Genetic Research within Indigenous Communities: Engagement Opportunities and Pathways Forward

Purpose Against a historical backdrop of researchers who violated trust through lack of benefit sharing, transparency, and engagement, efforts are underway to develop better approaches for genetic and genomic research with Indigenous communities. To increase engagement, there is a need to understand factors that impact researcher and community collaborations. This study aimed to understand the barriers, challenges, and facilitators of Indigenous Peoples in the US participating in genetic research. Methods We conducted 42 semi-structured interviews with Tribal leaders, clinicians, researchers, policy makers, and Tribal research review board members across the US to explore perceived risks, benefits, barriers and facilitators of genetic research participation. Results Participants, identifying as Indigenous (88%) or non-Indigenous allies (12%), described their concerns, hesitancy, and fears about genetic research as well as the roles of trust, transparency, and respect for culture in facilitating partnerships. Previous harms – such as sample and data misuse, stigmatization, or misrepresentation by researchers – revealed strategies for building trust to create more equitable and reciprocal research partnerships. Conclusion Participants in this study offered strategies for increasing genetic research engagement. The pathway forward should foster transparent research policies and practices to facilitate informed research that supports the needs and priorities of participants, communities, and researchers.