Background: First Nations people are significantly under-represented in genomics research, a gap partly attributed to historically extractive and unethical research practices. Continued under-representation has adverse implications for equity in healthcare outcomes. To benefit First Nations people, genomic research must respect and align with established Indigenous knowledge systems, socio-cultural norms, governance structures, and ethical priorities.
Methods: A Participatory Action Research (PAR) approach privileging First Nations voices was employed to develop ethical, community driven genomic research guidelines and practices. Inductive content analysis of semi-structured focus groups with 63 Aboriginal participants across three communities identified community-endorsed processes that should guide research practice for genomics in these regions.
Results: Content analysis developed five categories or ‘processes’ relevant to the research question: 1) respect and follow established community processes, 2) talk to the right people and work together, 3) gain cultural competency, 4) translate and use language appropriately, and 5) share research findings. While common themes emerged across sites, participants emphasised the importance of community-specific processes/practices informed by distinct histories, geographies, and cultural norms. These processes strongly align with existing ethical frameworks yet are not consistently enacted in practice.
Conclusion: First Nations communities have established ways of doing research. Repeated calls for processes that align with ethical standards already articulated in national guidelines suggests a failure of implementation in practice and highlight the need for genomic-specific recommendations. Embedding community-led approaches, and honouring Indigenous knowledge systems in practice, is essential for culturally safe research that builds trusts, promotes inclusion, and supports a pathway to equitable benefit.