A heated debate on the subject of embryo selection and deafness has been sparked in the UK, by a deaf couple who resent the impediment to having a deaf child posed by prospective legislation.
Clause 14 of the new Human Fertilisation and Embryology Bill says that in assisted reproduction, embryos known to be at risk of developing 'serious physical or mental disability' or 'serious illness' must not be preferred to embryos where there is no such risk. In the official Explanatory Notes to the Bill, and also during proceedings in the House of Lords, it has been specified that Clause 14 will prevent selecting embryos for deafness. This has prompted fierce disagreement, with critics of Clause 14 arguing that it impedes reproductive liberty and undermines reproductive confidence, while supporters of Clause 14 argue that the deliberate creation of deaf babies is immoral.
Debate on the subject has simmered since the Bill was published in 2007, but has been given increased public prominence since the recent intervention of deaf couple Tomato Lichy and Paula Garfield. Lichy and Garfield have one deaf three-year-old daughter and are considering trying to have another child, possibly using IVF and possibly using genetic testing to check for risk of serious disease. The couple do not wish to reject an embryo, as the new law would arguably compel them to, on the grounds that it is likely to be deaf. Lichy and Garfield celebrate the cultural (as distinct from medical) aspects of deafness, and do not accept the common view of deafness as a disability.
The couple have been interviewed extensively in the print, broadcast and online media, attracting both support and opprobrium for their views. In addition to stark differences of opinion on the ethics of the subject, there has also been some dispute as to what Clause 14 actually means. For one thing, deafness is not referred to in the Bill proper, but only in supporting material. Furthermore, it is ambiguous whether deafness is discussed in this supporting material as merely an example of the sort of disability that could not be deliberately transmitted to a child under the new law, or whether the prevention of selecting for deafness is Clause 14's principal purpose. Finally, it is unclear how Clause 14 will be interpreted if decisions need to be made in the clinic regarding multiple embryos at risk of developing different problems.
Sandy Starr is Webmaster of BioNews and Communications Officer at the charity that publishes it, the Progress Educational Trust (PET). He has contributed chapters to Crime and Deviance in Cyberspace (buy this book from Amazon UK or Amazon USA) and Hate Crimes (buy this book from Amazon UK or Amazon USA).