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Senate advances Genetic Information Privacy Act with express‑consent and deletion rights
Summary
The Senate ordered third reading of H.639 after the Economic Development Committee reported amendments that clarify consent, a 60‑day cure period for enforcement claims, and protections preventing disclosure of genetic data to insurers, employers or government without a warrant; the act becomes effective July 1, 2026.
The Senate ordered third reading of H.639, the Genetic Information Privacy Act, after the Economic Development Committee described amendments intended to tighten consent and enforcement provisions.
Senator Clarkson (Windsor District), reporting for the committee, said the bill creates a new genetic data privacy chapter in Title 9 and requires direct‑to‑consumer genetic testing companies to provide clear privacy terms, obtain express consent before selling, marketing or transferring genetic data, and allow consumers to revoke consent and request deletion. "This bill... will provide among the strongest genetic privacy protections for consumers in the world," the senator said on the floor.
Major elements reported by the committee include: express consent for secondary uses and transfers, a 30‑day requirement for companies to honor deletion or destruction of biological samples after a revocation request, contractual obligations on service providers to delete data when contracts end, and a prohibition on disclosure to entities that make decisions about health insurance, life insurance, disability insurance or employment. The committee added two amendments: one to clarify that the restriction on transferring data outside the U.S. applies to genetic data and biological samples (not biometric data) and another to create a 60‑day cure period—requiring a consumer to notify a company and allow 60 days to correct an alleged violation before filing suit.
A senator raised a concern that express‑consent mechanisms could become buried in terms and asked whether consent could permit storage in foreign jurisdictions or those designated as foreign adversaries; the presenter said "express consent" is defined to avoid a blanket checkbox and that the committee intends the language to prevent simple acceptance of all terms without clarity. The presenter agreed to consult legislative counsel for precise wording and senators accepted the committee’s recommended amendments.
The committee reported a 5‑0 vote to advance the bill; the act is set to be effective 07/01/2026 under the reported language.
Sources: economic development committee report and floor Q&A identifying consent requirements, deletion timelines and enforcement cure period.
