but development of these research protocols is at an earlier stage. Without a land base or official recognition of service entitlements, these sectors of the Aboriginal community generally are limited to project-based funding for research and similarly limited opportunities to develop policy on research.

Community review of research may have distinct purposes and procedures, and it will not replace REB review within institutions supporting particular projects. Having reference to parallel codes and protocols in institutions and communities is likely to pose questions of which code should prevail when expectations and/or requirements diverge. Maintaining respectful relationships will be dependent on all partners being prepared to reflect on what is essential to achieving common goals and on what degree of flexibility is consistent with their core values.

Article 9.6 Researchers should consider entering into research agreements with those Aboriginal communities who have adopted ethics codes or protocols, as a means of clarifying and confirming mutual expectations and commitments between researchers and communities.

Application Research agreements serve as a primary means of clarifying and confirming mutual expectations and commitments between researchers and communities. Expanding on information normally provided to an individual participant (see Article 3.2), agreements typically set out the purpose of the research and detail mutual responsibilities in project design, data collection and management, analysis and interpretation, production of reports and dissemination of results.

The level of community engagement desired and achieved will depend on the organizational infrastructure in place in the community or group and the willingness and capacity of all parties to develop the necessary supports for shared direction and responsibility. Particularly in First Nations and Inuit communities, collective endorsement of research initiatives has become a standard requirement. Such agreements are increasingly being recognized by academic institutions and the researchers associated with them as providing reference points for ethics review and approval on such elements as consent and confidentiality. Agreements that specify procedures for community ethics review, included as part of the institutional ethics application, can provide contextual information and guidance for REBs conducting initial review of applications and continuing ethics review throughout the project.

Community Engagement at Variance with Operative Protocols

Article 9.7 Where alternatives to community, regional or organization protocols are deemed necessary to ensure the inclusion or safety of participants or the achievement of research objectives, the researcher shall describe such alternatives and provide a rationale to the research ethics board for pursuing them.

Application While protocols under the authority of formal leaders, such as chiefs and band councils or hamlet councils, generally serve community interests, First Nation, Inuit and Métis communities are far from homogeneous. Diverse communities of interest often co-exist within geographic communities, and formal leaders may not be the appropriate persons to act on their behalf.

In the case of traditional leadership structures or sacred societies, legitimate channels to endorse group participation exist. Examples are the Confederacy Council of the Haudenosaunee, whose authority derives from the Great Law of the Iroquois rather than the Indian Act, or sacred societies of the Blackfoot, which are recognized as the authorities with respect to their knowledge. REBs should respect such leadership structures when reviewing the consent process and procedures in research proposals.

In the case of persons or groups that may be vulnerable within communities, alternative avenues for engaging participation may be more appropriate. For example, women taking action against domestic violence have encountered opposition from some community leaders and so may not have access to formal approval of research to improve their safety, well-being or welfare. Alienated youth may not trust that their voices will be respected if official leadership is involved in approving the research.

Where divergent group interests within a community appear to be in conflict, problem-solving on site will be required to avoid deepening divisions or increasing the vulnerability of groups and individuals. The good offices of trustworthy persons who have moral authority in the community can often be enlisted to find ways to proceed with research that preserves respect for all parties. However, in some cases the risks involved simply outweigh the benefits to be derived from proceeding with the research.

Where alternatives to seeking approval of formal leaders are to be pursued, researchers should provide a rationale and document the nature of the process to be followed.

Critical Inquiry

Article 9.8 Research that critically examines the conduct of public institutions or persons in authority may do so ethically, notwithstanding the usual requirement, in research involving Aboriginal peoples, of engaging representative leaders. In such cases care should be taken to ensure sensitivity to culture and community contexts.

Application The general provision that guidance for ethical conduct of research should be obtained through engagement with the relevant community should not be a bar to critical inquiry in which the objective may be to uncover unjust or ill-conceived behaviour on the part of public institutions or persons in authority. Considerations in conducting critical inquiry are discussed more fully in Article 3.6 of Chapter 3 (“Free and Informed Consent”).

As in the case of research involving vulnerable subgroups within an Aboriginal community, critical inquiry will require creative approaches to ensure cultural appropriateness and integrity of the research. The Sisters in Spirit project of the Native Women’s Association of Canada (NWAC) illustrates successful mounting of research that incorporates a critical dimension and multiple ways of validating goals and methods of the research.

