On Sunday, Sen. Chuck Schumer called for additional scrutiny over the home DNA test industry. He states that those who use the popular testing kits may see their genetic information sold to third parties, as many of the terms and conditions associated with the services are unclear regarding how the data can be used.
During a press conference, Schumer discussed “the kits where you swab your cheek or maybe spit into a little vial” to have the DNA analyzed. The service is offered by companies like 23andMe, Ancestry, and MyHeritage.
“Here’s what many consumers don’t realize, that their sensitive information can end up in the hands of unknown third-party companies,” Schumer stated. “There are no prohibitions, and many companies say that they can still sell your information to other companies.”
“Now this is sensitive information and what those companies can do with all that data, our sensitive and deepest information, your genetics, is not clear and, in some cases, not fair and not right,” the senator added.
Schumer is calling on the Federal Trade Commission (FTC) to “take a serious look at this relatively new kind of service and ensure that these companies can have clear, fair privacy policies.” He expressed concern that the businesses may be able to sell or share genetic information with third parties without the informed consent of the customer.
All three of the companies slashed the prices of their DNA kits as the holiday shopping season kicked off, with Schumer’s remarks coming just one day before Cyber Monday.
He said, “The last gift any of us want to give away this holiday season is our most personal and sensitive information.”
Schumer did say that he didn’t believe the DNA companies were “nefarious,” just that “they are brand new and they need safeguards.”
According to NBC News, MyHeritage provided a statement, saying, “Unlike other companies, MyHeritage has never sold or licensed DNA data to any 3rd party,” adding that they would “never sell or license DNA data to insurance companies.”
The statement from MyHeritage also included a link to a page on Ancestry’s website that announced a “collaboration” with Calico, a research organization, whereby “AncestryDNA can provide access to a unique combination of resources that will enable Calico to develop potentially groundbreaking therapeutic solutions,” which includes Ancestry’s “growing genetic databases.”
Ancestry said in a statement, “We do not sell your data to third parties or share it with researchers without your consent,” adding, “You may request that we delete your data or account at any time.”
23andMe’s website says the company “will not sell, lease, or rent your individual-level information (i.e., information about a single individual’s genotypes, diseases or other traits/characteristics) to any third-party or to a third-party for research purposes without your explicit consent.”