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

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

The World Media …..

Human Fertilisation & Embryology Bill

Proposed Legislation: Deaf & Genetics FAILED! RESULT: Parliament proposing policy on the back of media hysteria! “ There has been a well-publicised case in the United States, of a deaf couple who wished to select a deaf donor so that the resulting child would also be deaf, and therefore share more closely the parents’ experience of the world. The House of Commons Science and Technology Committee considered this issue and concluded that the desire to select a child who would suffer obvious discomfort or worse was an area needing further debate .” Review of the Human Fertilisation and Embryology Act, Department of Health 2005

FAILED!

RESULT: Parliament proposing policy on the back of media hysteria!

“ There has been a well-publicised case in the United States, of a deaf couple who wished to select a deaf donor so that the resulting child would also be deaf, and therefore share more closely the parents’ experience of the world. The House of Commons Science and Technology Committee considered this issue and concluded that the desire to select a child who would suffer obvious discomfort or worse was an area needing further debate .”

Review of the Human Fertilisation and Embryology Act, Department of Health 2005

Human Fertilisation & Embryology Bill 14(4)(9) “Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop— (a) a serious physical or mental disability, (b) a serious illness, or (c) any other serious medical condition, must not be preferred to those that are not known to have such an abnormality.”

14(4)(9) “Persons or embryos that are known to have a gene, chromosome or mitochondrion abnormality involving a significant risk that a person with the abnormality will have or develop— (a) a serious physical or mental disability, (b) a serious illness, or (c) any other serious medical condition, must not be preferred to those that are not known to have such an abnormality.”

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

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

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

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

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

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

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

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

Explanatory Note for Clause14(4)(9) “… This would prevent similar situations to cases, outside the UK, where positive selection of deaf donors in order deliberately to result in a deaf child have been reported.”

“… This would prevent similar situations to cases, outside the UK, where positive selection of deaf donors in order deliberately to result in a deaf child have been reported.”

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

The Big Picture Genetic selection is not new Mate selection and playing the odds Genetic screening (Tay Sachs in Jewish Communities) Amniocentesis and Down Syndrome Indicator of future NBIC issues for Deaf community

Genetic selection is not new

Mate selection and playing the odds

Genetic screening (Tay Sachs in Jewish Communities)

Amniocentesis and Down Syndrome

Indicator of future NBIC issues for Deaf community

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

What Sorts of People: Approaches Diversity – world is a better place with diversity of thought, culture, language Intrinsic value – Deaf communities have worth in themselves Instrumental values – Deaf communities have external value The problem of means/end reasoning

Diversity – world is a better place with diversity of thought, culture, language

Intrinsic value – Deaf communities have worth in themselves

Instrumental values – Deaf communities have external value

The problem of means/end reasoning

Bioethics Dialogue Who is asking these questions? What questions are being asked? Who is driving the dialogue? Where is the dialogue taking place? What is the role of Deaf Academics?

Who is asking these questions?

What questions are being asked?

Who is driving the dialogue?

Where is the dialogue taking place?

What is the role of Deaf Academics?

Citizenship: Messages from the Media Reflect society view of Deaf people? Citizenship unequal Better off dead

Reflect society view of Deaf people?

Citizenship unequal

Better off dead

UK Govt: We Agree Equal Citizenship But … you are better off dead. The full statement made in the House of Commons recognising BSL ( HC Deb , 18 March 2003). It came under the title 'British Sign Language'. The Secretary of State for Work and Pensions (Mr. Andrew Smith): The Government recognise that British Sign Language (BSL) is a language in its own right regularly used by a significant number of people. For an estimated 70,000 deaf people it is their preferred language for participation in everyday life. BSL is a visual-gestural language with its own vocabulary, grammar and syntax. The Government understand that people who use BSL want their language to be protected and promoted in the same way some minority languages are by the Council of Europe's Charter for Regional or Minority Languages. The Council is considering how that might be achieved for indigenous sign languages. The Government will give careful consideration to any proposals which the Council might make. The Government have already taken action to improve access to BSL, for example by identifying situations where it might be reasonable for employers and service providers to engage the services of a BSL/English interpreter. The Government will be funding a discrete programme of initiatives to support this statement .

But … you are better off dead.

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

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

Questions for Deaf Academics: 1 What is our relationship with/to the Genetics Medical Academic field? Should we get involved in the area? Yes or No? If ‘yes’, what should be the extent of our involvement: Scientists identifying deaf genes? Genetic Counsellors? Researchers on Social/Historical implications?

What is our relationship with/to the Genetics Medical Academic field?

Should we get involved in the area? Yes or No?

If ‘yes’, what should be the extent of our involvement:

Scientists identifying deaf genes?

Genetic Counsellors?

Researchers on Social/Historical implications?

Questions for Deaf Academics: 2 AND… What would be our reason(s) for involvement: Career Development? Research Interest? Protecting/Advancing Deafhood?

AND…

What would be our reason(s) for involvement:

Career Development?

Research Interest?

Protecting/Advancing Deafhood?

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

Website: www.stopeugenics.org