Scope
Note: This Procedure is consistent with the Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans (“TCPS 2 (2022)”), Chapter 9 – Research Involving the First Nations, Inuit and Métis Peoples of Canada.
This procedure forms part of JIBC’s Research Involving Human Participants Ethics Policy (the “Policy”) and should be followed and applied in relation to the free and informed consent of participants in research at JIBC under the Policy. Terms not otherwise defined in this procedure are as defined in the Policy.
Purpose
This procedure acknowledges that the landscape of research with Indigenous peoples is rapidly changing. It is designed to provide a framework for the ethical conduct of research with Indigenous peoples. It is not intended to override or replace ethical guidance offered by Indigenous peoples themselves. This procedure ensures that research with Indigenous peoples is premised on respectful relationships.
Procedural Guiding Principles
Requirement of Community Engagement in Indigenous Research (TCPS 2 (2022), Chapter 9, Article 9.1)
Where the research is likely to affect the welfare of an Indigenous community, or communities, to which prospective participants belong, researchers shall seek engagement with the relevant community. The conditions under which engagement is required include, but are not limited to:
- research conducted on First Nations, Inuit or Métis lands;
- recruitment criteria that include Indigenous identity as a factor for the entire study or for a subgroup in the study;
- research that seeks input from participants regarding a community’s cultural heritage, artefacts, Traditional Knowledge or unique characteristics;
- research in which Indigenous identity or membership in an Indigenous community is used as a variable for the purpose of analysis of the research data; and
- interpretation of research results that will refer to Indigenous communities, peoples, language, history or cultures.
Nature and Extent of Community Engagement (TCPS 2 (2022), Chapter 9, 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.
Respect for First Nations, Inuit and Métis Governing Authorities (TCPS 2 (2022), Chapter 9, Article 9.3)
Where a proposed research project is to be conducted on lands under the jurisdiction of a First Nations, Inuit or Métis authority, researchers shall seek the engagement of leaders of the community.
Research ethics review by the institutional Research Ethics Board (“REB”) and any responsible community body recognized by the First Nations, Inuit or Métis authority is required in advance of recruiting and seeking and obtaining consent of individuals.
Engagement with Organizations and Communities of Interest (TCPS 2 (2022), Chapter 9, Article 9.4)
For the purposes of community engagement and collaboration in research undertakings, researchers and REBs shall recognize Indigenous organizations, including First Nations, Inuit and Métis representative bodies, and service organizations and communities of interest, as communities. They shall also recognize these groups through representation of their members on ethical review and oversight of projects, where appropriate.
Complex Authority Structures (TCPS 2 (2022), Chapter 9, 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 REB to review the proposal with due consideration of complex community authority structures.
Recognizing Diverse Interests within Communities (TCPS 2 (2022), Chapter 9, Article 9.6)
In engaging territorial or organizational communities, researchers should ensure, to the extent possible, that they take into consideration the views of all relevant sectors – including individuals and subgroups who may not have a voice in the formal leadership. Groups or individuals whose circumstances make them vulnerable may need or desire special measures to ensure their safety in the context of a specific research project. Those who have been excluded from participation in the past may need special measures to ensure their inclusion in research.
Critical Inquiry (TCPS 2 (2022), Chapter 9, Article 9.7)
Research with Indigenous peoples that critically examines the conduct of public institutions, First Nations, Inuit and Métis governments, institutions or organizations or persons exercising authority over First Nations, Inuit or Métis individuals may be conducted ethically, notwithstanding the usual requirement of engaging community leaders.
Respect for the Community Customs and Codes of Practice (TCPS 2 (2022), Chapter 9, 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 in advance of initiating the research, or as they arise.
Institutional Research Ethics Review Required (TCPS 2 (2022), Chapter 9, Article 9.9)
Research ethics review by community REBs or other responsible bodies at the research site will not be a substitute for research ethics 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. Prospective research and secondary use of data and human biological materials for research purposes is subject to research ethics review.
Requirement to Advise the Research Ethics Board on a Plan for Community Engagement (TCPS 2 (2022), Chapter 9, Article 9.10)
When proposing research expected to involve First Nations, Inuit or Métis participants, researchers shall advise their REBs how they have engaged, or intend to engage, the relevant community. Alternatively, researchers may seek REB approval for an exception to the requirement for community engagement, on the basis of an acceptable rationale.
