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Is it safe to give your genetic data to 23andMe?

CEO Anne Wojcicki explains the DNA testing company’s privacy protections on the latest Too Embarrassed to Ask.

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23andMe co-founder Anne Wojcicki onstage Kimberly White/Getty Images for Vanity Fair

23andMe has been around for more than 11 years, but it’s just now getting to “critical mass,” CEO Anne Wojcicki says, thanks in part to a recent $200 million funding round.

But as the personal genomics company grows, convincing more and more people to send their spit off to a lab in exchange for data about their DNA, what is it doing about privacy? We got a lot of questions to that effect when we announced that Wojcicki would be talking with Kara Swisher and Lauren Goode on the latest episode of Too Embarrassed to Ask.

“Privacy and your ownership and control of your genome is the most important — it’s the foundation of this company,” Wojcicki said. “If you were to participate in a research study at, let’s say, UCSF — once you participate, you can’t easily pull your data out. At any point in time, you call 23andMe, or you email in, and say, ‘I want to delete all my data,’ we’ll delete all your data. We can’t undo a research project or something we’ve done, but you can delete your data at any time.”

She stressed that the company does not work with insurance companies in any way, but does partner with universities and pharma companies, offering the data of customers who have explicitly opted in to help with genetic research.

“Usually, those are people who have a specific disease, and usually, they’re very enthused,” she said. “... People who have Parkinson’s Disease, they want us to do programs all day long because they want to advance the disease [research].”

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On the new podcast, Wojcicki also addressed questions about what might happen if 23andMe changed ownership, or if it was attacked by hackers, a la Equifax. She said its databases are built such that DNA info is “totally separate” from personally identifiable info — but she also questioned whether the company would really be of value to hackers.

“Knock on wood, we’ve never been hacked,” Wojcicki said. “I doubt there will be interest in it. Your bank account is inherently interesting, your passwords are inherently interesting.”

“If I come and get your DNA: ‘Oh! Kara’s not great at basketball! And she’s got brown eyes and she’s European!’ There’s the interest element and what I’ve seen is that privacy breaches happen more within a family, where people will say, ‘I want to see, is my sibling related to my other sibling?’”

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