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At this very moment, someone, somewhere, might be exposing your intimate genetic data. They probably don’t realize they’re doing it. They may not even know who you are.
But they have valuable segments of your genetic code — data that tell a story about your family, your medical history, and all sorts of potential vulnerabilities. If your DNA sample is submitted to a genetic testing company, they may be sharing that data with countless researchers, law enforcement, and even the general public.
Someday, that information could be used against you.
Can you stop them? Can you protect what’s rightfully yours?
Unlikely.
We believe it is time for policymakers to protect Americans against this risk. The law should make it more difficult for companies to share your genetic data, and it should ensure those data are encrypted and protected in transit. Companies should employ review boards to approve data collection, storage, and sharing protocols, just as federally funded researchers need the approval of panels known as Institutional Review Boards to conduct research in humans.
Never has this challenge been clearer than...