Discriminatory HFE Bill Denies Liberty

As you may be aware, The Human Fertilisation and Embryology Bill is currently passing through the House of Lords. We are extremely concerned with Clause 14 of this Bill, which risks being ignored or sidelined in the debate that is currently taking place on the details of the Bill.

The paragraph we refer to relates to in vitro fertilisation (IVF) and is under Clause 14 (4), and states as follows:

“(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.”

Put another way, a deaf person or embryo with the genes for deafness does not have equal status (‘must not be preferred’) to a person without the genes for deafness.
If passed, this amounts to introducing eugenics practices into UK law, which should be of major and serious concern to all UK citizens.
There are a number of commentary notes and ‘consultation’ documents that indicate Deaf people are being used as an example of what this amendment would entail in practice:

(A) The explanatory notes accompanying the Bill, no. 109 to be precise, states that the results of the Clause: “…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.” ;
(B) Comment by Baroness Deech in the House of Lords: “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”; and
(C) Consultation document commentary paragraph 5.35 by Human Genetics Commission: “While the exclusion of people with genetic disorders such as inherited deafness as gamete donors is controversial, we feel that current restrictions are reasonable and should be maintained…. [no] treatment services should be used specifically to create a deaf child – or, indeed, a child with any other inherited disorder.”

We wish to state why we strongly object to this Clause of the Bill:

• The Clause would result in taking the woman’s right of control over her own fertility out of her hands and into those of the law.
• It is therefore a prevention of the principle of reproductive liberty.
• It introduces eugenics into UK law that is completely anathema with UK government policy and practices, and we are horrified that a government should choose to target a vulnerable section of society to whom this should apply.

There are a number of very serious issues this Clause gives raise to:

• The three examples given above of the relationship of the Bill to Deaf people seems to give the mistaken impression that, generally, deaf people are on a mission to use genetic technology to create deaf babies; this is simply inaccurate and the issue is being seriously misrepresented.
• Creating and bringing up a family are very personal and private issues, and deaf individuals should have the same degree of control over their reproductive situation as hearing people.
• If the Bill is accepted as it is then the only purpose for having a test to see if an embryo has genes associated with deafness will be specifically to allow the preference of a hearing embryo over a deaf one.
• If a deaf couple had their embryos tested and found there were 9 deaf embryos and 1 hearing one, they would have to, by law, have the hearing one implanted. How does this fit with those deaf couples who don’t mind if their children are deaf or hearing as long as they are healthy?
• A couple, however, who wish to choose a hearing embryo and discard the deaf ones, will be able to do so.
• This Clause uses deafness as an example of where ‘disabled babies’ should not be allowed; but in fact could apply to other disabled groups, for example, those of restricted growth.
• The Clause could be interpreted as coming into contradiction with the UN Convention on the Rights of Persons with Disabilities. In Article 3 (d), the Convention states that the principles of the Convention shall be: ‘Respect for difference and acceptance of persons with disabilities as part of human diversity and humanity’.
• We remind the government that it recognised British Sign Language as a language in its own right on 18th March 2003; to therefore seek legislation to deny Deaf people reproductive liberty contravenes such a statement.

The extensive consultation exercise carried out by the Human Genetics Commission and the Department of Health did not make concerted efforts to seek the views of those most affected by this Clause:

• The consultation document comments do not clarify the strength of feeling amongst Deaf people of their linguistic and minority group status in society.
• Deaf people value their sign language and culture, and do not consider themselves as individuals who have ‘defective genes’.
• Deaf people also object to being referred to as people who carry an ‘abnormality’ in their genes; in families of deaf people, children (deaf or hearing) perceive deafness to be a ‘normal’ state.
• The consultation document paragraph 5.35 states that Deaf people should remain valued once born, but is contradicted by disallowing such couples reproductive liberty.
• We are not aware of any contact with Deaf organisations in the consultation process.
• It seems that those who have made the conclusion within this report have not carried out an informed debate and have in fact guised it as ‘consultation’ when it has not consulted effectively.

