Articulating the Imperative

Indigenous Peoples and Communities and Clinical Trial Research

The current "under-representation" of Indigenous Peoples in clinical trials in the present context arises from the complex history and ongoing legacy of scientific colonialism that includes:

• Painful, invasive, and unethical clinical trials conducted on Indigenous peoples with limited or no informed consent.

• The ongoing biopiracy of Indigenous knowledges.

• The conflicting tension over data sovereignty within a western legal framework (i.e., how are the rights and principles of Indigenous peoples (i.e., OCAP, UNDRIP) respected and upheld in a judicial ecosystem that privileges common law understandings of ownership versus Indigenous rights under international declaration?)

• Clinical trial interventions centred almost exclusively on behavioural change among Indigenous populations as opposed to rehabilitation or drug interventions, and

• Data collection methods and community engagement methodologies that are incongruent with Indigenous epistemologies and that contradict or undermine Indigenous principles and values.

The present ecosystem of clinical trial research in Canada, in this regard, continues to be shaped by the unreconciled settler-colonial relationship that has yet to fully consider, understand, and redress the known barriers to safe, respectful, meaningful, and equitable participation and self-determination of health priorities in clinical trial research by Indigenous Peoples. As a result, limited progress has been made with respect to:

• understanding the distinct and unique health priorities of First Nation, Métis, and Inuit populations in Canada relative to clinical trials.

• understanding the contributing factors in the lived experiences (i.e., colonialism) and socio-economic contexts (imposed poverty) among Indigenous Peoples that lead to the disproportionately poorer health outcomes and higher incidence of mortality.

• Understanding wise practices as to how best to facilitate improved outcomes in the therapeutic interventions designed to be responsive to the specific needs of Indigenous peoples.

The under-representation of Indigenous Peoples in clinical trials, therefore, extends beyond the symbolic towards the substantive as it has significant implications for medical science. More specifically, the lack of First Nation, Inuit and Métis-identified health priorities limits the “validity and generalizability of research findings, contributing to inequity in treatment outcomes, and influencing the allocation of resources for services and research. 

The work of the ACT Consortium Indigenous Health Committee intends to address a critical knowledge gap about the distinct health priorities identified by First Nation, Inuit, and Métis communities, and seeks to develop an understanding of the culturally safe, respectful, and specific participant engagement frameworks and processes that uphold the rights of Indigenous Peoples, and tenets of Indigenous Research Methodologies and principles of engagement.