By Alison Bryan | April 8th, 2008
On 19 March representatives met the HFE Bill team at the Department of Health. The summary of this meeting can be found here in English and BSL.
The Department of Health has since formally responded to points raised, in English here [PDF] and a BSL translation:
Posted in Department of Health | 4 Comments »
By Dr. Steve Emery | December 22nd, 2007
This blog post relates to this article in the Sunday Times.
After four weeks in which a group of us have carefully investigated and analysed Clause 14 (4) (9) of the Human Fertilisation and Embryology Bill, the Sunday Times covers the story in typically ‘sensational’ fashion.
The most unforeseen aspect of the article for those of us painstakingly trying to build a campaign against the Clause 14(4)(9) is that it is the RNID who are at the centre of the story, even thought they have not been involved in the campaign. It makes sense though from a media perspective: Jackie Ballard, the CEO of the RNID, is also an ex-Liberal Democrat MP, and therefore it makes better ‘news value’ to focus the story on an individual who has some kind of status in the world of politics and business (the business being a charity in this case).
The article is very much to be expected:
* the story is being spun as a demand of Deaf people to create designer children – i.e. a sensational angle for an almost entirely hearing readership;
* misinformation with regards to the US case (it has happened there and they want it to happen here);
* the campaign being centred on a demand for ‘rights’ to choose the make up of a child pre-birth.
The RNID comes across as contradictory in the article; Jackie Ballard is quoted as saying the RNID believes parents should not be prevented from children being born deaf, but later on the RNID spokesperson states that they would not actively encourage the choosing of a deaf embryo over a hearing one!
The campaign that is being launched to stop Clause 14(4)(9) has already been seriously misrepresented by a high ranking newspaper such as the Times. If this is the news being reported from a supposedly respected broadsheet, one dreads to think what the tabloids will make of it.
The Sunday Times seems to have missed the simple fact that this particular Clause is only applying to those seeking IVF treatment.
It also ignores the fact that the campaign that is being launched is not one that has been set up to ‘demand’ the ‘choice’ of ‘genetic abnormality’.
Therein lies an irony; Clause 14(4)(9) is specifically aimed to ensure the creation of a hearing/non-disabled child. Yes, there is a ‘designer baby ’issue here, but the Clause is aimed to ensure the baby is hearing or non-disabled.
The key word in the Clause 14(4)(9) is the word ‘preferred’. IF a couple decide to have a test at IVF stage and IF there are found to deaf and hearing embryos; a hearing embryo MUST be used. Individuals who WANT to have a deaf embryo will simply not take the test, because they know that they won’t have the choice; but individuals who WANT to have a hearing embryo WILL be able to take the test, because it gives them the ability to have the hearing embryo implanted, and to have the deaf ones discarded.
Those who want a deaf embryo, therefore, are being BANNED from doing so; those who want a hearing embryo, aren’t. Discrimination, pure and simple.
Deaf people have reacted to this, because it means that if it becomes law, Clause 14(4)(9) bans a parent from choosing a deaf embryo at the IVF stage, IF they so desire to do so. I make heavy use of the word IF for a reason – only a tiny percentage of people will actually want to do this, but while this is so, it is when clauses like this become law that it becomes not only harder to get them changed, but also easier to develop them in other ways.
You only have to read Professor Gedis Grudzinskas quote in the article to see how this might develop. Deafness, he says, is not the ‘normal’ state. Gay and lesbian people, Black and ethnic minority people (in the UK), also are not ‘normal’ in our society (i.e. they are a minority in majority), so should they also be banned from using technology, if the gay gene or the black gene be identified?
Deafness is being defined as a ‘disability’; which of course ignores the fact that being Deaf is about having a unique language and culture, one that has existed for as long as humans have been on planet earth. Deaf people have been striving for 30 years to bring to awareness to the public of Deaf people’s linguistic minority status, with some success.
The UK government actually recognised BSL as a language in its own right, on 18th March 2003 to be exact. There has been a huge explosion in sign language classes in the last 20 years, with something like 400,000 hearing people learning sign language, having been taught mainly by Deaf people proficient in the language. And the value of sign language is confirmed by another explosion: hearing people with hearing babies are teaching their children to sign before they speak…because it is easier to communicate with their children earlier in their life by using gestures and signs.
Deaf people are recognised as possessing a real, true language, no different from any spoken language other than it being of a different modality. This is also evidence of the value that Deaf people and their language and culture bring to society.
