More autonomy, fewer NDAs: Volunteers have new requests for brain implant trials

Scientists have been working on decoding brain activity for decades, leading to the development of brain implants capable of controlling robotic limbs, computers, and even enabling individuals to "speak." Volunteers play a crucial role in the research of these devices. Ian Burkhart, who had a brain implant implanted in his brain in 2014, emphasizes the need for guidelines for researchers developing brain-computer interfaces (BCIs).

Ethics guidelines for clinical trials exist, but BCI trials are unique due to the extended duration and significant investment of time, body, and intellectual effort involved by participants. Jennifer Chandler, a professor of law and neuroethics at the University of Ottawa, points out that these trials often last for years, with participants dedicating a substantial amount of their time and energy to the process.

Burkhart, who was left paralyzed from the chest down following a diving accident in 2010, volunteered to be the first person to trial a brain implant designed for hand control. He had 96 electrodes inserted into the part of his brain that controls movement and was connected to a computer via a cable that plugged into his head. While the initial movements were small, Burkhart could eventually use the system to control a robotic arm, pour beads from bottles, move delicate objects, and even play Guitar Hero during lab visits.

The experience was transformative, but Burkhart believes certain aspects could have been handled differently. To address the needs of BCi trial participants, Burkhart cofounded the BCI Pioneers Coalition in 2022. This organization aims to help researchers run ethical trials that respect participants' autonomy. The guidelines, published recently, outline recommendations in 13 categories.

One category focuses on recognizing and compensating trial participants, as those involved, such as Burkhart, may dedicate a significant portion of their time to the trials. The guidelines also address the ethical concerns surrounding privacy, especially regarding the potential media attention surrounding cutting-edge biotechnologies.

Researchers should be prepared for the possibility of media attention and ensure that participants are aware of this risk when volunteering. Moreover, brain data collected during trials should be considered personal information and participants should have access to their data whenever they want. Researchers must also commit to maintaining brain devices for a "reasonable period" after trials end, providing participants with ample time to prepare for and recover from the removal surgery.