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Submission + - 23andMe Is On the Brink. What Happens To All Its DNA Data? (npr.org)

Submitted by Anonymous Coward
An anonymous reader writes: Andy Kill, a spokesperson for 23andMe, would not comment on what the company might do with its trove of genetic data beyond general pronouncements about its commitment to privacy. “For our customers, our focus continues to be on transparency and choice over how they want their data to be managed,” he said. When signing up for the service, about 80% of 23andMe’s customers have opted in to having their genetic data analyzed for medical research. “This rate has held steady for many years,” Kill added. The company has an agreement with pharmaceutical giant GlaxoSmithKline, or GSK, that allows the drugmaker to tap the tech company’s customer data to develop new treatments for disease. Anya Prince, a law professor at the University of Iowa's College of Law who focuses on genetic privacy, said those worried about their sensitive DNA information may not realize just how few federal protections exist. For instance, the Health Insurance Portability and Accountability Act, also known as HIPAA, does not apply to 23andMe since it is a company outside of the health care realm. “HIPAA does not protect data that’s held by direct-to-consumer companies like 23andMe,” she said.

Although DNA data has no federal safeguards, some states, like California and Florida, do give consumers rights over their genetic information. “If customers are really worried, they could ask for their samples to be withdrawn from these databases under those laws,” said Prince. According to the company, all of its genetic data is anonymized, meaning there is no way for GSK, or any other third party, to connect the sample to a real person. That, however, could make it nearly impossible for a customer to renege on their decision to allow researchers to access their DNA data. “I couldn't go to GSK and say, ‘Hey, my sample was given to you — I want that taken out — if it was anonymized, right? Because they're not going to re-identify it just to pull it out of the database,” Prince said.

Vera Eidelman, a staff attorney with the American Civil Liberties Union who specializes in privacy and technology policy, said the patchwork of state laws governing DNA data makes the generic data of millions potentially vulnerable to being sold off, or even mined by law enforcement. “Having to rely on a private company's terms of service or bottom line to protect that kind of information is troubling — particularly given the level of interest we've seen from government actors in accessing such information during criminal investigations,” Eidelman said. She points to how investigators used a genealogy website to identify the man known as the Golden State Killer, and how police homed in on an Idaho murder suspect by turning to similar databases of genetic profiles. “This has happened without people's knowledge, much less their express consent,” Eidelman said.

Neither case relied on 23andMe, and spokesperson Kill said the company does not allow law enforcement to search its database. The company has, however, received subpoenas to access its genetic information. According to 23andMe’s transparency report, authorities have sought genetic data on 15 individuals since 2015, but the company has resisted the requests and never produced data for investigators. “We treat law enforcement inquiries, such as a valid subpoena or court order, with the utmost seriousness. We use all legal measures to resist any and all requests in order to protect our customers’ privacy,” Kill said. [...] In a September filing to financial regulators, [23andMe CEO Anne Wojcicki] wrote: “I remain committed to our customers’ privacy and pledge,” meaning the company's rules requiring consent for DNA to be used for research would remain in place, as well as allowing customers to delete their data. Wojcicki added that she is no longer considering offers to buy the company after previously saying she was.

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