NEW YORK (AP) - U.S. Sen. Charles Schumer said Sunday he wants the Federal Trade Commission to scrutinize how companies that offer at-home DNA testing kits are handling the genetic data.
The Senate Democratic leader said he’s not trying to stop the testing or impede research, but he wants to make sure privacy policies are clear, transparent and fair to consumers.
“When it comes to protecting consumers from at-home DNA test kit service, the federal government is behind,” Schumer said. He added that “putting your most personal genetic information in the hands of third parties for their exclusive use raises a lot of concerns, from the potential for discrimination by employers all the way to health insurance.”
Various companies offer test kits as ways to learn more about one’s health, heritage or family.
Many say they have strict rules about sharing any personal information and don’t provide genetic data without scrubbing identities, getting users’ consent or receiving a court order.
One company, MyHeritage, said Sunday it has never sold or licensed DNA data to any third party without the user’s explicit, informed consent and never provides users’ personal information to any third party.
Kate Black, the privacy officer for 23andMe, said the company takes privacy seriously. “We do not sell individual customer information nor do we include any customer data in our research program without an individual’s voluntary and informed consent.”
The genealogy company Ancestry said in a statement that it looks forward to working with Schumer and his colleagues to protect customer privacy.
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