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

Abstract

Genetic counseling is part of the social response to the science of genetics. It is intended to help twenty-first-century societies manage the consequences of our ability to observe and intervene in our genetic makeup. This article explores the views, knowledge, and beliefs of some Deaf and hard of hearing people about genetics and genetic counseling. Deaf adults are often interested in knowing why they are deaf and whether deafness can be passed on to their children. They may also be interested in knowing about other traits in their family (e.g., inherited cancer). These issues are routinely addressed within the health service of genetic counseling as offered by clinical geneticists and genetic counselors. However, in the United Kingdom, very few Deaf and hard of hearing adults either seek out a referral for genetic counseling or utilize this clinical service. There are many complex reasons for this, within this article we focus on what deaf people think genetic counseling is and how they feel about new discoveries in genetics. The data have been gathered via a structured questionnaire completed by 573 Deaf and hard of hearing people, with additional information gathered via the free-text comments provided in the questionnaires. A Deaf researcher also completed thirty interviews with Deaf participants in British Sign Language. The participants in the study sample were recruited from the readership of two magazines for Deaf and hard of hearing people in the UK. Our results show that 50 percent of the participants indicated they knew what genetic counseling was before they read the questionnaire, but 80 percent did not know how to get such counseling. We conclude that, in order for Deaf and hard of hearing people to make an informed choice about whether they wish to access genetic counseling services, they need to internalize accurate information about what services are available to them. This article shows that the benefits of genetic technologies are by no means unquestioned in our societies.

American College of Medical Genetics and Genomics guideline for the clinical evaluation and etiologic diagnosis of hearing loss

“…72,85 Providing genetic services in a linguistically and culturally sensitive manner has been shown to improve outcomes such as genetics knowledge and understanding. 86,87 Furthermore, using neutral or balanced terminology, such as "chance" instead of "risk, " "deaf " or "hearing" instead of "affected" or "unaffected, " and exercising caution in the use of terms such as "handicapped, " "pathology, " and "impairment" can enhance the provision of genetic services to deaf and hard-of-hearing individuals and their families. 86,88,89 …”

Effect of Pre‐test Genetic Counseling for Deaf Adults on Knowledge of Genetic Testing

“…While a recent study found that deaf individuals may have some familiarity with the concept of genetic counseling (Middleton et al 2010a), there is a paucity of data on the effectiveness of genetic counseling to enhance genetics knowledge outcomes in the deaf and hard-of-hearing population, including the Deaf community.…”

Deaf Genetic Testing and Psychological Well‐Being in Deaf Adults

“…Historically, however, there has been limited (or few) genetic counseling services tailored specifically for the deaf adult population outside of very unique settings such as Gallaudet University, a U.S. university for deaf students (Arnos, Cunningham, Israel, & Marazita, 1992; Arnos, Israel, & Cunningham, 1991b). Thus, although a number of studies have demonstrated that deaf individuals are interested in learning why they are deaf (Arnos et al, 1991b; Boudreault et al, 2010; Burton, Withrow, Arnos, Kalfoglou, & Pandya, 2006; Martinez, Linden, Schimmenti, & Palmer, 2003; Withrow et al, 2009), it is still the case that few deaf individuals seek genetic counseling or genetic services (Enns, Boudreault, & Palmer, 2010; Middleton, Emery, & Turner, 2010). This study underscores the importance of addressing the determinants of low utilization of genetic services by deaf adults because it provides empirical data that genetic information can enhance psychological well-being among individuals who receive a genetic explanation for why they are deaf.…”