BCI-DEF: Brain Computer Interfaces and Disability: Developing an Inclusive Ethical Framework

Project Summary/Abstract The objective of “Brain Computer Interfaces and Disability: Developing an Inclusive Ethical Framework (BCI- DEF)” is to use structured vignettes, video-supported interviews, and a deliberative democracy approach to assess and analyze diverse, critical stakeholder perspectives about the benefits, risks, and ethical challenges of Brain Computer Interface (BCI) technology. BCIs measure and interpret brain signals and interface with a device to allow users to perform a task, such as communication or movement. BCIs hold great promise, especially for end users with disability due to neurologic deficits in communication or motor function, but this potential may be limited by unaddressed ethical challenges. Issues of concern include stigma, autonomy, privacy, safety, impacts to personhood, responsibility and justice. Through the innovative approach in this project, we will focus on input from a primary group of potential end users (patients with neurologic disability and their family/caregivers) and clinicians who care for patients with acute neurologic injury to obtain critical and heretofore absent information about important focus areas related to ethics of BCI. The inclusion of additional key stakeholders including BCI engineers and research teams will further inform the deliberative democracy approach. Issues we will further investigate through this project include weighing the potential benefits and risks of BCI; evaluating ethical challenges surrounding BCI and disability including those around autonomy, stigma, and justice; impact of BCI on perceptions of disability and clinical decision making in acute brain injury; and defining critical information needed by end users, families, and clinicians to make future informed decisions about BCI use. This work is critical to ensure seamless, equitable, and ethical adaptation of innovative and cutting edge BCI technologies being developed through BRAIN Initiative projects.