Toward Ethical Research Practice With Deaf Participants

Abstract

In recent years, scholars have been critical of what they consider unethical conduct by researchers whose studies focus on members of the Deaf or signing communities. This is the first empirical study that investigates ethical concerns and recommendations from the perspective of three stakeholder groups (Deaf research participants, researchers, and Deaf studies experts). We analyzed focus group discussions using strategies from grounded theory and community-based participatory research. The themes we identified highlight the need for the broader scientific research community to include linguistically and culturally sensitive research procedures that more adequately protect the rights of Deaf research participants, as well as other marginalized groups. We address the need to increase the number of Deaf scientists and reconsider collaboration practices between Deaf and hearing researchers.

Evidence-Based Practices in Deaf Education: A Call to Center Research and Evaluation on the Experiences of Deaf People

“…Decisions about deaf people and deaf education often fail to be informed by the experiences of deaf people (Kusters et al, 2017; Singleton et al, 2014). Deaf education research that does not include deaf people in the research process is at risk of reinforcing and extending the deficit model in which findings are often situated.…”

Documentação de Línguas de Sinais

“…O pesquisador enquanto surdo ou ouvinte precisará estar muito consciente destas relações para poder discutir sobre elas e planejar a documentação da língua. Singleton et al (2014) investigaram o quanto os participantes surdos efetivamente dão a sua aprovação ao assinarem o termo de consentimento. Eles entrevistaram surdos que participaram de pesquisas e identificaram que muitos deles sentem-se constrangidos ou não confortáveis diante dos pesquisadores que pode ser decorrente tanto da falta de sensibilidade cultural, como das limitações na comunicação.…”

“…Outro fator identificado é que devido às limitações na comunicação, muitas vezes o que o participante apresentou não era exatamente o que havia sido solicitado levando a resultados que não representam o que realmente poderia ser obtido. Singleton et al (2014), então, apresentaram alguns pontos a serem considerados no desenvolvimento de pesquisas: (1) incorporação da consciência cultural e linguística; (2) criação de práticas acessíveis com termos em língua de sinais e processos de desenvolvimento da pesquisa na língua de sinais e na língua escrita organizados de forma acessível; (3) o retorno dos resultados das pesquisas aos participantes, especialmente aos que manifestarem interesse em conhecer os resultados da pesquisa; (4) reestruturar modelos colaborativos envolvendo surdos e ouvintes de forma transparente. Essas considerações éticas são importantes nas propostas de documentação de línguas de sinais.…”

Nothing about us without us: Deaf education and sign language access in China

“…Inspired by this, deaf Chinese individuals seek to contribute to society by investigating educational matters and introducing deaf perspectives into the larger academic discourse. "Nothing about us without us" is a tenet extrapolated from the disability empowerment movement (Charlton, 1998) reiterating the importance of including "the researched" in the research enterprise (Singleton et al, 2014). Through this research study, deaf agency and participation is enabled and has the potential to benefit the developing infrastructure and policy designed to meet educational and social needs of all deaf Chinese individuals.…”