Deaf people being of a language minority: so does that mean that those who are also of a language minority – Welsh, Gaelic, Cornish etc – should be banned from using technology if somehow a ‘language gene’ was identified? After all, these languages are not ‘normal’ in our society, and are spoken by a minority.
The majority of citizens would object to denying black people, gay people, linguistic minority groups, or any other group that is a minority, to choose an embryo that closely resembled themselves, but the argument persists that deaf people and disabled people are somehow not ‘normal’; the article refers to hearing embryos as ‘healthy’; which in turn implies the deaf ones are ‘unhealthy’. The hearing gene being ‘healthy’ therefore justifies enforcing individuals to choose (or ‘prefer’) such an embryo, if they have a test that identifies such genes in embryos created from IVF.
The campaign is not one that is being launched specifically to try to give people the right to create a deaf baby; it is one that has been launched as a reaction to Clause 14(4)(9). As Francis Murphy put it in the article, if embryo’s are allowed to be chosen on the basis they are hearing, the same choice should be allowed for those who are deaf.
But the whole article misses a far more fundamental point: our entire society is built on diversity, and deaf people and disabled people have always been part of that diversity. Once you start passing laws to ensure that some of the people who have been part of a diverse society shouldn’t be ‘preferred’ over others, you begin to ‘play god’ with humanity. Deaf people have brought something to societies and to our understanding of what it means to be human; sign language and Deaf culture are not ‘abnormalities’, Deaf and disabled people are not ill or unhealthy; they are artists, lawyers, workers of all trades and skills, abilities, professions…this author and many other Deaf people around the world hold a PhD, and those like Stephen Hawking have made invaluable contributions to science and knowledge.
The Sunday Times is meant to be a broadsheet newspaper that explores issues with thought and depth. But in this article, it has seriously failed in that respect, and leaves us with far more questions than there are answers.
In the New Year, a group of concerned citizens who have coalesced around the www.stopeugenics.org website, will launch a Press Release calling for Clause 14(4)(9) to be discarded.
The simple outcome of the scrapping of the clause is that individuals will not then have to ‘prefer’ a deaf or hearing embryo. For us in the campaign, there should be no ‘preference’ of an embryo; they should be treated as equals.
We do not seek to remove the entire Clause, just the specific part of it that would enforce a couple to ‘prefer’ a hearing embryo over a deaf one. It is discriminatory and tries to ban deaf (and disabled people) from doing something that would be freely available to others. But more seriously of all, it is a step towards eugenics, since it will mean that couples going for IVF can design a baby, in this case, they can ensure it is a hearing one. And if it can be available to ensure the baby is hearing, the next step could be: why not ensure it can also be blue eyed, blonde, straight, etc.
As many people as possible are needed to come forward and sign the press release before it is sent out to the general press in the New Year, and to get involved with the campaign in whatever way you can.
This part of the Clause simply must be stopped and misleading and misinformed reports like those in the Sunday Times today must be urgently countered as part of that campaign.
Posted in Media Campaign | 12 Comments »
By Alison Bryan | December 22nd, 2007
Today the Sunday Times is carrying an article on “Deaf demand the right to designer deaf children“, which is supposed to be an article on this campaign. Except it totally misrepresents what this campaign is about! We were predicting sensationalism, and misrepresentation in order to making hearing people choke on their cornflakes over breakfast, but there’s nothing like seeing this in print. In the interests of transparency, these are the e mails that I sent to Sarah-Kate
21 December 2007
Hi Sarah-Kate
You contacted Francis Murphy at the BDA regarding the Stop Eugenics campaign. Further information is available on our website here: stopeugenics.orgThe campaign originally came about from a post (written by me) on Grumpy Old Deafies, and there was a lot of anger from Deaf people over this issue (see ome of the comments as an example). Consequently we set up the Stop Eugenics movement, to respond to this Bill.
Subsequently the BDA lent its support to the campaign, acting as a espondent agent on behalf of the UK Deaf community. A copy of the BDA’s letter can be found here.
The NDCS then responded with its Press Release.
[Side note to readers: neither organisation is behind this campaign, and this campaign is independent].
A Press Release is due to be released by Stop Eugenics, and we are currently collecting signatories (this was only sent out today). You can find a PDF of this here.
For background reading, you might also be interested in reading this.
