‘American diagnosis’: ‘We need to be at the table’: Native-led medical research


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Episode 10: “Stewardship Rebuilds Trust on Biodata”

Repairing broken trust can be a first step for investigators who want to increase the participation of indigenous peoples in medical research.

“There is such a history of extractive research in indigenous communities, that ‘research’ and ‘science’ are sometimes dirty words,” says Navajo geneticist and bioethicist Crystal Soci.

Poor communication and lack of transparency are among the missteps that have eroded the trust of indigenous communities 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 team collects biological samples from Native tribes, they are stored on sovereign Native American lands and made accessible only to researchers who are prioritizing the health needs of Native Americans.

A digital image in watercolor and pencil.  A Native American researcher, wearing a white lab coat, holds up a vial to light to test it.  Bright gold surrounds the dew, which gradually fades into shadows at the outer edges of the frame.
(Ona Tempest/KHN)

“Benefits flow directly back into people and their communities without the benefit of outside entities,” Tsosie said.

Episode 10 explores the history of exploitation of Indigenous communities by outside researchers and some of the health consequences of exclusion from medical trials.

Voiceover from the episode:

  • Dakota Lane DrExecutive Medical Director of the Lummi Tribal Health Clinic
  • crystal saucy, For Co-Founder and Policy & Policy Director Native Biodata Consortium – @kstsosie

Season 4 of “American Diagnosis” is co-produced by KHN and Just Human Productions.

Includes our editorial advisory board Jordan Bennett-Begaye, Alistair Bitzoiand Brian Pollard.

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