Deaf ACCESS: Adapting Consent through Community Engagement and State-of-the-Art Simulation [English and Spanish versions]
Anderson, Melissa L ; Riker, Timothy ; Gagne, Kurt ; Hakulin, Stephanie ; Meehan, Jonah ; Stout, Elizabeth ; Higgins, Todd ; Pici-D’Ottavio, Emma ; Cappetta, Kelsey ; Prusky, Anne
Citations
Student Authors
Faculty Advisor
Academic Program
UMass Chan Affiliations
Document Type
Publication Date
Keywords
Subject Area
Collections
Embargo Expiration Date
Link to Full Text
Abstract
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. A Spanish translation of this publication is available for download.