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The Ethics of Eugenics and Disability– The Sunday Times misses the point June 27, 2006

Posted by papundit in Uncategorized.

The Sunday Times published an article on genetic screening of embryos, entitled “Scientists Playing God? We should rejoice.” The article was so optimistic about the potential for science to eliminate genetic diseases from society that I was initially seduced by its argument.

Last week British scientists announced a revolutionary screening process for inherited diseases in embryos. It will be quicker and more accurate than the existing method and it will detect thousands more genetic defects than previously possible.

About 200 heritable conditions can be detected by pre-implantation diagnosis in IVF treatment so that only healthy embryos are implanted in the mother or frozen; the new technique — pre-implantation genetic haplotyping — will be able to detect nearly 6,000 diseases and conditions. As one of the British pioneers said, this changes everything. One could almost call it godlike.

What it means is that thousands of parents who are at known risk of passing on terrible disabilities and diseases will now be able to have only healthy babies. This is the best news I have heard for years.

Those who don’t know about it can perhaps hardly imagine the drawn out suffering of Huntington’s disease or Duchenne muscular dystrophy or Prader-Willi syndrome or Fragile X, both for the people affected and for their families, until death puts an end to it.

Nature is astonishingly cruel. Science, by contrast, has the power of mercy. One can only be dazzled by the inventiveness and compassion of the scientists involved in this screening breakthrough — “in action”, as Hamlet said, “how like an angel!”

Then, I read the next line:

Admittedly genetic screening means that embryos carrying disabilities and diseases will be discarded.

I thought this phrasing was callous, but the arrogance of the next paragraph shocked me:

It is a stretch, however, to use the word destroyed, or even killed, as the test is done on embryos that are only three days old. And what is appealing about this early screening is that it offers the hope that, in the foreseeable future, abortion and late abortion will be less frequently used in dealing with serious defects and disabilities.

It will be easier and better in every way to get rid of a tiny collection of cells. This is indeed playing God, as all the usual campaigners were quick to point out last week. But what on earth is wrong with humans playing God? I am all for it, especially as God doesn’t seem to be doing it.

The author’s comment that it would be appealing to reduce the number of late-term abortions due to disabilities and defects is telling. It shows recognition of the angst, pain and possibly guilt a pregnant woman would feel after making a decision to have a late term abortion on a child/fetus she wanted, carried for months, and loved until she was told by a doctor that it had a disability. The author is right that it would be easier “to get rid of a tiny collection of cells” instead, but I don’t believe it is the solution. Timing may play a role in legal decisions and/or the creation of a set of societal standards about screening for disabilities, but timing does not change the ethics of a decision. Whether a “tiny collection of cells” or a fetus in the sixth month is destroyed, someone is still making a decision to prevent birth based on the existence of a genetic disability.

The author dismisses objections with the following rational:

There will always be absolutists, who claim the right to life for even the most infinitesimal scrap of tissue. But there are others who oppose screening on what seem to me to be even more irrational grounds.

Simone Aspis of the British Council of Disabled People said last week that she was opposed in principle to such screening on the grounds that it sent the signal that being born disabled was a bad thing. The mind reels. Over the years I have got used to the disability lobby talking in this spirit, so it no longer seems as absurd as once it did, but surely it must be obvious that it would be far better for a person not to have a disability than to have one.

It would be far better to be able to walk, or hear or see than not to. It would be far better not to have a miserable fate like Huntington’s or Fragile X. In a culture where many normal girls are obsessed to the point of illness with their minor imperfections, it is surely better not to have major impairments. In that sense, being born with a disability is obviously a bad thing.

For some reason the disability lobby seems to be in denial about this, perhaps because it’s in the grip of a logical muddle. Aspis made a typical expression of it when she wondered whether the intention of the screening was to remove disabled people. It sent a message, she said, particularly to young people with disabilities, that their lives were worth less than everyone else’s. This seems to me to confuse a disability with a person with a disability. (This is a confusion that people with disabilities normally resent, understandably.)

To say that a disability is undesirable in itself is not to say that a person with that disability is undesirable in herself, or her life worth less than someone else’s. The disability is not the person. It is to say that her life would be better without that disability. And saying it assumes that a person with a life and a history here in the world, with family and friends, is not the same as a minuscule collection of defective cells on a petri dish. One is dispensable, the other most certainly is not.

What a piece of work is a man and partly, now, it is the work of godlike humankind.

Is the statement of Simone Aspis of the British Council of Disabled People really irrational? While the author is correct that being born with a disability isn’t something people would choose and that “life would be better without that disability,” Aspis is making a point that many people would disabilities would prefer to be born.

The author denies that support for screening/destroying embryos of the disabled is equivalent to saying that a person with a disability “is undesirable in herself, or her life worth less than someone else’s.” To make that point, the author clarifies that she recognizes a difference between “a miniscule collection of defective cells on a petri dish” and a living disabled person– “one is dispensable, the other most certainly is not.” Yet the author fails to notice that she just made Aspis’ point– people who do support playing God are saying that a disabled person’s life is worth less than someone else’s and that a disabled embryo is dispensable.

