Academic journal article Sign Language Studies

Views, Knowledge, and Beliefs about Genetics and Genetic Counseling among Deaf People

Academic journal article Sign Language Studies

Views, Knowledge, and Beliefs about Genetics and Genetic Counseling among Deaf People

Article excerpt

OUT OF THE one in five hundred children born with moderate-to-profound, congenital, or early-onset deafness, more than 50 percent have this condition due to a genetic cause (Morton and Nance 2006). Therefore, within the UK there are under a hundred thousand people with a genetic or an inherited form of deafness or hearing loss; within the United States this number reaches several hundred thousand. Several hundred genes involved with deafness have been identified (Smith and Van Camp 2009), and it is now possible for Deaf and hard of hearing adults to explore the genetic basis of their deafness and find out what the chances are of passing this on to their children.

One health service offered by geneticists and genetic counselors is genetic counseling, which presents information to clients about the risk of inheriting or passing on various genetic disorders (McCarthy Veach, LeRoy, and Bartels 2003). The vast majority of consultations contend with serious, life- threatening conditions. For example, people may wish to know whether they are at risk for inheriting an aggressive form of breast cancer that has affected several of their close relatives. Or a couple may wish to have a genetic test done on their embryos because they wish to avoid a genetic condition that their previous child died from. Deaf adults very rarely utilize genetic counseling services either to discuss any medical conditions in their family that they may be concerned about or to discuss issues relating to deafness (personal communication from three regional genetics services in the UK).

Genetic counseling not only offers medical and technical information about a client's genetic makeup but also pays specific attention to the delivery of such information in a nonjudgmental and supportive environment (Djurdjinovic 1998; Skirton and Patch 2002; McCarthy Veach, LeRoy, and Bartels 2003). There is also no underlying agenda to reduce all disability in society via the use of genetic counseling: Genetics professionals aim to be nondirective and do not have predetermined ideas on the decisions that clients should or should not make (McCarthy Veach, LeRoy, and Bartels 2003).

Deaf clients may wish to attend genetic counseling to discuss their family history of deafness, and the different personal perspectives they have about the significance of deafness will direct the focus of their consultation (Arnos, Israel, and Cunningham 199 1). For example, hard of hearing, spoken language users who have a childhood-onset, progressive hearing loss may feel strongly that they do not wish to pass their hearing loss on to their children. With this in mind, they may attend genetic counseling to investigate the chances of this happening and to ask whether they can have a test in pregnancy for the genes for deafness. On the other hand, a Deaf couple who use a signed language and are proud of having several generations of deafness in the family may be interested in genetic counseling to understand the exact genetic basis of the deafness, just for information's sake. It is known that deaf people often choose to have a deaf partner (Schein 1989). Such partnerships maintain the high frequency of deafness-causing genes in society (Nance, Liu, and Pandya 2000), and indeed some deaf people are excited about using genetic testing so that they can learn whether they and their partner have an increased chance of having deaf children (Middleton 2006). Deaf and hard of hearing people may also wish to attend genetic counseling to discuss issues entirely unrelated to deafness. When offered an opportunity to discuss their family history of deafness, many deaf adults reported that they would be interested in knowing more about why they were deaf and what the chances were of passing this on (Withrow et al. 2008).

Potential clients are free to decide for themselves whether to access genetic counseling services. We ourselves do not have an underlying assumption that all deaf people should participate in genetic counseling. …

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