SB 863, the Genomic Data Protection Act, would create federal consumer privacy rights for people who use direct-to-consumer genomic testing services. The bill requires companies to provide a simple way for consumers to access their genomic data, delete their accounts and associated genomic data, and request destruction of their biological samples. It also requires companies to give clear notice about these rights, including notice that deidentified genomic data may still be used or shared for medical or scientific research, and to notify consumers before a company is sold or acquired.
The bill sets deadlines for companies to act on deletion or destruction requests within 30 days and to confirm completion within 30 days after that action. It also addresses pending deletion requests during a corporate acquisition, placing responsibility on the acquiring entity to complete the request. The bill exempts data that must be retained because of a warrant, subpoena, court order, or other legal or regulatory requirement, and it authorizes the Federal Trade Commission to enforce the law as an unfair or deceptive practice under the FTC Act. The FTC may also issue implementing rules within one year of enactment.
Impact
If enacted, the bill would add a new federal framework governing the handling of genomic data by direct-to-consumer testing companies, including consumer access, deletion, and sample-destruction rights. It would affect companies that manufacture, sell, analyze, maintain, or acquire genomic testing data, while excluding health care professionals acting for diagnosis or treatment. The bill also preserves existing federal law and generally preserves state law, preempting state requirements only where they directly conflict with the federal standard.
Sentiment
There is no recorded committee transcript or vote history in the provided materials, so there is no formal evidence of support or opposition beyond the bill’s introduction. The bipartisan sponsorship by Senators Cassidy and Peters suggests an intent to frame the measure as a consumer privacy and data-protection bill rather than a partisan proposal. Overall, the bill appears to be presented as a targeted privacy safeguard for genomic testing consumers.
Contention
The main policy tension in the bill is between consumer deletion rights and the continued use of deidentified genomic data for research. The bill allows companies to retain and share deidentified data for medical or scientific research, which may concern privacy advocates who want stronger deletion rights, while research and industry stakeholders may view that exception as necessary. Another possible point of contention is the scope of FTC enforcement and the bill’s treatment of company acquisitions, which imposes obligations on acquiring entities and may raise compliance concerns for the direct-to-consumer genetics industry.