Ethical and Policy Aspects of Cortical Visual Prosthetics Research: An Empirical Neuroethics Study

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Project Summary Brain-computer interfaces (BCIs) have emerged as a promising modality for restoring physiological functions such as mobility, communication, and visual perception. The BRAIN Initiative is a key driver of BCIs, funding development of prosthetics for movement disorders, communication devices, and cortical visual prosthetics (CVPs). CVPs aim to restore some degree of sight or a functional analogue for people who are blind. Unlike other methods of sight restoration, CVPs bypass damaged or dysfunctional ocular anatomy, aiming to provide potentially life-altering benefits via a distinctive, brain-based approach. But while other brain implants, including other BCIs, are widely studied and discussed by neuroethicists, CVPs have received little attention and there is a lack of empirical data on stakeholder perspectives about CVPs. CVPs raise special considerations due to conceptual questions about the role of blindness in identity, autonomy, quality of life, and other dimensions of non-clinical risk and benefit. CVPs are a potential tool for empowering blind individuals, but the specialized nature of the intervention raises issues of access, and it is also crucial that this research avoid unexpected group harms to the blind community. Furthermore, the visual experience that CVP technology is likely to provide even in a best-case scenario is quite different from typical vision. Thus, there is uncertainty about how to measure success in CVP research. Responsible development of CVPs must take into consideration the perspectives of researchers and participants on the issue of how to define restoration of function and determine degree of improvement necessary to qualify as success. Aim 1 will determine how members of a CVP research team define restoration of function and its ethical importance as a research goal by utilizing an embedded neuroethics approach (ethnographic participant observation) with a lab conducting human subjects research on CVPs. Aim 2 will identify the values that guide and ought to guide current and future practice in the field from the perspective of CVP researchers using in-depth qualitative interviews. Aim 3 will employ similar interviews to explore the values that guide and ought to guide current and future practice in the field from the perspective of individuals with experience as participants in CVP research. This project will help identify and address ethics and policy dimensions of next-generation CVP systems, helping to maximize the individual and social benefits of the research while minimizing its risks and providing values-based guidance for development of neurotechnologies aiming to restore vision and other physiological functions.