Imposing deafness on children deliberately - a scandal

Can this really be true? Can it be serious?

What an outrage. What a disgrace. What a weak minded, pathetic piece of petty politics. And what a tragedy.

The Human Fertilisation and Embryology Bill contains a clause forbidding couples from screening their embryos and then deliberately selecting ones with a serious medical condition.

Who would want to do such a thing, anyway? Well may you ask. But the answer is - certain deaf activists.

And now, according at least to the Sunday Telegraph, the Government has succumbed to pressure from deaf groups.

It has decided to exclude deafness from the list of medical conditions. That's right. The Government is accepting the bizarre argument that being deaf is not a disability.

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.

Apparently the Government has been taken aback by the ferocity of the campaign by deaf activists.

But this isn't about the rights of deaf people.

It is about the rights of their children. It is about the rights of newborn babies not to be deliberately handicapped by their parents.

I think this right should be protected against parents wanting to deafen their children in pursuit of a combination of their own selfish interests and extremist political dogma.

And I am certain that my position is that held by the vast majority of people, deaf and hearing, in this country.

It beggars belief that we are to be overidden because the Government is running scared of lobby groups.

Comments

[James]

Daniel,

You are right that this is an outrage, but wrong on your reasoning. I am worried about this because you are ususually such a logical and humane thinker.

It is not about deliberately making children deaf (as you keep saying it is) which we cannot do anyway. It is about choosing embryos that will become deaf and rejecting those that won't.

The point you need to grasp, is that all screening is wrong because it means some people are selected not to live. As someone who is deaf and would presumably have been left in the bin, maybe I can see this more clearly than you, so let me state the case once more: it is wrong to deliberately choose an embryo which will be handicapped. It is just as wrong to deliberately reject such an embryo unless the handicap is such that a person with it would rather be dead.

I'd rather be alive, deaf or not.

Do you understand now?

http://jameshannam.com

[Serf]

Completely sick, there is no other wy to describe this.

[Andy A]

Thank you to the previous comment writer (james Hannam, I believe).

I was upset by the original post. I am dumbfounded how, at times, rational, reasonable individuals fail to grasp incredibly basic moral principles as evidenced by the original post.

Mr. Hannam thank you for your eloquent and succinct rebuttal.

Andy

[Daniel Finkelstein]

James's point is a good one. But I disagree with him. Of course you are selecting a non-deaf embryo rather than making a hearing embryo deaf. I acknowledge that this is different but I don't think it changes the issue at all. James's argument against screening is much more than that, isn't it? It's an argument against the whole IVF process. But if you favour IVF then you have embryo selection. This can be done either without screening or with screening. Again, it is acceptable not to screen (this doesn't mean that all the embryos will be born, just that the ones to be born will be selected at random) What was being made illegal is to screen and then deliberately decide that your child will be deaf. And I agree with this.

[A Williams]

Completely agree with you James. Daniel has misunderstood the issue and has gone for a hysteria producing headline, creating an image of boggymen parents going around with hammers and nails turning hearing children into deaf children.

[Sarah]

"What was being made illegal is to screen and then deliberately decide that your child will be deaf."

Yes, but only in the sense that choosing to adopt a deaf child is to 'deliberately decide that your child will be deaf'. The parents are not inflicting the deafness, or artificially creating an embryo that will develop into a deaf child, and I do think that changes the issue entirely. They are simply choosing not to discard an embryo just because it will develop into a deaf child.

It doesn't seem logical to say it would be OK for the deaf couple to try to 'accidentally' have a deaf child, but that they may not do it intentionally. The result is the same.

I don't have personal experience of deafness, and I realise it is a serious disability which makes some aspects of life much more difficult for the person affected. However it is clearly not impossible to learn to live with it, and I imagine few deaf people would say that they would rather have never existed than have a disability, nor would their families and loved ones rather be without them.

[John Chuckman, Toronto, Canada]

This culture of "deafness is not a disease or disability but simply a difference" is hugely present in the United States.

It seems a truly a perverse way of looking at the world.

I suppose, in part, it derives from the fact that the deaf have their own well-developed language, and where there is a language, there is a culture.

The other root of its origin, I suspect, is the American view that democratic attitudes must be put to every human institution. It has become true in public education, higher education, and many other institutions where once authority or expertise had some role, and it has been anything but a unmixed blessing.

