Well, maybe. We do know that 23andMe has filed for bankruptcy and is looking for a buyer. What does that mean for your genetic data?

As reported by Mary Kekatos of ABC News, genetic testing and biotechnology company 23andMe filed for Chapter 11 bankruptcy this weekend.

Founded in 2006, the company became popular with millions of Americans who sent in samples of saliva with the promise of learning about their ancestry and genetic health predispositions.

However, following a class-action settlement from a data breach, the resignation of the entire board of independent directors, layoffs and its drug development division closure, the firm has experienced business troubles and said it may be looking for a buyer.

“The Company intends to continue operating its business in the ordinary course throughout the sale process,” 23andMe said in a statement this week. “There are no changes to the way the Company stores, manages, or protects customer data.”

That’s not making its more than 15 million customers worldwide feel any better.

“I don’t think they ever built sufficient consent into people sending them information, saying, ‘We’ll do our best to protect it, but we can’t promise,”‘ Dr. Arthur Caplan, a professor of bioethics at the NYU Grossman School of Medicine, told ABC News.

“So, what you might have thought was safe and secure is clearly not, as the bankruptcy is making clear now, but hasn’t been from the beginning,” he added.

Anya Prince, a professor at the University of Iowa College of Law with research interests in health and genetic privacy, said what happens to the data 23andMe collects is covered by the company’s privacy policy.

In the event of a bankruptcy or sale, a user’s 23andMe data can go to a new company or be sold in bankruptcy, Prince noted.

“The privacy policy also says that the new company has to follow the existing privacy policy, which sounds great, but the existing privacy policy also says that it can be changed at any time,” Prince told ABC News. “So, the new company could adopt the same privacy policy and then change it in ways that maybe the customers don’t like.”

That never happens, right? 😉

Even more importantly, this information is not protected by HIPAA. “Unlike your health records, which are covered by HIPAA, your electronic health records, and the kind of data you share with your doctor … 23andMe does business with you as a consumer, not as a patient,” I. Glenn Cohen, a professor of health law and bioethics at Harvard Law School said. “You don’t get those overall federal health privacy protections that we give, for example, to the data you share with your doctor.”

If you’re concerned about it, consumers have the option of deleting their account and asking for their sample to be destroyed, especially if they are in a state that has a genetic privacy law, such as California.

California’s Attorney General Rob Bonta put out a press release with steps on how to delete genetic data, destroy a test sample and to revoke permission for genetic data being used in research.

Of course, genetic data, unlike other forms of data, can’t be modified. So, it’s understandable that people are concerned about what will happen to their data with 23andMe to keep it from becoming 23andMe and everyone else. 😉

So, what do you think? Are you concerned about the 23andMe backruptct? Please share any comments you might have or if you’d like to know more about a particular topic.

Image created using GPT-4’s Image Creator Powered by DALL-E, using the term “robot scientist looking at a DNA sequence”.

Disclaimer: The views represented herein are exclusively the views of the authors and speakers themselves, and do not necessarily represent the views held by my employer, my partners or my clients. eDiscovery Today is made available solely for educational purposes to provide general information about general eDiscovery principles and not to provide specific legal advice applicable to any particular circumstance. eDiscovery Today should not be used as a substitute for competent legal advice from a lawyer you have retained and who has agreed to represent you.