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.
This article centers on the implications of genetic developments (as a scientific and technological discipline) for those Deaf people who identify as a cultural and linguistic minority group and are concerned with the preservation and development of sign language and Deaf culture. We explore the impact of one particular legislative initiative that is liable to directly affect the reproductive liberty of Deaf people in the UK. In particular, we document the challenge that was instigated by the international Deaf community toward this clause. Before outlining the item of legislation that renewed debate on this topic in the UK, we briefly review the current availability of genetic technologies pertaining to deafness. We then summarize the nature of the opposition to this initiative and describe the steps taken to campaign against it and discuss the prospects such legislation raises for Deaf people. We conclude by reviewing the outcome in terms of the landscape that remains following this matter. In brief, our context is as follows. The United Kingdom’s Human Fertilisation and Embryology Act (2008) contains a clause in it that (as originally written) sought to prevent people from choosing to keep certain embryos—including those with characteristics pertaining to deafness—when using assisted reproduction techniques. Within the UK Deaf community, this clause not only fueled ongoing fears that this technology was ultimately aimed at preventing the birth of deaf people but also raised an alarm that politicians could—openly and largely without challenge—revive the implication that deaf people are generally unwanted. Our article therefore looks at how genetic technologies have been seen to pose a severe risk to the future of the Deaf community and how the Deaf public and its allies have attempted to generate and participate in public debate on the issue.
This article is based on an empirical research study of deaf migration, using an intersectional lens. The study of migration and the lens of intersectionality are increasingly being deployed in academic circles but both are very recent when it comes to the study of deaf people. Our key reason for using the lens of intersectionality is twofold. Firstly, we believe that it enables us to highlight the experiences of people who tend to be neglected in the scholarly literature -in this article, our focus will a case study of two Black deaf African migrants. Secondly, we want to encourage the reader not merely to 'add' migration as an identity/experience of the lives of a community of deaf peoples but to examine and explore the interlocking relations of power that they experience. We believe intersectionality is an ideal lens through which to do so. Points of interest• In the literature on the study of disabled people when many identities are being examined it is not always clear if deaf migrants are included; in this article we do so. • We studied interviews that had been held covering the life experience of two deaf migrants, which were undertaken within a larger research project. • We found it useful to look at deaf migrants' different experiences within institutions such as education and the Home Office, in relation to their identities such as ethnicity, gender, sexuality, class or religion • We found that while deaf migrants experience discrimination and racism from deaf and hearing people alike, they also find means of solidarity and support from different hearing and deaf people and groups. • It is suggested that social policymakers and deaf communities can miss or neglect deaf migrants' wide range of life experiences -these need to be identified and included when forming policy.
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