When The Data Is Us (with Krystal Tsosie)

Baratunde continues his journey to discover how we can embed more justice into the data driving our increasingly automated lives and focuses on the most intimate data there is: our DNA. He talks with Krystal Tsosie, an indigenous geneticist, and bioethicist who fights for data sovereignty and the rights of indigenous peoples to have agency over their personhood and knowledge.

Guest: Krystal Tsosie

Bio: Indigenous (Diné/Navajo) geneticist-ethicist at Vanderbilt University and incoming faculty at Arizona State. Co-Founder of the Native BioData Consortium. 

Online: Native BioData Consortium website; Krystal’s TED talk and Twitter @kstsosie

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ACTIONS

 

- PERSONALLY REFLECT 

What’s your data worth?

Ask yourself, “how much is my data privacy worth to me, and how do I feel about nonconsensual surveillance based on my data?” Now add in the element of genetic information. How would you feel if any of your biological kin donated genetic information that was tied to information about you that can be bought and sold?

 

- BECOME INFORMED 

Learn about nonconsensual data collection

Read this NY Times article about Indigenous tribes in the Amazon who felt “duped, lied to, exploited” when they realized their donated blood samples were being sold for $75 a vial while the medicines they were promised in exchange never arrived. Or learn about Henrietta Lacks, a Black woman whose cervical cancer cells (“HeLa”) changed the field of biology and have been commodified by laboratories, but without the knowledge of her or her family. Now let’s make it more personal. Find out what Big Tech knows about you with some of the suggestions in this article.

 

- PUBLICLY PARTICIPATE 

Support ethical data practices

Empower science led by Indigenous scientists working with tribal communities to ensure that the benefits of biomedicine and public health benefit Indigenous peoples. Consider making a donation to the Native BioData Consortium. And help protect yourself and slow the market for selling our data by installing the Global Privacy Control. This is a feature of certain web browsers that lets you signal to a site not to trade information about you, and it’s backed by law! 

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