Speaking at a news conference, Schumer said the terms of service agreements are not clear and could allow the companies to sell highly personal, detailed information about one’s genetics and DNA to third parties without the user’s full consent.
“Here’s what many consumers don’t realize, that their sensitive information can end up in the hands of unknown third-party companies,” Schumer said, according to NBC News. “There are no prohibitions, and many companies say that they can still sell your information to other companies.”
He added: “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.”
Schumer said the FTC should investigate the business practices of companies that conduct the DNA tests.
“When it comes to protecting consumers from at-home DNA test kit service, the federal government is behind…That is why I am asking the Federal Trade Commission to take a serious look at this relatively new kind of service and ensure that these companies have clear, fair privacy policies and standards for all kinds of at-home DNA test kits,” Schumer said, according to the Staten Island Advance.
Schumer singled out AncestryDNA’s fine print, which says it has the right to “communicate your genetic information for the purposes of providing products and services.”
Ancestry DNA told the New York Post it doesn’t sell information without the customer’s consent.
“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 company said.
A recent Gizmodo report analyzed the terms and conditions of several DNA test companies and found these companies can claim ownership of one’s DNA — and who else can own the DNA and for what purposes is unclear — and DNA information can get hacked.
“It’s basically like you have no privacy, they’re taking it all,” Joel Winston, a consumer protection lawyer, told Gizmodo. “When it comes to DNA tests, don’t assume you have any rights.”