The document discusses genetic selection and the deaf community in the context of the UK's Human Fertilisation and Embryology Bill. It notes that some deaf couples seek deaf donors to increase the chances of a deaf child and sees this as a debate around disability and eugenics. The bill proposed to prevent choosing embryos known to have disabilities but failed to pass. The implications for deaf academics and communities are complex with issues around diversity, citizenship, and future reproductive choices.

1. Alison Bryan, Wales Teresa Blankmeyer-Burke, Gallaudet University, USA Dr Steve Emery, Heriot Watt-University, Scotland/Cardiff University, Wales Human Fertilisation and Embryology Bill: Genetic Selection & the Deaf Community

2. Duchesneau and McCullough: “ When they were looking for a donor …. one thing they knew was that they wanted a deaf donor.” “ Though they have gone to all this trouble, Candy and Sharon take issue with the suggestion that they are "trying" to have a deaf baby.” "A hearing baby would be a blessing. A deaf baby would be a special blessing.” “ wanted to increase our chances of having a baby who is deaf” March 2002

3. The World Media …..

4. Human Fertilisation & Embryology Bill

7. What does 14(4)(9) say? IVF WANT A CHILD Cannot get pregnant without medical assistance

8. What does 14(4)(9) say? Clinic IVF Egg Sperm

9. 14(4)(9): Family Donors DEAF DEAF FAMILY Use family egg(s) Use family sperm

10. 14(4)(9): Outside Donors Need Donor Outside Family Deaf Genes Deaf Genes Hearing Genes Deaf Genes Deaf Genes Hearing Genes Potential Donors: Outside Family Maybe gay, single , partner infertile, etc

11. What does 14(4)(9) say? Embryos Embryos Fertilised

12. What does 14(4)(9) say? Clinic IVF Pre Implantation Genetic Diagnosis (PGD) Embryos “ Choice”

13. 14(4)(9): PGD Testing DEAF DEAF DEAF DEAF DEAF HEARING

14. What does 14(4)(9) say? Clinic IVF Pre Implantation Genetic Diagnosis (PGD) Embryos No Test: Pick Random Embryo(s) implanted in woman DONOR: HUMAN RIGHTS EMBRYO: NO HUMAN RIGHTS

16. Parliamentary Debate …. I hope that your Lordships will be pleased that the deliberate choice of an embryo that is, for example, likely to be deaf will be prevented by Clause 14 . Baroness Deech, November 2007

18. What Sorts of People? Provocative ethical question with deep philosophical roots – technology now shifts the emphasis of discussion from nurture to nature

23. Future Choice: No Choice? Pre Implantation Genetic Diagnosis (PGD) Embryos No Test: Pick Random Embryo(s) implanted in woman

24. Long Term: 20 – 50 years 1990 2008 2026 2044 2062 and beyond …..

27. A Foot in the Door.. Steve Emery , research fellow , Teresa Blankmeyer Burke , bioethicist , Anna Middleton , consultant research genetic counsellor , Rachel Belk , genetic counsellor and NIHR research fellow , Graham Turner , chair of interpreting and translation studies BMJ 2008;336:976 (3 May), doi:10.1136/bmj.39563.495741.80

28. Website: www.stopeugenics.org