Abstract
Purpose: :
To compare the anticipations of potential recipients of a visual cortical implant prosthesis with the the experiences of individuals receiving an experimental visual cortical implant, in order to provide guidelines for the next experimental procedure implanting a prosthesis into the visual cortex.
Methods: :
Initially, eight focus groups involving adult-onset, legally and totally blind individuals were questioned about their responses to a proposed new visual prosthesis which involved an implant of microprocessors into the visual cortex. . A second set of inquiries involved interviewing individuals who had received a visual cortical implant device designed to restore perception among individuals who had lost all vision as adults; so far, we have interviewed 9 individuals who received implants designed by William Dobelle. Questions posed were similar to those posed to the focus group respondents, augmented by actual experience: How did you become blind? How did you learn about this treatment option? What did you expect? Who was involved in your decision? What happened during the recruitment, surgery, and followup processes? How was your life impacted by the implant? What would you recommend for future participants in an experimental procedure like this? All data collections were video & audio recorded, and have been analyzed using accepted analytic techniques for qualitative data.
Results: :
Within the focus groups, several themes emerged: 1) altruism, 2) pioneer and 3) personal benefit. Similar themes emerged with the Dobelle respondents, although the potential or actual personal benefit was more emphasized. It is clear that the definition of a "successful" intervention varies among the participants.
Conclusions: :
Protocols for experimental procedures such as those now planned by groups devising various visual prostheses implants must recognize the varied motivations involved, and the varied needs for support that participants present. We can use the results from these two studies to prepare protocols for the recruitment, assessment, informed consent, and support of participants in experimental protocols, where the outcome cannot be assurred but where the individual can have an important experience in contributing to the advancement of science, recognized as a valued member of the research team.
Keywords: visual cortex • accessory optic system/pretectum • clinical (human) or epidemiologic studies: risk factor assessment