Adapting informed consent processes with deaf American sign language (ASL) users: Experiences from the deaf weight wise study
Deaf American Sign Language (ASL) users comprise cultural and linguistic minority groups that historically have not been included in public health research. Research processes including informed consent are often inaccessible to Deaf ASL users. The Rochester Prevention Research Center: National Center for Deaf Health Research (NCDHR) adapted a randomized controlled trial of a healthy lifestyle intervention for use with overweight and obese Deaf adults. Deaf and hearing researchers and community partners used community-based participatory research methods to ensure that all phases of the Deaf Weight Wise study were ASL accessible and culturally appropriate, including enrollment and consent. Researchers and community members adapted a written English consent document into a dialogic, novella-style ASL video, a format used with health education materials because it is language accessible and culturally congruent. The ASL informed consent video depicts four deaf characters (two researchers and two potential participants) discussing all the required elements of informed consent. Potential DWW study participants viewed the 18-minute video, and then met with an ASL-fluent researcher to have their questions answered, confirm their understanding, and document their consent on a one-page written English form. This process was approved by the University's institutional review board and was well-received by study participants. The Deaf Weight Wise informed consent process represents a novel approach to including Deaf ASL users in research, and could be used with other populations and in situations such as healthcare consent. Community participation was essential, and ensured that enrollment and informed consent was culturally and linguistically appropriate.
Diversity and culture
Ethics, professional and legal requirements
Public health or related research
Social and behavioral sciences
Explain why English-based research processes including consent may be inaccessible for Deaf ASL users.
Identify key elements of this research process that made it culturally and linguistically appropriate for the study population.
Describe how community participation in study design/adaptation can improve research processes.
Keyword(s): Deaf, Research Ethics
Presenting author's disclosure statement:
Qualified on the content I am responsible for because: I have been doing public health research for 10 years and have worked for the National Center for Deaf Health Research (NCDHR) for 8 of those years. I am the Senior Research Coordinator for NCDHR and the Deaf Weight Wise study, and have contributed to the design, planning, implementation, and analysis. I have published and presented on this topic. I have coordinated several other deaf and public health research projects and also have my MPH.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines,
and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed
in my presentation.