Episode 10: “Stewardship Over Biodata Rebuilds Trust”
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Mending broken trust may be a first step for investigators who want to increase the participation of Native people in medical research.
"There’s such a history of extractive research in Indigenous communities, such that 'research' and 'science' are sometimes dirty words," said Navajo geneticist and bioethicist Krystal Tsosie.
Poor communication and a lack of transparency are among the missteps that have eroded the trust Indigenous communities have in medical research. And that mistrust has contributed to the underrepresentation of Native people in clinical trials.
In 2018, Tsosie co-founded the Native BioData Consortium, a research institute led by Indigenous scientists. The consortium is working to improve health equity by actively engaging community members in the research process. When the group collects biological samples from Native tribes, they are stored on sovereign Native American land and made accessible only to researchers who are prioritizing Indigenous health needs.
"The benefits are directly rolled back into the people and their communities without a profit to outside entities," Tsosie said.
Episode 10 explores the history of exploitation of Indigenous communities by outside researchers and some of the health consequences of being left out of medical trials.
Voices from the episode:
- Dr. Dakotah Lane, executive medical director of the Lummi Tribal Health Clinic
- Krystal Tsosie, co-founder and ethics and policy director for the Native BioData Consortium — @kstsosie
Season 4 of "American Diagnosis" is a co-production of KHN and Just Human Productions.
Our Editorial Advisory Board includes Jourdan Bennett-Begaye, Alastair Bitsóí, and Bryan Pollard.
This article was reprinted from khn.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.