The Sisters in Spirit Project is national in scope, interviewing the families of missing and murdered Aboriginal women in urban and rural settings, on and off First Nations territory. The purpose is to document the experience of the disappeared women and their families to effect policy change and improve the safety and well-being of Aboriginal women in Canada. The research is funded by Status of Women Canada and has been endorsed by resolution of the Assembly of First Nations. NWAC assumes responsibility for monitoring the ethical conduct of its researchers. The project examines, among other matters, the adequacy of public institutions and services to protect the women’s well-being and support families in their efforts to deal with their losses. NWAC acts as its own ethical review body, builds on its established moral authority to investigate sensitive matters, welcomes endorsement by a national political organization, engages the cooperation of regional health directors where available, and informs local authorities of the presence of its researchers on First Nations territory.

Privacy and Confidentiality

Article 9.9 In the context of community-based research collaboration, researchers, research ethics boards and community partners should consider early in the design of the research how community protocols on data custody and confidentiality fit with provisions for privacy set out in Chapter 5 (“Privacy and Confidentiality”) in order to resolve any inconsistencies.

Application Researchers should inform communities and individuals what arrangements are made in partnered research to respect privacy of individuals and communities.

Privacy and confidentiality of identifiable personal and community information may be affected in some First Nation communities by application of the principles of ownership, control, access and possession (OCAP) (see definition under Article 9.5). Negotiation of research agreements permits Aboriginal parties and academic researchers to explore the practical implications of the OCAP principles in First Nation communities or comparable principles operative in Inuit and Métis communities, to reach mutual accommodations. Where research agreements provide that community partners will have limited or full access to identifiable personal data, the consent of participants to such disclosure shall form part of the consent procedure.

Many Aboriginal communities are small and characterized by dense networks of relationships, with the result that anonymizing individual data is often not sufficient to mask identities. Some Aboriginal research participants are reluctant to speak to interviewers from their own community because of privacy concerns. Other participants, in qualitative studies or life histories, may wish to be acknowledged individually for their contributions. Communities themselves have distinguishing characteristics, which in some cases have compromised efforts to disguise the site of research and led to the communities’ being stigmatized.

The Regional Health Survey administered by regional First Nations organizations has addressed the problem of balancing confidentiality and access by having communities designate a regional organization to hold data while local authorities make decisions on who can access the data and under what conditions. In practice, the organization that serves as data steward evaluates requests for information, and its recommendations to community authorities have considerable influence.

Privacy protections within the research context are evolving within the federal granting Agencies, with attention to harmonization with federal, provincial and territorial legislation. The Canadian Institutes for Health Research has published CIHR Best Practices for Protecting Privacy in Health Research. Accommodation of Aboriginal initiatives to maintain access to data for community use, applying principles such as OCAP, will be situated within the larger framework of law and policy to protect privacy.

Protection of Indigenous and Cultural Knowledge

Article 9.10 Researchers should consider, and research ethics boards should review, whether tangible or intangible cultural property of Aboriginal persons or communities is at risk of misuse or misappropriation when collected in the context of research involving Aboriginal participants or communities. Researchers should include measures to mitigate such risks of misuse or misappropriation in the research ethics review proposal.

Application Researchers should negotiate with communities mutual understandings of appropriate respect for cultural property including Indigenous knowledge, how to proceed with community review of findings, terms of ownership of research products, and any limits on publication of materials, including how intellectual property rights to research products will be assigned: whether to community sources, to researchers, or to both on a shared basis.

REBs should review the measures researchers put in place to recognize and protect Indigenous or local knowledge in the conduct of the project and the dissemination of findings.

Cultural property often does not fit the criteria of sole ownership, innovation and representation in a tangible work that are necessary to claim protection for intellectual property rights. National laws and international consensus on these issues are evolving. The definitions of tangible and intangible cultural property over which Indigenous peoples arguably have rights are broader than the definitions of intellectual property protected under national law and international agreements. Intangible cultural property, such as traditional knowledge of the medicinal properties of plants or traditional clothing design, that is collectively held is often regarded as “folk knowledge” that is available in the public domain and that may be adapted through commercial processes to produce marketable commodities without consent of the originators.

Researchers should afford the community an opportunity to react and respond to research findings before the completion of the final report, in the final report, or even in all relevant publications. (See Article 3.2 in Chapter 3 [“Free and Informed Consent”] on information disclosure.) Collaborative research reports are regarded as a product of both community and researcher contributions rather than the sole property of the researcher. Communities consider that their review and approval of reports and academic publications is essential to validate findings, protect against misinterpretation, and maintain respect for Indigenous knowledge, which may entail limitations on its disclosure. If disagreement arises between researchers and the community, researchers should afford the group an opportunity to make its views known, or they should accurately report any disagreement about the interpretation of the data in their reports or publications.

