Research With Indigenous Peoples

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Research studies focused on Indigenous Peoples and communities have a long and troubling past fraught with examples of unethical approaches to research by settler scientists and scholars (Dalton, 2002; Mosby, 2013; Garrison, & Cho, 2013). Historically, an extractive or helicopter approach to research was used in which experts from government agencies or educational institutions traveled to Indigenous communities to extract information or samples from research subjects and then left – in many instances never returning to the community to provide results from the research or use the knowledge gained to benefit the community (Santos, 2008; Bharadwaj, 2014). 

In the wake of such approaches and their numerous (and in many cases profoundly harmful) consequences, guidelines and principles have since been developed that instead emphasize the importance of collaborative approaches to research with Indigenous Peoples and include best practice recommendations for data collection and governance. A few examples are:

For research with Indigenous youth in particular, see:

Researchers at the University of Waterloo planning to work with Indigenous communities must strive to incorporate best practices into their studies right from the proposal stages of their projects through to dissemination of the research findings. The Office of Research Ethics and the University of Waterloo’s Research Ethics Boards (REBs) recognize that the incorporation of best practices may look different based on the nature and context of each study. While diverse in their languages, cultural traditions and histories, First Nations, Inuit and Métis communities do have some core values in common, such as reciprocity – which is the “obligation to give something back in return for gifts received” – and is viewed as the “necessary basis for relationships that can benefit both Indigenous and research communities” (TCPS2, 2018, Chapter 9).

The following general guidance from the TCPS2 (2018) is intended to highlight important ethical considerations for the design of research studies involving First Nations, Inuit and Métis Peoples and lands.

Awareness of Community Customs and Practices

While ethics clearance must be obtained prior to formally recruiting participants, collecting and/or analyzing the data, research ethics review is "not required for the initial exploratory phase, which is intended to establish research partnerships or to inform the design of a research proposal, and may involve contact with individuals or communities” (TCPS2, 2018, Article 6.11).  Therefore, prior to undertaking research with an Indigenous community, researchers have an obligation to become knowledgeable about the community’s customs and practices, particularly as they relate to the conduct of research. For instance, some communities may have their own formal or informal research review processes that a research team must adhere to in addition to their own institutional REB review. In other cases, “custom may restrict the observation, recording, or reporting of ceremonies or certain performances or require approval from appropriate individuals” (TCPS2, 2018, Article 9.8). Furthermore, the adoption or adaptation of the principles of OCAP® within a community will most certainly impact the design of a research study and should be addressed at the outset of a research partnership.

When applying for research ethics clearance, the research team must be able to clearly demonstrate an awareness of these types of community preferences and/or requirements within the research ethics application whenever applicable. As noted in TCPS2 Article 9.8, researchers should consult with their REB to identify any instances where inconsistencies could arise between institutional policies and community customs; if there are such instances, they should be addressed prior to beginning the research or once they are identified.

Community Engagement

Engaging in a meaningful way with community partners is critical and should be done throughout the planning stages of the research, as well as during data collection, analysis, and application of study results. Doing so marks an important step forward and “represents an entry point to ‘decolonising methodologies’, which requires a shift of typical power from the researcher to the community, and prioritizing community needs rather than researcher interests” (Lin et al., 2020, p. 2). When considering plans for engagement, researchers should keep in mind that the term ‘community’ refers to any group with a shared identity or interest that has the capacity to act or express itself as a collective, and may be territorial, organizational, or a community of interest. TCPS2 (2018) Articles 9.1 and 9.2 provide important information for researchers regarding the requirement for community engagement, such as, “when a research study is likely to affect the welfare of an Indigenous community, or communities, to which prospective participants belong, researchers must seek engagement with the relevant community”. A few additional key points from these articles are summarized below:

