23andMe is a company that helps people learn about their ancestry and health by analyzing their DNA. However, the company is currently facing difficulties, including a drop in sales and leadership changes.1
If you’re a customer, you might wonder what happens to your DNA data and how it is used, especially in light of these challenges.
The Future of 23andMe & Your DNA: What’s at Stake?
Until recently, 23andMe’s whole board quit except for CEO Anne Wojcicki. In a memo to employees shared by the Wall Street Journal, Wojcicki expressed: “I am surprised and disappointed by the decision of the directors to resign.”(ref) Now, she’s considering selling the company, which could mean the DNA of 23andMe’s 15 million customers might be sold, too.
While 23andMe promises to ask permission before using data for research or ads, future owners might not do the same. The fine print says the company can change its policies anytime. A spokesperson admitted they can’t fully guarantee data privacy but said they would carefully consider any decisions affecting customer info and aim to honor current privacy commitments.
For years, DNA analysis has connected relatives, caught family secrets, and even helped catch criminals. Potential buyers might have different plans for using it, which should worry anyone who has used the service.
23andMe may hold health info, but unlike a doctor’s office, it isn’t bound by the Health Insurance Portability and Accountability Act (HIPAA). The company’s privacy policy states that customer data can be sold in a merger or acquisition.(ref)
Efforts to Rescue 23andMe
Wojcicki has previously saved 23andMe after the Food and Drug Administration (FDA) halted its health tests in 2013 until they were proven safe and effective.(ref)
Recently, she has considered various options to rescue the company, including separating the money-losing drug business from the consumer side.
Wojcicki is also interested in taking the company private, but the board rejected her initial offer.(ref) 23andMe has until November 4 to raise its share price to at least $1 or face delisting. As this deadline approaches, a sale seems increasingly likely—either to Wojcicki or another buyer.
Risks of Sharing Your Genetic Information
Certain groups may be interested in Americans’ genetic information. Insurers, for example, might want to know about genetic risks that could increase your costs.
Although the Genetic Information Nondiscrimination Act protects against discrimination by employers and health insurers, it doesn’t cover life, disability, or long-term-care insurance.(ref) This means a life insurer could deny you coverage based on a genetic marker linked to a health condition, even if you never develop it.
Then, there are drugmakers that can analyze your DNA to identify health risks and target you with ads for related medications.
Law enforcement also uses DNA data to solve cases. While 23andMe says it requires a warrant to share data, some companies have given police broad access. You could be implicated even if you haven’t committed a crime, as your DNA may connect to relatives.
Furthermore, information about your ethnicity, which is part of your genome, can be sensitive. This is why, in 2020, the U.S. military advised its personnel against using consumer DNA tests.(ref)
Consumer Genetic Privacy & the Limits of DNA Testing
If a test shows a higher risk for common conditions like diabetes or heart disease, you likely already know the lifestyle changes needed—eating well and exercising. For insurers, even a slight risk can make someone less appealing for coverage. This likely contributes to 23andMe’s declining sales, as many are less interested in learning about their ancestry than initially thought.(ref)
A 23andMe spokesperson stated that customers can download their data and delete their accounts. Companies must notify customers of any changes to terms of service and allow them to opt out, but these changes often take effect automatically, whether or not you’ve read the fine print.
Some states, like California, do offer consumers extra genetic-privacy rights through the Genetic Information Privacy Act and may allow DNA data to be deleted before a sale.(ref)
Dangers of DNA Data Misuse
DNA data misuse has existed since tests became available. When customers participate in drug-development research, their de-identified DNA data is shared with third parties, which can sometimes be traced back to their identities.
23andMe has also struggled to protect customer information, recently agreeing to pay $30 million to settle a lawsuit from a data breach in October 2023.(ref) A new owner may not have the same motivation to protect consumer data and keep it private.
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Nancy Maffia
Nancy received a bachelor’s in biology from Elmira College and a master’s degree in horticulture and communications from the University of Kentucky. Worked in plant taxonomy at the University of Florida and the L. H. Bailey Hortorium at Cornell University, and wrote and edited gardening books at Rodale Press in Emmaus, PA. Her interests are plant identification, gardening, hiking, and reading.