Secondary Use of Data

Article 9.11 Consistent with the general provisions set out in Chapter 5 (“Privacy and Confidentiality), secondary use of data collected initially for other purposes, from which personal identifiers have been removed, does not require research ethics board (REB) review. Secondary use of data that is identifiable as originating from a specific community, or a segment of the Aboriginal community at large, requires REB review and may warrant seeking culturally informed advice about protection of cultural property or representations of Indigenous knowledge or society.

Application The privacy of individual participants in research is normally protected by removing information that would identify them personally. Anonymized data are added to a data pool and are available for analysis and sometimes for secondary use.

As discussed in Chapter 5 (“Privacy and Confidentiality), access to data containing identifiable personal information may be needed for some types of research. For example, longitudinal studies require access to identifiable information contained in data banks, although consent for additional studies was not obtained from original informants and it may be impractical to obtain it subsequently. Such secondary usage requires REB review (see Articles 5.5 to 5.7 in Chapter 5 [“Privacy and Confidentiality”]), and the REB may allow a waiver of consent under certain conditions (see Article 3.8).

Misrepresentation of Aboriginal peoples, unauthorized use of data, and lack of reporting to communities on research outcomes have created ongoing sensitivity about secondary use of data collected for approved purposes. For example, members of Nuu-chah-nulth communities in British Columbia provided blood samples for research on rheumatic disease. They vigorously protested use of the blood components for subsequent genetic research that pronounced on their ancient origins and challenged traditional knowledge about their identity. There are additional fears in First Nation communities that general consent to use health data for purposes other than treatment will facilitate unauthorized government surveillance.

In light of sensitivity about harms ensuing from identification of communities, potential misuse of cultural property or misrepresentation of Indigenous knowledge when interpretation of data is no longer guided by community representatives, secondary use of data identifiable as originating from Aboriginal participants or communities should be subject to REB review. Any constraints imposed on use of the data in the original project should be noted if such information is available. Consistent with Article 5.6, the researcher should propose to the REB an appropriate strategy for securing agreement of the relevant individuals or group, or, if this is impossible or impracticable, there should be consultation with one or more organizations that are likely to represent the views and interests of the original participants.

Benefits of Research

Community benefit may include relevant knowledge, evidence-based policy and social interventions, and increased capacity to conduct partnered or autonomous research. In most research relationships, a primary benefit sought by communities is increased capacity to conduct autonomous research that can more readily be conducted in Aboriginal languages and oral modes. Autonomous research would enhance the exploration, articulation and application of Indigenous knowledge in its own context, with translation to other contexts following a parallel process. Articles 9.12 and 9.13 specify benefits that may accrue in the context of partnerships between Aboriginal communities and external researchers. (See reference to benefit-sharing in Section B of Chapter 1 [“Ethics Framework”].)

Article 9.12 Communities should have access to data important to their own planning and development processes, with protections for privacy and confidentiality of personal data as noted in this chapter.

Application Communities participating in research place a high priority on access to research data that will allow them to address pressing issues through community-generated policies, programs and services. Divergence between community priorities and provisions of this policy should be the subject of negotiation and agreement at initial stages of the research.

Article 9.13 Researchers should endeavour, where appropriate and possible, to share costs and benefits of research equitably between researchers, institutions and Aboriginal communities, including personnel and administrative costs of collaborating in ethics review and project oversight.

Application Aboriginal people also seek to share in the benefits of research activities themselves in the form of direct research grants, overhead levies on shared projects, and commercialization of research discoveries. In recent times, community-based projects have made provisions for sharing grant resources with community partners. Elders are now being recognized in research proposals and grant applications as providing access to community networks, ethical guidance to researchers, and advice in interpreting findings in the context of traditional knowledge. Advice from the community will be valuable in determining appropriate compensation for the time of participants and observance of conventions of gift-giving or feasting that are important to successful collaboration with communities. Employing Aboriginal research assistants and translators is already common practice in community-based projects. Implementing a rational program of training to enhance autonomous research initiatives is less common.

Direct and indirect costs of collaborative, community-based research are cited by researchers and Aboriginal agencies as impediments to community engagement as endorsed in this Policy. Such costs are sometimes offset by securing in-kind contributions from service-oriented programs engaged with the same population - for example, counselling and shelter programs serving urban Aboriginal youth participating in a project. The obligation to reach agreement on ethical safeguards for participants in such cases extends to third parties.

