From MIT Technology Review · · 3m
Brain implant volunteers demand better trial terms
People with neural devices are pushing researchers to recognize their contributions, protect their data, and commit to long-term device support.
In brief
People with neural devices are pushing researchers to recognize their contributions, protect their data, and commit to long-term device support. Brain implant trial volunteers have published ethics guidelines demanding recognition as research collaborators, control over their neural data, and researcher commitment to…
Brain implants decode movement
Scientists have developed brain implants that decode neural activity to control robotic limbs, computers, and speech. Volunteers in these trials play a vital role in advancing the technology.
Ian Burkhart's breakthrough trial
In two thousand fourteen, Ian Burkhart became the first person to trial a brain implant for hand control after a diving accident left him paralyzed from the chest down in two thousand ten.
How the implant worked
Ninety-six electrodes were inserted into Burkhart's motor cortex and connected to a computer via a cable. Algorithms interpreted his neural signals and sent them to electrodes on his arm, allowing movement.
What Burkhart could do
Burkhart used the system to pour beads from bottles, move small delicate objects, and play Guitar Hero during lab visits. It was a scientific breakthrough, though limited to controlled settings.
Burkhart forms advocacy group
In two thousand twenty-two, Burkhart cofounded BCI Pioneers Coalition, an organization where brain implant trial participants share experiences with each other and with researchers developing new guidelines.
New ethics guidelines published
The coalition published guidelines on Tuesday laying out thirteen categories of recommendations to help researchers run ethical trials that respect participants' autonomy and recognize their contributions.
Recognizing participant effort
Burkhart attended the lab two or three days a week for four hours at a time during trials. He says participants should be listed as coauthors on publications or named as research collaborators.
“I was going into the lab two or three days a week, for four hours at a time. That's a part-time job if you just count the hours you're putting in.”
Protecting brain data privacy
Guidelines state brain data should be understood as the participant's personal information. Participants want access to their own data and protection from nondisclosure agreements that prevent sharing with doctors.
“should be understood as the participant's personal information”
Burkhart's device removal
Around five years after implantation, Burkhart's research team faced funding issues and told him the device would be removed. He kept it until two thousand twenty-one when an infection developed at the cable site.
Rita Leggett's forced removal
Australian Rita Leggett had a brain implant for epilepsy treatment. When the company went bust two years later, her device was removed against her will, an act ethicists described as a potential human rights breach.
Long-term device commitment required
Guidelines now require researchers to maintain brain devices for a reasonable period after trials end. Participants need time to prepare for removal surgery, and researchers must set aside funds to support them.
Guidelines are just the start
The guidelines were developed with feedback from a small group, as few people live with brain implants.Chandler says this is version one, a living document.Burkhart plans to discuss them at an upcoming neuroscience conference.
“This is a living document, and this is version one. It's just the starting point.”
What to remember
Brain implant trial volunteers have published ethics guidelines demanding recognition as research collaborators, control over their neural data, and researcher commitment to device maintenance after trials end.
