What Happens To Your Genetic Data When Companies Like 23andMe Go Bankrupt?

Leading Genetic testing company, 23andMe Holding Co. (ME), recently entered Chapter 11 bankruptcy, leaving millions of consumers questioning the destination of their sensitive genetic information. With attorneys general from across the US advising clientele to secure their data, the issue of personal information housed by corporations suddenly takes on a new level of urgency. A digital treasure trove of over 15 million genetic profiles held by the company may well be auctioned off to meet creditors’ demands. This situation exposes an alarming gap in the U.S. legislation about privacy, as there isn’t a federal level comprehensive privacy law and citizens don't have total control over their personal information, according to Sara Gerke, associate professor of law at the University of Illinois Urbana-Champaign. 23andMe, like similar firms, has privacy policies determining the fate of customer data during bankruptcy. In an announcement to its customers, the company stated any potential buyer would have to adhere to existing laws pertaining to customer data treatment. However, this doesn’t necessarily allay customer worries. A new buyer may alter the privacy agreement. It may also have subpar cybersecurity protocols, and customers may lose out on any benefits from the initial arrangement with 23andMe. Legal complications of genetic data from consumer testing firms are a gray area, as medical information rules under HIPAA don’t fully apply. While certain customer protections are involved in bankruptcy proceedings, the primary focus is still repayment of creditors. This may pressurize bankruptcy courts into approving deals focusing on financial returns, even when sensitive data are at stake. Experts advise consumers to take several steps in safeguarding their sensitive information if the company holding the details face financial difficulties. Without stronger federal protection, Americans are increasingly at risk of having their most sensitive biological data exchanged without their thorough consent. The entire situation surrounding 23andMe's bankruptcy highlights the value and transferability of such private data, demonstrating its potential to pass through multiple hands long after the initial company has ceased to exist.