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Direct-to-Consumer Genetic Testing: The Law Must Protect Consumers’ Genetic Privacy

Consumers that use direct-to-consumer (DTC) genetic testing generate highly sensitive data about themselves and their biological relatives. The regulatory gap around DTC genetic testing means there is no legal guarantee that this information will remain private. Rather, as the marketplace for health technology continues to evolve, existing health privacy protections leave consumers’ sensitive data exposed. Lawmakers must step up and close the regulatory gap by making sure that genetic information remains confidential, with detailed requirements to allow for authorization to disclose the information to specific recipients but in a way crafted to protect the privacy of non-consenting related consumers.

Consumer Reports developed this white paper to inform federal and state policymakers about the need to better protect consumers’ genetic privacy due to gaps in the current law. This white paper will:

  • explain what genetic testing is;
  • what privacy concerns are raised by direct-to-consumer genetic testing;
  • what security concerns are raised by direct-to-consumer genetic testing; 
  • demonstrate why such additional protections are needed to protect the privacy of consumers’ genetic information; and
  • recommend policy approach to protect the privacy of genetic data.