In terms of your specific questions:
[Sunday Times comment] We understand there are some deaf people who are opposed to this clause because they believe the parents should be allowed to choose a deaf embryo instead of a hearing one if that is their choice.
This is not just about deaf people opposing the clause, but others are against it too. It has much wider implications than deaf people. Not just disabled people either, but statements from the government who is permitted to exist and who is not, and moreover who is or is not permitted to reproduce.
We are seeking reproductive liberty, and the right to choose since screening will be legal in these circumstances. General reproductive liberty in the UK is not absolute, since for example the Bill bans sex selection, or selection on the basis of traits; and eugenics is cited as a reason behind this, and also population demographics.
However, the Bill seeks to make “serious disease” a special case, and allows for selection on the basis of “abnormalities”. Screening is already in place, however, the Bill seeks to go one step further and curtails basic reproductive freedoms within the framework of selection. Defining who is permitted to reproduce, and which class of human embryo are permitted to be developed. For a government to make statements around this, we regard as a move towards eugenics.
The clause makes a very clear statement around the one way nature of selection. i.e. you are allowed to select (what some medic defines) as “healthy”, in favour of a “diseased” embryo. Yet it does not work the other way. There is no equal choice, and whether e.g. deaf person wants to pick a deaf embryo or not is immaterial, as on a policy level there is a clear statement around interference over a right of reproduction and existence. Any move to discriminate against certain classes of embryos from being developed is a move towards eugenics.
The wording of clause 14(4)(9) also refers to “persons”, in other words gamete egg or sperm donors. The current wording would likely prevent those who carry deaf genes (amongst others) from being egg or sperm donors. This already exists within guidance (see HFEA Making Babies document), but parliament is pushing this further and seeks to make this law.
Current guidance also prohibits those with severe refractive errors from being donors, would the population who wears glasses be happy with this?
[Sunday Times comment] We understand that most deaf people would choose to put back a hearing embryo instead of a deaf embryo but believe some people in the disability movement believe the choice should be left with the parents.
Very few people would not undergo screening in the first place, and relatively few go down this route, deaf people included. In terms of deafness, only one gene can currently be tested for, Connexin 26, and this could change in future (it is thought there’s over 100 hereditary genes in relation to deafness).
Since parliament is allowing for selection in these circumstances, then choice should be allowed in that it should not be permitted to discriminate against certain classes of embryos.
When it comes to IVF guidance already states that there must be a match the physical traits of the parents (or mother if not part of a couple, and undertaking IVF alone). Who said deafness is not a trait, and who has the right to define us as diseased? Where does traits being and end, and who has the right to define this?
For example, skin colour is a trait. A black person might encounter many barriers in their lifetime, but public policy or parliament would not seek to label to label them as defective because of society barriers or attitude, or issue statements that they do not have the right to life. That argument is absurd, and would be a statement of prevention of certain births within a group, yet is readily applied to deaf people.
Another example, I’m also Welsh and come from a family that uses a minority language (Welsh). Welsh people can cost the taxpayer a lot of money, yet no-one would contemplate trying to send a Bill through parliament telling Welsh people they could not become donors, or set up measures with the view of curtailing the reproductive freedoms of Welsh people. On a policy reasoning level, such a group of people could be classed as expensive to society, thus lets curtail their right to life. Yet it would not happen, because it does not fall within a medical definition. Who has the right to give us that label?
The UN Convention on the Prevention and Punishment of the Crime of Genocide states:
“Article 2
In the present Convention, genocide means any of the following acts committed with intent to destroy, in whole or in part, a national, ethnical, racial or religious group, as such:
…………..
(d) Imposing measures intended to prevent births within the group;”
Whilst legally deaf people might not fit within the definition of ethnicity, deaf people will identify as such and display the characteristics of an ethnic group. Parliament is seeking to impose measures through a) non selection of certain embryos from existing and b) gamete donors, and thus perceived as an act of genocide.
What if someone wanted their deaf friend to assist with IVF via a clinic? Under this clause they would not be allowed to do it. The government is seeking to curb this, by making statements that a) we shouldn’t be here / we are second class citizens and b) curb our basic reproductive freedoms, and prevention of births with in certain group. This goes against statements of inclusive policy.
The government (Department of Health, parliament) to date as far as we are aware has not consulted with us, despite its claimed “wide spread” consultation. The Disability Equality Duty places an obligation on public services for “public authorities [including the DoH] take responsibility for tackling institutional disability-related discrimination”, and to undertake measures to include us. However, I’ve yet to see ANY evidence of us being consulted about issues that have a direct impact on us (and it is deaf people that has been specifically referred to in policy reasoning).
