Missouri Attorney General Andrew Bailey
JEFFERSON CITY – Missouri Attorney General Andrew Bailey’s office, as part of a multistate coalition, has successfully secured significant consumer privacy protections in the sale of genetic testing company 23andMe to a nonprofit medical research organization.
The Bankruptcy Court for the Eastern District of Missouri approved the $305 million sale on June 27, following months of legal proceedings and objections raised by Missouri and other states aimed at safeguarding sensitive consumer data.
“I am proud Missouri helped lead the charge to prevent 23andMe from auctioning off Missourians’ private genetic data to the highest bidder,” Bailey said in a statement. “Thanks to our efforts, this sale is now subject to strong privacy protections that will safeguard consumer information and ensure accountability going forward.”
23andMe, which filed for Chapter 11 bankruptcy on March 23, following a massive cybersecurity breach in 2023 and financial decline, sought to sell its assets, raising concerns about the potential misuse or sale of consumers’ sensitive genetic information.
In response, Bailey joined other states in formally objecting to the inclusion of consumer data in the bankruptcy sale, leading to a set of stringent privacy conditions agreed upon by the buyer, the newly formed TTAM Research Institute, established by 23andMe founder and former CEO, Anne Wojcicki.
Under the terms of the approved sale, TTAM must adhere to several key privacy safeguards. Notably, there will be no transfer of consumer DNA, with all genetic data remaining protected under existing privacy policies and enhanced cybersecurity protocols.
Consumers will retain the right to permanently delete their data at any time, and enforcement mechanisms, including oversight by the Missouri Attorney General’s Consumer Protection Team, will ensure these rights are honored. Additionally, any future sale of genetic data must uphold TTAM’s privacy commitments and comply fully with all applicable laws.
To further protect national security interests, TTAM is prohibited from sharing customer data with any individuals or entities associated with foreign adversaries as defined by federal law.
A three-member Consumer Privacy Advisory Board, comprised of experts in privacy, bioethics, and cybersecurity, will be established to guide the organization’s data practices. TTAM is also required to provide reports on its privacy practices to the Missouri Attorney General upon request, ensuring continued state oversight.
Beyond the enhanced privacy measures, the sale is expected to bring additional benefits to Missouri residents. The $305 million sale price will help fund claims made by the seven million individuals affected by the 2023 23andMe data breach.
The nonprofit status of TTAM will allow for continued scientific research in partnership with academic and public institutions for consumers who have chosen to participate, and no disruptions to existing customer services are anticipated.
“Our office will continue to monitor this transition closely,” Bailey added. “That includes enforcement of consumers’ rights to delete their data and ongoing compliance with Missouri’s consumer protection laws.”
Consumers impacted by the bankruptcy are urged to take action by filing a proof of claim if they believe 23andMe, Lemonaid Health, Telehealth or Pharmacy owes them money or if they have any other claims against these businesses.
The deadline to file a claim is July 14. Special proof of claim forms are available for victims of the 2023 data breach. Claims can be filed electronically through the official Kroll website or by first-class mail or courier to designated addresses.
Consumers wishing to ensure the permanent deletion of their genetic data may log into their 23andMe account and follow specific steps to delete both their data and any stored DNA samples.
Instructions for deleting accounts, genetic data, and revoking research consent are available on 23andMe’s customer care website. Consumers are also encouraged to consider whether they wish to remove their information to prevent it from potentially being treated as an asset in future proceedings.
In support of Missouri consumers, Bailey successfully sought the appointment of an independent consumer protection ombudsman to review the legal considerations surrounding the sale of consumer genetic data. Privacy expert Professor Neil Richards was appointed to evaluate the matter and provide a report to the bankruptcy court.
