Advocates living with brain-computer interfaces (BCIs) are calling for greater oversight and control over their personal neural data, informed consent, device ownership, and long-term care.
On November 10, Ian Burkhart, founder of the BCI Pioneers Coalition, a community of people with BCI implants, released “OUR BCI: Recommendations for Ethical Implanted BCI Research.” The 13-page document presents recommendations for researchers, sponsors, ethics boards, and technology companies working at the intersection of neuroscience and technology, outlining ways to uphold ethical standards and participant autonomy throughout BCI clinical trials and data-collection programs.
Significantly, the OUR BCI recommendations are designed to evolve. They will be reviewed every 24 months, with additional participants from implanted BCI trials invited to contribute.
Following a 2010 diving accident that resulted in a C5 spinal cord injury, Burkhart became the first person to restore movement to a paralyzed limb using an implanted BCI connected to functional electrical stimulation. His BCI implant was developed through a collaboration between Battelle, through its NeuroLife project, and The Ohio State University, using a microelectrode array manufactured by Blackrock Neurotech (the NeuroPort Utah Array).
As BCIs move closer to global commercialization, the lack of policy, government, and ethical standards has been discussed within the United Nations and Congress, but no action has been taken to implement laws or ethical standards across the board.
“People with disabilities cannot simply be the justification for neurotechnology while being left out of the decisions that determine how it is developed, regulated, and made available,” said Burkhart in an email to The Debrief. “People with lived experience need meaningful roles in setting the priorities, evaluating the risks, and defining what responsible access looks like.”
The recommendations took a year to develop and involved researchers and education specialists from York University and the University of Ottawa. The initiative addresses the entire research process, from recruitment and informed consent to researchers’ responsibilities after a trial ends. The work was funded through a Social Sciences and Humanities Research Council of Canada (SSHRC) Partnership Engage Grant.
The coalition’s central recommendations include treating consent as an ongoing conversation rather than a one-time signature, limiting confidentiality agreements that could prevent participants from reporting safety concerns, ensuring fair compensation, and recognizing participants’ intellectual contributions.
Another critical recommendation calls for treating neural data as participants’ personal information and providing greater transparency about how that data is collected. The coalition also advocates clearer agreements concerning hardware and software ownership, along with provisions for maintenance and support after clinical trials conclude.
“Participant autonomy is a mandatory prerequisite of ethical research,” Burkhart said. “These recommendations are the foundation we are offering every research team and every company running a BCI trial: start with the people who live with the device, and build from there.”
Coalition Support
Other coalition members include Scott Imbrie and Galen Buckwalter, among others. Imbrie uses neural signals to control virtual and robotic limbs while receiving artificial tactile feedback. Buckwalter, who joined an implanted BCI study in 2024, advocates for participant rights and neural-data governance.
Fellow coalition member Robert “Buz” Chmielewski has demonstrated simultaneous brain control of two advanced prosthetic arms, including using them to feed himself.
“Consent is not a signature you collect once,” Buckwalter emphasizes. “In this new era of participant autonomy, it is a conversation that continues for as long as the device is part of someone’s life.”
The coalition aims to establish a binding code of practice that could be enforced worldwide.
United Nations Call for Neurodata protection and action
On October 15, the United Nations warned that rapidly advancing neurotechnology could threaten individual privacy, freedom of thought, and the right to a fair trial. In a report to the General Assembly, senior human rights official Claudia Fuentes Julio highlighted the potential risks of brain-computer interfaces (BCIs), particularly for marginalized communities.
“We also need to be precise about what current BCIs can and cannot do,” Burkhart told The Debrief. “They do not ‘read minds’ in the sci-fi manner many assume, but neural data is still deeply personal and deserves strong protection.”
“That means clear, informed, and revocable consent; strict limits on collection, sharing, and secondary use; strong data security; and firm protections against coercive use by employers, insurers, schools, law enforcement, or the criminal legal system,” Burkhart said.
BCI Policy
On September 24, 2025, U.S. lawmakers introduced the proposed Management of Individuals’ Neural Data Act (MIND Act), calling for federal guidelines to address the ethical, safety, and privacy and future challenges of neurotechnology and strengthen protections for neural data for all people living with BCI.
Although the legislation has not become law, several U.S. states, including Colorado, California, and Montana, have introduced protections for neural data. Countries across Latin America, including Brazil, Mexico, Colombia, Argentina, and Chile, have also explored or pursued neurotechnology regulations.
Questions surrounding affordability and access have also raised concerns about a growing technological divide that could lead to what investment bank Morgan Stanley and others have described as a possible “neuro-elite.”
“Equity has to be built in from the start. If these technologies prove clinically beneficial, access cannot depend only on wealth, geography, or a person’s ability to navigate a complex health system,” says Burkhart.
“Public investment, reimbursement pathways, and ongoing involvement from the disability community are essential so that neurotechnology expands opportunity rather than creating a neuro-elite.”
Chrissy Newton is a PR professional and the founder of VOCAB Communications. She currently appears on The Discovery Channel and Max and hosts the Rebelliously Curious podcast, which can be found on YouTube and on all audio podcast streaming platforms. Follow her on X: @ChrissyNewton, Instagram: @BeingChrissyNewton, and chrissynewton.com. To contact Chrissy with a story, please email chrissy @ thedebrief.org.