  • Conditions under which engagement is required include but are not limited to:
    • Research conducted on First Nations, Inuit or Métis lands
    • Recruitment criteria includes Indigenous identity as a factor (for entire study or subgroup)
    • Input will be sought from participants about their community’s cultural heritage, artefacts, traditional knowledge or unique characteristics
    • Indigenous identity or membership in an Indigenous community will be used as a variable for analysis
    • Interpretation of study results will refer to Indigenous communities, peoples, language, history or culture
  • The nature and extent of the engagement must be jointly decided upon by the relevant community and the research team and appropriately reflect community characteristics as well as the type of research to be conducted
  • Research projects that incidentally involve a small number of Indigenous individuals but do not intend to collect Indigenous-specific data or report on characteristics of Indigenous people do not require community engagement; however, culturally appropriate assistance may still be warranted if Indigenous individuals self-identify during the collection of primary data

Researchers should refer to TCPS2 (2018) Article 9.2 for examples of what community engagement may look like in various contexts. Importantly, consent must still be sought from individual participants, even when approval from formal community leadership has been received. Moreover, as stated in TCPS2 (2018) Article 3.3, informed consent should be viewed by researchers as an ongoing process whereby consent is “maintained throughout the research project”.

TCPS2 (2018) Article 9.10 describes the requirement to outline for the REB how the research team has engaged, or plans to engage, with the relevant community. Informing the REB of these details facilitates the ethics review and assists the REB with understanding the appropriate level of engagement expected by the community. Researchers must provide the REB with evidence of one or more of the following:

(a) a preliminary or formal research agreement between the researcher and the responsible body at the research site (e.g., community leadership, band council etc.);

(b) a written decision or documentation of an oral decision made in a group setting to approve the proposed research or to decline further participation (e.g., letter of support); or

(c) a written summary of advice received from a culturally informed advisory group or ad hoc committee (i.e., a group of individuals who are representative of the participant sample).

In cases where engagement with the community will not be sought (e.g., due to the nature of the research or community context), researchers must provide an acceptable rationale explaining why in their ethics application.

Capacity Building

Limited resources (financial or human) or structural barriers may impact a community’s ability to engage in research. For instance, “small, remote communities and many urban communities of interest have limited organizational resources to advise or collaborate in research” (TCPS2, 2018, Article 9.14). Whenever possible, research studies should be designed to support capacity building. A truly collaborative approach to research will endeavor to provide for “reciprocal learning and for transfer of skills and knowledge between the community and the researcher” (TCPS2, 2018, Article 9.14).  Community capacity building may take various forms. Examples include but are not limited to:

  • Hiring research team members from the community (e.g., research coordinators, research assistants or translators etc.)
  • Providing programs of training to actively support collaboration and skill transfer

Employing local community members to assist with or lead data collection also helps to ensure data is collected in culturally appropriate ways (Lin et al., 2020). Moreover, these types of collaborative approaches may assist with increasing community capacity to initiate and implement their own research (TCPS2, 2018, Article 9.14).

Mutual Benefits

When the nature of the research and form of engagement allow, the research should be mutually beneficial to the community and the research team. Mutually beneficial research objectives align with the concept of reciprocity and help to facilitate a balance of power between the research team and the collaborating Indigenous community (Kirkness & Barnhardt, 1991). TCPS2 (2018) Article 9.13 provides further guidance on mutual benefits in research. Some examples of the various ways research may result in benefits to a community include:

  • Recognition of community contributions
  • Co-authorship
  • Return/utilization of results to address urgent issues
  • Direct research grants
  • Release time for project personnel
  • Overhead levies on shared projects
  • Commercialization of research findings

To benefit the community, the research study should have the potential to produce valued outcomes from the perspective of the community and its members. Researchers must therefore invest time in understanding community interests and needs so that the research can be collaboratively designed in such a way that is directly relevant to community priorities. Importantly, the time required to achieve this may be difficult to accommodate in student level research and timelines. Students proposing to conduct research with Indigenous communities may require mentorship by experienced researchers who are able to introduce students to communities and supervise their ethical practice (TCPS2, 2018, Article 9.14).

