Deaf ACCESS: Adapting Consent through Community Engagement and State-of-the-Art Simulation

Abstract

One of the most understudied health disparity populations in the United States is the Deaf community, a sociolinguistic minority group of more than 500,000 individuals who communicate via American Sign Language. Research on Deaf health disparities is lacking due to inaccessible recruitment, sampling, and data collection procedures, as well as the fundamental disconnect between medical and cultural views of Deaf people. A potential starting place for addressing inaccessible research methods and mistrust of the biomedical research community is the careful reconsideration of the traditional informed consent process, often a Deaf individual's first point of contact with the research world. Yet, most Deaf individuals experience obstacles to engaging in informed consent due to differences in language and development compared to hearing individuals. In response to these issues, our team led a three-phase, formative, community-engaged approach to adapt the informed consent process and train research staff in the updated method so that all required components are properly communicated and understood. The goals of our work were to promote Deaf engagement in research about the Deaf community, increase the number of Deaf individuals who participate in general population biomedical research, and generalize our findings to improve research accessibility for the general population.