The lack of federal neural data privacy laws for non-medical use of the data — medical applications are regulated by the Food and Drug Administration and are covered under the Health Insurance Portability and Accountability Act, or HIPAA — means there is nothing stopping companies from creating databases populated with brain scans from millions of consumers. Inspired to launch an organization dedicated to protecting the neural data of humans, Yuste partnered with a prominent human rights lawyer to establish the NeuroRights Foundation in 2021 and has since been engaging with lawmakers nationwide on the need for regulation. Absent strong regulation, data brokers could soon be able to sell neural data they have harvested and stored in databases cataloging individuals and their “brain fingerprints” on a mass scale, said Yuste, who is a professor of neuroscience and the director of the NeuroTechnology Center at Columbia University. Maria Cantwell (D-WA) has included a neural data privacy provision in the latest draft of a comprehensive data privacy bill she introduced in April, Yuste said. Jared Polis signed the nation’s first such law, which, like California, expanded the definition of “sensitive data” covered under the state’s privacy law to include data produced by the brain, spinal cord or nerve network. Companies’ solicitation, storage and sale of neural data is an emerging trend, but the practice is growing quickly and privacy and discrimination concerns abound, said Calli Schroeder, global privacy counsel at the Electronic Privacy Information Center. Neural data is already being harvested from humans — much of it from gamers and meditation practitioners — and sold to third parties, Yuste said in an interview. The group has made some inroads: Legislation expanding existing privacy protection laws to include neural data was signed into law by California Gov. While initially excited about how the discovery might help schizophrenics suffering hallucinations, Yuste’s euphoria dissipated once the breakthrough’s serious implications for humans — whose neural data could one day be manipulated in the same way — became clear to him. She is working with the United Kingdom’s data privacy regulator, the Information Commissioner’s Office, to help it develop guidance to companies on the issue. All but one of the companies “took possession” of the brain data collected, and more than half sold the brain data to unknown third parties. Companies already pulling data from consumers’ brains are now sharing the data with third parties, according to a report released by Yuste’s foundation in April. For now, many of the contexts in which brain data is used are “low level,” Yuste said, but the field is rapidly advancing. Under the law, consumers can now request, erase, correct and limit what neural data companies collect from them.
This Cyber News was published on therecord.media. Publication date: Thu, 03 Oct 2024 14:00:36 +0000