Chapter 9 - Concordance TCPS / CIHR (PDF, 118K)
Chapter 9 - November 2009 (PDF, 149K)
The Aboriginal and treaty rights of Aboriginal peoples, including Indian (First Nations), Inuit and Métis peoples, which were recognized and affirmed in the Constitution Act, 1982, create an obligation on public institutions to acknowledge and support the desire of First Nations, Inuit and Métis to maintain their collective identities and the continuity of their cultures.
This chapter acknowledges the unique status of the Aboriginal peoples of Canada. It interprets how the value of respect for human dignity and the core principles of respect for persons, concern for welfare, and justice, as articulated in Chapter 1 (“Ethics Framework”) apply to research involving Aboriginal peoples. It accords respect to Indigenous knowledge systems by ensuring that distinct world views are represented wherever possible in planning and decision-making, from the earliest stages of conception and design of projects through to analysis and dissemination of results. It affirms Aboriginal rights, interests and responsibilities as reflected in community customs and codes of researchpractice in order to better ensure balance in the relationship between researchers and participants and mutual benefit in researcher-community relations.
The desire to conserve and develop knowledge specific to First Nations, Inuit and Métis communities, and to benefit from modern applications of traditional knowledge, is a motivating force in community initiatives to assume a decisive role in research. The guidance provided in this chapter is based on the premise that engagement with community is an integral part of ethical research involving Aboriginal people. While continuing to respect individual autonomy, this Policy acknowledges the role of community in shaping the conduct of research, in particular, research that affects First Nations, Inuit and Métis peoples. In light of the diversity within and between First Nations, Inuit and Métis communities, and the ongoing development of community codes of research practice by these communities at the local, regional and national level, ethical review of a proposed project must be attentive to its specific context.
This chapter has drawn on prior work, both within Canada and internationally, that recognizes the rights, interests and responsibilities of Aboriginal peoples participating in and affected by research endeavours. Some of that work has been done by the three agencies responsible for this Policy. In particular, the Canadian Institutes of Health Research (CIHR) and its Institute of Aboriginal Peoples’ Health have engaged in extensive dialogue with community partners to develop CIHR Guidelines for Health Research Involving Aboriginal People (2007). The Social Sciences and Humanities Research Council (SSHRC) and the Natural Sciences and Engineering Research Council (NSERC) likewise have developed guidelines applicable to programs targeted at research involving Aboriginal people and issues. Aboriginal entities at local, regional and national levels have published and implemented codes governing research practice, including ethical protections, that emphasize collective rights, interests and responsibilities.
This Policy provides guidance for research involving humans, as defined in Chapter 2 (“Scope and Approach”). Guidelines applicable to particular programs, research domains and community settings may elaborate on processes set out herein, or may address ethical concerns of broader scope. Researchers and research ethics boards (REB) are advised to consult reference documents that apply to their research undertaking. Examples of relevant resources are listed at the end of this chapter.
This chapter uses the following key concepts:
Aboriginal peoples: A term used in the Constitution Act, 1982, referring collectively to Indian (First Nations), Inuit and Métis peoples, whose existing Aboriginal and treaty rights are affirmed and protected. For the purposes of this Policy, this term includes persons of First Nations, Inuit or Métis origin regardless of where they reside and whether or not they have status on an official register. The term “Aboriginal” glosses over the distinctions among First Nations, Inuit and Métis peoples, who have their own distinct histories, cultures and languages, so an attempt has been made to limit use of the term in this Policy to instances where a global term is appropriate.
Aboriginal rights, interests and responsibilities: For the purposes of this Policy, ethical obligations are more broadly construed than the legal definition of Aboriginal and treaty rights. The term “responsibilities” is consistent with Aboriginal worldviews that include multi-generational obligations to ancestors and future generations.
Community: A term used to describe a collectivity with shared identity or interests that has the capacity to act or express itself as a group. In this Policy, a community may be territorial, organizational or a community of interest. Territorial communities have governing bodies exercising local or regional jurisdiction, for example, members of a First Nation resident on reserve lands. Organizational communities have explicit mandates and formal leadership. In both territorial and organizational communities, membership is defined and the community has designated leaders. Communities of interest may be formed by individuals or organizations who come together for a common purpose or undertaking, such as a commitment to conserving a heritage language. These are informal communities, whose boundaries and leadership may be fluid and less well-defined. They may exist temporarily or over the long term.
An individual may belong to multiple communities, both Aboriginal and non-Aboriginal, for example as a member of a local Métis community, a graduate students’ society, and a coalition in support of Aboriginal rights. For the purposes of research, how an individual defines which of his or her community relationships are most relevant will likely depend on the nature of the particular research project being proposed.
