Can’t see the audio player? Click here to listen.
The transcript for this segment is being processed. We’re working to post it four to five days after the episode airs.
Episode 10: “Stewardship Over Biodata Rebuilds Trust”
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:
Season 4 of “American Diagnosis” is a co-production of KHN and Just Human Productions.
To hear all KHN podcasts, click here.
The views and opinions expressed in this article are those of the authors and do not necessarily reflect the official policy or position of LowerMyRx.