Is This Really Such An Ethical Dilemma?

Out of America, there is always something new. The latest example of that country’s unparalleled contribution to medical progress is the announcement by the University of Washington that its scientists had succeeded in removing the extra copy of chromosome 21 in cell cultures derived from a person with Down’s Syndrome. Since it is the possession of three, rather than two, copies of the 21st chromosome that defines Down’s Syndrome, it is clear that this breakthrough has startling potential for addressing a condition which is far and away the commonest form of congenital disability.

Well, hurrah for science, eh?

The scientists themselves are a bit more cautious, as they always are:

The senior gene therapy researcher on the project, Dr David Russell, was properly cautious: “We are certainly not proposing that the method… would lead to a treatment for Down’s Syndrome. What we are looking at is the possibility that medical scientists could create cell therapies for some of the blood-forming disorders [such as leukaemia] that can accompany Down’s Syndrome.”

But that won’t stop people from worrying about the implications.

Yes. Worrying….

Nonetheless, for parents of children with the condition (and I am one), this news inevitably raises the question: what does it mean to have a “cure” for Down’s? And, perhaps more difficult: would we even want our children to be – for want of a better word – normalised?

Oh, boy. It’s the old ‘deaf culture’ argument all over again.

There is, of course, an existing so-called treatment of the condition: elimination by abortion, following a “positive” result in amniocentesis. Yet this invasive method of inter-uterine testing carries a risk of miscarriage. This perhaps explained the headline two months ago over a Daily Telegraph report on a new, non-invasive method: “Blood test for Down’s could save 300 babies’ lives a year.” Clearly, the embryos with Down’s that were correctly identified and dispatched did not count as real babies.

Well, no.

Isn’t that just the position of the pro-choicers? That abortion is not the taking of a life, or even the elimination of a potential life?

Why should it work differently just because we are talking about potentially disabled life?

Yet imagine if someone at Washington or Johns Hopkins really did discover a way of therapeutically removing all the extra genetic information within the 21st chromosome that causes the mental disability within the person with Down’s: would this be an unmitigated blessing for either the child or its parents?

How could it not be?

You might think so; but in a recent survey of Canadian parents with Down’s Syndrome children, 27 per cent said that if there were a “cure” for their offspring’s condition, they would not use it. A further 32 per cent said they were unsure if they would take advantage of it. This result was described as “surprising” by The New York Times; but it is not really surprising at all. My 17-year-old younger daughter, who has the condition, is what she is; and that is the person her parents and sister know and love. If she were genetically re-engineered, would she be the same person?

No. But why do you think that, because of this, she’d be worse?

She would certainly be very different; with the ability to count or read a clock, possibly even to penetrate the secrets of calculus: but those are not the sort of attributes which define what we love in those to whom we are closest.

No, indeed, but her life chances, her potential, would be suddenly magnified a hundred-fold. She would no longer have an uncertain future should anything happen to her parents.

How could you live with yourself if you denied her that chance?

And no, it’s not the same as the recent debate over the merits of cosmetic surgery to make Downs children look more ‘normal’:

It is true that people with disabilities, especially those visible to the naked eye, can often be teased or bullied, and this certainly causes suffering to the victim; but it is perverse to assert that the appropriate treatment for this form of suffering is that the stigmatised rather than the stigmatisers are the people who should be made to change their fundamental identity.

Well, I’m sure there are people who’d be only too happy to see surgery used on those who bully others to correct their antisocial tendencies, but I thought we regarded them with suspicion?

None of this is meant as a criticism of the attempts by American scientists to find a treatment for Down’s Syndrome, especially as it presents itself as an alternative to the eradication policy more central to medical practice in this country. Nonetheless, just as Americans tend to overuse anti-depressants, in the vain belief that continual happiness is the natural state of mankind, they seem to have a national tendency to want to change anything that does not seem perfect.That is a mighty force for progress: but it is not the secret of life.

It’s a disability. It’ll blight their life. How can you simply declare that it’s a matter of being ‘not perfect’?

What next? Pressure groups to insist that babies born with hare lips not be operated on?

6 comments for “Is This Really Such An Ethical Dilemma?

  1. David A. Evans
    December 2, 2012 at 4:07 pm

    Having two Downs syndrome cousins, I would say a cure would be wonderful.

    I suspect that without their Downs syndrome children, those suspicious of a cure are just inadequate human beings who would miss being needed.

    Being partly deaf, a cure for that would be nice too, although I wasn’t born with hearing difficulties, they developed before my teen years.


    • December 3, 2012 at 5:49 am

      It does have a whiff of ‘Me, me me! about it…

  2. Tatty
    December 2, 2012 at 4:14 pm

    I suspect that if a treatment came up then the 32% who were “unsure” would not hesitate so really 73% probably would as opposed to 27% definitely wouldn’t.

    It’s oh-so-easy to be sanctimonious when only hypothesising and hell, we all do it. In practice tho… not so much.

    During my first pregnancy the 20 week scan looked dodgy and I was told my child may be at risk of Down’s or Trisomy 13 or even 18. I dismissed an on-the-spot offer of termination for no particular religious or moral reason and an amnio was done with fingers, toes and eyes crossed.

    All was well and she’s a strapping gobby teenager now but had things gone the other way I would have taken a “cure” for any one of those conditions like a frickin’ shot.

    • December 3, 2012 at 5:51 am

      Well, indeed. I can no more understand the person who wouldn’t than I can ‘understand’ a shark or a tree sloth, or some alien creature.

  3. Mudplugger
    December 2, 2012 at 4:43 pm

    My neighbours have a 16-year-old son with TS. Basically he’s a waste of space and will never have a ‘life’, only valueless survival. If his parents were offered any ‘cure’ they would grab it with both hands – as it is, he has spent 16 years as a financial/medical burden on the State, sustained by drugs and treatments, and a huge emotional/practical burden on his parents every single moment of their blighted lives. Once they are dead or incapable, the load will fall entirely on the State for however long. And all for no purpose.

    It would have been the greatest kindness to all involved to have allowed him to succumb peacefully to any of his various conditions very early in life.

    Trouble is, we’re not supposed to think in that ‘uncaring’ way nowadays, whereas in previous generations, a wise midwife would quietly put to one side any baby with evident major faults, allowing it to drift away painlessly, while she attended to the mother. That was pragmatic caring, although any return to that mature approach seems unlikely.

    • December 3, 2012 at 5:53 am

      Oh, I don’t know. There’s the ‘Liverpool Care Pathway’, which a news report the other day suggested had now been adopted for newborns…

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