The Ethical and Practical Issues Surrounding the Design of Assistive Technology for Individuals with Severe Physical Disability and Complex Communication Needs

Assistive technology (AT) has the potential to improve the functional abilities of individuals with severe physical disabilities. Brain-computer interfaces (BCI) have gained interest for this purpose due to their ability to be used by individuals with no motor abilities. This paper describes the ethical and practical issues our research team encountered while researching the usability of a BCI-AT for people with severe cerebral palsy, who were nonverbal. We encountered issues around gaining sustained participation in our project, participant burden, dissonance between consent of caregivers/guardians and assent from our participants and obtaining feedback from proxies. Furthermore, before testing the BCI-AT prototype, our research team engaged our participant group through an immersion approach. This paper discusses this process and the ethical concern of potential coercion by taking this approach. Discussions around different approaches that researchers in this area take will make it possible to overcome issues which are commonly encountered, and enable more reliable and valid participatory research opportunities. Author