For examples of community driven approaches to research, please see:

References

Bharadwaj., A. (2014).  Framework for Building Research Partnerships with First Nations Communities. Environmental Health Insights, 8, 15–25. https://doi.org/10.4137/EHI.S10869

Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, & Social Sciences and Humanities Research Council. (2018). Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2). Retrieved from https://ethics.gc.ca/eng/policy-politique_tcps2-eptc2_2018.html

Dalton, R. (2002, November 14). Tribe blasts 'exploitation' of blood samples. Nature, 420, 111. https://doi.org/10.1038/420111a

Garrison, N. A., & Cho, M. K. (2013). Awareness and Acceptable Practices: IRB and Researcher Reflections on the Havasupai Lawsuit. AJOB primary research, 4(4), 55–63. https://doi.org/10.1080/21507716.2013.770104

Kirkness, V. J., & Barnhart, R. (1991). First Nations and Higher Education: The Four R's - Respect, Relevance, Reciprocity, Responsibility. Journal of American Indian Education, 30(3), 1-15. https://www.jstor.org/stable/24397980#metadata_info_tab_contents

Lin CY., Loyola-Sanchez, A., Boyling, E., & Barabe, C. (2020). Community engagement approaches for Indigenous health research: recommendations based on an integrative review. BMJ Open, 10(11), e039736. doi:10.1136/bmjopen-2020-039736  

Mosby, I. (2013). Administering Colonial Science: Nutrition Research and Human Biomedical Experimentation in Aboriginal Communities and Residential Schools, 1942–1952. Histoire sociale/Social History 46(1), 145-172. doi:10.1353/his.2013.0015.

Santos, L. (2008). Genetic Research in Native Communities. Progress in Community Health Partnerships: Research, Education, and Action 2(4), 321-327. doi:10.1353/cpr.0.0046.

Education/Training

The First Nations Principles of OCAP® – First Nations Information Governance Centre

Understanding the First Nations Principles of OCAP®: Our Road Map to Information Governance - First Nations Information Governance Centre

Indigenous Canada – University of Alberta Massive Open Online Course

Indigenous Community Research Partnerships – Queen’s University Online Open Education Training Resource

Working In Good Ways: A Framework and Resources for Indigenous Community Engagement – University of Manitoba

Resources for Research Studies Involving Indigenous Peoples

Guidelines and Policies

Chapter 9: Research Involving the First Nations, Inuit and Métis Peoples of Canada – Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (TCPS2 2018)

Research Licenses – Conducting Research in Northern Canada

Guidelines for Research Involving Indigenous Peoples in Canada – Toronto Metropolitan University (Formerly Ryerson University)

A Guide to Build Cultural Awareness – SAMHSA

First Peoples: A Guide for Newcomers – City of Vancouver

Ethical Principles for the Conduct of Research in the North - Association of Canadian Universities for Northern Studies

Indigenous Research

Setting New Directions to Support Indigenous Research and Research Training in Canada – Government of Canada

Building the Foundation – First Progress Report: 2020-21 – Government of Canada

Indigenous Research at Memorial – Memorial University

Indigenous Research Agreement Example - Memorial University

Indigenous Research - Social Sciences and Humanities Research Council (SSHRC)

Indigenous Health Research – Canadian Institutes of Health Research (CIHR)

Indigenous Research Protection Act – Indigenous Peoples Council on Biocolonialism

For Information

Resources & Allyship – Office of Indigenous Relations, University of Waterloo

94 Calls to Action - Truth and Reconciliation Commission of Canada

United Nations Declaration on the Rights of Indigenous Peoples – United Nations

Respectful Relationship Building – Reconciliation Australia

Decolonization is for everyone - Nikki Sanchez - TEDx Talks

First Nations and Higher Education: The Four R’s — Respect, Relevance, Reciprocity, Responsibility - V.J. Kirkness and R. Barnhardt (1991)

Guidelines for students working with the Six Nations of the Grand River - McMaster University Department of Linguistics and Languages (2018)

Need Help?

Need help with the ethics review process or interpreting the TCPS2? Contact:  Research Ethics

Looking to discuss your proposed research with a Research Equity Advisor? Contact:  Research Equity