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Committee hears sponsor, health industry and advocacy groups on DNA/neurodata privacy bill
Summary
Senate Bill 163 drew testimony from the sponsor, pharmaceutical manufacturers and advocacy groups. The bill would create rules for consent, storage and cross‑border transfer of genetic and neurodata; the sponsor signaled amendments and asked for additional drafting time.
Senator Daniel Zolomikov, sponsor of Senate Bill 163, told the House Energy, Technology and Government Affairs Committee his bill would give individuals ownership rights over genetic data and emerging neural data and impose consent, deletion and storage rules for how that data is used.
“Your data is your data,” the sponsor said in a lengthy opening, arguing that DNA and neurotechnology data require distinct protections and asserting that the bill would allow Montanans to control whether pooled samples are retained and used. The sponsor described provisions that require “expressed and informed written consent” and said the waiver process cannot begin sooner than 14 days after an initial biological sample collection.
Industry and advocacy witnesses spoke in support but asked for clarity. Shane Scanlon, representing GlaxoSmithKline (GSK), said the Hamilton manufacturing facility wants to resume clinical trials and that existing rules can impede trial sponsors from accessing de-identified samples for research. Don Cape of the Coalition for Safety and Justice supported protections for neural data and stressed national-security and privacy concerns: “Once it leaves the United States, it is no longer governed by U.S. law,” he said, urging that data collected in the state remain subject to U.S. controls.
Lawmakers questioned enforcement, cross‑border transfers and whether private lawsuits would follow. The sponsor confirmed the bill contains authority for the Montana attorney general to initiate civil actions for violations and said he had debated but not included a broad private right of action because of concerns about mass litigation. He also said he expects to offer amendments that further define “neurodata” and to refine waiver language; he requested that the committee delay final action to allow additional drafting.
Key provisions discussed by witnesses and the sponsor include: a requirement that informed written consent be obtained no sooner than 14 days after initial biological-sample collection; a separate, conspicuous consent form (12-point font minimum) describing retention, sharing and the potential for whole‑genome sequencing; and a prohibition on storing genetic or neural data in countries sanctioned by the U.S. Office of Foreign Assets Control or designated foreign adversaries unless the resident consents.
Committee discussion did not include a final vote. The sponsor said he would circulate amendments and requested additional time for technical adjustments.