Community engagement: Community engagement is a process that establishes interaction between a researcher or research team and the Aboriginal community relevant to the research project. It signifies a collaborative relationship between researchers and communities, although the degree of collaboration may vary depending on the community context and the nature of the research.The engagement may take many forms, including: consent from formal leadership to conduct research in the community; joint planning with a responsible agency; commitment to a partnership formalized in a research agreement; or dialogue with an advisory group expert in the customs governing the knowledge being sought. The level of engagement may range from information sharing to active participation and collaboration to empowerment and shared leadership of the research project. Communities may also choose not to engage actively in a research project, but simply to acknowledge it and register no objection to it.
Indigenous knowledge is the term in common usage internationally to refer to the knowledge held by Indigenous peoples who, in Canada, may be referred to as Aboriginal. Indigenous knowledgeis 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 especially, in relationships. Indigenous peoples value their relationship with the land as a living entity that reveals the way to living a good life. Spirituality expressed in traditional or Christian practices, relationships with ancestors and responsibilities to coming generations are integral to the worldview of many Aboriginal peoples.
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. It includes traditional knowledge received from past generations and innovations transmitted to subsequent generations.
Chapter 1 (“Ethics Framework”) identifies three principles as expressions of the core ethical value of respect for human dignity: respect for persons, concern for welfare and justice. The three core principles are interpreted in this chapter as follows:
Respect for persons 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 cultures and identities have increasingly led to the development of codes of research practice that address concerns arising from their worldviews. Aboriginal codes of research practice thus go beyond the scope of ethical protections for individual participants, and extend to the interconnection between humans and the natural world, as well as obligations to maintain and pass on to future generations knowledge received from ancestors and innovations devised in the present generation.
Historically, the well-being of individual participants has been the focus of research ethics guidelines. In this Policy, the principle of concern for welfare is broader, requiring consideration of participants and potential participants in their physical, social, economic, and cultural environments. This Policy acknowledges the important role of Aboriginal communities in promoting collective rights, interests and responsibilities that also serve the welfare of individuals.
Aboriginal peoples 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 andcontribution to Canadian society. The interpretation of concern for welfare in First Nations, Inuit and Métis contexts may therefore place strong emphasis on collective welfare as a complement to individual well-being.
Justice may be compromised when a serious imbalance of power prevails between the researcher and participants. Resulting harms are seldom intentional but nonetheless real for the research participants. In the case of Aboriginal peoples, abuses stemming from research have included: appropriation of cultural heritage such as songs, stories and artefacts; 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 misrepresented or stigmatized whole communities.
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 recruiting participants and maintained over the course of the research, can enhance ethical practice and the quality of research.Taking time to establish a relationship can promote mutual trust and communication, identify mutually beneficial research goals, define appropriate research collaborations or partnerships, and ensure that the conduct of research adheres to the principles of justice, respect for persons and the concern for welfare of the collective, as understood by all parties involved.
Research Involving Indigenous Peoples in Other Countries
Indigenous peoples is a term used in international discourse, roughly equivalent to the umbrella term Aboriginal peoples in Canada. Indigenous people are the descendants of those who inhabited a country or a geographical region prior to the time when people of different cultures or ethnic origins arrived and established dominance through conquest, occupation or settlement. They display resolve to maintain and adapt their heritage and historical links to their territories and associated natural resources.
Although the present chapter addresses research involving Aboriginal peoples in Canada, researchers, research ethics boards (REBs), research participants and the research community at large may find the guidance articulated here useful when undertaking research or reviewing a proposal involving Indigenous peoples in other countries or ethno-cultural groups who endorse collective decision-making as a complement to individual consent. However, the importance of seeking local guidance in applying or adapting ethical guidelines articulated in this Policy must be emphasized.
For considerations that apply to research conducted in another country, see Sections B and C in Chapter 8 (“Multi-Jurisdictional Research”).
The Requirement of Community Engagement in Aboriginal Research
Article 9.1 Where the research is likely to affect a community or communities to which potential participants belong, and where any of the following conditions apply, researchers shall seek engagement with the relevant community:
(a) Research is conducted on First Nations, Inuit or Métis lands;
(b) Recruitment criteria include Aboriginal identity as a factor for the entire study or for a subgroup in the study;
(c) The research seeks input from participants regarding a community’s cultural heritage, artefacts, Indigenous knowledge or unique characteristics;
(d) Aboriginal identity or membership in an Aboriginal community is used as a variable for the purpose of analysis of the research data;
(e) The interpretation of the research results will refer to Aboriginal communities, peoples, language, history or culture.
Application While the legal basis for research oversight may vary depending on the community, the practical requirement of engaging community representatives and the ethical obligation to respect community views of welfare remain consistent.
Paragraph (a) refers to First Nations, Inuit and Métis lands that include Indian reserves, Métis settlements, lands allocated under an Inuit or First Nations land claim agreement and lands over which a claim has been asserted but not settled, as defined by the Aboriginal community prospectively engaged in research.
