FTC may be investigating 23andMe, other DTC genetic testing firms over data privacy

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The Federal Trade Commission is reportedly investigating various direct-to-consumer genetic testing companies, including market giants 23andMe and Ancestry.com, over concerns related to data sharing and privacy.

The technology business magazine Fast Company learned of the potential probe after issuing a Freedom of Information Act request to the FTC in May seeking records pertaining to 23andMe and Ancestry.com.

The FTC denied Fast Company's FOIA request,  writing in a letter that any records "would be exempt from disclosure … because disclosure of that material could reasonably be expected to interfere with the conduct of the Commission's law enforcement activities" and citing exemption 5 U.S.C. 552(b)(7)(A), which often relates to ongoing investigations.

In response to Fast Company's request for comment on a potential investigation, an FTC spokesperson said, "FTC investigations are non-public, and so typically we do not comment on an investigation or even whether we are investigating."

Here are four things to know about the potential investigation:

1. Fast Company attributes the potential FTC probe to U.S. Senator Chuck Schumer, D-N.Y., who urged the agency to investigate DTC genetic testing companies in November. Mr. Schumer noted these companies often do not clearly disclose how a user's DNA information is used and alleged these companies are able to sell information to third parties, such as law enforcement agencies.

2. In response to Mr. Schumer, the FTC wrote that it "cannot comment on whether we are investigating specific companies," but shared his interest in ensuring DTC genetic testing companies are transparent about how they collect and use genetic data. In December 2017, the FTC also released a blog post advising consumers to consider privacy implications before purchasing at-home genetic tests.

3. Joel Winston, an attorney specializing in privacy law, told Fast Company he supported the potential FTC probe, and suggested companies that have failed to inform customers on how they handle and share genetic data might be prohibited from "using, sharing, or selling any such DNA data in its possession."

"DNA data is the most important data you own. Your DNA is you," he wrote in an email to Fast Company. "An enforcement action by the FTC would send a clear message that for-profit companies cannot use the fine print to quietly take an ownership interest in their customers' DNA."

4. A spokesperson from Ancestry.com declined Fast Company's request for comment on the alleged FTC investigation, but said, "Protecting our customers' privacy is our highest priority … We do not and will not sell DNA data to insurers, employers, health providers or third-party marketers and will only share DNA data with researchers if the customer has consented."

A spokesperson for 23andMe on June 1 told Fast Company a comment was forthcoming. Fast Company said it has yet to receive a response as of press time.

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