PI-089 - NATIONAL MEETING ON COMMUNITY ENGAGED RESEARCH TOWARDS PRECISION MEDICINE WITH AMERICAN INDIAN AND ALASKA NATIVE PEOPLE.
Wednesday, March 22, 2023
5:00 PM – 6:30 PM EDT
K. Brown1, R. Woodbury2, S. Hopkins3, W. Burke4, B. Boyer3, D. Dillard2, E. Woodahl1; 1University of Montana, Missoula, MT, USA, 2Southcentral Foundation, Anchorage, AK, USA, 3Oregon Health & Science University, Portland, OR, USA, 4University of Washington, Seattle, WA, USA.
Research Scientist University of Montana, United States
Background: Ensuring equitable access to the benefits of precision medicine for American Indian and Alaska Native (AIAN) people requires translational research within these communities. After a legacy of research misconduct, thoughtful community engagement is necessary to ethically inform precision medicine research (PMR) methods and ensure research aims are aligned with community priorities and expectations. Methods: Three Tribal communities are partners in the Northwest-Alaska Pharmacogenomics Research Network. Between 2017-2019, deliberations with our partners were conducted in three phases: focus groups and interviews with healthcare providers, local site discussions with Tribal leaders, and a cross-site deliberation with site representatives. In May 2022, we held a 2-day deliberation in Seattle, WA with community members from our Tribal partners and representatives from other Tribal groups, the NIH, and researchers. Results: We provided a platform to discuss PMR concepts; principles, issues, and challenges related to PMR in AIAN communities; and ways to move from discussion to action through strategies that promote equity and access to PMR within these communities. The deliberation focused on considerations for conducting PMR, including data and biospecimen stewardship, return of research results, and aligning research aims with Tribal health priorities. Attendees emphasized the importance of actions that promote early community consultation and effective capacity development within both research institutions and the community. Conclusion: The event represented a culmination of bidirectional learning opportunities and provided a platform for groups representing Tribal populations, academia, funding agencies, and industry to share insights on future PMR within AIAN populations.