Will developmental disabilities really be missed?

[GiantSteps]

This article
http://www.nytimes.com/2007/05/09/us/09down.html

which my boss showed me discusses the advances in genetic prenatal testing for Down Syndrome. The tests are becoming safer so more young pregnant women are being tested and then being given the option (or as the article suggests, advised) to abort rather than have a child with a severe developmental disability. Hence, the numbers of people born with Down Syndrome are decreasing. However, this article discusses parents of individuals with Down Syndrome who are actually trying to give information to potential parents discussing the positives of people with Down Syndrome and who are worried about decreased help in the future for people with Down Syndrome since it may not be as much of a problem in the population. Now, the article does down play the religious underpinnings of the pro-Down Syndrome parents and we probably should avoid that here since religious arguments have a bad history on SDN, but I do not think that is the parents only concern.

In any case, the greater question is: as science and health care continue to make strides to eliminate health problems (we are interested in the psychological ones), will the health problems be missed? Many studies would obviously no longer be needed. Will people with psychological problems and their care providers actually stand up and argue for their rights to have psychological problems? Strange!

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[KillerDiller]

I don't think it's strange that people are advocating against this sort of prenatal testing. My brother has a rare genetic condition that could likely be identified in such a pre-screening. The condition greatly affects his life and the lives of his family members, as he can neither walk nor talk and has the developmental abilities of a person much younger than his actual age. Anyway, my mother, I think, if pressed on the issue, would dissuade such screening. Why? If it existed a couple decades ago, her son may not exist (we adopted him, so the decision of whether or not to abort him would have been made by someone else). Also, she has devoted her life to advocating for fair treatment for him, pushing to get him into classes he could enjoy in school and fighting for disability awareness in general. Without my brother and his condition, her life would be completely different, so it's only natural to fight for the continuation of her lifestyle.

Anyway, I can easily see both sides of the issue. I think developmental disabilities take their toll on the family members and not always on the people with the disorder. That makes the issue extremely morally complicated. Is it selfish to not want to go through a life with a disabled child? Is it so desirable that it is worth terminating a pregnancy? Individuals are going to differ greatly in their answers to these questions.

 

[KillerDiller]

Oh, on another note, I think this sort of phenomenon already has a correlate or two in the realm of psychological conditions. What about the groups of people with eating disorders who take great pride in their ability to consume as little as possible? Online groups like those get quite indignant when someone suggests there is something wrong with that way of thinking and behaving.

 

[Reem16]

Will people with psychological problems and their care providers actually stand up and argue for their rights to have psychological problems? Strange!

The question of prenatal screening is a really interesting and complicated one. By getting rid of genes that predispose people towards certain disorders, we could also get rid of potential adaptive and positive aspects of these same genes. There is, for instance, a suspected association between mood disorders and creativity (see Kay Jamison's books and articles) or schizophrenia spectrum disorders and creativity (see Ruth Richards and Dennis Kinney's work). So, in a way, we should stand up for our right to keep genes that predispose us towards certain mental disorders in the human gene pool! But then of course, we have to work on only having the genetic predisposition, NOT the actual disorders... (I hope I am expressing myself clearly here because I don't want to sound like I'm arguing in favor of mental illness).

The situation with Down syndrome is a little different, since it is all determined genetically. However, I think this NY Times article brings up a good point, which is that what we label as "disorders" can sometimes have good sides that we come to ignore because of the label.

It is a complicated, complicated issue...

 

[Reem16]

Oops, I double-posted (I'm still new here)...
Feel free to get rid of this message.

 

[chaos]

I don't think the 'if x disorder was eliminated, all these people wouldn't exist' argument makes sense. We're talking about the future, not the past. By the same argument, one could say that women who have no children are committing genocide by default- up to a dozen more people would exist if they had just gotten pregnant. True, you're actually terminating the Down fetus, not just screening before pregnancy. An ideal way around this is to use IVF more often and prescreen the eggs.

What people don't get is that eugenics does not equal Hitler. It's a long way from allowing people the CHOICE of not having a child that will take a great emotional and financial toll on the family, to killing all the children that don't have blonde hair and blue eyes. Maybe we have started down the proverbial slippery slope, and people will be able to choose between implanting an egg that will become mentally ******ed child with a heart defect or a kid with a 120 IQ and no health problems. If most people choose the latter...would that really be such a bad thing? Do parents unconditionally love their Down syndrome children? Probably. Do they ever wish their child had been normal? Probably. In the future, if someone makes the choice to have that bright-normal child, are they ever going to wish they'd had the mentally ******ed one? I doubt it.

 

[Psychxiety]

I think KillerDiller makes a good point. Just try to imagine the cognitive dissonance these parents would have to deal with if they supported testing & abortion. The amount of time and effort parents invest in a child with a developmental disability is staggering. Add to this the fact that parent wants to believe that their child has some intrinsic worth to society. If these parents were to advocate for or even passively support testing and abortion then they would inevitably have to deal with the thought that children with Down are in some way worthless or undesirable. (Please don't get angry here, I'm not saying kids with Down Syndrome are worthless…I'm just putting forward the types of unwanted thoughts parents might have to contend with in this situation.) I think spending your life caring for and nurturing a child only to be faced with such thoughts would be devastating. Even worse, to consider the idea that you might have aborted your own child would be inconceivable. I don't think the response of these parents is mystifying at all.

