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Senate bill aims to balance Montanans’ DNA and neurodata privacy with clinical research access
Summary
SB163 would extend state privacy protections to genetic and neurotechnology data while allowing limited waivers for clinical research; sponsors and industry grappled with consent timing, cross-border storage and enforcement during a lengthy committee hearing.
Senator Daniel Zolnikov opened Senate Bill 163 by describing two intertwined goals: clarify prior DNA privacy measures and add protections for emerging neurodata while allowing narrow research waivers. "You have the right to consent of it being collected, have the right to have it deleted," Zolnikov said, describing prior law that gave Montanans unusually broad control over genetic data.
Zolnikov told the House Energy, Technology and Federal Relations Committee that the bill pares back an absolute deletion right by creating a written-waiver process for clinical research and clarifies definitions for neurotechnology and neurodata. He said the waiver must be "expressed and informed written consent" obtained no sooner than 14 days after the initial biological sample collection and must be provided on a separate form in 12-point font that explains retention, sharing and deletion policies.
Industry supporters including Shane Scanlon of GlaxoSmithKline told the committee SB163 fixes statutory barriers that had prevented some clinical trials in Montana. "Senate Bill 163 provides a critical fix to ensure Montanans data privacy laws allow Montanans the ability to access those clinical trials while protecting their patient privacy," Scanlon said, adding that de-identified clinical research data and operational realities require tailored consent language.
Advocates including Don Cape of the Coalition for Safety and Justice urged protections for neural data and argued Montana should limit storage of collected genetic and neural data to the United States unless residents give consent. "The bill here brings to the forefront protecting the citizens from unauthorized, unknowing, monitoring," Cape said.
Committee members pressed the sponsor and witnesses on practical questions: how waivers will work in clinical settings where multiple forms are common; whether the law can prevent interstate transfers; and who can enforce violations. Zolnikov said the bill prohibits storage in countries sanctioned by the U.S. Office of Foreign Assets Control and allows transfer or storage outside the United States only with the resident's consent; he also clarified the attorney general has authority to enforce the law and may initiate civil actions.
The sponsor asked the committee to delay action briefly to refine definitions for "neurotechnology data" and ensure waiver language aligns with clinical practice. The committee closed the SB163 hearing without a vote that day.
