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'American Diagnosis': 'We need to be at the table': Native-led medical research aims to restore trust
Episode 10: “Biodata Management Rebuilds Trust” Can’t see the audio player? Click here to listen. The transcript for this segment is being edited. We are working on releasing it four to five days after the episode airs. Repairing broken trust can be a first step for researchers seeking to increase Indigenous participation in medical research. “There is such a history of resource research in indigenous communities 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 undermine the trust of indigenous...
'American Diagnosis': 'We need to be at the table': Native-led medical research aims to restore trust
Episode 10:“Biodata management rebuilds trust”
Can't see the audio player? Click here to listen.
The transcript for this segment is being edited. We are working on releasing it four to five days after the episode airs.
Repairing broken trust can be a first step for researchers seeking to increase Indigenous participation in medical research.
“There is such a history of resource research in indigenous communities 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 Indigenous communities' trust in medical research. And this distrust has contributed to Indigenous people being underrepresented in clinical trials.
In 2018, Tsosie co-founded the Native BioData Consortium, a research institute led by Indigenous scientists. The consortium works to improve health equity by actively involving community members in the research process. When the group collects biological samples from indigenous tribes, they are stored on sovereign Indian lands and made available only to researchers who prioritize indigenous health needs.
“The benefits will be passed directly back to people and their communities, without external companies benefiting,” Tsosie said.
Episode 10 examines the history of exploitation of Indigenous communities by outside researchers and some of the health consequences of exclusion from medical studies.
Voices from the episode:
- Dr. Dakotah Laneleitender medizinischer Direktor der Lummi Tribal Health Clinic
- Kristall Tsosie, Mitbegründer und Ethik- und Politikdirektor für die Natives BioData-Konsortium — @kstsosie
Season 4 of “American Diagnosis” is a co-production between KHN and Human productions only.
Our editorial advisory board includes: Jourdan Bennett Begaye, Alastair Bitsoi and Bryan Pollard.
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