Paragraph (c) refers to cultural heritage, which includes but is not limited to First Nations, Inuit and Métis peoples’ relations with particular territories, material objects, collective knowledge and skills, and intangibles that are transmitted from one generation to the next – such as folklore, customs, representations or practices. Cultural heritage is a dynamic concept, in that materials, knowledge and practices are continuously adapted to the realities of current experience.For further discussion of cultural heritage see, for example, the United Nations Declaration on the Rights of Indigenous Peoples cited under References at the end of this chapter.
Cultural heritage research such as archaeological research and handling of artefacts may raise ethical obligations important to the Aboriginal community that may not be addressed in academic research protocols. Researchers and communities should agreein advance on how to reconcile or address these divergent perspectives (see Article 9.12).
Paragraph (c) also refers to Indigenous knowledge. Appropriation of Indigenous knowledge, treatment of such knowledge as a commodity to be traded, or making unauthorized adaptations for commercial purposes may cause offence or harm to communities from which the knowledge originates. Such violations have prompted initiatives in various countries and international agencies to prevent unethical exploitation of Indigenous knowledge and knowledge holders (see Article 9.18, “Intellectual Property and Copyright”).
Forms of Engagement
Community engagement as defined in this Policy can take varied forms. In geographic and organizational communities that have local governments or formal leadership, engagement would normally take the form of review and approval of a research proposal by a designated body prior to recruiting participants. In less structured situations, for example a community of interest, a key consideration for researchers, prospective participants and research ethics boards (REBs) is determining the nature and extent of community engagement required. In some situations the determination may be that the welfare of relevant communities is not affected and voluntary, informed consent of individuals is sufficient. Communities lacking infrastructure to support community engagement should not be deprived of opportunities to participate in guiding research affecting their welfare (see Article 9.14, “Strengthening Research Capacity”).
Article 9.2 The nature and extent of community engagement in a project shall be determined jointly by the researcher and the relevant community and shall be appropriate to community characteristics and the nature of the research.
Application First Nations, Inuit and Métis communities differ from one another, and they encompass increasing diversity within their own boundaries as a result of formal education, employment, mobility and intermarriage with non-Aboriginal persons. This diversity makes generalizations about the form of community engagement inappropriate. It also increases the importance of clarifying mutual expectations and obligations with the community and incorporating them in a research agreement.
The following list, which is not exhaustive, provides examples to illustrate the forms of Aboriginal engagement that might be appropriate in various types of research.
1) Research directly involving a community on First Nation, Inuit or Métis lands with a formal governance structure. For example, a project that examines the incidence of diabetes in Pond Inlet or the impact on Inuit health of contaminants in animals and plants used for country food.
2) Research involving Aboriginal people who comprise a sizeable proportion of the study or community and where Aboriginal-specific conclusions are intended. For example, a comparative study of access to public housing in Prince Albert, Saskatchewan.
3) Research focusing on a larger community which is known to include Aboriginal people (regardless of their proportion), and where Aboriginal-specific conclusions are anticipated. For 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. For example, research on employment development programs serving residents of Winnipeg’s inner city.
5) Interviewing a sample of individuals of Aboriginal ancestry across Canada on the impact of a policy in their lives, where the results are not attributable to or likely to affect the community or communities with which they may identify. For example, survey research on the implementation of Indian Act provisions requiring ministerial approval of an “Indian’s” will.
6) Natural sciences research on First Nation or Inuit lands where Aboriginal people may act as co-investigators or benefit from findings. For example, research focusing exclusively on contaminants in animals or plants in Nunavik that does not make inferences regarding food intake.
7) Research that incidentally involves a small proportion of Aboriginal individuals but is not intended to single out or describe characteristics of Aboriginal people in the study. For example, a study of the effectiveness of therapies to control high blood pressure in a sample of hospital outpatients not designed to collect Aboriginal-specific data.
8) Research exclusively based on publicly available information as defined by this policy. For example, historical, genealogical or analytical research based exclusively on publicly available records or data in accordance with statutes.
Respect for Jurisdiction on First Nation, Inuit and Métis Lands
Article 9.3 Where a proposed research project is to be conducted on lands under the jurisdiction of a First Nation government, an Inuit land claim organization or a Métis government, or on traditional lands subject to a claim as defined by the community, researchers shall seek the engagement of formalleaders of the community, except as provided under Articles 9.5, 9.6 and 9.7.
Application Formal leaders with governance responsibilities on First Nations, Inuit or Métis lands are charged with protecting the welfare of the community. They may approve research or delegate responsibility for reviewing proposals to a local or regional body. Article 8.4 in Chapter 8 (“Multi-Jurisdictional Research”), applies in such cases, requiring ethics review of research proposals by both the research ethics board (REB) at the researcher’s institution and “by the REB or other responsible body, where such exists, [at the collaborating institutions(s)] in the host research site,” Ethics review by the institutional REB and the responsible community body are required in advance of recruiting and securing consent of individuals.
