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Whose Deaf Genes Are They Anyway?: The Deaf Community’s Challenge to Legislation on Embryo Selection

From: Sign Language Studies
Volume 10, Number 2, Winter 2010
pp. 155-169 | 10.1353/sls.0.0037



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.

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