Feb 2008
Stop Eugenics:
Jan 2008 Discriminatory HFE Bill Denies Liberty
****PLEASE FORWARD (Full text here (DOC)) WITHIN YOUR OWN NETWORKS. THIS IS A BASIC HUMAN RIGHTS, DISABILITY DISCRIMINATION AND CIVIL LIBERTIES ISSUE THAT NONE OF US CAN AFFORD TO IGNORE BEFORE IT'S TOO LATE FOR ALL DISABLED PEOPLE!!
Dear all,
We are running a Stop Eugenics campaign, our website is here: http://stopeugenics.org
Whilst this campaign has come initially from deaf people, this covers all of us ... and is down to reproductive liberty and government interference with this, making statements on which embryos have the right to life, and secondly, on who is permitted to reproduce.
We are currently collecting signatories for a letter. Details on how to sign this letter here. Full text of the letter follows.
If anyone wishes to lend their support to this campaign, please contact us on contact@stopeugenics.org and put add me in the subject header. Please state your name, and use any organisation / title /qualifications, if it might lend weight to this campaign.
Many thanks, Alison
FOR IMMEDIATE RELEASE: January 2008
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 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.'
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.
* Logically, the only purpose for having a test to see if an embryo has a deaf gene is specifically to allow the preference of a hearing embryo over a deaf one.
* Why would a deaf couple, for example, have the test if the results discover they have 9 deaf embryos but only 1 that is hearing, and that, by law, the hearing one must be preferred?
* A couple, however, who wish to see if it is possible to choose a hearing gene, 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'.
* 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.
* Any research into genetics and deaf people that is currently underway and would form a basis for consultation will therefore not be able to influence the Bill. 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.
Signatories (NB: this is a working document and names are currently being added): names signed so far on web here:
More information/contact: http://stopeugenics.org
Interviews available upon request.
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