Research Agreements (TCPS 2 (2022), Chapter 9, 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.
Collaborative Research (TCPS 2 (2022), Chapter 9, Article 9.12)
As part of the community engagement process, researchers and communities should consider applying a collaborative and participatory approach as appropriate to the nature of the research, and the level of ongoing engagement desired by the community.
Mutual Benefits in Research (TCPS 2 (2022), Chapter 9, Article 9.13)
Where the form of community engagement and the nature of the research make it possible, research should be relevant to community needs and priorities. The research should benefit the participating community (e.g., training, local hiring, recognition of contributors, return of results), as well as extend the boundaries of knowledge.
Strengthening Research Capacity (TCPS 2 (2022), Chapter 9, Article 9.14)
Research projects should support capacity building through enhancement of the skills of community personnel in research methods, project management, and ethical review and oversight.
Recognition of the Role of Elders and Other Knowledge Holders (TCPS 2 (2022), Chapter 9, Article 9.15)
Researchers should engage the community in identifying Elders or other recognized knowledge holders to participate in the design and execution of research, and the interpretation of findings in the context of cultural norms and traditional knowledge. Community advice should also be sought to determine appropriate recognition for the unique advisory role fulfilled by these persons.
Privacy and Confidentiality (TCPS 2 (2022), Chapter 9, Article 9.16)
Researchers and community partners shall address privacy and confidentiality for communities and individuals early on in the community engagement process. Research agreements, where they exist, shall address whether part or all of the personal information related to the research will be disclosed to community partners. Researchers shall not disclose personal information to community partners without the participant’s consent, as set out in JIBC Procedure 3404-008 Privacy and Confidentiality.
Interpretation and Dissemination of Research Results (TCPS 2 (2022), Chapter 9, Article 9.17)
Researchers should afford community representatives engaged in collaborative research an opportunity to participate in the interpretation of the data and the review of research findings before the completion of the final report, and before finalizing all relevant publications resulting from the research.
Intellectual Property Related to Research (TCPS 2 (2022), Chapter 9, Article 9.18)
In collaborative research, intellectual property rights should be discussed by researchers, communities and institutions. The assignment of rights, or the grant of licences and interests in material that may flow from the research, should be specified in a research agreement (as appropriate) before the research is conducted.
Collection of Human Biological Materials with First Nations, Inuit and/or Métis Peoples (TCPS 2 (2022), Chapter 9, Article 9.19)
As part of community engagement, researchers shall address and specify in the research agreement the rights and proprietary interests of individuals and communities, to the extent such exist, in human biological materials and associated data to be collected, stored and used in the course of the research.
Secondary Use of Information or Human Biological Materials Identifiable as Originating from First Nations, Inuit and/or Métis Communities or Peoples (TCPS 2 (2022), Chapter 9, Articles 9.20, 9.21, and 9.22)
Secondary use of data and human biological material identifiable as originating from an Indigenous community or peoples is subject to REB review.
Researchers shall engage the community from which the data or human biological materials and associated identifiable information originate, prior to initiating secondary use where:
- secondary use has not been addressed in a research agreement and has not been authorized by the participants in their original individual consent; or
- there is no research agreement; and
- the data are not publicly available or legally accessible.
Individual consent for the secondary use of identifiable information is required unless it agrees with JIBC Procedure 3404-008 Privacy and Confidentiality.
Where research relies only on publicly available information that is protected by law, or on information that is in the public domain with no expectation of privacy, community engagement is not required. Where the information can be identified as originating from a specific community or a segment of the Indigenous community at large, seeking culturally informed advice may assist in identifying risks and potential benefits for the source community.
REB review is required where the researcher seeks data linkage of two or more anonymous data sets or data associated with human biological materials and there is a reasonable prospect that this could generate information identifiable as originating from a specific Indigenous community or a segment of the Indigenous community at large.
Related Policies and Procedures
- 3404 Research Involving Human Participants Ethics Policy
- 3404-008 Privacy and Confidentiality Procedure