Once They Are Tested, Can Genes Stay Private?

In the last decade, the cost of sequencing the human genome has dropped significantly, enabling the growth of a wide range of direct-to-consumer genetic testing. Companies now offer consumers a chance to “meet your genes,” “get the most out of your DNA”, and “discover your family history.” But when curious consumers use these companies to explore their ancestry or risk of genetic disease, who else is granted access to that genetic information? Leading direct-to-consumer genetic testing companies recently expressed their commitment to following newly establish industry principles on privacy protection. But a recent study conducted by researchers at Vanderbilt University, which looked at policies from nearly one hundred direct-to-consumer genetic testing companies, has found that the policies fell far short of the principles endorsed by the Federal Trade Commission (FTC). As part of the FTC’s exercise of its authority to stop advertising…

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