(NewsNation) — DNA testing companies that offer direct-to-consumer services, like 23andMe and AncestryDNA, tend to be a one-off for customers.
Once they have ordered a testing kit, mailed in their saliva and received results, consumers may not return to purchase other services.
23andMe, which describes itself as “a mission-driven company” that “(uses) data to revolutionize health, wellness, and research,” announced the completion of its reverse stock split Wednesday.
A reverse stock split reduces the number of shares a company’s shareholders own — a move market players generally do not favor.
The biotech company’s independent board of directors resigned in September.
“While we continue to wholeheartedly support the Company’s mission and believe deeply in the value of the personalized health and wellness offering that you have articulated, it is also clear that we differ on the strategic direction for the company going forward,” the board wrote in a letter, which the 23andMe released online.
23andMe has the genetic data of more than 15 million customers who use their DNA testing services. With a potential sale of the company looming, what will happen to the privacy of the users’ data as a new owner moves in?
What will 23andMe do with customers’ data after the sale?
Healthcare information is typically protected by the federal government under HIPAA, formally titled the Health Insurance Portability and Accountability Act. But it does not apply to direct-to-consumer companies.
About 80% of 23andMe’s customers agree to having their genetic data analyzed for medical research upon signing up for the service, NPR reported.
A spokesperson for 23andMe would not comment to NPR on what will happen to genetic data, except to express the company’s commitment to privacy. “For our customers, our focus continues to be on transparency and choice over how they want their data to be managed,” Andy Kill told the news outlet earlier this month.
The company partners with a pharmaceutical drugmaker, GlaxoSmithKline, to develop new treatments for diseases using anonymous customer data.
Customers can opt out of their data being studied, however.
“I hope my genetic data isn’t misused in some way. I do wonder what exactly they intend to do with it all,” said one customer, Chenedy Wiles, to NPR. “The company has undergone so many changes and so much turmoil that they need to figure out what they’re doing as a company.”
How to delete your data from 23andMe
Users can delete their data from 23andMe’s website by:
- Logging into their account
- Clicking on “Settings” under their profile
- Scrolling to the “Account Information” section
- Selecting “Delete Your Account”