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

Abstract

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.

Ethical Issues in Conducting Research With Deaf Populations

“…22,23 By failing to fully engage the Deaf community in dialogue about such findings and the research agenda, such research fuels fears that consequential genetic engineering may result in a substantial reduction of the number of congenitally Deaf individuals through prenatal genomic testing and genetic counseling. 24,25 Approximately 75–80% of the more than 400 identified deaf genes are recessive, with a smaller proportion being autosomal dominant (20%) and X-linked (2–5%), 2627 which results in a high proportion of deaf individuals born to hearing parents.…”

Engaging the Deaf American Sign Language Community: Lessons From a Community-Based Participatory Research Center

“…Even today, there are government bills in Europe and Australia that interpret deafness as a defective condition, amenable to genetic screening, elimination, or correction. 37 …”

Deaf-Hearing Family Life

“…Three years ago, the U.K. media was briefly and intensely saturated-choked even-by morally, politically, and philosophically charged debate over reproductive liberty, cures for (even elimination of) deafness and the "creation" of "designer" babies. The Human Genetics Commission, an advisory body to the U.K. government, had failed to consult with deaf communities on the pertinent proposed HFE amendments, and in doing so, disregarded the idea that deafness might not be viewed by members of the deaf community or by their families as a serious, undesirable, or abnormal medical condition (Emery et al, 2010). The HFE Act (2008) has been passed.…”

“…Debate in the Lords, largely inaccessible to deaf communities, implied that the selection of an embryo liable to grow into a deaf person 3 (or a seriously ill or disabled person) would be prohibited by Clause 14 (Emery, Middleton, & Turner, 2010). Deaf activists and organizations were horrified.…”