As Scientists Show They Can Read Inner Speech, Brain Implant ‘Pioneers’ Fight for Neural Data Privacy, Access Rights

It was an easy decision for J. Galen Buckwalter, a 69-year-old quadriplegic living in Southern California, to undergo a craniotomy in 2024. The operation — which involved inserting 384 electrodes in his brain and a large titanium plate in his skull — allows researchers to record data about how his neurons operate, potentially helping future paralysis patients.

The hard part, Buckwalter says, has been giving up the right to access and own his neural data and feel assured that it will be kept private.

Buckwalter has been a quadriplegic since diving into a river and hitting his head on a submerged rock a few days before his 17th birthday. When given the chance to participate in a California Institute of Technology (Caltech) study designed to decode how his neurons signal his hands to grasp objects, Buckwalter leapt at the opportunity to improve the lives of future “young, dumb kids like I was.”

As the researchers’ work studying his brain progressed, and they dug deeper into capturing how, where and when his individual neurons fire, Buckwalter began to think twice about the lack of specific protections outlined in the informed consent form he signed to take part in the study. He decided he wants the right to access and own his data and have more explicit guardrails in place to protect his privacy.