Cross-cultural ethics in the conduct of deafness research.

Abstract

This paper argues for and illustrates the application of contemporary cross-cultural ethical principles and practices in deafness research. The relevance of framing some deafness research as cross-cultural is first explained. A gradient is defined where cultural bearing varies from low to high, depending on a study's topic and design. It is concluded that scientists should employ contemporary cross-cultural ethical practices when their studies have cultural bearing. The evolution and nature of these special ethical practices are then detailed. They extend research protections beyond the individual participant to the host community as a collective entity. They address: relations with the heterogeneous host community, the research agenda and design, the participation of host community scientists, publication foci and channels, and more. Specific applications of these principles and practices to deafness research are described.

Qualitative Research and Translation Dilemmas

“…In fact much of the literature on cross cultural research between Deaf and hearing people has totally ignored issues of translation (e.g. Pollard, 1994). The more central issue has been the 'role' -a role discussed largely in ontological and functional terms, rather than in epistemological ones (Kyle, 1996).…”

A Community-Participatory Approach to Adapting Survey Items for Deaf Individuals and American Sign Language

“…Significant time and effort must be expended in building and maintaining an effective translation team. Any cross-cultural research endeavor, especially those pursued via a CBPR model, must attend carefully to unique ethical principles (Trimble 1988;CCPH 2006), including some specific to research in the Deaf community (Pollard 1992(Pollard , 2002. These principles were embodied in specific TWG work practices to optimize crosscultural relations as well as our translation work product.…”

Toward Ethical Research Practice With Deaf Participants

“…Both focus groups emphasized the obligation for researchers to give back to the Deaf community after the research findings have been completed and published (Section C.16), bearing in mind that traditional pathways of research dissemination may not be accessible to the Deaf community (see Pollard, 1992, for a discussion). Furthermore, Baker-Shenk and Kyle (1990) suggested that the Deaf community has perhaps become disenfranchised from the research enterprise due to their continuing exclusion from the research decision-making process.…”

“…In the past two decades, scholars have discussed ethical issues in deafness-related research and even criticized the conduct of some researchers who study Deaf people (Baker-Shenk & Kyle, 1990; Harris, Holmes, & Mertens, 2009; NIDCD, 1999; Pollard, 1992, 2002). A primary concern raised is that many investigators look at Deaf people through a disability lens, comparing them only with hearing groups, whom they call normal , and putting emphasis on clinical and behavioral interventions that address the purported negative ramifications of deafness.…”

“…For example, there are cultural and linguistic affordances experienced by this population, such as the use of signed language for communication and social interaction with other members of the Deaf community. Some scholars, such as Pollard (1992) and Harris et al (2009), argue that the continuing neglect of these important cultural and linguistic factors and the overly narrow description of individuals who are Deaf only according to their level of hearing loss perpetuate a negative and inaccurate interpretation of research findings as it pertains to Deaf participants. Drawing parallels to research involving other marginalized groups, these authors advocate that the broader research community should adopt culturally appropriate research guidelines, recognize the heterogeneity of the members of Deaf community, and ensure that research findings accurately represent the community of Deaf individuals.…”