Millions of 23andMe DNA profiles sold back to former CEO

The DNA data of millions of users of the DNA testing service 23andMe has been sold to the TTAM Research Institute and will not end up in the hands of the pharmaceutical company Regeneron Pharmaceuticals.

A press release from 23andMe reveals that the TTAM Research Institute will comply with 23andMe’s privacy rules. This means that the nonprofit will ensure that users still have access to their accounts and genetic data. Procedures to protect customer privacy and measures to help prevent data breaches will also be in place.

In addition, data transfers will be restricted. TTAM will not sell or transfer genetic data in connection with a subsequent bankruptcy or change of control unless the recipient is a qualified domestic entity that adopts TTAM’s privacy policies and complies with all laws.

Furthermore, TTAM will establish a Consumer Privacy Advisory Board, implement privacy procedures, notify customers in case of material changes, and publish annual reports.

“I am thrilled that TTAM Research Institute will be able to continue the mission of 23andMe to help people access, understand, and benefit from the human genome. We believe it is critical that individuals are empowered to have choice and transparency with respect to their genetic data and have the opportunity to continue to learn about their ancestry and health risks as they wish,” 23andMe Co-Founder and former CEO Anne Wojcicki said in a statement.

TTAM Research Institute is a California-based nonprofit public benefit corporation led by Wojcicki. She paid $305 million for 23andMe’s assets, which include the DNA profiles of millions of former users. Regeneron Pharmaceuticals intended to acquire 23andMe for $256 million.

23andMe has existed since 2006. The company grew in popularity by selling DNA test kits that allowed users to build a genetic profile and do genealogical research. It also generated revenue by collaborating with pharmaceutical companies and selling anonymous data for medical research.

In 2023, the DNA testing company got caught in a heavy storm due to a massive data breach. Attackers were able to exfiltrate full names, dates of birth, location data, relationship status, health and pedigree data, and information voluntarily shared by users to contact descendants from seven million users.

Last year, 23andMe settled for $30 million with customers. Earlier this year, the company filed for bankruptcy to temporarily protect itself from creditors.