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

by Stephen Tall on April 14, 2008

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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If one cannot hear, one is unable to use a primary sense, hence one is disabled.

I’m all for the government backing off and letting people make their own decisions, but placing a disability on another human of course crosses the line.

by Julian H on April 14, 2008 at 6:40 pm. Reply #

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.

by Anonymous on April 14, 2008 at 6:49 pm. Reply #

You’ve got to feel a bit sorry for Mr Lichy. He’s obviously never quite recovered from his parents naming him “Tomato,” and now can’t deicide whether he is really a fruit or a vegetable.

Seriously though, he’s completely and utterly wrong. And a perfect example of the fact that parents are not necessarily the best arbiters of what is best for their children. (NB, faith school debate particpants.)

by Laurence Boyce on April 14, 2008 at 6:55 pm. Reply #

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.

by Paul Griffiths on April 14, 2008 at 7:25 pm. Reply #

I think we have to accept that once an embryo is implanted in the womb, there’s not much more we are entitled to prescribe regarding its development. But here, we are talking about the petri dish stage, and about positively selecting for a disability. Mr Tomato may see deafness in a positive light, but I doubt he could find even one person of sound hearing who would rather be deaf.

by Laurence Boyce on April 14, 2008 at 7:59 pm. Reply #

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.

by Anax on April 14, 2008 at 8:03 pm. Reply #

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.

by StephenD on April 14, 2008 at 9:23 pm. Reply #

The Telegraph, as with all media, sensationalises the issue. Deaf people are not after designer babies. Reporting is on par with all Muslims blow up planes.

If PGD happens, then only a hearing embryo must be selected. This is a form of eugenics, you cannot die from deafness … but for the government to make statements who is permitted to reproduce and who not, is sweeping.

The Professor’s comments are totally irresponsible, and either he’s been grossly misquoted or he should not be practising medicine. Allowing an *already* deaf embryo the chance to develop, is not the same as deaf people invading your nearest school with a pair of knitting needles to make the entire child population deaf!

(Incidentally I’ve yet to meet a single deaf person who would want to deliberately make a hearing person deaf).

Moreover, the government is making statements who is permitted to reproduce and who is not. Deaf gene carriers cannot be egg or sperm donors (for reproduction happening outside their own family). Should the government be making statements in law who is permitted to reproduce and who is not?

Campaigners are just asking for either an equal chance of survival or no selection at all (the same way as you cannot select a boy or girl). Media around this subject is nothing b

Before people jump on their high moral horse, did you know you cannot be a donor if you have “severe refractive errors”, i.e. in need of wearing glasses. Should the government be putting into law this, and restricting reproduction because you wear glasses?

If people are interested in learning more about this subject, click onto my name for the website.

by Alison on April 14, 2008 at 9:30 pm. Reply #

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

by Anax on April 14, 2008 at 9:43 pm. Reply #

Yes, only the hearing embryo must be selected. Why is selection happening in this manner, its not a life threatening condition? Where’s the diversity?

A peer in the House of Lords, went on record in Hansard saying you can die from being deaf! The intelligence of our legislature.

Do you believe that deaf people should be prohibited from being reproductive donors? Same with people who have “severe refractive errors”? People who wear glasses happy, are they happy with the government telling them that they are not allowed to reproduce?

by Alison on April 14, 2008 at 9:52 pm. Reply #

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?

by Anax on April 14, 2008 at 10:02 pm. Reply #

The mirror image right to avoid having a deaf baby, is already in HFEA guidance and what is being enshrined in law. However, this one way selection.

What happens if e.g. you have 4 embryos, undertake PGD. 3 deaf embryos, 1 hearing embryo. The law will state *you must* implant the hearing embryo.

Now some embryos don’t stand a good chance of developing, and will result in miscarriage. What happens in the above example, the hearing embryo is faulty in some other way / risk of miscarriage is high? IVF couple, the woman is 44 (last chance of getting pregnant etc) .. but the law states the clinic has to implant or prefer the hearing embryo.

