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Pro-Down Syndrome

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http://www.nytimes.com/2007/05/09/us/09dow...amp;oref=slogin

Summary: Down syndrome is a debilitating disease, which is characterized by an extra chromosome developed after conception. Doctors can test for this syndrome, but previously the test (amniocentesis) was found to increase the chances of miscarriage. Thus, only pregnant women over 35 were tested. Science has recently discovered a way to test for Down syndrome that inflicts no harm on the mother or baby. It makes sense now for every pregnant woman to be tested to see if her fetus is carrying the extra chromosome. Parents of children currently stricken with Down syndrome are unhappy with this technological advancement, however. Since 90% of woman already abort their pregnancies after discovering their fetuses will grow into babies with this disease, these parents (rightfully) suspect that with the new testing capabilities, there will be far less people with Down syndrome in the future. This worries them because then there won't be many others like their own children. Tolerance, awareness, and funding will all decrease because there will be less people with Down syndrome. To reverse this, these parents are encouraging couples who find out their fetuses are carrying the 21st chromosome that being the parent of a child with Down syndrome isn't that bad of an idea.

Essentially, these parents actually want more human beings with Down syndrome on the planet. Instead of trying to find a solution to this problem, they are encouraging others to produce beings that are not well suited for human life. They cannot enjoy to the same level the things that you and I enjoy, such as independence, strong romantic relationships, etc. These parents' notion seems backward and downright evil to me. I don't know anybody who would wish for a child with a disability. But these parents do. Their children suffer, so they want other children to suffer, as well...so their children will have friends and feel close to others like them. The person who is best adapted to life has the best chances of surviving. How anyone can want someone below normal is beyond me.

It is one thing to have a child born with a disability that you did not know about. At that point, you have a choice: you can either support the child yourself if you can (emotionally, monetarily, etc.) or you can give it up for adoption. But there is no way that anybody can actually be glad that their child is sub-normal. It can work out eventually, of course. But the initial desire for a less than perfect child (physically, at least) is impossible.

What is next? Should I get polio because kids in India have it and they might get lonely? It is a backwards and ridiculous idea.

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A sad tale. In an earlier thread, about the new technologies that allow the deaf to hear, someone pointed to groups that were unhappy about the advance!

On the older Down-syndrome test, my wife had it done, and the doctor explained that it was because she was over 35. I was quite shocked by this, and wondered if he would have told us about the test if she was not in that age bracket. Regardless of age bracket, I cannot imagine anyone rational who would rather take on the risk of having a down-syndrome kid just because it would increase the risk of a miscarriage, unless the risk of having a miscarriage is extremely high and the risk of having a down-syndrome child extremely low.

Edited by softwareNerd

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Nobody reasonable would keep a kid with down syndrome anyway.

Once a child is born with down syndrome, someone has to take care of it. It is the parents' responsibility to take care of it (adoption works too). I know friends whose siblings have the syndrome and it is really not that bad. Although I am sure that if they had a choice they would have chosen not to have it.

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As the parent of a child who uses a wheelchair because my daughter can't walk, and whose muscular disability also has delayed her speech development, this kind of thing is shocking - that someone would deliberately foster disabilities.

Granted, our having her has, by far, been the most rewarding and fulfilling aspect of our lives. But I would do anything in my power to reverse her disabilities. My daughter, who is 8, is a very happy girl, and even prefers using a wheelchair to the possibility of walking someday, probably just because she's smart and practical and she knows it's not an option for now, and she knows it's pretty damn efficient. Even so, I suspect that if technology could make her life easier, she'd embrace it in much the same way that she embraces access or adaptive technology like our ramp van or her bicycle with four wheels.

If we would have known of her impending disabilities before she was born we still would have birthed her because her disability is not cognitive and it is not debilitating, albiet inconvenient. The way that I view it is that there is a wide range of abilities among humans that can be expressed in a bell curve. Most people fall in a mainstream range, with a few on the edges with superabilities and others with disabilities. And no two people are the same - but that's just me being a hyperindividualist.

I could not say the same for Down syndrome. Some cases are not severe, and these kids can live fulfilling lives. I've seen it.

But I don't believe we're at the point where we can discern before birth at what range the Down syndrome will be.

I have never embraced the "disability culture," even if I can appreciate how such a phenomenon would manifest. But it should be a source of mutual support for the here and now for folks with disabilities and their families, not an end in itself to be perpetuated. To say that I wish my daughter could overcome her disabilities is not by any stretch some kind of self-hate or admission of failure, rather my wish that she not have to suffer the inconveniences and sometimes the physical pain associated with her disabilities. Otherwise, that would make me a sadist.

