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The figure to the left is from a piece in The MIT Technology Review, A Change of Mind. It profiles Diana Bianchi, a researcher who was involved in pioneering tests to discover Down Syndrome early in utero, but now is working on curing the disease. Here is a delicate aspect:
… She says that early testing will lead to the first treatments for Down syndrome. With the ability to routinely detect the syndrome as early as 10 weeks of pregnancy, she says, the tests are creating the chance to develop drugs that address cognitive deficits in the womb. “Plenty of people think that their children with Down syndrome are perfect the way they are,” says Bianchi. “But there are also plenty of people who, if given the choice, would want to attempt to treat their children.” Critics of testing “don’t know the complete picture,” she says. “They don’t realize there is another half to the equation.”
The idea that children with Down Syndrome are “perfect” the way they are is a testament to an aspect of our society today which transcends ideology and subculture. The way we are is asserted to be the way we ought to be. We are all beautiful, we are all talented, we are all equal. The reality is that this is simply not true. Humans are very diverse. In some cases that diversity means that some have more than others. The intelligent, the beautiful, and the healthy, have what those without would like to have. In some cases the traits may seem trivial. Taller men have an easier time finding a sexual partner, obtaining a leadership position, and earn more over their lifetime. Height may seem a superficial trait, but has enormous consequences over one’s life.
Diana Bianchi is now trying to fix the developmental abnormalities, often triggered by the non-wild type karyotype, of individuals with Down Syndrome. But the reporting in this piece suggests many in the Down Syndrome community are ambivalent about a cure, though some are supportive. After all, a “fix” implies a problem, which many will not admit. My own question is why pro-life organizations and individuals don’t fund Bianchi’s research to the hilt?
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I’m almost positive that if they find out a way to prevent Down’s Syndrome, it’ll get wide support even if some of the Downs Syndrome folks are a little wary of it. Isn’t the abortion rate among women who find out their fetus has downs syndrome something like 90-ish%
Children with Down’s syndrome recreate portraits by Old Masters including Velasquez and Van Gogh in heartwarming pictures to show that they are ‘pieces of art’
http://www.dailymail.co.uk/femail/article-3362419/Children-s-syndrome-recreate-portraits-Old-Masters-including-Velasquez-Van-Gogh.html
I imagine there are parallels here to the debate around corrective surgery or implants for children who are born deaf. I’m still foggy on the logic for letting a child grow up without the survival advantages of being able to hear fire alarms or honking horns, but it seems to be focused around the “perfect as they are” point of view.
A common worry seems to be that treatment for mental retardation would leave them just intelligent enough for painful levels of self awareness, but not intelligent enough to really have a good quality of life. Bringing someone’s IQ up from, say, 50 to 65 would be a huge achievement, but it’s not much practical use if your child is still going to be dependent on your for the rest of their life and now knows how much they don’t fit in.
Yes, treatment would improve quickly, but that’s very easy to say when it’s not your children. Once it gets to a stage where they could consistently be brought into at least the functional normal range, most of the objections would melt away.
Guess its time to suggest reading John Wyndhams The Chrysalids
In a world after nuclear war, its against the “law” to be imperfect, even six fingers.
http://hrsbstaff.ednet.ns.ca/engramja/ENG_11/The%20Chrysalids.pdf
“Isn’t the abortion rate among women who find out their fetus has downs syndrome something like 90-ish%”
Yes, and everyone knows it which is why the pro-Downs people are so ferociously against the test.
Should there ever be a genetic test for homosexuality ( I know nothing of the likelihood, just offering it up as comparison), the furor would be enormous for similar reasons. Relatively few parents would choose to deliberately have a gay child.
Most pro-life groups are also religious groups who believe that we are born the way God wants us to be. Therefore, to these groups, “curing” the syndrome would be going against God’s will.
“My own question is why pro-life organizations and individuals don’t fund Bianchi’s research to the hilt?”
That’s not exactly rocket science. “Pro-life” people don’t really care that much about abortions per se, what they care about is policing women’s sexuality; pregnancy is an appropriate punishment for being a slut, hence abortions should be banned (to make a cartoon of it).
Why the curve of total Down Syndrome show a low in mid-70’s and are rising?
Thanks! I will attempt to encourage this research.
That's not exactly rocket science. "Pro-life" people don't really care that much about abortions per se, what they care about is policing women's sexuality; pregnancy is an appropriate punishment for being a slut, hence abortions should be banned (to make a cartoon of it).Replies: @Roger Sweeny
“Pro-life” people don’t really care that much about abortions per se, what they care about is policing women’s sexuality; pregnancy is an appropriate punishment for being a slut, hence abortions should be banned
You must know different “pro-life” people than I do.
Or perhaps you have absorbed some powerful reasons for why they are an Other that so deserves to be hated.