Readers saw through the author’s attempt at moral equivalence. Here are some of the best reader comments online:

  • Just wanted to comment on your article, particularly: “It would be far better to be able to walk, or hear or see than not to. It would be far better not to have a miserable fate like Huntington’s or Fragile X.” Along this line of reasoning how about “It would be far better to be able to live than to be snuffed out or destroyed before seeing the light of day.” Life is a very precious wonderful thing that many severely disabled people will fight for the right. Why do some want to deny them life? Life is perfect for no one but it’s still worth living. I have a son born with both Downs syndrome and spina bifida. He is a joy to us all and a blessing. How dare anyone suggest depriving us of our Evan Joel. I don’t want a “perfect kid”. In fact I have 8 of them but I want my Evan just as much as the rest of them. I can’t imagine life in a world with no “imperfect” people. How awful and how frightening if one should be in an accident or something. Give me life, not death any day. (Priscilla Kendrick, Carlisle, OH)
  • This does devalue disabled people since individuals, because of a particular disability, are denied life. “Playing God” will lead to disastrous consequences, because who is to decide what constitutes a worthy life? Will it be individuals free from Downs Syndrome? Fragile X? Or, will it be a cleft lip and palate or clubbed foot? (If one thinks this is an impossibility check out the controversy in the UK.) To say to a disabled person “You are an important and valuable member of society” and then turn around and abort/prevent implantation of the unborn with the same disability is blatent hypocrisy. You cannot play both sides of the fence. “Playing God” has consequences. (Kristen Tannas, Calgary, Alberta Canada)
  • Six thousand genetic diseases – we cannot possibly expect a mere parent to comb through the list and decide whether to implant this embryo or that one. We would have to get a computer to do it. I am sure that the nanny state would be only too keen to take the decision of who to allow to implant and go to term and become the recipient of its benefits and provider of its taxes. We would separate sex and reproduction completely (we have gone some way down that road already) so that all children are born this way. Then there would be no genetic diseases and we will have cleaned up the gene pool. All praise to the brave, new world. What an original thought! (Shaun Hexter, London, UK)
  • Oh for goodness sakes, before you start tirading about the “drawn out suffering” and “miserable fate” of people with Fragile X or Prader-Willi, get your facts straight. People with those conditions in general don’t “suffer” anymore than people with Down syndrome do. As things go, Down syndrome is rather benign and doesn’t cause a lifetime of suffering. Yet the world has been “saved” by both pre-implantation and genetic screening for many years from the birth of countless people with Down syndrome. I am not a fundamentalist nor necessarily opposed to pre-implantation genetics in all cases, but this kind of glowing, pro-screening portrait is just as loopy as anything on the other side. We ought to be thinking very hard and long about what kinds of conditions are unworthy of future life. (mary, Virginia Beach, Virginia)
  • As a person who was born with a neurological disability, I am happy to assure Minette that walking is overrated. Not being able to do it very well has not caused me as many problems as she seems to think. The most problematic thing in my life is people who assume that their quality of life is better than mine simply because they aren’t disabled. That’s just the height of arrogance. (Katie, Brighton, Sussex)
  • The reason why preimplantation genetic haplotyping is so offensive to disabled people is not because being disabled is a desirable trait, but because this particular method seeks to “prevent disability” by discarding young human beings who have a disabling condition. Disabled people do want disability prevented. What they do not want is disabled people killed in the name of “preventing disability.” I have several severe disabling conditions, and would very much like to see my conditions truly prevented from occurring. What I don’t want is embryos to be killed or discarded because they would grow up to be like me. That is eugenics at its worst and the ultimate in fatal discrimination. (Alison Davis, Blandford Forum, UK)
  • Eliminating embryos that have the potential to have some disability does not equate to ‘curing’ the disease. Science isn’t solving the problem, it’s simply killing the person asking it. This new screening technique just does it a little earlier than abortion and infanticide. I agree that people may be better off experiencing life with no disability, but how exactly are they better off experiencing life dead? If life were truly not worth living then wouldn’t people end it themselves? I have noticed that the children who attend schools with disabled children in them are more open-minded and creative. Perhaps being exposed to such fundamental ‘Difference’ is both stimulating and educating. Perhaps eliminating as much difference as we can will have the opposite effect on society and make us even more bigoted, self obsessed and image consious.
  • Rather than attempting to garland her argument with some Shakespearean cultural authority (unfortunately in this case it’s only cheap tinsel: Hamlet hardly says that man should act like a god), the author of this article would have done well to remember another piece of literature: Mary Shelley’s Frankenstein, a searing and highly relevant caution against the dangers of the god complex and the hubris that can accompany scientific knowledge. (Dr Nicholas Horne, Canberra, Australia)
  • Ms Marrin comments on how disability groups such as the British Council of Disabled People felt that genetic screening sent the message that “being born disabled was a bad thing”. She says that this attitude “seems to me to confuse a disability with a person with a disability”. The act of abortion exposes the hypocrisy of her argument. Terminating a life because of its disability is precisely what our society currently does, through abortion. Pre-implantation screening is just a more palatable form of this. With all the grand moralising about how much better off people would be without disability, there appears to be a significant absence of disabled people agreeing that they should never have been born. Perhaps Ms Marrin would care to ask a few Huntingdons sufferers if they feel that their lives should have been terminated before birth. I’d be interested to read about her findings. (toby cosh, Bedford, beds)











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