There’s so many other issues with this, and unfortunately the media is sticking to sensational crap and a failure to understand this issue properly; which results in subsequent hysteria.

by Alison on April 14, 2008 at 10:14 pm. Reply #

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

Stephen, with the utmost respect, it is reality, not society, which disables the deaf.

by Laurence Boyce on April 14, 2008 at 10:18 pm. Reply #

Alison, I would have thought it was obvious that deafness could injure or even kill, if one cannot hear an oncoming danger, say.

by Laurence Boyce on April 14, 2008 at 10:52 pm. Reply #

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?

by Oranjepan on April 14, 2008 at 11:24 pm. Reply #

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’.

by Anax on April 14, 2008 at 11:28 pm. Reply #

@Laurence – hmm, wondering why I’m still alive? 🙂

Its a false argument. I could say the same, hearing people get distracted by hearing (radio, mobile phone) they are not visually in tune as they should be. Thus hearingness kills.

@Oranjepan – limiting or eradicting the impact of a condition? Why not get rid of Black people too, to alleviate them from racism? Get rid of gay people, so they don’t experience homophobia? Etc. This is subjective, and who has the right to decide. Its kind of a strange choice, given the alternative is non existence, a deaf embryo would not exist in any other form (a hearing embryo is an entirely different entity. What are we protecting the deaf embryo from exactly? Existence?

by Alison on April 14, 2008 at 11:32 pm. Reply #

If I’m understanding Alison correctly and that not allowing this prevents someone choosing regardless of all other possible circumstances to have a deaf-gene empryo implanted simply because of its deafness if the others are not deaf-gene holders then I agree, it is a horrribly discriminatory rule and have voted yes in the poll.

What I do not support is the right of anyone, deaf, hearing, blond, brunette, blue-eyed, brown-eyed, gay or straight, muscular or tubby to go into some genetic mix-and-match put in their required parameters and demand their choice of genetic traits they want to see in their idea of a perfect child.

by Jock on April 15, 2008 at 12:00 am. Reply #

Alison, what proportion of deaf people do you think would be in favour of the active selection of “deaf embryos” for implantation? I ask this question in all honesty. I would imagine that you hold a minority view among deaf people, but I really don’t know.

by Laurence Boyce on April 15, 2008 at 12:04 am. Reply #

@Laurence The answer is less than 1% of the deaf population (this is bone fide university research carried out by genetic professionals). That’s not to say that 1% is going to have IVF. Thus numbers are small.

For this tiny tiny number, we’ve got parliament / DoH legislating on it, and almost disproportionate legislation / use of resources. Crazy? Yes. And the disparate impact has much further reaching implications.

My view on why this has happened, government policy has been written on the back of media hysteria. Media hysteria is something like all deaf people want to make the world deaf, or some equally absurd conclusion.

This is the UK, and what the government should have done, was consult with (a) the deaf community and (b) professionals within this area (genetic counsellors etc). This is what normally happens when legislation goes to parliament, no?

Furthermore, it is the government’s legal duty, as per the Single Equality Duty to consult with disabled people. Instead of a proper govt consultation happening, it decided to read the newspapers and write policy on the back of something you might read in the Sun, Daily Mail etc.

@Jock – I agree. On a personal level, I do not agree with selection. I would not undertake it, its against my moral convictions. However, I do not agree with hearing embryos must always be preferred stance (its eugenics).

Secondly, deaf people aren’t allowed to be donors? If I needed IVF I would not be allowed to ask a deaf friend, a friend who needs to wear glasses etc … to assist with reproduction? Government telling me who’s permitted to have assisted reproduction?

In all seriousness, this clause has much bigger implications than for a few perceived mad deaf people; and I seriously wish the media would get it.

by Alison on April 15, 2008 at 12:53 am. Reply #

For this tiny tiny number, we’ve got parliament / DoH legislating on it, and almost disproportionate legislation / use of resources. Crazy? Yes.

No, it’s not crazy. It’s not crazy, even if it affects only one person. Sure it would be crazy to debate the issue all day every day for the sake of one person. But it is not crazy to spend a little time in consideration of a single clause which might only affect a tiny number of people.

My view on why this has happened, government policy has been written on the back of media hysteria. Media hysteria is something like all deaf people want to make the world deaf, or some equally absurd conclusion.