During parliamentary consultation of this Bill, and in the government’s report (2007):
“Andrea Minichiello Williams, Public Policy Director, Lawyers Christian Fellowship, expressed the wish that a disability group wasrepresented.” Page 100
So why wasn’t this followed up, furthermore is the government breaking its own law?
Since there has been no consultation that we are aware of, how much do these people know about us? For example, during this debate on this Bill a peer in the House of Lords seemed to think that deafness was a “life threatening” and a “fatal” condition. A person with this kind of ignorance that gets a say in whether we have the right to exist, over and above asking deaf people themselves?
Should you have any other questions, please do not hesitate to contact us.
Many thanks, Alison
______________________________
21 December 2007
Alison,
Thank you very much for all this very helpful information.
I have spoken to Rachel Hirst who said she had signed your press release. Can you please email me a list of organisations who have signed up to your campaign to allow parents to be able to choose to implant an embryo with an abnormality if that is their choice?
Kind regards
Sarah-Kate Templeton
21 December 2007
Sarah-KateThis is the letter, and currently a working document. We only started collecting names yesterday, and far from complete etc. We were aiming to pull this together by January 2008 (PR dated for then), but as you may appreciate its Christmas and many people are unavailable.Please note the wording of the letter, which is trying to drive home reproductive liberty rests in the hands of parents since selection is being allowed in this instance, and non discrimination or rather how deaf people amongst others are perceived in law /policy. This might not be the same sensational angle you might be hoping to paint deaf people amongst others in.
21 December 2007
Thank you Alison for this additional information.
Kind regards, Sarah-Kate Templeton
21 December 2007
Sarah-Kate
One other thing, and something I noticed earlier but wanted to pick up on:
“I have spoken to Rachel Hirst who said she had signed your press release. Can you please email me a list of organisations who have signed up to your campaign to allow parents to be able to choose to implant an embryo with an abnormality if that is their choice?”
What’s abnormal? Who decides we are abnormal? Who has the right to label us as that including medicine?
Are black people abnormal too, because they don’t come up to some wider ideal, fit within traditional society structures and encounter discrimination on a daily basis through bad attitude and media stereotypes? This is not about abnormality but diversity, and bottom line is we are all people with the same right to exist and reproduce.
Do you have the right to label deaf people including me (or other groups) with an abnormality? Why is deaf people to hearing, any different from say Black to white people?
On an entirely *personal* note, *to me* a deaf or hearing embryo is no different from a boy or a girl. One is not better over the other. However, when parliament seeks to go down the path of telling individuals stating that one must be preferred over another Parliament would not seek to attempt to pass a law to say if you are going for selection on the basis of gender, you are only allow to choose boys, but you are never allowed to pick a girl. How would females (including you) feel about that? Whilst most people would not go for gender selection (in the same way as most people would not go for deaf/hearing selection), the imbalance in policy (because selection is being treated as a unique case in these circumstances) is still there. Swap gender for deaf / hearing, and you might have an inkling of what I feel about this issue.
Alison
Now can someone please tell me how the above comments transpired into this article, including what we stand for? Including statements such as, “Deaf demand right to designer deaf children”? The media likes to paint Deaf people in a particular light, and is totally ignoring the eugenics issues around wider policy and how we are having to respond to it. More about my thoughts on the RNID later.
Posted in Media Campaign | 13 Comments »
By Tony Nicholas | December 20th, 2007
Posted in Creativity | No Comments »
By Philippa Merricks | December 20th, 2007
The English text of this letter can be found here. Note: this is currently a working document. We are currently collecting signatories, if you would like to add your name (including titles and organisation where possible), please see this page on how to do this.
Posted in Media Campaign, eugenics | 1 Comment »
By Tony Nicholas | December 20th, 2007
Posted in Creativity | No Comments »
By Alison Bryan | December 19th, 2007
Artwork by the same anon:
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By Alison Bryan | December 19th, 2007
By the same anon contributor:
Posted in Creativity | 1 Comment »
By Alison Bryan | December 19th, 2007
Again by the same anon contributor:
Posted in Creativity | No Comments »
By Alison Bryan | December 19th, 2007
Posted in Creativity | 2 Comments »
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