Brain Computer Interface Technology and Disabilities: The Perspectives of Patients, Caregivers, Clinicians and Researchers

Abstract: Brain Computer Interface (BCI) technology, while in early stages of research and translation, holds promise for improving the communication and functional abilities of patients with a range of acquired disabilities, including stroke, traumatic brain injury (TBI), and ALS. Despite optimism, little is known about the views of patients, clinicians, and researchers about ethical challenges, especially surrounding the intersection of disability and ethics. This panel will present data from three empirical studies about diverse perspectives on these issues.
The first panelist will discuss perspectives of clinicians, and of stroke and TBI patients, including concerns about privacy, data usage, and long-term technology support. Many cited variabilities in patient goals around cognitive functioning, informed-decision making and independence as key factors influencing BCI success.
The second panelist will discuss research on the roles of caregivers in BCI research, including in informed consent and technical maintenance and upkeep. They will also discuss how BCI research participation benefits are mediated by caregivers of disabled participants through the lens of relational identity and autonomy.
The third panelist will share insights from ethnographic interviews with neuroscientist and neuroengineer informants, highlighting the challenges these experts face—and foresee—in ensuring that disabled recipients of neurotech actively shape the technologies they use.
Panelists will discuss future strategies and research about the ethical dimensions of BCI research and clinical use. They will also discuss how empirical ethics research about BCI can serve as a model for developing ethical frameworks for other neuro- and genomic-technologies for people with disabilities.

Keywords: brain computer interface technology, neuroethics, disability