Research involving multiple geographic communities raises complex issues of review and approval. Regional bodies or national organizations may facilitate ethics review and make recommendations but the decision on participation normally rests with the local community.
Engagement with Organizations and Communities of Interest
Article 9.4 Aboriginal organizations, including First Nations, Inuit and Métis representative bodies, service organizations and communities of interest shall be recognized as communities for the purposes of collaboration in research undertakings and representation of their members in ethical review and oversight of projects.
Application Research affecting First Nations, Inuit and Métis peoples is often initiated outside the Aboriginal community and carried out by non-Aboriginal personnel. Researchers have often neglected to inform participants and communities of results and they have afforded Aboriginal people little opportunity to correct misinformation or to challenge ethnocentric interpretations. In light of such experience, many Aboriginal people feel apprehensive about the activities of researchers and they are reluctant to participate in research.
A majority of persons who self-identify as Aboriginal live in rural and urban communities outside of designated Aboriginal lands. Issues affecting their welfare are under-researched. Political organizations, Friendship Centres, housing associations, healing circles and many other groups that have come together are potential partners in creating knowledge to enhance the welfare of their own communities and society at large.
Complex Authority Structures
Article 9.5 Where alternatives to securing the agreement of formal leadership are proposed for research on First Nations, Inuit or Métis lands or in organizational communities, researchers should engage community processes and document measures taken, to enable the research ethics boards (REBs) to review the proposal with due consideration of complex community authority structures.
Application Research ethics boards should not assume that approval of a project by formal leaders is the only avenue for endorsing a project. In some communities and some domains of knowledge, authority to permit and monitor research rests with knowledge keepers designated by custom rather than election or appointment. In First Nations settings, a confederacy council spanning several communities may be recognized as having authority over its members’ traditional knowledge. In an Inuit community, the hamlet council, an Elders’ circle and a Hunters and Trappers society may have overlapping responsibility and expertise with respect to the knowledge being sought. Métis Elders dedicated to conserving Michif language may assert their autonomy from political leaders but choose to collaborate with educational or cultural agencies.
The preferred course is to secure approval for research from both formal leaders of a community and customary authority. This is especially important for outsiders to communities, whose presence or intentions might be challenged. Researchers should engage community processes, including the guidance of moral authorities such as Elders, to avert potential conflict. These measures should be documented to assist the REB in considering the community engagement processes proposed (see Article 9.10, “Requirement to Advise REB on Plan for Community Engagement”).
Recognizing Diverse Interests Within Communities
Article 9.6 In engaging communities, researchers should ensure, to the extent possible, that they take into consideration the views of all relevant sectors, including communities of interest who may not have a voice in the formal leadership of a geographical or organizational community. Vulnerable groups or individuals may need or desire special measures to ensure their safety or inclusion.
Application Vulnerable or marginalized subgroups within communities should be not be deprived of opportunities to participate in guiding research affecting their welfare.Covert research or direct challenges to legitimate authority risk increasing participants’ vulnerability, deepening rifts within the community and actually impeding the advancement of social justice. Strategies that have proven effective to accommodate diversity include: advocacy by moral authorities in the community; special measures to protect the identity of participants in small communities; identifying research questions that include rather than divide interest groups; or expanding the coverage of a project to multiple communities where personal interests are less prominent. In some cases, the risks to participants and communities involved with or affected by the proposed research outweigh the benefits likely to be gained and the research should not be undertaken.
Article 9.7 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.
Application 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 (see Article 9.6) critical inquiry will require creative approaches to ensure that cultural norms are respected, that the safety of participants is protected and that the welfare of the larger community is not disrupted.
For example, the Sisters in Spirit project of the Native Women’s Association of Canada (NWAC) launched in 2005 for a five-year period illustrates research of national scope that incorporates a critical dimension. The project involves interviewing families of missing and murdered Aboriginal women in urban and rural settings, on and off First Nations territory. It examines, among other matters, the adequacy of public institutions and services, Aboriginal and non-Aboriginal, to protect the women’s well-being and support families in their efforts to deal with their losses. The objective is to effect policy change and improve the safety and well-being of Aboriginal women in Canada. NWAC has published its commitment to participatory research and the principles and practices that protect privacy and well-being of participants. The project builds on NWAC’s 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.
Respect for Community Customs and Codes of Practice
Article 9.8 Researchers have an obligation to become informed about and to respect the relevant customs and codes of research practice that apply in the particular community or communities affected by their research. Inconsistencies between community custom and this Policy should be identified and addressed, where possible, in advance of initiating the research.
Application First Nations, Inuit and Métis codes of research practice derive from laws and customs of predominantly oral cultures. While some rules may be in written form, their interpretation is dependent on experiential knowledge acquired through interactions in the community. An example is the strict limitation on making publicly available sacred knowledge which might be revealed within a trusting relationship. In academic culture, rules regarding limits on disclosure of information would reasonably be incorporated in a research protocol.
