ILLINOIS — Illinois is joining a coalition of 26 other states and the District of Columbia to challenge a controversial move by genetic testing company 23andMe, which may sell highly sensitive consumer DNA data as part of its ongoing bankruptcy proceedings.
The states are asking the court to prevent the sale of personal genetic data, citing privacy violations and ethical concerns. As outlined in the lawsuit, many of the company’s 15 million users — especially those who joined before 2022 — never explicitly consented to having their data sold to third parties. This, Illinois officials argue, represents a betrayal of trust and a potential violation of existing privacy laws.
Why Illinois Is Taking Action
The lawsuit comes after 23andMe filed for Chapter 11 bankruptcy, raising alarms that its most valuable asset — its massive genetic database — could be monetized without sufficient legal safeguards. Illinois, known for its strong privacy legislation including the Biometric Information Privacy Act (BIPA), has taken a clear stand that genomic information deserves the same protections as biometric data like fingerprints or facial scans.
“Your DNA is your identity,” the editorial board at the Chicago Tribune emphasized. “It’s not something that should be bought and sold.”
What’s at Stake for Illinois Residents
Many users who paid for 23andMe’s services were seeking ancestry reports or health insights. But unlike an email address or even a phone number, DNA cannot be changed, and it can reveal intimate information about an entire family — including those who never opted into the service.
According to the lawsuit, more than 2 million people have requested data deletion in recent months, demonstrating just how widespread consumer concern has become.
Company Response and Legal Challenges
23andMe contends that any data sale would still comply with existing privacy terms and protections. However, Illinois and other states argue that retroactively applying new terms to old agreements is misleading — especially when it involves immutable personal data.
There are also fears that even if users were told their data would be protected, there’s no clear enforcement mechanism to guarantee it under current law.
Who May Take Over 23andMe?
Adding to the uncertainty, The Wall Street Journal reported that a nonprofit linked to company co-founder Anne Wojcicki may be preparing to acquire 23andMe, pending court approval. But Illinois officials maintain that regardless of who ultimately controls the company, the sale of DNA data without clear and explicit consent is unacceptable.
A History of Privacy Leadership
Illinois has long championed digital and biometric privacy. In fact, its BIPA legislation has served as a national model, requiring companies to obtain written consent before collecting or selling biometric identifiers. Legal experts say this case could set a major precedent for how DNA and health-related data are treated under bankruptcy and privacy law going forward.
Do you think companies should be allowed to sell your DNA if you’ve used a genetic testing kit in the past? Share your thoughts in the comments on ChicagoSuburbanFamily.com or send us your perspective.
