Why is this indicator important to First Nations, Inuit and Métis?
Ethical research involving First Nations, Inuit and Métis Peoples involves building reciprocal, trusting relationships as a platform for respectful collaboration. Sound engagement with First Nations, Inuit and Métis communities is critical to ensuring community-driven, self-determined research is possible.
First Nations, Inuit and Métis Peoples have often been subject to research that is driven by mainstream, western systems of knowledge and research methods that are informed by a colonial lens. Such methods and approaches often focus narrowly on deficits and neglect contextualization as well as First Nations, Inuit and Métis ways of knowing and strengths.
Ethical First Nations, Inuit and Métis-led cancer research can mitigate harm by providing First Nations, Inuit and Métis individuals and communities the opportunity to shape the research being undertaken, participate in designing all aspects of the research project, and to interpret, draw meaning, and share findings in ways that are helpful and appropriate to community needs.
Ethically-sound research also involves recognizing communities as key decision-makers and owners of how knowledge should be translated and how information should be received and shared at the end of a research project. How research findings, data and knowledge are handled and shared is a process that requires careful thought and cultural sensitivity.
First Nations, Inuit and Métis Peoples have ethical research guidelines to inform how respective data should be collected, used, and stored. Some examples of these guidelines and frameworks include:
- The Nunatsiavut Research Centre’s Government Research Advisory Committee (Nunatsiavut Government Research Advisory Committee – Nunatsiavut Research Centre)
- The Manitoulin Anishinabek Research Review Committee (Research Ethics (noojmowin-teg.ca))
- The Six Nations Research Ethics Policy (Conducting Research at Six Nations (Approved 04 2014))
- The CARE Principles for Indigenous Data Governance – Global Indigenous Data Alliance (gida-global.org)
- Inuit Qaujimajatuqangit Principles – Guidelines for Research Involving Inuit (2010)
- Manitoba Métis principles of ownership, control, access and stewardship – Principles of Ethical Métis Research (2011)
- The First Nations principles of Ownership, Control, Access and Possession (OCAP®) (The First Nations Principles of OCAP® – The First Nations Information Governance Centre (fnigc.ca))
How does this affect care and outcomes?
Ethically-sound research and resultant findings can provide valuable evidence to inform community-led efforts to improve First Nations, Inuit and Métis access, experiences, and outcomes in cancer prevention and care.
Specifically, it can contribute to building capacity, creating community-responsive, culturally appropriate policies and programs, and shape meaningful systemic improvements which can lead to improved patient experience, care and outcomes through the respectful inclusion of First Nations, Inuit and Métis community voices.
Towards health equity
Ethical research supports health equity by ensuring research is conducted in a way that is fair for all people involved. This involves recognizing and respecting the needs of everyone in the research process, including participants, researchers, and communities.
Establishing sound and ethical research and representation aids in rebuilding the relationship between researchers and First Nations, Inuit and Métis communities.
What this would mean for people in Canada
Ethical and equitable research activities and outcomes will lead to the highest possible standard of health for all people in Canada especially for those who are at greater risk of poorer health due to systemic barriers.