MW 'Would you post your DNA on Facebook?' Why I'd never use 23andMe or any other DNA testing service

By Quentin Fottrell

'I'm tired of being the product'

You're worth a fortune.

I was sorry that 23andMe filed for Chapter 11 bankruptcy protection last week, but there would be a blizzard in Death Valley before I would ever use an online DNA kit company. I don't feel comfortable allowing my DNA to be used for research products, or being sold off as part of the bankruptcy proceedings to a third party. The Genetic Information Nondiscrimination Act prohibits employers or health insurers from using genetic information to assess your eligibility for a role or coverage, but critics say that legislation does not mention life insurance, disability or long-term care insurance. For those that have subscribed to these services, opt out of research programs and delete your data/account.

Even if you are happy to trade off ancestry information for your DNA, do you want "bad actors" to have access to it? In 2023, information from around 6.9 million people, half of 23andMe's 14 million customers, was hacked. "Roughly 5.5 million customers had their 23andMe DNA relatives profile files accessed in an unauthorized manner," the company told MarketWatch at the time. Some 1.4 million customers participating in the DNA "relatives feature" had their family tree profile information accessed. The spokesman said there was no evidence of a breach or data security incident within its systems. Hardly reassuring.

Would you post your DNA on Facebook? I, like more than 3 billion people, joined Facebook $(META)$ and other social-media platforms (Instagram, LinkedIn, Twitter/X and now Bluesky). It started as a way of connecting with others, but the algorithms selling us products are both frightening and disturbing because we are the products and I'm tired of being the product. Facebook probably knows more about me than any living person on this planet. I joined it willingly because I was enamored by the lives of other people. Truthfully, it's a great opportunity to show off. Not the best part of human nature. But signing up to 23andMe (ME) or Ancestry.com or other DNA sites? Literally, I'd be giving away the proverbial key to life.

Related: Why you should delete your 23andMe account. Here's the worst that could happen if your DNA data is exposed.

Reverse identifying people

Once again, you are the product. The services are tempting: It costs $130 for a health and ancestry service with 150 DNA reports or $69 a year for "premium" reports during the year. But do you know how valuable you are? Genetic-testing companies know. One study by researchers at Penn State and Cornell Universities found that more than 50% of people would only give up their genetic data if they were compensated financially. And yet people do it all the time to get a better look over the fence at their family tree. Nice work, if you can get it - especially if you consider big-money deals like the $300 million investment GlaxoSmithKline $(GSK)$ made in 23andMe in 2018 as part of a drug-development program.

Consider the case of Henrietta Lacks, a Black woman and a young mother who died in 1951 of cervical cancer aged 31. Her cancer cells and DNA were taken - without her consent during her cancer treatment - and used as the basis for as many as 74,000 scientific papers. The Lacks family had no idea her cells, which had continued multiplying outside of her body, were being used in experiments around the world. They expressed concern about what Lacks's genes could reveal about her family. In 2025, companies that promise they won't sell data to third parties can invite third parties to work on internal research - without breaking their policy.

Like other ancestry sites, 23andMe is at least explicit about how it uses your data. "If you agree to participate in 23andMe Research, you agree to let 23andMe researchers use your de-identified genetic and self-reported information to study a wide variety of research topics," the company says. "You will also have the opportunity to participate in research in different ways." What's more: "We may use your information to comply with applicable legal, licensing and regulatory obligations. If legally required, we may also need to share your information to comply with a law enforcement request." Other studies have shown DNA can be used to "reverse identify" people.

Your DNA is worth billions

In an emailed statement, a 23andMe spokesman told me that "any buyer will be required to comply with applicable law with respect to the treatment of customer data and any transaction will be subject to customary regulatory approvals." Customers will still be able to opt out of research programs and - crucially - delete their data from the platform and account. "We remain committed to our users' privacy and to being transparent with our customers about how their data is managed," the company said Monday.

DNA testing is also good for humanity - to find cures for diseases and develop drugs to treat them and warn people about their genetic predisposition to conditions such as Alzheimer's disease and diabetes. I'm glad that the police are using DNA sites to catch serial killers in cold cases, but I don't want to know whether I have any in my family. Other people get rude awakenings when they get their results - they find out they're adopted or, worse, that their father isn't their biological father, like this MarketWatch reader who told me he was the product of an affair and now wondered whether he was entitled to an inheritance from his wealthy biological father.

Your DNA is worth billions. Ernst Hafen, professor emeritus at ETH Zurich, a public research university in Zurich, and co-founder of the Genetics Company, a biotech company in Zurich-Schlieren, told Frontline Genomics, a news site that specializes in disease research: "Personal data and health data in particular are unique assets that we are discovering as individuals, and its one of the assets that is equally distributed amongst people. No matter where you're from, we are all billionaires in terms of our genome data." Do you know what it's like to feel like a billionaire, a unique and wonderful human being? If not, I hope you do now.

Don't give away your DNA.

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-Quentin Fottrell

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March 29, 2025 11:02 ET (15:02 GMT)

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