Informed consent and deafness in South Africa: Guidelines for clinicians and researchers

Abstract

Persons with severe to profound hearing loss are potentially vulnerable participants in research trials. Standard enrolment practices are likely to threaten or limit the process of informed consent. Misconceptions held by the hearing community about hearing loss and the impact of amplification of hearing, as well as on the nature of signed language, may jeopardise the process. This is particularly the case in the complex sociopolitical context of South Africa, which has significantly influenced the educational and linguistic status of deaf persons. This paper describes factors of importance, and suggests a number of guidelines for researchers using deaf participants. The paper will highlight some relevant dimensions of deafness to take into account, and the impact of socioeconomic context on this issue. Three case examples will be used to illustrate the complexities of the issues.