Values and Practices to Strengthen Genetic Research Partnerships with Indigenous Communities

Area of Science:

• Genomics
• Precision Medicine
• Health Equity

Background:

• Genetic datasets often lack diversity, particularly data from Indigenous populations.
• Equitable partnership models show potential for increasing Indigenous participation in research.
• Existing research models may not adequately address the needs or priorities of Indigenous communities.

Purpose of the Study:

• To define values and practices for strengthening Indigenous participation in genetic research.
• To foster collaboration between Indigenous communities and universities in precision medicine research.
• To identify key elements for successful and ethical community-university partnerships.

Main Methods:

• Convened a meeting of participants from four Indigenous community-university partnerships.
• Facilitated discussions on priorities for genetic research involving Indigenous peoples.
• Documented shared values and recommended practices for equitable research.

Main Results:

• Highest priorities identified: building trusting relationships, respecting Indigenous community authority, and ensuring community benefit.
• Supporting priorities: incorporating Indigenous expertise, transparent communication, and community capacity development.
• Emphasis on evaluating genetic factors within the context of social determinants of health.

Conclusions:

• Equitable partnerships are crucial for enhancing diversity in genetic research.
• Trust, respect for authority, and community benefit are foundational to successful Indigenous-led research.
• Integrating Indigenous knowledge and addressing social determinants of health are essential for ethical and impactful precision medicine.