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Committee reviews Genetic Information Privacy Act that would require express, itemized opt‑ins
Summary
The committee heard a detailed walk-through of H639, which would require direct‑to‑consumer genetic testing companies to obtain express, itemized opt‑in consent for uses including storage, third‑party transfers and marketing, allow revocation with 30‑day deletion, and bar disclosure to insurers and government without warrant or consent.
Representative Olson, the reporter for H639, told the committee the bill is a focused consumer‑protection measure aimed at the sensitive nature of genetic information. She said the legislation would create an opt‑in consent structure "the company must allow the consumer to opt in to each specific area," rather than the typical long, global consent forms.
The legislative counsel and bill presenters walked members through key definitions. The bill would regulate direct‑to‑consumer genetic testing companies and their service providers and defines "genetic data" to include DNA, RNA, SNPs and other derived information; it excludes properly deidentified data. Counsel explained that deidentified information must be kept in deidentified form and recipients contractually bound not to reidentify it except for limited internal testing of the deidentification process.
On enforcement and exceptions, counsel said the Vermont Consumer Protection Act would house enforcement, with the Attorney General empowered to adopt rules and bring civil actions; consumers may also bring private suits but would need to show damages. Several members asked for additional testimony from privacy experts, the Attorney General's office and law‑enforcement to clarify operational and jurisdictional questions.
The bill would require companies to honor revocation requests and destroy retained biological samples within 30 days, and to notify third‑party service providers to also delete consumer data. It would prohibit discrimination — such as denying goods or services or charging higher prices — against consumers who exercise their rights under the statute.
The presenters said the bill leaves clinical and diagnostic testing performed by licensed healthcare professionals under existing medical‑privacy rules and HIPAA, and it includes research exemptions for academic and government studies.
Committee members raised cross‑jurisdictional concerns: whether state rules apply to companies incorporated elsewhere, how residency determines applicability, and whether a patchwork of state laws is practical. Counsel said the bill applies to Vermont residents and that courts would likely have to resolve some conflicts of law.
Next steps: committee members asked for targeted testimony on deidentification practices, law‑enforcement implications, and the Attorney General’s enforcement capacity before advancing the bill.
