Eugenics in UK: the debate suddenly takes off and hots up!

Suddenly there’s a lot of news coverage over here in UK on issues relating to Deaf issues.

It began with this report in the Sunday’s (9/3/08) Observer, which had a general news focus on the HFE Bill. The article was centred on Tomato Lichy and Paula Garfield; in the printed version it shows a photograph of them and their daughter Molly. There is a link to the story on the front page of the Observer.

(Just for the record it is the Observer who refer to me as ‘an expert in sign language’; that’s the press for you!)

The debate really fired off today though, since following the article, Tomato and Paula were interviewed firstly at 7am in the morning by John Humphries on the Today programme; and then secondly by Jeremy Vine at lunch time.

For non UK viewers, these two interviewers are serious heavyweights for the BBC, and the Today programme in particular is listened to by a large number of people, so this is big time stuff.

Click on this link to see a transcript of the Today interview, kindly produced by TeamHaddo. And click here for the transcript of the interview with Jeremy Vine, again transcribed by TeamHaddo. (Isn’t it telling that the huge corporation that is the BBC with all it’s millions can’t produce immediate access to it’s Deaf licence payers to enable Deaf citizens to engage in the debate this has sparked off.)

BBC Health have carried a news item about the subject and it’s being debated on message boards already, particularly Women’s Hour at the BBC.

Apparently it will also be featured in the Daily Mail tomorrow (Tuesday). Again for non-UK viewers, the Mail is a newspaper that’s a cross between a broadsheet like The Observer or The Guardian, and a tabloid such as The Sun or the Daily Mirror; but the Daily Mail is openly to the right of the political spectrum and therefore I would expect less than favourable coverage.

So far…

Just reading through the debates and my view is that they are going right off the radar, but predictably.

Key thing: what’s being missed (apart from in the Observer):

1. HFE bill is why the issues have come up in the first place

2. Clause 14/4/9 means hearing embryos MUST be selected: its a reaction against that clause….

3. Complex testing process gives couples the right to create HEARING babies, but no deaf/disabled would be able to be chosen by IVF

4. Where is the debate about whether it is right and just for people to use genetic technology to create a HEARING baby – obssessive focus on tiny minority of deaf creating deaf babies;

But there are several places where there is potential breakthrough: many people are saying the technology should just be left alone and come along what may (so why discriminate in the first place, and actually this bill does discriminate, it favours hearing embryos and forces that selection)

And in the BBC health article at the end of the report Julian Savulescu, director of the Oxford Centre for Applied Ethics, makes the point that the numbers who will use this will be tiny (one in ten years) and they can therefore afford to be liberal about allowing a Deaf couple to select for deafness.

My reply to a request from the Observer…

Last week Robin McKie of the Sunday Observer sent me a list of questions, the answers that I gave are below. It’s a bit long I’m afraid, and they used just one sentence from it:

To answer the questions…
– What do deaf people think about the bill?
Clause 14/4/9 of the bill will allow the selection of a hearing child through IVF. That is what the clause is really about. A couple going for IVF will be able to test whether any embryo’s they create have a deaf gene. If they are found to have the deaf gene from the test, these embryos WILL AUTOMATICALLY be discarded. The very fact of this possibility affects the citizenship of living Deaf citizens. It sends out a clear and direct message that the government thinks Deaf people are better off not being born.
There are varying opinions about the whole HFEB bill. But there is a lot of unified anger and revulsion about clause 14/4/9 of the bill. Not just from UK but from the Deaf community worldwide. Nearly 200 (Deaf and hearing) people have signed their name to the Open Letter on the stopeugenics website. Several people have written to their MP’s, and there is even the possibility there will be a march against the clause. You only have to go on to the website to get an idea of the anger.
Why are Deaf people being singled out for attention by politicians and government departments in this clause? You have to understand the anger in the context of history. Deaf people are all too conscious of history’s attempts to ‘normalise’ them, seek cures for deafness, or even to eradicate it altogether. Indeed Deaf people have experienced the normalisation process first hand. Precisely because genetics offers the potential to remove deafness from a gene, or to identify it to stop a deaf child from being born, there are real fears that those who want to eliminate deafness from society will seek to do so via genetics. Therefore to see this clause being introduced and misinformed statements being made by politicians and government departments, those fears are raised.
– are there individual deaf couples who are seeking to have only deaf children and would therefore be victimised against the bill?
It’s important to understand the difference between the desire for a deaf baby and the actual genetic selection of one: this is getting mixed up in the debate. 90% of deaf children are born to hearing parents, and 90% of Deaf parents have hearing children. This means only between 5 to 10 percent of deaf children are born to deaf parents. It is a small minority; therefore a deaf child born to a Deaf couple is an unique event. It is a cause for celebration, and not despair.
It is a different matter altogether if a Deaf couple deliberately seek to have a deaf child. Most children born to Deaf couples are hearing children, and are loved and cherished just as much by their Deaf parents (just as if, for example, a couple might have a strong desire to have a baby boy, but love their baby if it is born a girl). The numbers of parents who actively seek to have a deaf child is unknown, but we know from research that this is very tiny; probably less than 3%, if that. And yet the way politicians, government departments and the media report on it, you would be forgiven for thinking it was 100%.
Deaf people simply understand the reasons why a Deaf couple might select a deaf child, and will reject any attempts to ban them from doing so. It’s important to understand that the campaign has not been set up to support demands for a deaf baby – such a demand has never existed!! – but to reject attempts to ban them from doing so. This might sound like the same thing but is very different. No legislation demanding the right to a deaf child has ever been thought up by deaf people; legislation is, however, being promoted that will enable a couple to select a hearing baby and stopeugenics is reacting to that.
– What sort of legislation should we have?
My personal belief is that shared by the UK Disabled People’s Council (UKDPC) which does not oppose any medical research that is for the alleviation of pain or treatment of illness (of which deafness is NOT one!):
However, Deaf people have their own language and culture and have for many years now been demanding recognition of this status; implementing the kind legislation that recognises this status would go a long way since it would have a knock on effect of how society views its Deaf citizens.
The government has already recognised British Sign Language as a language in its own right. That needs to be strengthened and a BSL Act introduced, which would be similar to the Welsh Language Act. It means recognising and accepting that Deaf people are a linguistic minority group, with their own language and culture. Once that becomes recognised, any genetic interference with deaf genes is actually an interference with a language minority group. Imagine any genetic intervention to make everyone speak English! It would cause a lot of uproar, and rightly so.
There is nothing wrong with being Deaf, just like there is nothing inferior about sign language; being deaf is not an illness or a life-threatening disease. Deaf people have been part of human society since its inception, and have had varying degrees of social status in that time. In modern society, linguists accept that sign language is a visual-gestural language. A BSL Act would be a first step to changing societies attitudes and offering Deaf people linguistic recognition, protection and respect, not to mention development.



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