NEW POLL: should deaf couples be able to select deaf babies?

A month ago, listeners to BBC Radio 4’s Today Programme heard a debate between presenter John Humphrys and deaf activist and parent Tomato Lichy. At issue was Mr Lichy’s passionate belief that deaf couples should be allowed to use embryo-screening technology to choose to have a deaf child – such a choice would become illegal under the proposed Human Fertilisation and Embryology Bill – on the grounds that deafness should not be seen as a disability.

At the time, I remember thinking: there’s absolutely no way any sane government could be swayed by such an argument. If today’s Telegraph is to be believed, I was wrong:

… the Department of Health has agreed to cut from the Bill any reference to deafness as a serious medical condition. The move could pave the way for the Bill to be amended, when it passes through the Commons later this year, permitting a challenge over whether deafness should be classed as a serious medical condition for the purposes of the bill and allowing parents to pick an embryo, using IVF treatment, that will develop into a deaf child.

Over at The Times’s Comment Central, Daniel Finkelstein perfectly expresses my view:

The deaf groups argue that the Bill is discriminatory. Of course it is. It discriminates in favour of babies being able to hear. It discriminates against parents choosing to make their children deaf. Only in a world gone mad can such discrimination be regarded as a bad thing.

But are we being fair? Here’s how Mr Lichy defended his stance last month:

I don’t view deafness as a disability. I feel very positive about the language, about the culture and the history of deaf people, and I’m very involved in the deaf community. And also we already have one deaf child. Now if we say to her, at some point in the future, “We had a deaf embryo, but the government told us we couldn’t have that one”, how would she feel about it as a deaf person herself, if the government had forced us to do that?

This week’s opinion poll, therefore, asks the question: Should deaf couples be allowed to use embryo-screening technology to choose to have a deaf child?

It’s a simple Yes/No choice of answers, though feel free to use the comments thread to provide a more nuanced response.

Result of last poll

We asked: Assuming the Lib Dems’ Brian Paddick is your first choice, who would gain your second preference vote to become Mayor of London?

Here’s what LDV readers – who may or may not be representative of Lib Dem voters – said:

Ken Livingstone (Labour) – 146 (33%)
Boris Johnson (Tory) – 131 (30%)
Would not use 2nd preference – 108 (24%)
Sian Berry (Green) – 41 (9%)
AN Other candidate standing – 15 (3%) of all votes
Total Votes: 441. Poll ran: 7th-14th April 2008

Pretty close, then, between Ken and Boris on the basis of this LDV sample. It’s interesting to see how badly the Greens’ Sian Berry fared. This might be a reflection of the expectation that at least one of either Ken or Boris will make it through to the run-off, with voters wishing to use their vote for maximum influence. It might equally be a reaction to the Greens’ highly opportunistic decision to do a deal with the Labour party in return for Ken’s sloppy second preferences.

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  • Agree with Julian.

    Surely it’s about choice? If the child can hear then they have choice in being ‘part’ of the deaf community (they are likely to develop a strong link anyway if their parents are deaf) or part of the hearing community – or both. Guaranteeing that they deaf takes away that choice.

    The argument being used is that ‘we want our children to be like us’. We wouldn’t tolerate that if was on the grounds of sexuality, religion or any other number of factors and I don’t see why we should on this.

  • Paul Griffiths 14th Apr '08 - 7:25pm

    I want to agree with the conclusions above, but I’m not sure the arguments used (so far) support them. It’s not a case of taking a child that can hear and disabling it. It’s a case of choosing to have a deaf child that would not otherwise exist at all. And no-one (?) thinks that being deaf is so disabling that it is better not to exist.

  • An identity based on not being able to hear was always going to be at the mercy of technological advance. If deaf culture dies out, tough.

  • The Dept of Health have got it right – deafness is NOT a medical condition.

    It is society that “disables” us rather than the other way round.

    People should have the ability to make a clear and informed choice free of state involvement.

  • Do hearing people (and most deaf people) get the mirror-image right to select hearing embryos?

  • I’m talking about a hypothetical situation where deaf embryo selection is permitted. Do hearing parents get the mirror-image right to avoid having a deaf baby?

  • Laurence,

    you fail to distinguish between deafness being a direct and indirect cause of death.

    On the point of society or reality being the cause of the disability, well that entirely depends on what society does or can do to reduce, limit and eradicate the impact of the condition. Do we do enough, can we ever do enough?

  • You still haven’t answered my question, Alison. The current situation isn’t a right, it’s an obligation.

    If two couples walk into an IVF clinic, one wanting a deaf child, the other wanting a hearing child, do they both have a right to get what they want?

