TY - JOUR
T1 - Disentangling Function from Benefit
T2 - Participant Perspectives from an Early Feasibility Trial for a Novel Visual Cortical Prosthesis
AU - Levy, Lilyana
AU - Ebadi, Hamasa
AU - Peabody Smith, Ally
AU - Taiclet, Lauren
AU - Pouratian, Nader
AU - Feinsinger, Ashley
N1 - Publisher Copyright:
© 2023 Taylor & Francis Group, LLC.
PY - 2023
Y1 - 2023
N2 - Visual cortical prostheses (VCPs) have the potential to provide artificial vision for visually impaired persons. However, the nature and utility of this form of vision is not yet fully understood. Participants in the early feasibility trial for the Orion VCP were interviewed to gain insight into their experiences using artificial vision, their motivations for participation, as well as their expectations and assessments of risks and benefits. Analyzed using principles of grounded theory and an interpretive description approach, these interviews yielded six themes, including: the irreducibility of benefit to device functionality, mixed expectations for short-term device functionality and long-term technological advancement of visual prostheses, and a broad range of risks, concerns, and fears related to trial participation. We argue that these narratives motivate a nuanced set of ethical considerations related to the complex relationship between functionality and benefit, the intersection of user experience with disability justice, and the import of expectations and indirect risks on consent.
AB - Visual cortical prostheses (VCPs) have the potential to provide artificial vision for visually impaired persons. However, the nature and utility of this form of vision is not yet fully understood. Participants in the early feasibility trial for the Orion VCP were interviewed to gain insight into their experiences using artificial vision, their motivations for participation, as well as their expectations and assessments of risks and benefits. Analyzed using principles of grounded theory and an interpretive description approach, these interviews yielded six themes, including: the irreducibility of benefit to device functionality, mixed expectations for short-term device functionality and long-term technological advancement of visual prostheses, and a broad range of risks, concerns, and fears related to trial participation. We argue that these narratives motivate a nuanced set of ethical considerations related to the complex relationship between functionality and benefit, the intersection of user experience with disability justice, and the import of expectations and indirect risks on consent.
KW - Critical disability studies
KW - emerging neurotechnology
KW - neuroethics
KW - participant perspectives
KW - research ethics
KW - visual prostheses
UR - http://www.scopus.com/inward/record.url?scp=85173964189&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85173964189&partnerID=8YFLogxK
U2 - 10.1080/21507740.2023.2257152
DO - 10.1080/21507740.2023.2257152
M3 - Article
C2 - 37812142
AN - SCOPUS:85173964189
SN - 2150-7740
JO - AJOB Neuroscience
JF - AJOB Neuroscience
ER -