Client Views on Genetics, Genetic Counseling, and Genetic Testing for Deafness
Culturally Deaf individuals may come into a genetic counseling session with preconceived views toward the genetic counseling process, which may be positive or negative. In one study, culturally Deaf participants were seven times more likely to use negative words rather than positive words to describe how they felt about new discoveries in genetics (A. Middleton, Hewison, & Mueller, 1998). In the same study, 55% of deaf/Deaf individuals answered that genetic testing would do more harm than good, 46% thought that its potential use devalued deaf people, and 49% were concerned about new discoveries in genetics. It is important for the genetic counselor to be aware of these biases. An individual’s perceptions about genetic counseling may be influenced by the cultural definition of deafness, how the person views their own deafness, and their preferences for deaf or hearing children (Israel, Cunningham, Thumann, & Arnos, 1992).
In the past, schools for deaf children were referred to as schools for “the deaf and dumb.” Deaf people were encouraged not to marry each other to avoid passing on the deafness to their children. Under the Nazi regime, deaf children and adults were ordered to be sterilized. Given the historical context to the misuse of genetic knowledge, it is no surprise that d/Deaf people are often suspicious of modern day genetics services. There is often a sense that genetics services in the past “devalued” the role of Deaf people in society (A Middleton, 2007).
There has been considerable discourse about reproductive decision making and the Deaf. Some d/Deaf individuals are reluctant to participate in genetic counseling at all for fear that they will be told not to have children. Some couples would welcome the birth of a deaf child ("American College of Medical Genetics Statement: Genetics Evaluation Guidelines for the Etiologic Diagnosis of Congenital Hearing Loss," 2002). One study suggested that Deaf individuals often do not have a preference for deaf or hearing children or an interest in prenatal diagnosis for hearing status (Enns, Boudreault, & Palmer, 2009). In another study, nearly two-thirds of hearing individuals expressed interest in attending a genetic counseling session before proceeding with genetic testing for deafness, but only 42% of the deaf/hard of hearing group expressed interest (Martinez, Linden, Schimmenti, & Palmer, 2003). The results of this study suggest a degree of hesitation in seeking genetic counseling services within the broader deaf and hard of hearing community. A culturally sensitive genetic counselor will provide information and services in a way that is open to different reproductive decisions and cultural perspectives.
No matter what the reason for referral for health care, providers need to be cognizant of past inequities in treatment of people with deafness, as these may influence the client’s perspectives. Members of Deaf culture consider it important that geneticists and genetic counselors be familiar with their culture. In a national survey, when asked if the professional discussing genetic testing should be familiar with deaf culture, 95.4% of young deaf adults responded “yes” (Withrow, et al., 2009).