Blanket testing for Downs syndrome is a dangerous ‘search and destroy' mission that should be widely debated, says a leading ethicist.
Margaret Somerville, founding director of McGill University's Centre for Medicine, Ethics and Law, says early testing will essentially eliminate Downs syndrome as women opt to abort affected fetuses in “humanity's quest for perfection.”
“It's a search and destroy mission,” Dr. Somerville said.
“I'm deeply disturbed by it. An official group of doctors, a group that's most closely related to the protection of young life, they're making a value judgment that these people are not worth having in society.”
Doctors say the test will arm women with information so they can adequately prepare to raise a Downs syndrome child.
But Dr. Somerville predicts many women will choose to terminate the pregnancy, as is the case in the United States where data indicates over 80 per cent of fetuses that are found to have Downs syndrome are aborted.
Ms. Somerville, a rare ethicist who doesn’t seem to believe ethics are all about finding after-the-fact justifications for whatever we want to do to make our lives easier or more fun, is reacting to this. The doctors are lying of course, although whether to themselves as well is unclear.
Here is a short piece by Fr. Richard John Neuhaus in the February, 2007 edition of First Things, which will be online in about two months.
The freak show used to be a big draw at state fairs. Not anymore. Ward Hall, who styles himself as King of the Midway, is now an old man whose “World of Wonders” is consigned by organizers to the back corner of the fairgrounds, next to the horse stables. His company includes Poobah, a three -foot-seven dwarf who has eaten one hundred skewers of fire a day, twelve hours a day, seven days a week for five decades. His voice is hoarse. There is also the sword-swallower, the four-legged lady, and a few other oddities. The freak show has come upon hard days. “Technology killed the art form too,” says Mr. Hall. For instance, they separate Siamese twins at birth. ‘Can’t they just leave well enough alone?” he asks. You might think that callous in the extreme, and you would be right. We pride ourselves on having become a more sensitive society in which people refuse to pay to gawk at freaks. The late Christopher Lasch had a darker view of the matter. We have become, he said, a society that has no room for freaks. There is prenatal screening for hundreds of potential abnormalities; multiple pregnancies in IVF procedures are “selectively aborted .” I regularly pass the United Cerebral Palsy School around the corner, on 23rd Street. Each day hundreds of school children and young people are bused in. They are slobbering and terribly contorted, with eyes rolling in all directions, and almost all of them happily smiling. The bus drivers and teachers seem to love them very much. And the thought keeps recurring; These children and those who care for them may be the last generation of their kind. In the brave new world that is upon us, such children will be killed before they can be a burden. Ward Hall, the King of the Midway, may be crude, but is it really a more humane society that has achieved the sensitivity that kills?
14 comments:
[I]s it really a more humane society that has achieved the sensitivity that kills?
Yes.
What kind of twisted freak thinks that we ought to let children suffer from Cerebral Palsy because some of them "seem happy" ?!?
The exact same thing was said about blacks in the 19th century American South. Turns out that they weren't all that happy to be slaves.
Oroborous you have the sensitivity of Ebanezer Scrooge. Are people with disabilities just "surplus population" to you?
Supermarkets reject carrots and cucumbers that are not perfectly straight and apples and tomatoes that are not of uniform size and shape. Why not apply the same standards of perfection to people?
Why stop at Downs and CP? There are an awful lot of 'inconvenient' people out there: deaf, blind, of low intelligence, those injured in accidents or war, anyone over 70 years or should that be 60?
How about a nice scientific-sounding name for the process - eugenics?
Monix:
Why stop at Downs and CP?
Fear not, they have no intention of stopping there.
I wonder how long it will take before the powers-that-be start to entertain the idea that disabled children were "choices" and that therefore their parents can hardly expect any assistance from the community with their care or education.
Once a thing can be done, it will be. Should people be forced to abort a less than "perfect" unviable tissue masses and who'll decide what's perfect? Should public support be removed from families who decide to let such a fetus be born? I'm really glad not to have to make these kinds of decisions.
So I assume you think killing them should be compulsory and that it would be inhumane for a parent to decide to have such a child?
No.
Are people with disabilities just "surplus population" to you?
No.
I wonder how long it will take before the powers-that-be start to entertain the idea that disabled children were "choices" and that therefore their parents can hardly expect any assistance from the community with their care or education.
In America, at least, that couldn't happen unless the economy collapsed, for the same reasons that we pay for medical care for poor people, even if they're choosing to be poor.
I'm saying that Fr. Richard John Neuhaus and Margaret Somerville are twisted freaks, because if they ruled the world, parents would be forced to bring into the world and raise profoundly disabled children.
If anyone wants to do so, more power to them, but I strongly affirm the right of people to test their unborn children for known defect.
Profoundly disabled children may indeed find a measure of happiness in this world, but so do ordinary children, and the latter are far more assured of it.
Peter:
Then you are a eugenicist, no? Maybe a kind and compassionate one, but a eugenicist nonetheless.
