Research in the Works
All human subjects’ research involves an informed consent process, during which potential participants learn about research procedures, possible risks of being in the research study, and then decide if they would like to participate in the study. This information is usually communicated in written or spoken English, rather than translated into ASL, making the process inaccessible to the Deaf community. In addition, the Deaf community often feels mistrust toward researchers and strong resistance to enrolling in research studies because of the long history of mistreatment of Deaf people in the research world.2-4 Researchers must develop ways to improve access and build trust with the Deaf community to include this underserved and at-risk population in human subjects’ research studies. In 2016, the University of Massachusetts Medical School (UMMS), in partnership with Brown University, was awarded a 2-year grant from the National Institute on Deafness and Other Communication Disorders (NIDCD) to improve Deaf people’s trust and involvement in biomedical research. The Deaf ACCESS: Adapting Consent through Community Engagement and State-of-the-art Simulation research team is led by Melissa Anderson from UMMS and Co-Investigator Timothy Riker from Brown University.
Anderson, M. L., Riker, T., Gagne, K., Hakulin, S., Meehan, J., Stout, E., Higgins, T., Pici-D’Ottavio, E., Cappetta, K., & Prusky, A. (2017). Deaf ACCESS: Adapting Consent through Community Engagement and State-of-the-Art Simulation. Psychiatry Information in Brief, 14 (12). Retrieved from https://escholarship.umassmed.edu/pib/vol14/iss12/1
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Access to Care, Community Based Participatory Research, Education and Training, Health Disparities, Multicultural
Research, Informed Consent, Deaf, Deaf Community, Participatory Action Research, Community-based participatory research, training, health disparities, mental health, biomedical research