Ethical Issues in Conducting Research With Deaf Populations
| Autor: | Deirdre Schlehofer, Michael McKee, Denise Thew |
|---|---|
| Rok vydání: | 2013 |
| Předmět: |
Genetic Research
genetic structures American Sign Language Cultural identity media_common.quotation_subject Population Representation (arts) Trust Informed consent Perception otorhinolaryngologic diseases Humans Sociology education media_common education.field_of_study Cultural Characteristics Informed Consent Ethical issues business.industry Communication Barriers Community Participation Public Health Environmental and Occupational Health Fear Research opportunities Public relations language.human_language Persons With Hearing Impairments Public Health Ethics language Genetic Engineering business Social psychology |
| Zdroj: | American Journal of Public Health. 103:2174-2178 |
| ISSN: | 1541-0048 0090-0036 |
| DOI: | 10.2105/ajph.2013.301343 |
| Popis: | Deaf American Sign Language (ASL) users represent a small population at risk for marginalization from research and surveillance activities resulting from 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 outlines a series of innovative strategies and solutions to these issues, including the importance of community representation and collaboration with researchers studying deaf populations. |
| Databáze: | OpenAIRE |
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