Direct funding to community entities conducting research is anticipated in some current programs, although the requirement for ethics review is still met through researcher affiliation with institutions adhering to this Policy, collaborating with the community organizations.

Human Genetic Research

Genetic researchers and their sponsors demonstrate a high level of interest in research among Indigenous populations, especially those that are socially isolated and homogeneous. Genetic research has potentially important implications for Aboriginal communities. Particular considerations in ethics review of human genetic research are discussed in Chapter 13 (“Human Genetic Research”). In such research involving Aboriginal peoples, the provisions of Chapter 13 should be read in conjunction with the ethical safeguards set out in the present chapter. Attention is directed specifically to the implications of genetic research for communities, as specified in Article 13.7.

Research Involving Indigenous Peoples in Other Countries

Although the present chapter addresses research involving Aboriginal peoples in Canada, researchers, REBs, research participants and the research community at large should consider the principles articulated here in the context of research involving Indigenous peoples in other countries or in research settings where collective decision-making is the preferred procedure supporting individual consent for research participation. For considerations that apply to research conducted in another country, see Sections B and C in Chapter 8 (“Multi-jurisdictional Research”).

REB Review

Article 9.14 Research ethics boards (REBs) reviewing research involving Aboriginal participants and communities on a recurring basis should ensure that they have access to relevant expertise within regular REB membership, through ad hoc consultation with knowledgeable academic and community advisors, or through collaboration with community ethics review bodies.

Application In accordance with Article 6.5 in Chapter 6 (“Governance of Research Ethics Review”), an REB should have provisions for membership such that when context-specific expertise is lacking for the review of particular research proposals, ad hoc advisors are appointed. In cases where review of research involving Aboriginal peoples is regularly required, the REB membership should be modified to ensure cultural expertise within its regular complement.

Article 9.15 Researchers and research ethics boards should recognize that ethics review by community bodies will often pursue purposes and apply criteria that differ from the provisions of this Policy. It is therefore inappropriate to insist on uniformity between community practices and institutional policies. The objective of engagement between researchers and community entities should be to find common ground, anticipate differences, and resolve conflicts that might interfere with ethical protection of participants and achievement of research goals.

Application The express purpose of most Aboriginal community ethics codes is to ensure relevance of research undertakings to community needs and priorities and respect for Aboriginal identities, cultures and knowledge systems. While community codes and institutional policies may share many goals, the approaches to achieving those goals may differ significantly.

The membership of community review bodies will not necessarily duplicate the membership criteria set out in this Policy. In the context of scarce resources in community organizations, the same personnel may be involved in reviewing the ethics of a proposal and co-managing the research. An expectation that conflict of interest will be managed by separating ethics review and project management functions may impose unsupportable demands on small communities. Community processes may apply to research beyond the scope of REB responsibilities. For example, research on the interface between environmental and human systems that does not involve individual participants does not require REB review.

Ethics review by community entities will not be a substitute for review by institutional REBs except where the community is the direct recipient of funding and has constituted a local REB recognized by the sponsor of the research initiative. This does not exempt researchers affiliated with an institution and collaborating with the community from seeking REB approval at their institution.

References

  • Aboriginal Research Ethics Initiative of the Interagency Advisory Panel on Research Ethics, “Issues and Options for Revisions to the TCPS: Section 6: Research Involving Aboriginal Peoples.” February 2008.
  • Canadian Institutes of Health Research, CIHR Guidelines for Health Research Involving Aboriginal People. May 2007. http://www.cihr-irsc.gc.ca/e/29134.html.
  • ------, Best Practices for Protecting Privacy in Health Research. September 2005. www.cihr-irsc.gc.ca/e/29072.html.
  • First Nations Regional Longitudinal Health Survey (RHS) http://www.rhs-ers.ca/english/.
  • First Nations Centre. (2007). OCAP: Ownership, Control, Access and Possession. Sanctioned by the First Nations Information Governance Committee, Assembly of First Nations. Ottawa: National Aboriginal Health Organization.
  • ITK and NRI. (2007). Negotiating Research Relationships with Inuit Communities: A Guide for Researchers. Scot Nickels, Jamal Shirley, and Gita Laidler (eds). Inuit Tapiriit Kanatami and Nunavut Research Institute: Ottawa and Iqaluit. 38 pp.
  • United Nations Educational, Scientific and Cultural Organization, Universal Declaration on Bioethics and Human Rights. Adopted 19 October 2005 by the 334d session of the General Conference of UNESCO. 2005. http://portal.unesco.org/shs/en/ev.php-URL_ID=1883&URL_DO=DO_TOPIC&URL_SECTION=201.html.