In Aboriginal communities, custom may restrict the observation, recording or reporting of ceremonies or certain performances and require approval of appropriate individuals. Article 10.3 addresses research involving observational studies, the requirement for research ethics review and the ethical implications associated with observational research approaches, which may infringe on free and informed consent and privacy.
Many First Nations communities across Canada have adopted an ethics code originally developed to govern practice in the First Nations Regional Health Survey. It asserts ownership, control, access and possession of research processes affecting participant communities and is generally referred to as OCAP. It addresses issues of privacy, intellectual property, data custody and secondary use of data, which are also covered later in this chapter. Researchers should consult with their own institutions to ensure that compliance with OCAP or other community-based ethics codes is consistent with institutional policies, particularly on issues of intellectual property.Where conflicts exist, they should be addressed and resolved prior to the commencement of the research. (See Article 9.18)
The obligation to respect community laws, customs and responsibilities and to engage the relevant community applies to First Nations, Inuit and Métis researchers conducting research in their own local or cultural communities, if they are also members of research institutions adhering to this Policy.First Nations, Inuit and Métis scholars attached to academic institutions as faculty members, students or research associates are increasingly engaged in research involving their own communities and sometimes their own family members. They are generally exempt from restrictions on physical access to territory or personal access to community members.
Life history and language research are examples of research areas where insider relationships and skills provide unique opportunities to extend the boundaries of knowledge. While it can be argued that recording the life history of an elderly relative is a family matter rather than a community matter, the potential impact of such research on the wider community, conflicts between the individualist norms of the academic environment and the norms of the community, and the possibility of unclear or mistaken assumptions on the part of participant and researcher make community engagement important. The relevant community to be engaged in such cases might be extended family members, peers of the participant with whom the researcher’s interpretations can be validated, or Elders knowledgeable about cultural rules governing disclosure of privileged information.
Institutional Ethics Review Required
Article 9.9 Ethics review by community research ethics boards (REBs) or other responsible bodies at the research site will not be a substitute for review by institutional REBs and will not exempt researchers affiliated with an institution from seeking REB approval at their institution, subject to Article 8.1.
Application Applying this Policy in a way that accommodates the diversity of First Nations, Inuit and Métis cultures and communities is complex. For example, the fit between institutional policies and community laws, customs and codes of research practice may be unclear, requiring researchers to adapt conventional practice or negotiate a resolution.
The presumption that community engagement is required in research involving Aboriginal participants is consistent with Article 8.4, which provides that research conducted outside the jurisdiction of the researcher’s institution “shall undergo prospective ethics review both by the REB at the Canadian institution under the auspices of which the research is being conducted and by the REB or similar body, where such exists, [at the collaborating institutions(s)] in the host research site.”
Article 8.1 permits review models for multi-site research that do not require separate ethics review by each site involved in a research project. In cases where the community is the direct recipient of funding and has constituted a local REB that is party to such an agreement with the researcher’s institution, review by the institution’s REB may not be required. (See Article 8.1 in Chapter 8, [“Multi-Jurisdictional Research”].)
In accordance with Article 8.4, communication between the institutional REB and the responsible agency in the community may assist in resolving inconsistencies between institutional policy and community laws, customs and codes of research practice. If a community ethics review is required in addition to the mandatory institutional REB review, reconciling differences may require re-submission to one or the other review body.
Researchers and REBs should recognize that ethics review by community bodies will often pursue purposes and apply criteria that differ from the provisions of this Policy. The express purpose of most Aboriginal community codes of research practice is to ensure relevance of research undertakings to community needs and priorities and respect for First Nations, Inuit and Métis identities, cultures and knowledge systems. While community codes of practice and research agreements typically share many of the goals of institutional policies, the approaches to achieving those goals may differ significantly. It is therefore inappropriate to insist on uniformity between community practices and institutional policies. For example, when researchers seek to interview Elders willing to share their knowledge according to traditional customs of consent, REBs should not impose language and processes that may be experienced as culturally inappropriate or awkward.
In cases where review of research on topics related to Aboriginal peoples is regularly required, the REB membership should be modified to ensure that relevant and competent knowledge and expertise in Aboriginal cultures are captured within its regular complement. For occasional review of Aboriginal research appointment of ad hoc advisors or delegation to a specialized or multi-institutional REB may be appropriate. ( See Articles 6.4, 6.5 in Chapter 6 [“Governance of Research Ethics”] and Article 8.1 in Chapter 8 [“Multi-Jurisdictional Research”].)
The membership of community review bodies of First Nations, Inuit or Métis communities 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. Researchers and participating Aboriginal communities should address how in those circumstances ethical safeguards of the community and its members are best achieved when multiple roles are assumed by the same person. (See Chapter 7 [“Conflict of Interests”].)
