“It Gave Me a Purpose”: Participation as Benefit in Brain-Computer Interface Studies
Saturday, October 14, 2023
10:30 AM – 11:45 AM ET
Location: Galena (Fourth Floor)
Non-therapeutic studies are not required to provide any potential clinical benefit to research participants. However, in clinical trials for implantable brain-computer interfaces (BCI), the hope of societal benefit alone may not be enough to justify the burdens incurred by participants. These trials not only require clinical risk but also involve labor-intensive activities, often over multiple years. Participants work hard for minimal compensation, and are integral to study success. In these studies, researchers should consider ways that participants do or could benefit, including recognition for participation and continued involvement after a study ends.
In our longitudinal project with participants in BCI studies, a number of participants shared indirect benefits of participation, like a restored sense of purpose and self-worth (“my contribution is here”; “this project makes me feel relevant again”). As all participants had spinal cord injuries, many had struggled with social isolation and the loss of physical abilities. Considering the demandingness of trial participation, the lack of compensation, and the (unjustly) limited options for this subject population to find other modes of societal engagement, there is a heightened need for researchers to recognize the valuable contributions made by participants through ensuring greater benefits to them.
Given these intersecting vulnerabilities, we must attend to how research participation can contribute towards increased wellbeing, and protect against veering towards exploitative practices. Using participant accounts, we consider potential strategies for enabling benefits through participation, including recognition of clinical trial labor by sharing study findings, invitations to conferences, and continued relationships with the research team.
Ishan Dasgupta – Dana NextGen Program – Dana Foundation; Sara Goering – Philosophy – University of Washington; Eran Klein – Neurology – Oregon Health & Science University