We call on Parliament to omit Clause 14(4), section 9 from the Bill on the basis that it:

1. Explicitly discriminates against deaf and disabled couples; and
2. Denies deaf and disabled people reproductive liberty, which we believe to be a fundamental, democratic right.

• Dr. Steve Emery
• Dr. Paddy Ladd
• Mark Wheatley, Executive Director, European Union of the Deaf (EUD)
• Dr. Rachel Hurst, Director: Disability Awareness in Action
• Jonathan Isaac
• Dr. Andrew Alexander, NHS Consultant Physician and Parent of Deaf Adults
• Bob Duncan, Chair, Tyneside Deaf Children’s Society
• Celia Hulme, Director of Community Development, East Lancashire Deaf Society
• Rob Wilks, Solicitor
• John J Williams, Deputy Chief Executive, Deafway
• Dr. Tyron Woolfe
• Professor Alys Young, University of Manchester
• Sylvia Simmonds, Vice chair of British Deaf Association
• Colin Revell, Hull and East Riding Mental Health Action Group
• Jeff McWhinney - Managing Director, Significan’t (formerly CEO of the British Deaf Association) & father of four deaf children
• Robert Adam, Postgraduate Researcher, City University, London
• John A. Hay FRSA, University of Wolverhampton’s Department of Deaf Studies & BSL/English Interpreting, Churchill Fellow 2006, Chair of British Deaf History Society, Patron of Sandwell Deaf Community Association, Trustee of BID Services for Deaf People, Trustee of Wolverhampton Church Association for the Deaf, broadcaster and father of 2 Deaf boys
• Clark Denmark; Senior Lecturer, International Centre for Sign Languages & Deaf Studies, University of Central Lancashire; Chair of BSL Academy
• Angela Fenney, BSL Level 3, BA Hons Communication Design, Communication Support Worker
• Helen Fitzgerald, Chief Executive Officer, Deafness Resource Centre, St Helens
• Megan Alexander, Photography student
• Maria Ash, Deaf Mother of five Deaf wonderful children
• Robin Ash, Community Development Manager, Deaf Cultural Centre UK & Deaf father of five Deaf wonderful children
• Maria Bailey, MA(Education), BA(Hons)Education, C.S.W., New College, Durham
• Simon Bak, Board member, Danish Deaf Youth Association
• Maria Barile (MSW), Eco-Access
• Penny Beschizza, Coordinator of Deaf Students, Southwark College, and a Deaf Parent
• Kate Boddy, Advocacy Service Manager, Deafness Resource Centre, St Helens
• Nancy T. Blanchard, M.Ed., DI., ASL & Literacy Instructor, George Brown College, Toronto
• Sylvia Bouwman, Professional Sign Language Interpreter
• Laura Burrows, Employment Specialist, The Canadian Hearing Society - Toronto
• Emma Ferguson-Coleman, Operations Director, Definitely! Advocacy
• Judith M Collins, Lecturer Durham University
• Pamela R. Conley, Associate Professor, Department of Liberal Studies, National Technical Institute for the Deaf
• Lucy Cotton, Communication Service Manager, Deafness Resource Centre, St Helens
• Dr. O.A. Crasborn, Postdoctoral Researcher, Department of Linguistics, Radboud University Nijmegen
• Henrietta Cubitt, Cambridge
• Jayne Cunliffe, Hearing Mother of Deaf Child
• Corrin Davies, MRSLI
• Ian Depledge, British Deaf Association & father of a Deaf son
• Kylie Devlin - Deaf Studies Student at Bristol University
• Carolien Doggen, Frontrunners 3
• Claire and Paul Dowdican – Deaf Parents of 2 deaf boys, 3 and 1 years old
• Lucy Dunbar BSc(Hons) Deaf Studies
• Patti Durr, Associate Professor, National Technical Institute for the Deaf, a College of RIT, Rochester, NY
• Rev. Phillip Easterling
• Angela Edwards, Equipment Officer, Deafness Resource Centre, St Helens
• David Ellington, Director, VS1 Productions
• Evonne Evans, Administrator, Deafness Resource Centre, St Helens
• Sara Geudens, Deaf teacher in a school of deaf, Brussels
