Responses of potential users to the intracortical visual prosthesis: final themes from the analysis of focus group data

Abstract

Although visual implant prosthesis projects are advancing, little exists in the literature on the factors that would lead an individual to volunteer for such an experimental procedure. Many ethical issues are raised in recruiting and involving individuals in experimental implant procedures, most involving autonomy and informed consent. This report provides perspectives of 30 totally or legally blind older individuals on their expectations about a potential visual implant, their motivations for volunteering, and the processes they would use for decision making. Data were collected in eight focus groups, using semistructured focus group processes. Among the primary reasons a person with seriously impaired vision would volunteer for a new implant procedure are helping others, exploring the unknown, and restoring perception. The decision to participate in an experimental brain implant procedure is complex. Potential recipients have many questions about the device and the procedure, the perceived risks, and the commitment of a research team to the participants once a device has been implanted. Some would involve their family in a decision; others are more comfortable making the decision independent, after consulting others. The themes identified provide a guide for recruiting and ensuring an ethical experience for participants in experimental protocols.

Implications for Rehabilitation

• The motivation to participate in vision restoration experiments may include altruism and the experience of pioneering research.

• Phosphenes (dots of light in the visual field) can improve safety and independence of an individual who is blind.

• The decision to participate in vision restoration experiments is unique for each individual and may include consultation with family members, friends, spiritual guides, individuals who are blind and health professionals.

Keywords::

• Ethics
• qualitative methodology
• technology
• vision implant

Declaration of Interest: This work was funded by the Brain Research Foundation, the Pritzker-Galvin Challenge Fund and private donations.