In Episode 129, Quinn tries to better understand data privacy, data stewardship, and what it means for Indigenous cultures in the future of biotech, how we design equity into genetic research, and who gets to make those decisions.
His guest is Krystal Tsosie, a geneticist, bioethicist, and—first and foremost to her—a person Indigenous to the southwestern United States, specifically the Navajo nation. She is the co-founder and Ethics and Policy Director at the Native BioData Consortium, the first Indigenous-led biological data repository for tribes in the US.
“Representation” is just the first step (and so much more than who shows up on screen in the latest Disney movie (though even things there are still embarrassingly bland).
Next up is inclusivity: It’s about who’s in the room writing and building the future of technology, it’s about asking who makes the rules, and who benefits from them?
But the real goal is equity, and benefit. And biotech in particular is one sector that could get out of hand real fast unless we approach it in a more inclusive and cooperative way.
Krystal started her career with one question: Why don’t Indigenous people generally participate in genetic studies? And the dominoes fell from there.
Representation, inclusivity, equity, benefit – we can achieve these, and also uncouple DNA from identity.
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Important, Not Important Book Club:
• Native American DNA (https://bookshop.org/a/8952/9780816665860) by Kim TallBear
• Data Feminism (https://bookshop.org/a/8952/9780262044004) by Catherine D'Ignazio and Lauren F. Klein
• https://bookshop.org/shop/importantnotimportant
Links:
• nativebio.org (https://nativebio.org/)
• Twitter: @kstsosie (https://twitter.com/kstsosie)
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