Genetic testing = Genetic information = You become a commodity

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What’s next for 23andMe? Most people know the biotech company as a genetic testing service. Stories of people sending their cheek swabs off in the mail only to discover that a parent who raised them wasn’t their biological one have become a kind of millennial horror genre. Of course, most 23andMe experiences aren’t that dramatic: the company says more than 14 million people have used the service in hopes of learning more about their ancestry.

But this month, 23andMe revealed it is facing major financial troubles, and more information came to light about a devastating security breach at the company last year. Now, customers might be wondering: can they trust 23andMe with their DNA?
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At-home DNA tests are so ubiquitous that you can order one for a dog. 23andMe was the first company to offer the (human) service, back in 2007, and now an estimated one in five Americans have tried at-home genetic testing. Some customers were handing over personal data that Wojcicki and company used for purposes other than inspiring family reunions.

From 2018 to 2023, 23andMe partnered with the pharmaceutical giant GlaxoSmithKline, using customers’ genetic information to help develop drug targets. (A drug target is a molecule that plays a role in a disease; researchers use them to develop therapies for certain diseases.) This year, the partnership became non-exclusive, which means 23andMe can strike deals with more pharmaceutical companies to milk more money out of its DNA trove.
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“There are no serious safeguards, no regulation around the collection and sale of really sensitive personal data,” said Suzanne Bernstein, a law fellow at the Electronic Privacy Information Center. “For 23andMe, the nefarious [data] breach constitutes a security issue, but so does the company sharing your information with a party that you didn’t know about. Customers may technically consent to their data being shared by accepting the terms and conditions, but those are really long and a lot of people don’t read them.”
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More:

 
DNA-testing company 23andMe soared in the early cash session in New York on news that Anne Wojcicki, the CEO, plans to take the struggling company private after three years on the public markets. The company once sported a $6 billion valuation and has since collapsed to $235 million.
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"As sales of its DNA testing kits have slowed in recent years, 23andMe has pivoted to offering subscription products in hopes of creating repeat customers for its consumer business," Bloomberg pointed out.

There were fears earlier this year that 23andMe would be sold to an overseas PE firm. Thankfully, this has not happened because it would be a national security risk.


We really should enshrine privacy and ownership rights of one's self (DNA, bodily fluids, etc.) in the Constitution.
 
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