UT Southwestern's Ethics Grand Rounds: Reframing Indigenous Health through Genomic Data Sovereignty and Equity

Speaker: Krystal S. Tsosie, Ph.D., M.P.H.

Assistant Professor in the School of Life Sciences and Associate Director of the Biodiversity Knowledge Integration Center at Arizona Sate University

Abstract: The next discoveries in genomic medicine are likely to be rare or uncovered variation from populations absent in current datasets. Indigenous people--who are concerned with data sharing, privacy, broad consent, and group risks of re-identification that are unlikely to be resolved by open data--encounter many dilemmas. How can Indigenous peoples benefit from precision health though they derive lower clinical utility and have structural barriers to care? How can they contribute to genomic datasets, if they wanted to, and not be subject to data co-optation and commercialization in innovation pathways that are inaccessible to Indigenous peoples? Merely increasing inclusion of Indigenous peoples in genomic datasets is not going to solve the health inequity problem without drastic shifts in benefit- and data-decision equity via Indigenous-led biobanking and machine learning approaches. The era of community-based participatory research has transitioned to Tribally based research in genomics and health.

CME

This activity has been approved for AMA PRA Category 1 Credit(s)™ (including medical ethics and/or professional responsibility).

NCPD 

UT Southwestern Medical Center is accredited as a provider of nursing professional development by the American Nurses Credentialing Center's Commission on Accreditation.

This activity has been awarded 1.0 credit hour.

For additional information about this lecture, please refer to the announcement.

Contact

Ruth Vinciguerra | Email