New Guidelines Urge Stronger Rights and Respect for Brain–Computer Interface Trial Participants

Researchers have been trying for decades to translate patterns of brain activity into usable commands. That work has produced experimental brain–computer interfaces (BCIs) that allow some people to operate robotic arms, navigate computers, and in limited cases generate speech-like output. But a new set of recommendations argues that the success of these systems depends not only on better electrodes and algorithms—participants in the trials also deserve clearer rights, more respect for their labor, and stronger protections.

The guidance was shaped in large part by Ian Burkhart, a BCI trial participant who says the standard ethics frameworks used for clinical research do not fully capture what it means to live for years with an implanted device. Jennifer Chandler, a law professor and neuroethicist at the University of Ottawa who helped develop the document, says BCI studies often ask more of volunteers than typical medical trials. Participants may have hardware embedded in their brains for long periods, and their involvement can require sustained physical commitment and intellectual problem-solving as they learn to use the system and help refine it.

Burkhart’s perspective comes from experience. After a 2010 diving accident left him paralyzed from the chest down at age 19, he volunteered in 2014 for what became the first clinical test of a brain implant intended to restore hand control. Surgeons implanted a 96-electrode array in a movement-related region of his brain. A cable connected the array to an external computer through a port that effectively “plugged in” at his head. Software then decoded his neural signals and relayed instructions to a second device: a sleeve of electrodes worn on his arm that stimulated muscles and enabled movement.

Early progress was incremental, but over time Burkhart learned to perform increasingly complex tasks during laboratory sessions, including pouring beads between containers, manipulating small objects, and even playing the video game Guitar Hero. The work was widely viewed as a breakthrough. Over a total of seven and a half years with the implant in place, Burkhart participated in two clinical trials that each ran for years. He describes the experience positively, while also saying that, with what he knows now, there are aspects he would approach differently.

In 2022, Burkhart co-founded the BCI Pioneers Coalition, a group designed to connect past and current BCI trial participants with one another and with researchers. Drawing on members’ experiences, the coalition has spent the last year crafting participant-centered recommendations intended for academic labs, clinicians, and private companies. The resulting guidelines, published Tuesday, include advice across 13 topic areas and emphasize protecting participants’ autonomy.

One major theme is recognition and compensation. Burkhart recalls spending two to three days per week in the lab for about four hours each visit—time commitments he says can resemble a part-time job. As he gained expertise, he also became able to provide targeted feedback on what worked and what did not, effectively functioning as an experienced collaborator. In some cases, he argues, participants may merit acknowledgment as coauthors on papers or as named contributors, though the guidelines note that not everyone will want that level of visibility.

Privacy is another central issue. BCIs attract public attention, and the document says researchers should prepare participants for potential media exposure—especially since concealing identities may not always be feasible. The privacy challenge deepens when it comes to neural data itself: teams must collect, interpret, and at least temporarily store brain signals. Burkhart says he was not especially concerned when his data largely reflected movement-related activity, but the guidelines highlight that the sensitivity of brain data can vary depending on what a device is designed to decode.

Why it matters

As BCIs move from small academic experiments toward longer trials and commercial development, the burdens on participants can grow—and so can the stakes around privacy, credit, and consent. Clearer expectations could change how trials are run, how volunteers are treated, and how their data are handled. The next test will be whether universities, hospitals, and companies adopt these recommendations as the technology—and public scrutiny—accelerates.