Mont. Privacy Law Author Seeks Neural and Student Data Protections

Montana should modify its biometric privacy law to allow people to volunteer for medical studies, Zolnikov said at the Energy and Telecom meeting. He filed SB-163 to fix that problem with the state’s 2023 Genetic Information Privacy Act and expand its scope to include neural data (see 2501160054).

The 2023 law required opt-in consent before a company can collect, use or disclose genetic data. SB-163 would amend the law, letting people waive their biometric privacy rights if they want to volunteer for a study, said Zolnikov. On the proposal to wrap in neural data, Zolnikov said the point is: "You own your ideas. You own your thoughts.” SB-163 would put "the individual -- the consumer -- in charge of the conversation."

Global pharmaceutical company GSK supports SB-163 because, under current law, researchers are unable to conduct clinical trials in Montana, said GSK lobbyist Matthew Helder. Montana Medical Association CEO Gene Branscum agreed that the 2023 law needs fixing because it puts "clinical labs and hospitals in conflict with the federal requirements."

“[I] didn’t mean to cause any mayhem of setting national precedents,” responded Zolnikov. “Sometimes you break things, but now you can share this across the nation … and we can pass it everywhere.”

At the Education Committee hearing, Zolnikov discussed his student privacy bill (SB-118), which would let parents request deletion of their child’s education data.

“When things are moving forward in a way you agree with or don't agree with, there should be the right of the individual to be considered,” he said. “To me, student data is not a massive database that we should identify … We cannot forget that this is not just some random piece of information. It's very important information to some people, which is why these protections are important.”

The bill has some caveats, such as letting the office of public instruction retain data so it can comply with federal or state laws for funding or similar purposes, Zolnikov said.

The American Civil Liberties Union supports the bill, said ACLU-Montana lobbyist Henry Seaton at the hearing. “Much of the data held by our educational institutions is very private and very sensitive, and to increase access to it beyond what's necessary makes unintended harms all but assured,” he said. “Most concerningly, it increases the opportunity for bad actors to hack and steal this information.”

Don Cape, who spoke in support of the bill on behalf of the Coalition for Safety and Justice, agreed. “Our data is us, and when it comes into the school with the advent of artificial intelligence and other things, it can be mismatched into various forms that would violate that particular student's data rights and privacy rights.”

Zolnikov said his bill would allow parents to delete their child’s data so it is not used in studies or trend analysis, even if it’s de-identified.

Seaton said the bill empowers parents and students to decide who can access and use their data. “Attending schools should not subject students to an increased risk that their privacy will be violated,” he said. “Children's data" is "a highly valuable resource, and we need to protect our kids from the potential harms that come in making data accessible.”

Zolnikov asked the committee to hold off on the bill to give him time to bring amendments to improve it.