Anonymous DNA Testing Is Here. But Who Wants It?
A new startup is catering to people who want more privacy—but that means giving up a chance to find relatives
Brianne Kirkpatrick interacts with plenty of people concerned about privacy. One time, when the licensed genetic counselor was helping a client look over potential relatives based on DNA matches in the ancestry website FamilyTree.com, she found one with an unusual name: “Not Saying.”
In mid-September, the startup Nebula Genomics announced it would be offering anonymous gene sequencing, which allows consumers to get their DNA tested without ever personally identifying themselves. The company is capitalizing on growing consumer distrust of genetic testing companies and fears that the information people obtain about their disease risk might be used against them. Consumers buying anonymous genetic testing would, like other genetic testing consumers, likely be using the product to identify genetic markers of disease risk and ancestry — only without linking their genetic information to their identifying information. (Nebula is co-founded by Harvard geneticist George Church, who recently apologized for associations with Jeffrey Epstein.)
“People are beginning to care a lot more about what happens with their data and the services that they use, and they want to have transparency.”
“I understand why it would be attractive to a consumer because of the promise of anonymity,” Kirkpatrick says. But it’s not clear that anonymous testing will give most consumers what they really want, and critics fear that the potential to improve human health is lost in the conversation about consumer distrust.
Of all the reasons people choose to have their DNA sequenced, the top reason is to learn where they’re from. “Ancestry testing is the most attractive direct-to-consumer product by far,” says Robert C. Green, a medical geneticist and professor at Harvard University who co-authored a study showing 74% of people who use personal genetic testing were “very interested” in ancestry. (Green receives compensation for advising several competitors of Nebula.)