• Daniela Gnerlich, Deaf Education student, University Hamburg
• Simone Goldberg
• Hayley Goddard, Community Worker, Deafway
• Hannah Gurr, Babysigners Bristol, MSc student, Bristol University
• Jenny Harmer, Senior Community Worker, Deafway
• Beppie van den Bogaerde, PhD, Chair of Deaf Studies, Utrecht University of Applied Sciences, the Netherlands
• Dr Colin M Harper, Manager, Centre on Human Rights for Disabled People - Belfast
• Dianne Harris, Brighton, Queensland, Australia
• Raychelle Harris, PhD student, Gallaudet University
• Rachael Hayes, Social Worker, Tameside Adult Services
• Mark Heaton, Senior Lecturer, Deaf Studies, University of Central Lancashire, Preston
• Isabelle Heyerick, Sign Language Interpreter
• Sarah Hirons ATCL LL.B.
• Karen-Jayne Holder, Communicator for the D/deaf
• Gera Mojet-Horstede, Librarian and Student Interpreter Dutch Sign Language “My two sons (age 14 and 16) are deaf. My husband and I are hearing. We wouldn’t miss our sons for anything in the world!!! And we can’t imagine them hearing. Deaf is their identity.”
• Michelle Hull, Freelance Tutors/Assessor, Northern Ireland
• Gary Hunter, Training Service Manager, Deafness Resource Centre, St Helens
• Amy Jenkins, BSL/English Interpreter
• Katrina Gwynne-Jones, HND Photography, N.Ireland
• Margreet Joosen, Administrator Archives, Holland
• Andrew Jordan, Deaf Youth Worker
• Eveline Kars, Student interpreter for the deaf
• Paul Keenan
• Misty Kehler, Currently studying to become an ASL-English Interpreter, George Brown College
• Isabel Kennedy, “mother of a twelve year old girl with a mod-severe hearing loss and an eight year old boy profoundly Deaf even though they were a “surprise” we have no Deaf in our family history I have learnt so much and met so many new people and my life has taken a “whole new path” I wouldn’t change it for anything. I feel I am a much richer person for learning another language and enjoy my children immensely”.
• Kathryn Kennedy, Assistant Team Manager, Services to Deaf People, Tameside Social Care and Health
• Stephanie Jo Kent, ASL/English Interpreter, USA
• Susan Knights, BSc undergraduate University of Bristol
• Alison Leach Dip. SW, Area Development Officer, BID Services with Deaf People
• Raymond Lee, British Deaf History Society
• John Lilley, Retired Archives Conservator, National Archives
• Laura Lilley, BSL Tutor, Sussex Downs College, Eastbourne
• Fanny Limousin, PhD student, Paris 8 university
• Dr. Wendy Martin
• Liesbeth Matthijs, Master in Special Education, Free University of Brussels
• Maartje De Meulder, Flemish Deaf Association
• Debbie Mottee, Administrator, Deafness Resource Centre, St Helens
• Gillian Murphy Sign Language user, CSW Co-ordinator Deaf Support Barnet College, London
• Tony Nicholas, Artistic Director, Deaf Man Sign Productions, Australia
• Karina Noom, Tolk NGT: Dutch Sign language interpreter
• Manuel Ostendorf, Informatic Student, Hamburg University of Applied Sciences
• Esmail Patel, Greater Manchester Police
• Claire Perdomo, Administration Assistant, International Centre for Sign Languages & Deaf Studies, UCLAN
• Amanda Perry DipHSM “My Son went deaf at the age of three, and although this was a harrowing and difficult situation for the whole family to deal with, he over came his disability; is now happily married, with two children of his own, running his own business, successfully. I would not change him for the world his disability made him stronger and more determined than any one I know.”
• Jack Post, Senior Lecturer, University Maastricht
• Sean Power, ASL-English Interpreter, Brampton, ON Canada
• Michael Quinlan, part-time student in Deafblind Studies
