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Indigenous Nations Are Fighting To Take Back Their Data

Science Friday

05-06-2024 • 18 mins

You might’ve heard this phrase before: data equals power. Because when you have data, you can decide how they’re used and who gets to use them.

The history of research on Indigenous communities in the United States is full of stories of exploitation, power imbalances, and stolen knowledge. Be it through the iodine experiments of the 1950s in Alaska, the racist and pseudoscientific conclusions drawn by American anthropologists in the 20th century, or through more recent examples in which genetic data from communities were used in studies without their consent— these practices have caused lasting mistrust and harm.

The growing field of Indigenous data sovereignty demands that Native communities maintain the right to decide how data about their people are collected, owned, and used.

Guest host Arielle Duhaime-Ross talks with two people at the forefront of this movement: Dr. Stephanie Carroll is the director of the Collaboratory for Indigenous Data Governance and an associate professor of public health at the University of Arizona in Tucson. She is also Ahtna and a citizen of the Native Village of Kluti-Kaah in Alaska. Dr. Krystal Tsosie is a co-founder of the Native BioData Consortium and an assistant professor and geneticist-bioethicist at Arizona State University in Tempe. She’s a member of Navajo Nation. They discuss how data on Indigenous Peoples has been used and abused, why data sovereignty is more important than ever, and what solutions look like.

Transcripts for each segment will be available after the show airs on sciencefriday.com.

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