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Home Perspectives

Native-Led Medical Research Aims to Rebuild Trust

‘We need to be at the table’

Dakotah Lane by Dakotah Lane
September 25, 2022
in Perspectives
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Native-Led Medical Research Aims to Rebuild Trust

Colca Canyon is a canyon of the Colca River in southern Peru. It is located about 100 miles (160 kilometers) northwest of Arequipa. It is more than twice as deep as the Grand Canyon in the United States at 4,160 m. However, the canyon's walls are not as vertical as those of the Grand Canyon. The Colca Valley is a colorful Andean valley with towns founded in Spanish Colonial times and formerly inhabited by the Collaguas and the Cabanas. The local people still maintain ancestral traditions and continue to cultivate the pre-Inca stepped terraces.http://bhphoto.pl/IS/peru_380.jpg

Can’t see the audio player? Click here to listen.

Click here for a transcript of the episode.

“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:

  • 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.

To hear all KHN podcasts, click here.

Listen and follow “American Diagnosis” on Apple Podcasts, Spotify, Google, or Stitcher.

KHN (Kaiser Health News) is a national newsroom that produces in-depth journalism about health issues. Together with Policy Analysis and Polling, KHN is one of the three major operating programs at KFF (Kaiser Family Foundation). KFF is an endowed nonprofit organization providing information on health issues to the nation.

Subscribe to KHN’s free Morning Briefing.

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Executive medical director of the Lummi Tribal Health Clinic

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