title: Ethical issues in conducting research with deaf populations.
abstract: Deaf American Sign Language (ASL) users represent a small population at risk for marginalization from research and surveillance activities resulting from cultural, language, and ethical challenges. The Deaf community's view of deafness as a cultural identity, rather than a disability, contradicts the medical community's perception of deafness as a disease or deficiency in need of correction or elimination. These differences continue to have significant cultural and social implications within the Deaf community, resulting in mistrust of research opportunities. Two particularly contentious ethical topics for the Deaf community are the absence of community representation in genetic research and the lack of accessible informed consents and research materials. This article outlines a series of innovative strategies and solutions to these issues, including the importance of community representation and collaboration with researchers studying deaf populations.
authors.affiliation: Michael McKee is with the Department of Family Medicine and the National Center for Deaf Health Research, University of Rochester School of Medicine and Dentistry, Rochester, NY. Deirdre Schlehofer is with the Department of American Sign Language and Interpreting Education, National Technical Institute for the Deaf, Rochester Institute of Technology, Rochester, NY. Denise Thew is with the Department of Public Health Science, University of Rochester School of Medicine and Dentistry, Rochester, NY.
authors.forename: Michael
authors.initials: M
authors.lastname: McKee
authors.forename: Deirdre
authors.initials: D
authors.lastname: Schlehofer
authors.forename: Denise
authors.initials: D
authors.lastname: Thew
mesh_terms: D003144:Communication Barriers; D003256:Community Participation; D003466:Cultural Characteristics; D005239:Fear; D005818:Genetic Engineering / Q000941:ethics; D036281:Genetic Research / Q000941:ethics*; D006801:Humans; D007258:Informed Consent; D019986:Persons with Hearing Disabilities / Q000523:psychology; D035502:Trust / Q000523:psychology*