Hastings Center Report
Recognizing Brain Pioneering as Hard Work: Strategies for Making Research Participation More Meaningful
Abstract: Brain-computer interface (BCI) research offers novel opportunities for new tools for mobility and communication for those limited by injury or illness. Despite this promise, current BCI research remains largely early stage and without direct therapeutic benefits for the trial participants with motor disabilities who invest extensive time and energy in research trials. In interviews our neuroethics research group conducted, participants in nontherapeutic BCI trials invoked job-like or work-like comparisons as they recounted the demandingness (long commutes, tedious tasks, and tiring hours) and rewards (skill building, satisfaction, and coworker-like social relationships) of the trials. These comparisons, paired with the lack of therapeutic benefit, prompted our reflection on how participation in these long-term, active-engagement studies fits the conceptual framework of meaningful work. Examining trial participants’ testimonies through meaningful work’s dimensions of excellence, social contribution, community, recognition, and agency reveals useful strategies for ensuring that the extensive time and effort trial participants invest in these trials is recognized, respected, and made meaningful.