I don’t think there has been any more media hysteria than is normal. But Mr Lichy does seem to want to make at least one person deaf. (That is to say he wants to make one person deaf from scratch, not that he wants to make an undeaf person deaf.) And I, for one, think that is profoundly misguided and wrong.

This is the UK, and what the government should have done, was consult with (a) the deaf community and (b) professionals within this area (genetic counsellors etc). This is what normally happens when legislation goes to parliament, no?

Leaving aside the requirements of due process, I see no principled reason why the deaf community should be singled out for consultation on this issue. I say this because it is the interests of the child yet to be born, not the deaf community, which must be paramount. So all of us should be consulted, and that is in effect what is happening though the parliamentary process.

by Laurence Boyce on April 15, 2008 at 1:58 am. Reply #

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.

by Oranjepan on April 15, 2008 at 2:05 am. Reply #

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.

by T on April 15, 2008 at 10:05 am. Reply #

Some thoughts here. Just how many deaf couples are involved in IVF?

by Chris Paul on April 15, 2008 at 10:34 am. Reply #

@Laurence – Tomato doesn’t want to make anyone deaf. I know him. Don’t believe everything you read in the papers, and the media has an agenda. 🙂

I don’t know a single deaf person (and I know hundreds) who would want to make an embryo or person deaf. There’s a huge difference between giving something *already* deaf an equal chance, and engineering.

@T – sure my ears don’t work, but I certainly don’t define myself by them; and it doesn’t make a difference. Hearing people are so wrapped up in their subjectiveness as to what is hearing, they cannot see past this. If your hearing was taken away from you tomorrow, yes you would suffer. Even I don’t deny this. However, here no-one is taking hearing away from anyone.

No-one made me deaf, but if I was the subject of IVF I would not have been given the chance to live. Non existence is preferable to deafness; what exactly would the legislators be protecting me from? Deafness -vs- non-existence?

by Alison on April 15, 2008 at 11:17 am. Reply #

Here’s a thought experiment which may (or may not) help focus the mind. The HFEA bill is passed such that embryos with disabilities may not be implanted, but this specifically excludes deafness. What follows is that a tiny number of deaf people positively select for a deaf child, to the consternation of some. But in addition (and nobody was expecting this), a far larger number of hearing people positively select for a deaf child. What are we to make of this? What do deaf activists think of this? They should be pleased, right? That deaf culture has gained a wider appreciation outside of the circle of deaf people? But are they pleased? I think not. I hope not.

[NB, saying “this would never happen” is not a valid argument. The law exists in part to deal with unlikely outcomes, close down loopholes, etc.]

Can we have another poll? Should hearing couples be allowed to select deaf babies? Would the results be any different? Why?

by Laurence Boyce on April 15, 2008 at 12:08 pm. Reply #

As Laurence has stated repeatedly, no-one who is born hearing wants to be deaf. Imagine souls waiting to be incarnated into their mortal coils – do you think they would rather be placed in a hearing body or a deaf body?

When there is a reasonable possibility of matching those wishes, then that is what we should do. Of course if there are other complications with the IVF (perhaps the one hearing embryo has other disabilities or defects that may be considered “worse” than deafness) then someone has to decide which is the right embryo, and since the parents will be the ones who have to raise the child it is only fair that they get their say.

But all other things being equal, it should not be possible for a disabled embryo, disabled in any sense or limb or severe mental impairment to be chosen over a healthy embryo. It would be a disservice to the embryo that eventually, hopefully, turns into an adult, and a disservice to the other embryos that are discarded.

by sanbikinoraion on April 15, 2008 at 12:12 pm. Reply #

Can someone PLEASE provide an indication of the number of cases that may arise? There is a principle to debate of course. But I really want to know the quantum.

by Chris Paul on April 15, 2008 at 12:50 pm. Reply #

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.

by MartinSGill on April 15, 2008 at 1:37 pm. Reply #

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.

by Anax on April 15, 2008 at 2:27 pm. Reply #

Selecting for a disability strikes me as horrific.

by Matt Wardman on April 15, 2008 at 8:15 pm. Reply #

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.

by T on April 21, 2008 at 2:43 pm. Reply #

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!

by Curious on May 20, 2008 at 4:51 pm. Reply #

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