    The reason I ask is that the above situation will accelerate the demise of deaf culture, since most people will choose to not have deaf kids. Consequently, I expect deaf culture enthusiasts to support a situation where deaf embryos are selected ‘to preserve our culture’ whilst hearing embryos aren’t because ‘it’s not a disability’.

  • Alison, thanks for the pointer.

    I guess it is easy to jump to a conclusion based on reading half a sentence, though perhaps it was my fault for sticking my nose in a subject obviously close to your heart.

    In future I’ll remember to take all possible misinterpretations into consideration and spell everything out one syllable at a time:-

    I think it is equally important to see potential integrational difficulties from both the individual and the social side, rather than emphasising just one side over the other.

    Unacceptable social behaviour (such as racial or sexual orientation phobias) is a social/institutional problem, not an infrastructural problem and can’t be dealt with in the same way (contrast with accessibility legislation for those with mobility problems requiring ramps, wider doorways etc).

    With the highest level of inclusivity choices should be able to be exercised equally. Then, whether deaf-embryo selection is permissible depends upon a legal perception of whether deafness is by comparison advantageous or not. In this I don’t think deafness can be treated similarly to skin colour or gender etc.

    The issue at stake is, however, not whether non-hearing states should be normalised or not, but how to balance provision for the freedom of the child while maintaining maximum choice for the parents.

    My instinct is to say that no baby is concieved in sin and none should be treated as though they are, so I think it is ridiculous to allow the subjective prejudice of a parent to impose on an innocent.

    I don’t suppose any deaf parents would be shunned by deaf society for exercising a choice to have a hearing child and I’d be absolutely outraged if it were the case.

  • I think one of the saddest things about this debate is that Mr Lichy presents a rather dated view of disability. The implication is not that “society disables us” but that deaf people are not disabled unlike say someone in a wheelchair.

    Of course deafness is a disability. If I can’t hear someone talking to me, shouting a warning, announicng that the train will be at a different platform etc etc it is disabling.

    Of course deafness is a medical condition –
    I wear hearing aids – its not society that has caused my hearing loss – its genetic.

    I can understand entirely why a deaf parent might want a deaf child, just as a hearing parentb would wnat a hearing child – but actually, I don’t think either has any “right” to what they want.

  • MartinSGill 15th Apr '08 - 1:37pm

    I consider deafness a disability, just as I consider my short-sightedness a disability. I can work around it, but it restricts what I can do and limits my choices.

    The principle responsibility of any parent is to provide their child with the best possible chances in life. Limiting a child’s options by ensuring it’s deaf runs counter to that. A hearing child has more options in life than a deaf child; that might not be fair but it’s true, just as a short-sighted person has less choices in life than a normal sighted person.

    I see no difference between deliberately selecting for an embryo that will be deaf or selecting for an embryo that will be short-sighted, paraplegic, or blind, or missing a limb, or mentally impaired. Those are all limiting the choices of the child and a violation of a parents duty of care.

    This law protects the rights and the future choices/options of the potential child.

    Any parent that, given a choice, deliberately selects for a disability (even short-sightedness) has failed in their first duty to their child, even before it’s officially conceived.

  • Indeed, Martin. We don’t tolerate parents who want illiterate children, because that grossly interferes with their development as self-sufficient, autonomous individuals. Even if it does mean the withering of purely oral culture.

    Selecting embryos to ‘bind’ a person to a certain culture, like a genie bound to its lamp, is taking parental control too far.

  • H’m, I’m more puzzled now, is Mr Lichhy arguing that no screening of embryo’s for any disabilities should take place, or that he is quite happy for screening to take place, just not for deafness?

    It seems it is the latter.

  • Just curious how much tax payer money is dedicated to federal/state assistance to deaf children/adults? Along those lines how much assistance is this family requiring now with 3 deaf persons in the home? Don’t they want what is best for their child. Yes, love a child given to you with a disability but select it, this is ridiculous. Just because I am near sighted I would not require my children be near sighted so they could be more like me inorder to obtain my full love and acceptance. Being deaf is a disability. Can the child hear the truck hurtling down the street towards them-can they hear their parents say “no hot” or “bite”? The parent or a care provider must be in arms reach of this child until they are at least a pre-teen and capable of making some decisions. So where does that allow them to grow and earn their own self confidence having mommy right there constantly? I am greatly confused by these parents! I have a brain storm for the parents, implant all the embroys. Select homes for the perfectly healthy children (I am sure they will be overran with offers) and keep the baby with the disability for yourselves. No reason for the healthy babies to be denied existance anymore than for us to say a deaf child should not be selected-win win in my book!

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