title: Perspectives of optic nerve prostheses.
abstract: 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.
authors.affiliation: a Department of Rehabilitation Psychology .
authors.forename: Frank John
authors.initials: FJ
authors.lastname: Lane
authors.affiliation: b Department of Psychology .
authors.forename: Kristian
authors.initials: K
authors.lastname: Nitsch
authors.affiliation: b Department of Psychology .
authors.forename: Margaret
authors.initials: M
authors.lastname: Huyck
authors.affiliation: c Department of Biomedical Engineering , and.
authors.forename: Philip
authors.initials: P
authors.lastname: Troyk
authors.affiliation: d Department of Chemistry , Illinois Institute of Technology , Chicago , IL , USA.
authors.forename: Ken
authors.initials: K
authors.lastname: Schug
mesh_terms: D000884:Anthropology, Cultural; D002986:Clinical Trials as Topic / Q000523:psychology*; D003657:Decision Making; D005190:Family / Q000523:psychology; D005260:Female; D006801:Humans; D008297:Male; D009042:Motivation; D009900:Optic Nerve / Q000601:surgery*; D018579:Patient Selection; D011446:Prospective Studies; D019736:Prostheses and Implants; D012108:Research Personnel / Q000523:psychology*; D035842:Research Subjects / Q000523:psychology*
keywords: Ethics; ethnography; human experience; vision prostheses