A bipartisan push to protect people’s brain privacy is gaining steam again this year, with legislation introduced in two states and expected in more.
The momentum follows last year’s passage of landmark laws in California and Colorado in response to concerns that companies behind new wearable technology could capture, interpret, sell and potentially manipulate people’s neural data.
The Montana Senate on Tuesday unanimously passed a neural data protection bill, sending it to the House. A related bill is pending in Massachusetts. A third is in development in Illinois.
Montana Sen. Daniel Zolnikov’s (R) bill would update the state’s Genetic Information Privacy Act to include neural data.
“Montanans believe that privacy is a fundamental constitutional right,” Zolnikov said in a statement. “This bill ensures that the privacy of their neural data – their literal thoughts – is safeguarded amid rapid advances in technology.”
Zolnikov’s bill warns that consumer wearables, unlike medical devices, are not covered by federal health privacy laws. So a company could potentially collect sensitive brain data from an individual that reveals “information about health, mental states, emotions, and cognitive functioning,” according to the legislation.
Neural data is defined as information collected from a person’s central or peripheral nervous system. Under the Montana bill, companies would have to obtain “express consent” for the collection or use of neural data.
Zolnikov pointed to Elon Musk’s company Neuralink as an example of emerging brain technologies. Neuralink sells an implantable device designed to help people who are paralyzed or otherwise have limited mobility use a computer.
“Technologies like the Neuralink brain-computer interface developed by Elon Musk sound like something out of science fiction, but they are on track to quickly become a major source of data on what’s happening inside our brains,” Zolnikov said in his statement.
Neuralink did not immediately respond to a request for comment. While Neuralink patients are likely covered by federal health care privacy law, there is growing concern about the proliferation of unregulated, consumer-grade neurotechnology devices.
A report last year from the Neurorights Foundation found that there were at least 30 such devices already on the market, including headbands to assist with sleep and headsets designed to treat depression.
“This is deeply intimate information to entrust companies with,” the report said. “Currently unprotected by regulation, neural data is just as sensitive as protected medical data.”
Apple and Meta are among the companies pursuing neurotechnology, which a market report projected to become a $15 billion industry last year.
Advocates for neuro data protection laws say the technology has the potential to improve everyday lives and help people with limited mobility or speech. But they fear that without restrictions on how the data is used, people’s privacy and even autonomy could be exploited.
A 2019 study detailed how researchers at Columbia University were able to control the behavior of mice by sending signals to their brains. The lead researcher, Rafael Yuste, told Colorado lawmakers last year that he experienced an “Oppenheimer moment” during that study. He went on to become cofounder of the Neurorights Foundation.
States are the proving ground for neuro rights bills as federal privacy legislation has stalled in Congress. The effort builds upon broader consumer data privacy laws being passed in 19 states since 2018.
Chile in 2021 became the first country to protect neural data through a constitutional amendment. The issue earned more attention in 2022 when famed film director Werner Herzog released “Theater of Thought,” a documentary that explored the “philosophical, ethical, and social implications of fast-advancing neural technology,” according to a summary on IMDb.
Last year, a Fort Collins, Colo., neurologist brought the issue to Rep. Cathy Kipp (D), who introduced legislation that led to the nation’s first law to protect neuro rights. California’s bill passage came next.
“The privacy policies of these companies who are collecting brain information today are inadequate, and that’s the urgency of putting safeguards in place right now to protect this brain data, protect consumers,” Sen. Josh Becker (D), the author of the California law, told Pluribus News in August.
This year, Montana, Illinois and Massachusetts are leading the way. The Massachusetts bill is a sweeping 44-page privacy measure that incorporates heightened protections for neural data.
“Neural data can reveal highly sensitive information, such as a person’s mental state, emotions, and cognitive functions, leaving consumers vulnerable,” Rep. Andres Vargas (D) and Simon Cataldo (D), who sponsored that measure, said in a statement. “That is why we filed the Neural Data Privacy Protection Act, to ensure that this groundbreaking technology is developed ethically, safeguarding both innovation and individual rights.”
The Illinois bill, which Rep. Anne Stava-Murray (D) is drafting, would amend existing privacy statutes to include brain data.
“[I]ndividuals should have control over how and when others access and use such sensitive and private information,” Stava-Murray said in a statement.