Sponsors (2)
The bill strengthens individual control and federal enforcement over consumer genomic data and adds privacy safeguards for research use, while leaving legal retention exceptions, imposing compliance costs, and allowing potential state-level regulatory fragmentation.
Consumers (including patients with chronic conditions) can access their genomic data and request deletion of accounts and destruction of biological samples with companies required to comply within 30 days, increasing individual control over sensitive genetic information.
Consumers gain a federal enforcement avenue because the FTC is granted rulemaking and enforcement authority to penalize noncompliant companies, improving the ability to seek remedies and encouraging compliance across the industry.
Patients and researchers benefit because genomic data shared for research must meet statutory deidentification standards and recipients must contractually commit not to reidentify individuals, reducing privacy risks when data is used for research.
Consumers may be denied deletion or destruction requests when their data or samples are subject to warrants, subpoenas, court orders, or other legal retention obligations, limiting control over genetic information in those circumstances.
Testing companies (especially smaller firms) may face increased compliance costs to implement access/deletion processes, contractual controls, and FTC-rule compliance, costs that could be passed on to consumers as higher prices.
Businesses and consumers could face inconsistent requirements and expectations because the bill preserves state law unless there is a direct conflict, creating potential regulatory fragmentation and compliance complexity across states.
Based on analysis of 2 sections of legislative text.
Requires DTC genomic testing companies to provide easy access, deletion, and sample-destruction mechanisms, notify consumers on acquisitions, and makes violations enforceable by the FTC.
Introduced March 5, 2025 by Bill Cassidy · Last progress March 5, 2025
Requires direct-to-consumer genomic testing companies to give consumers easy ways to access their raw genomic data, delete accounts and data, and request destruction of biological samples. Companies must provide clear notices about these rights and disclose that deidentified genomic data may be shared for medical or scientific research; acquisitions trigger consumer notice and require buyers to honor outstanding deletion/destruction requests. Violations are treated as unfair or deceptive acts enforceable by the Federal Trade Commission, which may issue implementing rules within a year.