Requirement to Advise the Research Ethics Board on Plan for Community Engagement
Article 9.10 When proposing research expected to involve First Nations, Inuit or Métis participants, researchers shall advise their research ethics board (REB) how they have engaged or intend to engage the relevant community or, alternatively, present a rationale as to why an exception to the requirement is appropriate.
Application In order for REBs to consider whether the form of community engagement is appropriate, they will require evidence in the form of (a) a preliminary or formal research agreement between the researchers and the responsible body in the research site; (b) documentation of a written or oral decision to approve the proposed research in a group setting; (c) a written summary of advice received from a culturally informed advisory group or ad hoc committee, for example in an urban community of interest. Provision of a research agreement is particularly emphasized in health research funded by CIHR (see CIHR Guidelines for Health Research Involving Aboriginal People in Reference section at end of this chapter).
Where a researcher has an ongoing relationship with a community, a letter from formal or customary leaders in the relevant community may signal approval to proceed with the research.
Although researchers must offer the option of engagement, a community may choose to engage nominally or not at all, despite being willing to allow the research to proceed. A community may, for example, support a study carried out independent of community influence in order to use scientifically defensible results to validate a negotiating position. In instances where community engagement is not taken up, researchers must present to the REB the steps they took to invite and facilitate engagement by the community. Lack of engagement by communities may also be due to inadequate financial or human resources. Researchers should demonstrate what efforts they have made to assist in capacity-building to facilitate engagement.
Article 9.11 Where a community has formally engaged with a researcher or research team through a designated representative, the terms and undertakings of both the researcher and the community should be set out in a research agreement before participants are recruited.
Application Research agreements serve as a primary means of clarifying and confirming mutual expectations and, where appropriate, commitments between researchers and communities. The scope of the agreement will depend on the level of engagement which the community desires, and the availability of resources to support community participation.
At a minimum, the agreement should address the ethical protections that would apply in securing individual consent for a comparable project and should specify any commitments regarding collective community participation and decision-making, sharing of benefits and review and updating of the agreement. 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.
Where a community has adopted or adheres to a code of research practice the agreement may set out detailed responsibilities. In less formal circumstances, the agreement may be relatively brief and subject to clarification as the project unfolds. CIHR Guidelines for Health Research Involving Aboriginal People (2007) provide examples of elements that may be included in research agreements (see Reference section at the end of this chapter).
Research 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, confidentiality and intellectual property. 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. Researchers should check with their institutions regarding signing authority for research agreements that include undertakings beyond those normally included in a consent form.
Community agreement that a research project may proceed is not a substitute for securing the free and informed consent of individuals being recruited to participate in that project, in accordance with Chapter 3 (“Free and Informed Consent”).
Building relationships, clarifying the goals of a project and negotiating agreements requires substantial investment of time and resources on the part of the community and researcher. Development and participation costs incurred by the community and the researcher should be factored into proposals to the extent possible within funding guidelines.
Article 9.12 While community engagement is appropriate in any research that affects Aboriginal communities, researchers should consider applying a collaborative or participatory approach as appropriate to the nature of the research and the level of engagement desired by the community.
Application This Policy encourages collaborative research with First Nations, Inuit and Métis communities as a means of facilitating mutually respectful and productive relations.
Collaborative research is generally understood to involve respectful relationships among colleagues, each bringing distinct expertise to a project. Collaboration often involves one or other of the partners taking primary responsibility for certain aspects of the research, such as addressing sensitive issues in community relations or scientific analysis and interpretation of data.
Community-based research is research that takes place at community sites and involves collaboration between community agencies and scientific researchers. It often seeks to address a research topic of practical relevance to the community. The terms “community-based research” and “participatory research” are often used interchangeably or in combination.
Participatory research is a method that promotes research relevant to local concerns, action and social change, increased community skills, capacity building, sustainability, and knowledge translation. In its fullest expression, participatory research engages researchers and community members in an active partnership that shares decision-making throughout the research process: identifying the issue to be researched, developing the research design, collecting, analyzing, and interpreting the data, developing conclusions and disseminating results.
An outcome of collaborative research highly valued by communities is increased capacity to carry out autonomous research that can more readily be conducted in Aboriginal languages and oral modes. The exploration, articulation and application of Indigenous knowledge in the local community is thus advanced, potentially benefiting other communities through knowledge transfer.
Mutual Benefits in Collaborative Research
Article 9.13 Collaborative research should be relevant to community needs and priorities and should benefit the participating community as well as extend the boundaries of societal knowledge.
Application To benefit the participating community a research project should be relevant and have the potential to produce valued outcomes from the perspective of the community and its members.
