Deaf American Sign Language (ASL) users represent a small population at risk of marginalization from research and surveillance activities as a result of cultural, language, and ethical challenges. The Deaf community's view of deafness as a cultural identity, rather than a disability, contradicts the medical community's perception of deafness as a disease or deficiency in need of correction or elimination. These differences continue to have significant cultural and social implications within the Deaf community, resulting in mistrust of research opportunities. Two particularly contentious ethical topics for the Deaf community are the absence of community representation in genetic research and the lack of accessible informed consents and research materials. This article also outlines a series of innovative strategies and solutions to these issues, including the importance of community representation and collaboration with researchers studying Deaf populations.

Background Numerous publications demonstrate the importance of community-based participatory research (CBPR) in community health research, but few target the Deaf community. The Deaf community is understudied and underrepresented in health research despite suspected health disparities and communication barriers. Objectives The goal of this paper is to share the lessons learned from the implementation of CBPR in an understudied community of Deaf American Sign Language (ASL) users in the greater Rochester, New York, area. Methods We review the process of CBPR in a Deaf ASL community and identify the lessons learned. Results Key CBPR lessons include the importance of engaging and educating the community about research, ensuring that research benefits the community, using peer-based recruitment strategies, and sustaining community partnerships. These lessons informed subsequent research activities. Conclusions This report focuses on the use of CBPR principles in a Deaf ASL population; lessons learned can be applied to research with other challenging-to-reach populations.

While in recent years, intimate partner violence (IPV) has attracted considerable research attention, the experiences of IPV affecting the Deaf community have been understudied. As a linguistic and cultural minority, Deaf victims of IPV encounter significant barriers in accessing information and services designed to address the medical and legal consequences of victimization. The number of Deaf Americans who communicate via American Sign Language (ASL) may well exceed a half-million, yet little is known about Deaf IPV victims' experiences and the characteristics of persons who perpetrate IPV with ASL users. This study addressed both topics. The current study is based on interviews in ASL with 14 Deaf IPV victims (participants). We explored: the types of abuse participants experienced; characteristics of victims and perpetrators; participants' help-seeking behaviors; and the availability, use, and helpfulness of various resources. These findings were compared to what is known about IPV in the hearing community. Our findings include that lack of information regarding IPV and lack of access to specialized IPV services were pervasive problems affecting Deaf victims. For some victims, the close-knit nature of the Deaf community was a barrier for discussing IPV and accessing information and support. It was common for Deaf victims to receive services or information about IPV from providers who were not IPV specialists. Communication abuse was prevalent in our study. The nature of communication abuse is unique for Deaf victims compared to hearing victims.