Genetic research within Indigenous communities: Engagement opportunities and pathways forward

Area of Science:

• Genetics and genomics
• Indigenous health research
• Bioethics

Background:

• Historical mistrust in research due to past exploitation of Indigenous data and samples.
• Need for improved engagement and collaboration models in genetic research involving Indigenous communities.
• Ethical considerations and benefit-sharing are paramount for equitable research partnerships.

Purpose of the Study:

• To identify barriers, challenges, and facilitators for Indigenous Peoples in the United States participating in genetic research.
• To understand factors influencing researcher and community collaborations in Indigenous genetic research.
• To inform strategies for increasing engagement in genetic research with Indigenous communities.

Main Methods:

• Conducted 42 semistructured interviews across the United States.
• Interviewed diverse stakeholders including Tribal leaders, clinicians, researchers, policy makers, and Tribal research review board members.
• Explored perceived risks, benefits, barriers, and facilitators of genetic research participation.

Main Results:

• Participants expressed concerns, hesitancy, and fears regarding genetic research, emphasizing the importance of trust, transparency, and cultural respect.
• Past harms, including sample/data misuse and stigmatization, highlighted the need for strategies to build trust.
• Equitable and reciprocal research partnerships are facilitated by addressing historical harms and fostering open communication.

Conclusions:

• Strategies for increasing engagement in genetic research with Indigenous communities were identified.
• Transparent research policies and practices are essential for informed consent and participation.
• Future research should prioritize the needs and priorities of participants, communities, and researchers to foster equitable partnerships.