Involving Deaf persons as researchers: Culturally and linguistically appropriate approach to certifying Deaf community members in research ethics

Rochester Prevention Research Center: The National Center for Deaf Health Research (NCDHR) is charged to identify health disparities within Deaf communities. Their framework uses the community based participatory research in order to conduct culturally and linguistically sensitive research. The Deaf Health Community Committee (DHCC) is a partnership between Deaf Communities, researchers, and health providers to promote an understanding of the health needs of culturally Deaf people (American Sign Language users), to identify issues essential to creating parity between the Deaf and general population, across the nation. DHCC is charged with helping with subject recruitment and to advise NCDHR for all of their research processes including sampling, methodology, findings, and discussion of their results. Because of DHCC's involvement with the research process, they were required to be certified in research ethics. Most members of DHCC are Deaf and American Sign Language (ASL) is considered as their native language. Written English certification exams are not accessible for many Deaf people, therefore preparing for the certification process involved translation from written English to ASL. In addition to the translation, the preparation process included intensive group interaction communicating in ASL, which helped members understand research ethics in ways that would have not been comparable if conducted in written English. The presenters will give an overview on the certifying process, benefits and challenges of this process, and to share recommendations.