Are you in favor of allowing those with Down's to have children, particularly if the other parent also has Down's?
If no, then you are a eugenicist, no?
Also, testing for Tay Sachs in affected populations also counts as eugenics.
Provided parents have the choice. My wife was past 35 when our children were born; she decided to undergo amniocentisis. I have no idea, thankfully, what decision we would have made in the event. I am grateful the choice would have been ours to make, though.
Also, I wonder just precisely what is lost if in the next generation there were no one was born with Down's.
Is that morally any different than no one being born with Tay-Sachs?
Then you are a eugenicist, no?
OK, let us say that I am. So what ?
Neuhaus and Sommerville aren't forcing anybody to do anything.
Because they have no power.
But based on their writings, they would like to be able to force people to do things.
Given the stature and followings of both Neuhaus and Sommerville, do you really think "twisted freaks" is a good basis for establishing dialogue on such difficult issues?
No.
However, I'm not establishing a dialogue with them, I'm expressing my opinion of their vomitous morals.
What's "difficult" about allowing people to know whether or not their unborn children have specific defects ?
It's only "difficult" if one wishes that people who possess such information would behave in a way that most of them don't want to do, and so one is advocating that people not be allowed to know.
"What's "difficult" about allowing people to know whether or not their unborn children have specific defects ?"
This may not be a difficult issue for parents who are able to make their own informed decisions. It is naive to think, though, that this is always the case and that no pressure is ever brought to bear on people when they are at their most vulnerable. I speak after 38 years as an advisor to the parents of deaf children.
Experimental gene testing was carried out on pupils in a School for the Deaf back in the 1970s and I had to help families deal with the consequences of their adolescent children being told that they carried the gene for hereditary deafness. Among the reactions were: a new perception among the pupils of deafness as a disability rather than a way of life; those with the gene considering themselves as second-class; two attempted suicides.
Advanced testing can now identify deaf babies in the womb. Many people argue that deafness is not a disability, but termination is offered when it is diagnosed, in my view this implies a value judgement of the condition.
Many of the children I have worked with had deafness as one of multiple difficulties e.g. Downs, CP and other complex needs. Their parents often feel that 'society' disapproves of them for choosing to have these children. It is a small step from disapproval to blame.
I've spent my adult life pondering the complexities of this issue. I have no answers, just another question: 'What is the value of human life?'
Yes, we're going to keep sliding down the slope to custom-ordered children.
However, it won't be Brave New World, at least not until children are no longer raised by parents who invest their hopes and dreams in them.
There isn't anything we can do about the sexual selection that is endemic in Asia.
Or rather, the American public doesn't seem much inclined to put forth the effort to actively rule the rest of the world, so we aren't going to do what we technically could do.
It is naive to think [...] that no pressure is ever brought to bear on people when they are at their most vulnerable.
That may well be true, but we ought not throw the baby out with the bathwater.
We might want to change institutional policies so that medical professionals refrain from giving unwanted advice, but the tests should still be available.
[Y]ou do realize you are painting a picture of people caught in an inexorable technological drive over which they have no control.
That's the crux of many of our disagreements.
You say much the same thing about cellphones. My point is that we DO have control. Nobody's forced to have a cellphone, or a designer baby.
Now, it's true that they then might be unable to gain employment in certain fields, if they refuse to use a cellphone, and it's conceivable that someday a person wanting to have a randomly-grown baby might have to travel to the global hinterlands to do so, but those situations are both theoretical and reasonable.
In America, at least, if one wishes to live as the 19th century pioneers did, or the 18th century pioneers, or even the 17th century pioneers, it's very easy to do so, and none need ask permission of anyone.
You can even refuse to allow your kids to get 21st century medical care, or a 21st century education.
Perhaps in Canada you guys are much further along the path to Big Brother, but in America, we are still in total control.
However, most people here don't use their control. As was ever human nature, they usually just do whatever's easiest.
Peter, I'm with you about designer babies, but that's the second step.
First comes classic incrementalism. First time we hear about testing for and eliminating the unborn with really horrendous birth defects, some people will say good move, others will be appalled, some clergy may do a sermon or two about playing God, but as that culling becomes routine, more testing will identify other less dreadful, but still pretty terrible conditions that can be eliminated, so after while the whole subject will literally be out of sight, out of mind for most of us. Those still resisting will be counted as cranks much like those of us who insist on correct grammar and punctuation.
Now comes the hard part. Where do we stop and who will make those decisions? Will there be an ideal to which all children must conform. If so, I pick the young Marlon Brando for boys, you guys can pick your favorite for girls.
The future is coming and it can't be stopped, as Bette Davis said in "All about Eve," Fasten your seat belts, it'll be a bumpy night."
How do designer babies lead to, or result from, a hardening of hearts or souls ?
Will there be an ideal to which all children must conform.
Not in democratic societies.
Elsewhere, probably.
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