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133rd Annual Meeting & Exposition
December 10-14, 2005
Robert Pollard, PhD, Dept of Psychiatry, University of Rochester, 300 Crittenden Blvd., Rochester, NY 14642, 585 275 3544, Robert_Pollard@urmc.rochester.edu
The Centers of Disease Control and Prevention recently funded the establishment of a Prevention Research Center solely devoted to investigating health and disease prevention in the deaf population. The National Center on Deaf Health Research (NCDHR) is organized via a community-participatory model wherein the deaf population is framed as a linguistic and cultural minority rather than a disability group. This is a significant departure from the perspective of prominent deafness research organizations (e.g., the National Institute on Deafness and other Communication Disorders, the Deafness Research Foundation) whose research missions involve the treatment and prevention of hearing loss, not the general health and well-being of individuals who happen to be deaf. In contrast, the NCDHR recognizes that the unique characteristics, strengths, and struggles of the deaf population – sign language use, Deaf culture, generally limited English literacy, lack of access to sign language interpreters in healthcare settings, limitations in access to healthcare information – present a wholly unique mosaic of issues relevant to effective healthcare and related research, unlike any other disability or language minority group. These unique issues lead to unique frameworks, obligations, and strategies for conducting ethical research with the deaf population. Arguably, such research is more akin to cross-cultural research than research with vulnerable populations or other models. The NCDHR presenter has published and lectured widely on ethics in deafness research. This presentation will delineate the central tenets of ethical research involving the deaf population, highlighting the relationship to cross-cultural research in general and matters unique to deaf research participants.
Keywords: Deaf, Research Ethics
Related Web page: www.urmc.rochester.edu/dwc
Presenting author's disclosure statement:
I wish to disclose that I have NO financial interests or other relationship with the manufactures of commercial products, suppliers of commercial services or commercial supporters.
The 133rd Annual Meeting & Exposition (December 10-14, 2005) of APHA