23andMe bankruptcy leaves control of genetic data from millions in limbo

Los Angeles Times

30-03-2025

Good morning, and welcome to the Essential California newsletter. It's Sunday. I'm your host, Andrew J. Campa. Here's what you need to know:
There were the cases that forced hard truths, such as what happened to Christina Snyder Monahan.
The Irvine resident received genetic results from a DNA test that showed she was around 50% Persian, though no one in her family was.
Then Monahan's mother acknowledged an 'encounter' with a man who was not her husband, but was Christina's biological father.
Such a revelation wouldn't have been possible without 23andMe, the South San Francisco-based genetic testing company that allowed consumers to send in their DNA and receive valuable information.
Most of the results were not as dramatic, but confirmed family histories and, in many cases, provided vital medical information.
Now Monahan and roughly 15 million other customers are worried about their valuable and private genetic information after 23andMe declared bankruptcy.
My colleagues Caroline Petrow-Cohen and Stacy Perman reported on the future of that data.
A rising star's downfall
The company was a comet — at one point valued at $6 billion — and was popular for its at-home saliva DNA test kits.
23andMe once held 'spit parties,' where high-profile celebrity customers hocked into a tube to provide their DNA sample.
The samples helped people discover entirely new family trees and could reveal consequential health information, such as a genetic predisposition to cancer. The genetic data collected by services similar to 23andMe were used to catch the infamous Golden State Killer in 2018.
But after an initial surge in business, 23andMe struggled to attract repeat customers and failed to branch out into other venues. Eventually, internal company politics led to a Chapter 11 bankruptcy filing on March 23.
A bankruptcy court authorized the company to sell off its assets, including its database of genetic information.
The treasured DNA
The company's online terms of service say, 'Your sample is processed in an irreversible manner and cannot be returned to you. Any information derived from your sample remains subject to rights we retain as set forth in these Terms.'
'Genetic information is uniquely sensitive because it reveals immutable characteristics about ourselves,' Sara Geoghegan, senior counsel at the Electronic Privacy Information Center, told The Times recently. 'I would be very concerned if I had given a swab to 23andMe. There is little we can do to control what happens to it.'
The state jumped in to warn consumers.
California Atty. Gen. Rob Bonta issued a consumer alert after the bankruptcy announcement to remind Californians of their right to have their genetic data deleted under the Genetic Information Privacy Act and the California Consumer Privacy Act.
Website crashes and promises
The 23andMe website crashed recently as customers deleted their data, the Wall Street Journal reported.
The company issued a statement clarifying that 'potential buyers must, among other requirements, agree to comply with 23andMe's consumer privacy policy and all applicable laws with respect to the treatment of customer data.'
A company spokesperson declined to comment for this article and referred to previous statements.
Past problems
A company data breach in 2023 affected nearly 7 million customers, and last year, 23andMe paid $30 million to settle a class-action lawsuit accusing the company of failing to protect its customers.
The level of risk 23andMe customers face now largely depends on who ends up buying the company, said Christo Wilson, a Northeastern University computer sciences professor who specializes in online privacy and data security.
'People should be worried,' he said. 'There's lots of different actors who would want this data for a lot of different purposes, far beyond what you probably thought you were consenting to when you were just interested in genealogy.'
What you can do
'The attorney general of California is suggesting that people delete their accounts and that is making me think twice,' Monahan said. 'There might be danger lurking out there or repercussions.'
Customers can delete their account and request their samples be destroyed. They must log in and navigate to the settings page, where they can also withdraw permission for third-party researchers to use their data.
For more information on precautions or background, check out the full article.
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