The irony of course is that these democratic biases seem to be applied everywhere but the place they truly belong, politics, America's electoral system having many serious democratic deficits.

Culture or not, reasonable people cannot accept that being deaf is not a fairly substantial human disability.

[James]

Daniel,

Thank you for your response (and thank you to the others on this thread) but I must disagree with you again.

I am broadly in favour of IVF and even some limited screening to ensure emplanted embryos are viable. But there should not be screening for disabilities in general. This does make the process random in some respects, but that is the same situation for those of us lucky enough to be able to make babies in the conventional way. I do not see how this becomes an argument against IVF in general.

http://jameshannam.com

[Julian Cox]

This is a perfect example of political correctness gone mad. There are those in the deaf community who are very, obsessively politically correct.

I had a colleague whose son became deaf in early childhood - I believe it was viral.

Immediately, there was pressure brought to bear on the family not to bring the child up "hearing", despite the fact that he was deemed a good case for cochlear implants.

On one occasion, his grandmother attending a family workshop on what remains a disability, was virtually bullied into stating that she was "glad" her grandson had become deaf, so suffused with political correctness had the convenor of this gathering.

I recognize that the deaf do indeed form a community, that their methods of communication one with the other do constitute a different culture and as such, they constitute a minority. But this is not intrinsically about defending the rights of an existing minority group - it is potentially about its deliberate furtherance. Because I have been led to believe that if certain persons within the deaf community get their way, once it is possible, deaf parents may be deluded into believing that having deaf offspring is their right. That would be unconscionable to the majority within society.

Screening in any way - either to eradicate the deaf or to eradicate the hearing embryo - is surely wrong. We do not as yet abort deaf foetuses because we cannot tell if they are deaf. We should be legally prohibited from doing so. But let us not bend to the dictates of some in the deaf community who are unreasonable in their claims and analysis of the problem. Deafness is a disability. It is overcome - he said, trying hard not to patronize - with great fortitude by those stricken with it. But a disability it remains.

Perhaps we should leave some things to G-d.

[Lee Jakeman]

Good English, I was taught, is clear, concise and to the point. This article is an example of good English. Which is why your blog is highly rated by anyone with a brain.

[sidney]

It is completely wrong for any government to allow people to choose like this. It is also wrong to say that deafness is not a handicap. But it is not unusual for a government to throw a deaf ear to the majority.

[Alethea]

I have the privilege of working in close proximity to one of three French sites that perform pre-implantation diagnosis - that is, IVF followed by genetic testing for one of a very limited list of terribly disabling conditions upon the parents' request. So I am not an expert myself, but I see the personnel of the center dealing with thoughtful ethical questions on a daily basis.

It is a technically difficult procedure and very draining for the prospective parents (in particular, physically for the mother), with a screening protocol.

I am quite certain that isolated deafness is not part of that list of diseases. (In fact, there is no list, but the family and medical team both have to justify the request for diagnosis, and some diseases come up more frequently than others. When there is precedent, it goes faster.)

It would be entirely illegal here to perform pre-implantation diagnosis and choose an embryo based on whether or not they would be deaf alone. Let's look at it another way. It would be very difficult to convince a doctor in France, where abortion for medical reasons is on demand with a doctor's approval, if you were a deaf couple and 6 weeks pregnant, that if your embryo is normal you want to abort so that you can try again and have a deaf one the next time. It would be just as hard to convince a doctor to abort an embryo known to carry a genetic defect that will lead to isolated deafness, because it does not affect the vital prognosis.

The parents have to prove to the satisfaction of the whole medical team their incapacitating psychological distress for a given birth defect, in addition to its gravity for the future baby, in order to get approval for an abortion for medical reasons. That is why it's on a case-by-case basis. For a common example, some couples can handle having a baby with trisomy 21 and others really can't. The ones that can't, need to justify why not, the same for any other congenital disease. And it is the same approval process for pre-implantation diagnosis.

The family must consult with a pluridisciplinary group of doctors at the institution who will decide on a case-by-case basis as to how well-founded the requested diagnosis is: only debilitating diseases calling into question the vital prognosis tend to be approved. Neither deafness nor non-deafness alone would.