In planning for our research team's first human implant of a technologically advanced intracortical visual prosthesis we have conducted three focus groups with blind persons from a pool of likely participants. Guided by the principles of the Independent Living movement and Participatory Action Research (PAR), we asked the participants to share their thoughts and concerns about the procedure. The preliminary results reveal that achievement of the desired highest ethical of informed consent will require extensive pre-operative learning opportunities, such as those provided by these focus groups. Persons who are blind may be motivated to participate in research like this based on a need to know, understand, and explore ones environment, to leave a legacy, and to experience some restored perception.

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.

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A number of projects exist that are investigating the ability to restore visual percepts for individuals who are blind through a visual prosthesis. While many projects have reported the results from a technical basis, very little exists in the professional literature on the human experience of visual implant technology. The current study uses an ethnographic methodological approach to document the experiences of the research participants and study personnel of a optic nerve vision prosthesis project in Brussels, Belgium. The findings have implications for motivation for participating in clinical trials, ethical safeguards of participants and the role of the participant in a research study. Implications for Rehabilitation Rehabilitation practitioners are often solicited by prospective participants to assist in evaluating a clinical trial before making a decision about participation. Rehabilitation professionals should be aware that: The decision to participate in a clinical trial is ultimately up to the individual participant. However, participants should be aware that family members might experience stress from of a lack of knowledge about the research study. The more opportunities a participant has to share thoughts and feelings about the research study with investigators will likely result in a positive overall experience. Ethical safeguards put in place to protect the interests of an individual participant may have the opposite effect and create stress. Rehabilitation professionals can play an important role as participant advocates from recruitment through termination of the research study. Participant hope is an important component of participation in a research study. Information provided to participants by investigators during the consent process should be balanced carefully with potential benefits, so it does not destroy a participant's hope.

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