27 states and D.C. sue to block 23andMe's data sale amid bankruptcy proceedings.
Regeneron Pharmaceuticals' $256 million acquisition faces scrutiny over privacy concerns.
Court-appointed privacy ombudsman to assess impact on consumer data rights.
Ever since 23andMe declared bankruptcy and put itself up for sale, privacy advocates have sounded the alarm. What, they asked, will happen the the DNA data on millions of people who have used the service over the years to trace their ancestry.
Now, 27 U.S. states and the District of Columbia have filed a lawsuit in bankruptcy court to prevent the sale of 23andMe's personal genetic data without explicit customer consent.
The action is a direct result of the company’s Chapter 11 bankruptcy proceedings. Regeneron Pharmaceuticals has a $256 million offer on the table.
Oregon Attorney General Dan Rayfield emphasized the public's right to privacy, stating that such deeply personal information requires informed consent before any transfer.
“This isn’t just data – it’s your DNA. It’s personal, permanent, and deeply private,” Rayfield said in a press release. “People did not submit their personal data to 23andMe, thinking their genetic blueprint would later be sold off to the highest bidder. We’re standing up in court to make sure Oregonians – and millions of others – keep the right to control their own genetic information.”
Special kind of asset
The states argue that this kind of information – biological samples, DNA data, health-related traits, and medical records – is too sensitive to be sold without each person’s express, informed consent. If the buyers are unwilling to provide such consent, it is possible that the information will not be able to be sold.
In either case, the states will be helping ensure that people’s genetic data isn’t misused, exposed in future data breaches, or used in ways customers never contemplated when they signed up to have their DNA analyzed.
If consumers provided their DNA to 23andMe, there are steps they can take to delete their genetic information now, to prevent it from being sold. In March, ConsumerAffairs explained how to do it.