Relevance and community benefit can take a number of forms depending on the type of research being conducted. For example, genetic research on diabetes in a First Nations community is unlikely to benefit the community in the short term, but collaboration may facilitate increased knowledge of the condition and change that improves health outcomes. Collaborative research can thus accommodate basic as well as applied research, short-term and long-term benefits. In another example, a study of housing and homelessness in an Inuit community was initiated at the request of the community. Using participatory research methods and social science tools, the nature, extent and consequences of the local housing shortage was documented, enabling the community to communicate its needs effectively to non-Inuit (Qallunaat) authorities. Training workshops provided employment and transferred skills to Inuit youth involved in data collection. The project provided field experience in community-based research for university student assistants and materials useful to other Inuit communities in subsequent research.
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. They also seek to share in the benefits of research activities in the form of direct research grants, release time for project personnel, overhead levies on shared projects and commercialization of research discoveries.
Strengthening Research Capacity
Article 9.14 Research projects should support the enhancement of the skills of community personnel in research methods, project management and ethical review and oversight.
Application To the degree possible, researchers should foster education and training of community members to enhance their participation in research projects. Employing Aboriginal research assistants and translators is already common practice in community-based projects. Extending skills transfer through a rational program of training will support collaboration with institutions and advance the capacity of communities to initiate and implement their own research.
Communities vary widely in the level of human and material resources they have available to collaborate with research initiatives. Small, remote communities and many urban communities of interest have limited organizational resources to advise or collaborate in research. The least organizationally developed communities are the most vulnerable to exploitation. Researchers, research ethics boards (REBs) and communities leaders should strive to protect the interests of such communities by undertaking research and supporting the enhancement of capacity to participate in research.
Funding programs that target the development of Aboriginal research and capacity building seek to generate significant research training opportunities for Aboriginal students, allowing researchers to include in their grant applications stipends for undergraduate, master’s degree or doctoral students or postdoctoral researchers, as appropriate, with priority given to Aboriginal people.
Recognition of the Role of Elders
Article 9.15 Researchers should engage the community in determining appropriate recognition for the unique advisory role of Elders in the design and execution of research and interpretation of findings in the context of cultural norms and traditional knowledge.
Application Recognition of Elders may include adherence to customary prescribed procedures to solicit their involvement – feasting, gift-giving, providing honoraria, acknowledging contributions by name or, as directed, withholding the Elder’s identity in reports and publications. 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.
Privacy and Confidentiality
Article 9.16 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 individual consent procedure.
Application Researchers and community partners should consider early in the design of the research how community codes of research practice fit with provisions for privacy and confidentiality set out in Chapter 5 (“Privacy and Confidentiality”). Where conflicts exist, they should be resolved in advance of starting the research.
In some First Nations communities, privacy and confidentiality of identifiable personal and community information may be affected by application of the principles of ownership, control, access and possession (OCAP) (see definition under Article 9.8). The Regional Health Survey administered by regional First Nations organizations has addressed 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.
Small Aboriginal communities are characterized by dense networks of relationships, with the result that de-identifying individual data is often not sufficient to mask identities, even when data are aggregated. Communities themselves have distinguishing characteristics, which in some cases have compromised efforts to disguise the site of research and led to the stigmatization of whole communities. Some Aboriginal research participants are reluctant to speak to interviewers from their own community because of privacy concerns.
On the other hand, in some social sciences and humanities research the significance of information is tied to the identity of the source and individual attribution, with consent, is appropriate. Communities partnering in research may wish to be acknowledged for their contribution.
Privacy protections in research are evolving. Respect for and accommodation of First Nations, Métis and Inuit priorities on joint ownership of the products of research and maintaining access to data for community use should guide research practices, with appropriate deference to federal, provincial and territorial legislation on privacy.
Interpretation and Dissemination of Research Results
Article 9.17 Researchers should afford community representatives engaged in collaborative research an opportunity to react and respond to research findings before the completion of the final report, in the final report, and in all relevant publications resulting from the research.
Application 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 about interpretation arises between researchers and the community and cannot be resolved, 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.
Final reports shall be made available to the community participating in the research. Researchers and communities should clarify the extent to which research findings will require translation, plain language summaries or oral presentations in order to make the research findings accessible to the community.
An Aboriginal community and those who participated in the research should have the option to decide how collective or individual contributions to the research project will be acknowledged and credited in the dissemination of results, for example at conferences and seminars.
Intellectual Property and Copyright
Article 9.18 In collaborative research, intellectual property rights and copyright should be discussed by researchers, communities and institutions in advance and assignment of rights should be specified in a research agreement as appropriate.
Application There is an ongoing international debate regarding misappropriation, commodification, and unfair or harmful commercial exploitation of Indigenous knowledge.
