Whose deaf genes are they anyway? The Deaf community challenge to legislation on embryo selection

Scientific and technological advances in genetics have been proceeding at an astonishing rate. The Human Genome project, completed in 2003 after thirteen years, identified the full genetic code for human beings (see special supplement of Nature [ June 1, 2006] on the “Human Genome Collection”). The basic objective of the project was to learn more about our genetic makeup in order to assist with diagnosing and treating or even curing human diseases. By 1994 four genes involved with nonsyndromal deafness had been discovered; by 2007 this number had increased to forty-five, and the location of more than one hundred others had been pinpointed (Martini, Stephens, and Read 2007, ix). As these figures were published, another gene (known as TGBF1) responsible for causing a common form of hearing loss, otosclerosis, was discovered (Times [ June 18, 2007]). As this present article was being drafted, further news emerged that highlighted developments in stem cell research indicating that hair cells can be repaired and, ultimately, hearing restored (BBC News, “Stem Cell ‘Deafness Cure’ Closer,” April 1, 2009). Discoveries are likely to continue at a fast pace, given ongoing research and development in the field. In the literature on the implications of genetics for Deaf people, their families, and their communities, a spotlight falls upon fears that genetic technology could lead to a significant reduction in the size of the Deaf population (Middleton, Hewison, and Mueller 1998; Stern et al. 2002). In particular, such a shift could be due to parents “selecting against” deafness by choosing to keep embryos with the genes for hearing or to the use of gene therapy to treat or cure deaf adults. Such fears can be exacerbated by those researchers who consider the ultimate goal of genetic research as being the prevention or treatment of deafness and the universal establishment of “normal” hearing (see, for example, Martini, Stephens, and Read 2007). This discourse is encouraged by regular media reports, which often refer to discoveries in genetics as having the potential to “cure” deafness (more recent examples appear in the Telegraph [August 27, 2008], “Cure for Deafness Now within Reach,” and the New Scientist [February 2, 2005], “Gene Therapy Is First Deafness ‘Cure’”). The practicalities of the impact of genetic technology on Deaf people have already been discussed in this journal (Arnos 2002) and also elsewhere (Middleton 2006, 2009; Scully 2008).