title: Looking ahead: planning for the first human intracortical visual prosthesis by using pilot data from focus groups of potential users.
abstract: 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.
authors.affiliation: Illinois Institute of Technology, Chicago, IL 60616, United States.
authors.forename: Frank John
authors.initials: FJ
authors.lastname: Lane
authors.forename: Margaret Hellie
authors.initials: MH
authors.lastname: Huyck
authors.forename: Philip
authors.initials: P
authors.lastname: Troyk
mesh_terms: D000368:Aged; D000369:Aged, 80 and over; D055812:Community-Based Participatory Research / Q000458:organization & administration*; D005260:Female; D017144:Focus Groups; D006801:Humans; D007258:Informed Consent; D008297:Male; D008875:Middle Aged; D012107:Research Design; D014793:Visual Cortex / Q000601:surgery*; D057488:Visual Prosthesis; D019987:Persons with Visual Disabilities / Q000534:rehabilitation*