Claw et al. “Framework for Enhancing Ethical Genomic Research”

1. Introduction to Ethical Genomic Research with Indigenous Communities

• Authors: Katrina G. Claw, Matthew Z. Anderson, Rene L. Begay, Krystal S. Tsosie, Keolu Fox, Nanibaa’ A. Garrison

• Purpose: Establish collaboration and inclusion among Indigenous communities in genomic research.

2. Importance of Indigenous Inclusion in Genomic Studies

• Underrepresentation: Indigenous peoples (AI, AN, NH) are underrepresented in genetic and healthcare research, potentially missing out on benefits.

• Health Disparities: Indigenous communities have higher rates of diseases (CVD, cancer, diabetes) compared to non-Hispanic whites, necessitating their inclusion in research efforts.

• Current Research Discrepancy: Despite initiatives like the All of Us program, Indigenous individuals remain underrepresented in genome-wide studies, dropping from 0.06% to 0.05% between 2009 and 2016.

3. Barriers to Participation

• Community Engagement Lapses: Issues include lack of ethical practices, transparency, and historical mistrust due to past research misconduct.

• Notable Misconduct Cases:

  • Human Genome Diversity Project: Failed to engage Indigenous concerns, causing resistance.

  • Havasupai Tribe Lawsuit: Highlighted failures in informed consent, raising awareness of ethical research implications.

4. Framework Proposal for Ethical Engagement

• Six Principles of Ethical Engagement:

  1. Understand Existing Regulations: Recognize tribal sovereignty and the research regulations that apply.

  2. Foster Collaboration: Engage with Indigenous communities as research partners, not subjects.

  3. Build Cultural Competency: Understand and respect cultural values and perspectives.

  4. Improve Research Transparency: Maintain clear communication about research goals and practices.

  5. Support Capacity Building: Develop capabilities within Indigenous communities for sustainable research.

  6. Disseminate Research Findings: Share results in formats accessible to Indigenous communities.

5. Building Relationships and Trust

• Long-term Partnerships: Positive research outcomes depend on respectful, continuous engagement with community members.

• Community-Based Participatory Research (!CBPR): Engagements should be rooted in mutual understanding, aiming for effective communication and collaboration.

6. Examples of Successful Collaborations

• San People Ethical Code: Shifted power dynamics in genetic research, emphasizing community governance.

• Strong Heart Study (SHS): Focused on cardiovascular health within AI communities while ensuring community participation.

• Northwest-Alaska Pharmacogenomics Research Network: Building cultural competency and encouraging Indigenous involvement in pharmacogenetic studies.

7. Conclusion and Future Directions

• Ethical Considerations: A need for awareness and commitment to ethical practices in genomic research with Indigenous populations.

• Collaborative Opportunities: Researchers are encouraged to view Indigenous groups as partners to enable beneficial genetic research outcomes.