Mr. Schumer noted these companies often do not clearly disclose how a user’s DNA information is used. He alleged these companies are able to sell information to third parties, such as law enforcement agencies working on criminal cases or health payers looking to disqualify patients with preexisting conditions.
As an example, he said the DNA test provider AncestryDNA’s user agreement grants “royalty-free, worldwide, sublicensable, transferable license to host, transfer, process, analyze, distribute and communicate your genetic information for the purposes of providing products and services.”
To address this issue, Mr. Schumer asked the FTC to ensure companies that offer DNA test kits use transparent and fair privacy policy and terms of service agreements.
“Putting your most personal genetic information in the hands of third parties for their exclusive use raises a lot of concerns,” Mr. Schumer said. “There is no point to learning about your family tree if your privacy gets chopped down in the process.”
A spokesperson for AncestryDNA said the company does not sell DNA information without a user’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 spokesperson told NBC News.
A spokesperson from MyHeritage, another DNA test provider Mr. Schumer mentioned during the press conference, told Newsweek it has never provided genetic information to “any third party.”
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