It’s in our genes to be suspicious of fine print.
So, with the holiday season in full swing, Sen. Chuck Schumer on Sunday called for more scrutiny into popular DNA testing kits — saying unknowing customers may be putting their genetic information at risk of being sold to third parties.
“These are the kits where you swab your cheek or maybe spit into a little vial send it back to a company and in return they’re unravel your DNA,” Schumer, D-N.Y., said at a press conference late Sunday morning.
Schumer cited the rising popularity of home genetic kits and ancestry services such as Ancestry, 23andMe and MyHeritage and said some of their terms of service agreements weren’t clear on just what companies could do with your genetic information.
“Here’s what many consumers don’t realize, that their sensitive information can end up in the hands of unknown third party companies,” he said. “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,” he added.
The senator said he was calling on the Federal Trade Commission to “take a serious look at this relatively new kind of service and ensure that these companies can have clear, fair privacy policies.” He added that his concern was over company’s ability to sell or share genetic information with third parties without a customer’s informed consent.
Schumer’s remarks came one day before major Cyber Monday sales, but days after all three companies had slashed prices for their kits for the holiday season.
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“The last gift any of us want to give away this holiday season is our most personal and sensitive information,” he said.
He added that he did not think the industry was “nefarious,” but that “they are brand new and they need safeguards.”
MyHeritage said in a statement to NBC News that, “Unlike other companies, MyHeritage has never sold or licensed DNA data to any 3rd party” — adding it would “never sell or license DNA data to insurance companies.”
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MyHeritage’s statement linked to an Ancestry.com page that notes they teamed up with a third-party firm to do genetics research.
Ancestry’s website also says the company, with your consent, “may also use your information in genealogical or genomic research projects, to improve or develop new products and services, and for internal business purposes.”
In a statement, a spokesman for Ancestry said, “We respect and agree with Sen. Schumer’s concern for customer privacy and believe any regulation should match the commitments we make to our customers.”
The statement added, “We do not sell your data to third parties or share it with researchers without your consent” and “you may request that we delete your data or account at any time.”
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23andMe says on its website that 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.”