Ethical Issues With Deaf Research
Introduction to Ethical Issues
The Deaf community’s view of deafness as an identity instead of a disability greatly contradicts the general and medical communities’ perception. This divided view has proven to create mistrust, especially with regards to research and its purpose within the deaf community. According to the authors of “Ethical Issues in Conducting Research With Deaf Populations” there are two ethical issues felt by the Deaf: the absence of community representation in genetic research and lack of accessible informed consents and research material.
Scared of the Unknown
Though there are many reasons why a large communication gap still exists for the Deaf community, the gap increases even more so in research due to great underrepresentation. This in turn created an ethical issue that causes a domino effect of mistrust and miscommunication. In order for researchers to collaborate with any community a certain level of respect, compassion, cultural competency, and patience must exist. Now imagine if individuals rely solely on sign language as their major form of communication? Instead of eliminating these individuals altogether from a research process, engaging with attributes such as these are very important.
Despite increasing evidence of substantial health issues within the Deaf ASL community, it is largely understudied and thus underserved. ASL users rarely participate in clinical research in part due to exclusion criteria, inaccessible informed-consent processes, inadequate recruitment strategies, and lack of cultural knowledge
Ethical Issue 1: Absent Representation
Historically, Deaf related studies placed a focus on the elimination of deafness through innovative technologies and engineering. For example, The eugenics movement (1880-1950) in the United States and the United Kingdom, displayed many questionable moral acts in the name of ‘better breeding’. Instead of focusing on the complete elimination of deafness, they should ensure the key purpose remains acquisition of scientific knowledge and improvement of deaf people’s health.
Ethical Issue 2: Inaccessible Consent and Material
The existing and quite large communication gap stems from a few different places. The average written English language proficiency among Deaf ASL users are significantly lower than the general population, already creating a natural barrier with regards to consent forms. At the root of inaccessible consent and material is the available education. If researchers are already well-versed on the Deaf community and culture, this already reduces the chance of ethical missteps in the consent process and supports. Health research should ensure accessible research materials, including informed-consent documents. Increasing accessibility of research studies to smaller populations such as the Deaf community helps to generate more representative findings, at the same time, improving the equity of those who benefit from the advancement of health research.
Despite increasing evidence of substantial health issues within the Deaf ASL community, it is largely understudied and thus underserved. ASL users rarely participate in clinical research in part due to exclusion criteria, inaccessible informed-consent processes, inadequate recruitment strategies, and lack of cultural knowledge
Ethical Issue 1: Absent Representation
Historically, Deaf related studies placed a focus on the elimination of deafness through innovative technologies and engineering. For example, The eugenics movement (1880-1950) in the United States and the United Kingdom, displayed many questionable moral acts in the name of ‘better breeding’. Instead of focusing on the complete elimination of deafness, they should ensure the key purpose remains acquisition of scientific knowledge and improvement of deaf people’s health.
Ethical Issue 2: Inaccessible Consent and Material
The existing and quite large communication gap stems from a few different places. The average written English language proficiency among Deaf ASL users are significantly lower than the general population, already creating a natural barrier with regards to consent forms. At the root of inaccessible consent and material is the available education. If researchers are already well-versed on the Deaf community and culture, this already reduces the chance of ethical missteps in the consent process and supports. Health research should ensure accessible research materials, including informed-consent documents. Increasing accessibility of research studies to smaller populations such as the Deaf community helps to generate more representative findings, at the same time, improving the equity of those who benefit from the advancement of health research.
General Ways to Improve Existing Ethical Issues
- Understand the Deaf community’s cultural identity as “deafness” being a unique feature and NOT as a disease or disability. Pedius’ whole mission is founded on this entire principle. That accessibility should be seen as an opportunity for all aspects of life.
- Engage the Deaf community, especially ASL and NON ASL users alike to identify priority areas of research. The community itself holds different expectations and needs that what researchers may anticipate.
- Encourage the participation in community boards, committees, etc… BECAUSE It is critical that health researchers work closely with community members and organizations to learn about the health inequities that need to be addressed.
- Require informed consent, due to the important information because they convey important information to make a voluntary decision. Many rely solely on written English, a huge and impossible obstacle for ASL users.
Conclusion
Diversity needs to be protected and respected in our health care and medical research settings. Mistrust is often created when there is a lack of knowledge and understanding. Based upon the suggested ways to improve existing ethical issues, implementing innovative strategies and solutions that underline the importance and respect of community representation and collaboration while specifically studying Deaf populations can begin to resolve discrepancies of information and promote positive experiences in the area of research.
Lauren Anders
International Business and recent MBA Graduate - enjoying her Italian lifestyle. Since 2016 she has been working at Pedius as the Business Developer for all English speaking countries.