Improving Health Research Engagement with First Nations, Metis, and Indigenous (FNMI) Communities

Introduction

First Nations, Metis, and Indigenous (FNMI) peoples have historically faced significant challenges and injustices in health research. From unethical clinical trials in the 1970s to recent allegations of non-consensual research scans, these communities have been subjected to practices that have eroded trust in the government, healthcare system, and health research. Moving forward, it is crucial to engage FNMI communities in health research in a manner that is respectful, culturally appropriate, and meaningful.

Historical Context and Current Challenges

In the 1970s, Inuit communities were subjected to clinical trials without informed consent, such as skin transplants from one Inuit person to another (Clark, 2023). More recently, allegations have surfaced from the East coast about Indigenous community members being subjected to research scans without their consent (Rhodes, 2021). In Saskatchewan, Indigenous children were involved in a study where they were told that brainwave training could make them smarter, happier, and enable them to overcome trauma. The scientist even claimed it could allow them to levitate, walk on water, and visit angels. These children were placed in dark rooms, alone for long stretches of time (Leo, 2024). These instances have left FNMI communities with a deep-seated distrust of health research.

The Importance of Critical Community Engagement

Engaging FNMI communities in health research is essential, but it must be done critically. Uncritical engagement can lead to community fatigue, undermine their ability to be effectively involved, and restrict their oversight and control over the research (Brunger & Wall, 2016). Building relationships among academic institutions, regulatory bodies, and FNMI communities is necessary to ensure culturally appropriate and meaningful input.

Efforts to Improve Engagement

In Alberta, Dr. Wayne Clark, the Executive Director of the Indigenous Health Program at the University of Alberta, co-leads the Accelerated Clinical Trials (ACT) Canadian Consortium as an Indigenous Health Champion. The Consortium aims to create a method for engaging FNMI people about their distinct and diverse needs in clinical research. Dr. Clark's work emphasizes the importance of culturally appropriate engagement and meaningful input from FNMI communities (Population Health Research Institute, 2023).

Addressing Deficit-Based Communications

Health research often tends to be deficit-based, focusing on the absence of health markers or the presence of disease. This approach can reinforce stereotypes and marginalize Indigenous peoples by overlooking the underlying causes of health deficits, such as colonization, westernization, and intergenerational trauma (Hyett, et.al., 2019). It is crucial to shift the narrative to one that acknowledges these complex issues and works towards solutions that benefit FNMI communities.

Regulatory Oversight and Best Practices

From a regulatory oversight perspective, tools and regulations are in place to assist in including Indigenous communities in research. For example, the IRISS research platform at the University of Calgary includes a checkbox for study teams to indicate if they plan to involve Indigenous participants. If they do, the application undergoes additional review by Indigenous Community Members who provide valuable feedback based on their lived experience (University of Calgary, 2025).

The Tri Council Policy Statement 2 (TCPS2) provides a framework for involving Indigenous peoples in research. It emphasizes the need for research approaches that reflect the world view of Indigenous people and benefit them, aiming to rebuild trust and facilitate the involvement of Indigenous researchers (Government of Canada, 2018).

Moving Forward

To reduce bias and stereotypes in healthcare, increased exposure to Indigenous community members and recognizing each person as an individual is essential. Providing an environment that rebuilds trust and moves towards an equitable healthcare system is crucial. Efforts to engage FNMI communities in health research must be respectful, culturally appropriate, and meaningful to them.

Conclusion

Engaging FNMI communities in health research requires a critical and respectful approach that acknowledges historical injustices and works towards rebuilding trust. By implementing best practices, involving Indigenous researchers, and shifting the narrative away from deficit-based communications, we can move towards a more equitable healthcare system that serves FNMI communities better.

References

Brunger, F., & Wall, D. (2016). What do they really mean by partnerships? Questioning the unquestionable good in ethics guidelines promoting community engagement in Indigenous health research. Qualitative Health Research, 26(13), 1862-1877. https://doi.org/10.1177/1049732316649158

Clark, W. (2022, April 19). Advancing Indigenous medical education [Video]. University of Alberta. https://www.ualberta.ca/en/medicine/about/socialaccountability/globalhealth/rounds/wayne-clark.html

Clark, W. (2023, September 6). Indigenous health research inclusion [Slide deck]. University of Alberta, shared with permission.

Government of Canada. (2018). Tri-Council Policy Statement: Ethical conduct for research involving humans – Chapter 9: Research involving the First Nations, Inuit and Métis Peoples of Canada. Government of Canada. https://ethics.gc.ca/eng/tcps2-eptc2_2018_chapter9-chapitre9.html

Hyett, S., Gabel, C., Marjerrison, S. & Schwartz, L. (2019). Deficit-Based Indigenous Health Research and the Stereotyping of Indigenous Peoples. Canadian Journal of Bioethics / Revue canadienne de bioéthique, 2(2), 102–109. https://doi.org/10.7202/1065690ar

Leo, G. (2024, December 2). 'No consequences' for violating human rights in privately funded research in Canada, says ethics expert. CBC News. Retrieved from https://www.cbc.ca/news/canada/saskatchewan/ethics-research-canada-privately-funded-1.7393063

Population Health Research Institute. (2023, January 20). Dr. Wayne Clark, University of Alberta, on Accelerating Clinical Trials (ACT) Canada consortium [Video]. YouTube. https://www.youtube.com/watch?v=3Ym6hLk3fGU

Rhodes, B. (2021, December 13). Potential class-action lawsuit pits Indigenous community against Halifax researchers. CBC News. Retrieved from https://www.cbc.ca/news/canada/nova-scotia/possible-class-action-indigenous-community-dal-researchers-1.6281122

University of Calgary. (2025). IRISS. [Platform]. https://research.ucalgary.ca/iriss/iriss