Disentangling Function from Benefit: Participant Perspectives from an Early Feasibility Trial for a Novel Visual...

Area of Science:

• Neuroscience
• Biomedical Engineering
• Bioethics

Background:

• Visual cortical prostheses (VCPs) aim to restore vision for individuals with blindness.
• Understanding the lived experience of VCP users is crucial for development and ethical implementation.

Purpose of the Study:

• To explore the experiences, motivations, expectations, and risk/benefit assessments of participants in an early feasibility trial for the Orion VCP.
• To identify key themes emerging from user narratives to inform ethical considerations.

Main Methods:

• Qualitative study involving interviews with participants of the Orion VCP feasibility trial.
• Grounded theory and interpretive description approaches were used for data analysis.

Main Results:

• Six core themes emerged, including the non-reducibility of benefit to device functionality.
• Users reported mixed expectations regarding short-term function and long-term technological progress.
• A wide spectrum of risks, concerns, and fears associated with trial participation were identified.

Conclusions:

• User narratives highlight the complex interplay between VCP functionality and perceived benefit.
• Ethical considerations must address disability justice, user experience, and the impact of expectations and indirect risks on consent.
• A nuanced ethical framework is needed to guide the development and deployment of VCPs.