• Dr. Maria Gascon-Ramos, Research Associate, Faculty of Medical and Human Sciences, University of Manchester.
• Anne Ranjan, Third Year Psychology Student at York University. North York, Canada
• Dr. Christian Rathmann, University of Bristol
• Brita Regan, CODA, AUSLAN Professional Interpreter for 15 years & mother of a Deaf baby
• Carol O’Reilly, Cairns, North Queensland Australia & Deaf Author of “Deaf Australian Story”
• Ramas Rentelis, Qualified Teacher, Researcher, DCAL, Univerisity College London
• Dr. Nancy Rice, Associate Professor - University of Wisconsin
• Sarah Robertson, Former DeafBlind, SSE and BSL interpreter retired due to (suspected) inherited Multiple Sclerosis susceptibility gene
• Debra Robins Manchester, England
• Katie Rogers, Research Assistant/MRes student, University of Manchester
• John Savva, Secretary, Islington Deaf Campaign
• Alex Schadenberg - Executive Director of the Euthanasia Prevention Coalition
• Katy Sheridan, Office Manager, Deafness Resource Centre, St Helens
• Tessa Slaughter, British Sign Language Interpreter and mother of Deaf children
• Gemma Smith, BSL Tutor, Playworker for Bristol Deaf Centre
• Lizzie Sorkin, Digital Video Specialist, Gallaudet University and RIT Alumni
• Alison Spear, Member of a 4 generation Deaf family
• Dr. Christopher Stone, DCAL, University College London
• Melanie Sylvester BSL Interpreter
• Helen Tattersall (CODA), Freelance Researcher
• Kay Temple BA (hons) Deaf Studies with Education Studies
• Dr. Ernst D. Thoutenhoofd, Royal Netherlands Academy of Arts & Sciences
• Corrie Tijsseling, MSc in Theory and History of Pedagogy, University of Utrecht
• Arie Terpstra, Project Leader, Centre for Expertise of the Royal Effatha Guyot Group, and Hearing father of three children of which two are Deaf. They all three live a wonderful life!
• Betty Trujillo, Chairperson, Islington Deaf Campaign
• Professor Graham Turner, Heriot-Watt University
• Hilde Verhelst, Board member, Flemish Deaf Youth Association
• Gerdinand Wagenaar, Sign language interpreting/workshops
• John Walker, Convener: Deaf Studies, University of Sussex
• Julia Ward, Office Administrator and In-House Interpreter Sign Solutions Interpreting Agency
• Donna West, Visiting Fellow, University of Bristol & PhD student
• Carolien Wielockx, Flemish Deaf Association, Hand in the Eye Theatre
• Liz Wilson, Development Worker, Calderdale Parent and Carers Council
• Liam Blakers, Software Engineer, Australia
• Sha Wylie BA MA(ED) FETC
• Shane Young, ASL - English Interpreter Student
• Lucy Cotton, Communication Service Manager, St Helens
• Troi “Chinaman” Lee, Deaf Rave Pioneer
• Helen Ryles: “I’m deafblind myself but I want to live in a society that appreciates diversity. Not one that encourages those with deaf fetuses to have them killed.”
• Helen Ryan, BSL/ English Interpreter
• Janeene Streather
• Betty Strobridge
• Debra Strobridge
• Janet Strobridge
• Jeffrey Strobridge
• Anne Pridmore
• Ellen H. Smith
• Delroy Nelson
• Emily Wright
• Delanne Woodall
• David Woodfield
• Matthew Woodford
• Amanda Weingarten
• Roberta Weitze
• Sofie Vandiest
• Miles Thomas
• Colin Singh
• Laura Smith
• Deepa Shastri
• Sally Rogow
• Josephine Rynn
• Daz Saunders
• Ian Reynolds
• Sally Reynolds
• Zainab Raza
• Helen Phillips
• Eleanor Mullens
• Melissa Mostyn
• Gordon Hay
• Patrick A. Graybill
• Robert Greig
• Rebecca Meijer
• Philippa Merricks
• Carol Baker
• Joseph Gwynne-Jones
• Paul Hollingdrake
• Rachel England
• David Brien
• Alison Bryan
• Jen Dodds
• Sian England
• Monica England
• Christine Bates
• Jean Boutcher

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More information/contact: http://stopeugenics.org Interviews available upon request