On an ethical level I'm much more conflicted. I've met several people with Down Syndrome who function at a high level and seem reasonably happy. They are able to hold jobs and live reasonably independent lives. Should they have been aborted? At the same time, I have an acquaintance whose life is tied down by the responsibility to care for a sibling who has been in a semi-vegitative state since birth. It just doesn't seem fair. How can we draw an arbitrary line and say abort/don't abort? What would I do? It makes me uneasy even to write that.

BTW The Memory Keeper's Daughter is a really good novel that kind of deals with this topic indirectly.

 

[Duckygirl]

I don't think the 'if x disorder was eliminated, all these people wouldn't exist' argument makes sense. We're talking about the future, not the past. By the same argument, one could say that women who have no children are committing genocide by default- up to a dozen more people would exist if they had just gotten pregnant. True, you're actually terminating the Down fetus, not just screening before pregnancy. An ideal way around this is to use IVF more often and prescreen the eggs.

What people don't get is that eugenics does not equal Hitler. It's a long way from allowing people the CHOICE of not having a child that will take a great emotional and financial toll on the family, to killing all the children that don't have blonde hair and blue eyes. Maybe we have started down the proverbial slippery slope, and people will be able to choose between implanting an egg that will become mentally ******ed child with a heart defect or a kid with a 120 IQ and no health problems. If most people choose the latter...would that really be such a bad thing? Do parents unconditionally love their Down syndrome children? Probably. Do they ever wish their child had been normal? Probably. In the future, if someone makes the choice to have that bright-normal child, are they ever going to wish they'd had the mentally ******ed one? I doubt it.

I think, chaos, you have made some excellent points. I think it's fair to say that many parents of children with disabilities are happy that life turned out the way it did for them, however unexpected. But, I think chaos makes a good argument that none of those parents were saying before their child was born- "We hope this baby's going to have special needs!" No way. This just doesn't happen. There are plenty of people in our society that will NEVER buy into the prenatal screening for genetic problems because they don't think it's right to mess with nature or have religious convictions, and what have you. Plenty.

Additionally, while we start to slide down that slippery slope- keep in mind that things like prenatal screening for genetic-related defects will not be a world-wide phenomenon that will wipe out Down Syndrome in the next 20 years. Science is expensive and slower than we'd like. Think of all the places in the world, and even the poorest or most religous place in our country that will never grant/have access to these advances in medical technology. I don't think anyone has to worry that soon there'll be no one to fight for kids with disabilities. They will still exist, and people will still be impassioned about them. And just like how once upon a time doctors no longer had to worry about things like polio and TB, they moved on to treating and curing other health problems. We just don't have to worry about professionals losing their client/patient/research base on this one.

 

[KillerDiller]

I don't think the 'if x disorder was eliminated, all these people wouldn't exist' argument makes sense. We're talking about the future, not the past. By the same argument, one could say that women who have no children are committing genocide by default- up to a dozen more people would exist if they had just gotten pregnant.

I don't think anyone is making the argument that the people with Down Syndrome now would literally not exist. They are merely extrapolating the current ethical dilemma to their own personal experience, which is only natural. As Psychxiety said, there is an extremely large amount of cognitive dissonance involved in a family member of someone with disabilities being faced with this situation. I know what you mean, but be aware that dismissing arguments like that as nonsensical comes off as harsh. It makes a different kind of sense to the people who oppose the technology than it does to those who are in favor of it.

 

[chaos]

I don't think anyone is making the argument that the people with Down Syndrome now would literally not exist. They are merely extrapolating the current ethical dilemma to their own personal experience, which is only natural. As Psychxiety said, there is an extremely large amount of cognitive dissonance involved in a family member of someone with disabilities being faced with this situation. I know what you mean, but be aware that dismissing arguments like that as nonsensical comes off as harsh. It makes a different kind of sense to the people who oppose the technology than it does to those who are in favor of it.

True...it's easy to be cavalier and 'for the good of society' when a subject doesn't have personal relevance to you. Ironically, my opinion on issues that do have such relevance, such as forced treatment for the mentally ill, are based more on emotional idealism than objective cost-benefit analysis. Logically, if I'm pro-genetic screening, it would make sense for me to be pro-forced treatment, since in both cases we're considering what's best for the individual (a Down syndrome kid probably is glad they were born, despite their medical problems) versus what's best for society. I guess the major difference is that no one's saying you shouldn't be allowed to have a child with Down syndrome...just that you should be able to choose. Hmmm....

From a cynical perspective, it's only natural people would say they wouldn't want their child to be any different...as previous posters said, cognitive dissonance. We have to ascribe intrinsic value when we suffer for something without sufficient extrinsic reward. Even more cynically, misery loves company.

On the other hand, a lot of good in this world has come from unlikely sources...so we shouldn't be too quick to say what's best for anybody. The consequences of 'selective breeding' may have repurcussions we can't predict.

 

[psychwanabe]

On the other hand, a lot of good in this world has come from unlikely sources...so we shouldn't be too quick to say what's best for anybody. The consequences of 'selective breeding' may have repurcussions we can't predict.

This was my thought as I moved further down this thread.

What about the value that a diverse population brings us? Who is to say when to stop the selection of life based on genetic testing? Will we eliminate the birth of all deaf children? What about the time (and I am certain it will come) when we find the genetic codes for mental illnesses...will we choose to prevent those births as well? Then we miss out on the Van Gogh's and the Munch's. Some of our greatest minds would not have been born if this option had been available in the last century. As Chaos said above: who knows what the repercussions might be?

I understand the value of genetic research and its use in the betterment of our health and our lives. I am deeply concerned, however about its use in the shaping of our population.

/rant