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Deaf kids: who decides?

21 Mawrth 2008

Babies

A controversial Bill currently passing through the Houses of Parliament is to be the focus of a major national public debate in Cardiff about deafness and embryo selection.

Organised by Wales Gene Park in partnership with the Progress Educational Trust, Deaf kids: Who decides? is the first public discussion of its kind to be held anywhere in the UK, attracting leading academics in the field including Dr Anna Middleton, Consultant Research Genetic Counsellor at the School of Medicine.

Chaired by Graham Turner, Chair of Interpreting and Translation Studies at Heriot-Watt University, the evening event will see experts debate the issues from contrasting perspectives, discuss whether allowing changes to the Bill will undermine reproductive confidence in the deaf community, and raise questions as to whether deafness should be considered a serious disability and be included in the Bill at all.

Dr Middleton will present her latest research on deaf individuals’ understanding and perceptions of genetics and their needs from genetic counselling services to lay deaf and hearing people, and other leading academics. She will be joined by principal academics in the field of genetics, medical ethics, sign language, and deaf studies to discuss deafness and embryo selection, including Steve Emery, British Sign Language Research Associate at Heriot-Watt University, and Colin Gavaghan, Lecturer in Medical Law and Ethics at University of Glasgow.

The new Bill, set to replace the Human Fertilisation and Embryology Act 1990, includes a clause which could make it illegal for parents undergoing embryo screening to choose an embryo with an abnormality if healthy embryos exist. Clause 14(4)(9) of the 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. But is deafness considered a ‘serious disability’? In the official Explanatory Notes to the Bill, and also during proceedings in the House of Lords, it has been defined as such; the Clause has been added to prevent the selection of embryos with the genes for deafness.

Dr Middleton says: "Clause 14 has promoted fierce debate, with critics arguing that it impedes reproductive liberty and undermines reproductive confidence. At the same time, supporters of Clause 14 argue that the deliberate creation of deaf babies is immoral. There’s no doubt that this is a highly emotive subject and the public should be involved. This debate is aimed at providing people with a balanced and professional discussion on these reproductive and genetic issues."

The free event at Techniquest, Stuart Street, Cardiff Bay on Wednesday 9 April 2008 has been funded by the Wellcome Trust and supported by the RNID. It will take place from 6.30pm to 8pm and palentypists and British Sign Language Interpreters will be at the event.

To book a place, contact Claudine Anderson at Cardiff University by email, andersoncn@cf.ac.uk, or by telephone 02920 475 475.