First Nation, Inuit and Métis laws and customs distinguish between knowledge that can be publicly disclosed, disclosed to a specific audience or disclosed under certain conditions. Researchers, institutions and communities may need to adopt a two-tiered approach, first to address issues regarding access to data and use or publication of findings, and second, to address issues related to commercial applications of the results from collaborative research. They should agree on what a researcher/student can use for publication. They should negotiate separately all intellectual property and copyright issues linked to commercial outcomes (if any) from the research.
The products of collaborative research should be regarded as the intellectual property of both the researcher and the participating individuals or community, whichever is appropriate. The terms on which intellectual property and copyright are shared should be specified in a research agreement and may include limits to the disclosure of privileged information, the right to review reports and publications, attribution of authorship, intellectual property protection and retention of copyright. Arrangements for release of, or access to results can include open or restricted dissemination, joint ownership or assignment of ownership. Researchers should consult the research office of their institution before entering into a research agreement that includes copyright and intellectual property provisions. Researchers should consult the program literature or policies on intellectual property and copyright adopted by the federal research agencies NSERC, SSHRC and CIHR available on their websites.
It is widely recognized that some Indigenous knowledge may have commercial applications and lead to the development of marketable products, for example, traditional plant medicines. If the proposed research has explicit commercial objectives or direct or indirect links to the commercial sector, these should be clearly communicated to all parties as a requirement of free and informed consent.
The researcher and the community should openly discuss potential secondary use of traditional and sacred knowledge, and the research agreement should address how best to protect this knowledge.
Prospective Collection of Human Biological Material Involving Aboriginal Peoples
Article 9.19 As part of community engagement, researchers shall address and specify in the research agreement, where such exists, the rights and proprietary interests of individuals and communities in human biological materials and data to be collected, stored and used in the course of the research.
Application Canadian law does not provide clear recognition of property rights in human biological materials. Researchers should be aware, however, that Aboriginal people and communities express proprietary interests in data and biological samples collected for research. Consistent with Chapter 12, and Article 9.11 of this policy, researchers and communities should address and specify in the research agreement the objectives for collection, use and storage of human biological materials as well as the roles and responsibilities regarding custodianship of the data and the samples, any future use of these samples and associated data, including material transfer agreements to third parties and any subsequent requirements for community engagement.
Individuals who are invited to donate biological materials shall give their free and informed consent in accordance with Articles 12.1 and 12.2.
Consent and Secondary Use of Data or Human Biological Materials Originating from Aboriginal Peoples
Article 9.20 Secondary use of data that is identifiable as originating from a specific community, or a segment of the Aboriginal community at large, requires research ethics board (REB) review and may warrant re-consent from individuals, new or renewed agreement of communities, or seeking culturally informed advice about protection of cultural heritage or representations of Indigenous knowledge or society.
Application Misrepresentation of Aboriginal peoples, unauthorized use of data or tissues, 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 unauthorized genetic research. In addition, there are fears in First Nation communities that access to health data for purposes other than treatment will facilitate unauthorized government surveillance.
The privacy of individual participants in research is normally protected by removing information that would identify them personally. De-identified data are added to a data pool and are available for analysis and sometimes for secondary use. 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 REB review.
As discussed in Chapter 5, 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 impracticable 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 in Chapter 3 [“Free and Informed Consent”]).
Secondary use of data identifiable as originating from Aboriginal participants or communities shall be subject to REB review to avoid harms ensuing from inadvertent identification of communities, potential misuse of cultural heritage, or misrepresentation of Indigenous knowledge when interpretation of data is no longer guided by community engagement. 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.
A common example of unauthorized secondary use of data that areidentifiable as originating from a specific community is the practice of accessing traditional plant knowledge from the published literature to inform commercial development ofproducts. In fields such as ethnobotany there is a significant amount of traditional knowledge that was published without the awareness or consent of the original knowledge holders. Researchers should seek culturally informed advice before use of such data to determine if harms may result and if benefit-sharing should be explored with the original source community.
Article 9.21 Researchers who propose research involving secondary use of human biological materials originating from Aboriginal peoples shall:
(a) obtain research ethics board (REB) approval for the proposed research; and
(b) engage the community from which the biological materials originated in accordance with any existing research
agreement or the REB’s direction; and
(c) obtain consent of individuals from whom the biological materials originated unless:
(i) an existing research agreement permits secondary use based on individual consent given at the time biological materials were initially collected; or
(ii) the REB and the community agree that individual consent may be waived in accordance with Articles 12.5 or 12.6.
Application Where the researcher can satisfy the REB that secondary use is consistent with an existing research agreement, the REB may require that the researcher engage the community from which the biological materials and associated identifiable information originate in accordance with the terms of the research agreement. New individual consent to secondary use is not required where the original consent authorized future use. Where secondary use has not been specified in the research agreement and authorized by the original individual consent, researchers shall engage the community from which the biological materials and identifiable information originate prior to initiating secondary use. Individual consent for the secondary use is required unless the REB and the community agree that Articles 12.4 or 12.5 applies.