Maybe.
Or maybe they've noticed that pro lifers tend to be some of the most unpleasant people around.
But I understand that taking on victim language is much, much easier.Replies: @Razib Khan, @Roger Sweeny
“Or perhaps you have absorbed some powerful reasons for why they are an Other that so deserves to be hated.”
Maybe.
Or maybe they’ve noticed that pro lifers tend to be some of the most unpleasant people around.
But I understand that taking on victim language is much, much easier.
On the other hand, if unborn children are sinless, and at death sinless souls instantly go to heaven, this kind of murder may actually be a good thing. It could even be argued that "the greatest good for the greatest number" would require constantly becoming pregnant and constantly aborting, sending the maximum number of souls to heaven, there to live with God in unimaginable bliss for all eternity. That argument makes as much sense to me as Pascal's Wager.
Maybe.
Or maybe they've noticed that pro lifers tend to be some of the most unpleasant people around.
But I understand that taking on victim language is much, much easier.Replies: @Razib Khan, @Roger Sweeny
do you know many prolifers? my personal experience is that prochoice characterizations of prolife motives/ideas are pretty inaccurate. and the same is true of the inverse. i grew up in a mostly prolife milieu but now am in a prochoice one (i’m the latter, always have been, though i prefer abortion rights supporter or something since prochoice sounds so anodyne and vague). in general attempts to infer from introspecting imagining you are a group you totally disagree with viscerally doesn’t lead to much value add insight.
They're not well served by their most vocal proponents, is the most generous interpretation, and that's stretching it.Replies: @iffen
I do, including some good friends.
They’re not well served by their most vocal proponents, is the most generous interpretation, and that’s stretching it.
I tend to agree with Jesse. I do know one thing: my life has been made materially much, much worse by people with “religious right”/social conservative type ideas. To simply disagree, even strongly with someone, or some idea, is very different from being directly in the line of fire with almost no protective barriers.
If I had a deaf child, the foremost reason I would want him to get a cochlear implant would be to prevent him from becoming part of the deaf community before being old enough to think for himself. Those people have a lot of really wacky (read: really stupid) ideas, all of which spring forth from the bizarre notion that deaf people aren’t actually handicapped. They consider themselves an ethnic group, and since in their minds there’s absolutely nothing wrong with them, their troubles in life must be the result of being an oppressed minority. Many of them believe it’s entirely appropriate for people with genetic forms of deafness to intentionally have deaf children.
There are a lot of level headed folks in the deaf community, but I think the militant Deaf are the most dominant and set the tone.
They're not well served by their most vocal proponents, is the most generous interpretation, and that's stretching it.Replies: @iffen
If one really believes that life begins at conception then it is murder. OTOH, not a lot of tombstones out there marking the graves of the remains of spontaneous abortions.
Could you explain how social conservatives have made your life worse?
Maybe.
Or maybe they've noticed that pro lifers tend to be some of the most unpleasant people around.
But I understand that taking on victim language is much, much easier.Replies: @Razib Khan, @Roger Sweeny
What Razib (13) and iffen (17) said. If you believe that abortion is murder, then it is a BIG DEAL, and it is easy to get, um, over-earnest. After all, pro-life activists are just another kind of Social Justice Warrior (for all of them it could be said that many well-meaning people are “not well served by their most vocal proponents”).
On the other hand, if unborn children are sinless, and at death sinless souls instantly go to heaven, this kind of murder may actually be a good thing. It could even be argued that “the greatest good for the greatest number” would require constantly becoming pregnant and constantly aborting, sending the maximum number of souls to heaven, there to live with God in unimaginable bliss for all eternity. That argument makes as much sense to me as Pascal’s Wager.
“The idea that children with Down Syndrome are “perfect” the way they are is a testament to an aspect of our society today which transcends ideology and subculture. The way we are is asserted to be the way we ought to be. We are all beautiful, we are all talented, we are all equal.”
Razib I think you mischaracterize the situation here. Evidently not all people that think children with DS is ok think they are “equal”. A lot of them think they have a right to exist not because they are equal, but because humans are capable of compassion. Many of them go one step ahead and see this as a test by which God tries his flock. Actually I think that a lot of prolifers are of this disposition of mind. So you´re seeing modernity where there is a lot of pre-modern sentiments operating.
Razib, speaking of abortion and genetic testing, any thoughts on this? Clinical Genetics Has a Big Problem That’s Affecting People’s Lives: Unreliable research can lead families to make health decisions they might regret.
http://www.theatlantic.com/science/archive/2015/12/why-human-genetics-research-is-full-of-costly-mistakes/420693/
That is to be expected of leaders of the Down Syndrome community. After all, if there was a perfectly effective cure, there would be no Down Syndrome community to lead.