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 made in 23andMe in 2018 as part of a drug-development program.
Why would I refuse to give my spit away for a DNA report? Putting the data privacy issue aside for one moment, and the fact that I’d be handing over my most personal human information, I’d be afraid the service would tell me I was 100% Irish. I became an American citizen in 2023, and I’m very proud of being Irish, but I’d be upset if I were told I had no other interesting ancestry. Irish people are feisty and famous for enjoying a good work-life balance and, while literature and our history would suggest a surly menace lurking beneath the surface and a macabre obsession with the obituary pages, we tend to be pretty well-regarded overseas. There are, after all, 80 million people in the world who claim Irish ancestry (even though the Republic of Ireland only has 5.3 million people).
But here’s the real reason I’d never take an ancestry test: I, like more than 3 billion people, joined Facebook META and other social-media platforms over the last 15 years (Instagram, LinkedIn, Twitter/X and now Bluesky). It started off as a lark and a way of connecting with others, but the algorithms selling us products are both frightening and disturbing. 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.
Would you post your DNA on Facebook? Spare a thought for Henrietta Lacks. Since her death in 1951, Lacks’s cancer cells and DNA have been used as the basis for as many as 74,000 scientific papers. The Lacks family had no idea her cells were being used in experiments around the world. After discovering the truth, they expressed concern about what Lacks’s genes could reveal about her extended family. Of course, many companies that promise they won’t sell information to third parties can invite third parties to work on internal research — without breaking that policy. Other studies have shown DNA can be used to “reverse identify” people.
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.”
And let’s not forget the ever-persistent threat of hacking. Even if you trade off ancestry information for your DNA, do you want some bad actor 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.
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 the Department of Biology at ETH Zurich, a public research university in Zurich, and co-founder of the Genetics Company, a privately held 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. It’s one of the few assets that are equally distributed, and we should make sense of that.”
If you never knew what it’s like to feel like a billionaire, a unique and wonderful human being, I hope you do now.