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If we would have known of her impending disabilities before she was born we still would have birthed her because her disability is not cognitive and it is not debilitating, albiet inconvenient. The way that I view it is that there is a wide range of abilities among humans that can be expressed in a bell curve. Most people fall in a mainstream range, with a few on the edges with superabilities and others with disabilities. And no two people are the same - but that's just me being a hyperindividualist.

I could not say the same for Down syndrome. Some cases are not severe, and these kids can live fulfilling lives. I've seen it.

But I don't believe we're at the point where we can discern before birth at what range the Down syndrome will be.

To be honest even if it were medically possible to test whether the Down syndrome afflicted kid is cognitively able enough to live a relatively normal lives, I would still abort it without a second thought.

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I understand that people with Down Syndrome are more resistant to many diseases and cancers, so it is not impossible for a person to rationally prefer a child with Down Syndrome, but it would take some pretty bizarre circumstances.

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I understand that people with Down Syndrome are more resistant to many diseases and cancers, so it is not impossible for a person to rationally prefer a child with Down Syndrome, but it would take some pretty bizarre circumstances.

Really? Do you have any evidence?

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This discussion reminds me of a social work professor I had in graduate school, who refused to even use the word "disabled." Instead, she referred to the disabled as "differently-abled." ;)

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I understand that people with Down Syndrome are more resistant to many diseases and cancers, so it is not impossible for a person to rationally prefer a child with Down Syndrome, but it would take some pretty bizarre circumstances.

An individual might be healthy enough to live one hundred years, and all the power to that. The problem is that, intellectually, people with Down Syndrome lack the level of reason required to be productive and (financially) self-sufficient.

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In addition, it isn't just about the potential child; it's also about the parents and what type of child they want to rear. Having a child is a conscious decision that people make for a reason. For most (all?) rational people, part of the underlying reason is a certain enjoyment in the process of child-rearing itself. At some level of disability, this enjoyment would be severely affected. In other words, it would be quite rational for prospective parents to end a pregnancy at some level of disability. There is no point creating a child if the reasons one had for doing so no longer hold true.

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The BBC reports that: "Following the widespread introduction of pre-natal testing for the syndrome, the number of babies born with Down's fell from 717 in 1989 to 594 at the start of this decade." However, this trend has reversed. "The UK saw 749 Down's births in 2006".

1000 parents were surveyed, to understand the reasons for the trend. Some results:

A fifth said they had known somebody with Down's, ...

...a third cited religious or anti-abortion beliefs and 30% felt life had improved for people with Down's.

... Almost one in five said they simply did not believe the results of the test.

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I understand that people with Down Syndrome are more resistant to many diseases and cancers, so it is not impossible for a person to rationally prefer a child with Down Syndrome, but it would take some pretty bizarre circumstances.

And people with sickle-cell are resistant to malaria. It is still illogical to trade a possible (i.e. non-)existence of major pain for a certain existence of constant suffering.

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My sister has autism. If my parents could have known that before she was born (assuming that autism does not have an environmental trigger in susceptible individuals), I hope they would have still chosen to have her, because she is a great person. However, it has made things more difficult in our family for all these years, and it would be ridiculous to assert otherwise. I know that there is a strong chance that my own children could have autism, as well as a host of other, well, fascinating disorders that may have varying degrees of heritability (bipolar, depression, substance abuse, etc.) It does make me think very carefully about having children, and considering the possibility of having to care for an autistic or otherwise mentally troubled child, especially with the responsibility I already have towards caring for my sister's future. But I still believe the risk is worth taking.

In addition, it isn't just about the potential child; it's also about the parents and what type of child they want to rear. Having a child is a conscious decision that people make for a reason. For most (all?) rational people, part of the underlying reason is a certain enjoyment in the process of child-rearing itself. At some level of disability, this enjoyment would be severely affected. In other words, it would be quite rational for prospective parents to end a pregnancy at some level of disability. There is no point creating a child if the reasons one had for doing so no longer hold true.

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I know that there is a strong chance that my own children could have autism, as well as a host of other, well, fascinating disorders that may have varying degrees of heritability (bipolar, depression, substance abuse, etc.)

Hi Kat,

Not necessarily.

There is some evidence suggesting that autism is caused by biological factors affecting brains development: early onset, the apparent life long course, and several physical diseases associated with it.

However, it is important here to make a distinction between biological and genetic. Many diseases are cased by non-genetic biological factors such as bacteria, chemicals, viruses, and so on. Everything that is genetic is biological but not all things biological are genetic.

A greater concordance for disease in monozygous (MZ) vs. dizygous (DZ) twins does not provide proof for genetic determinant ... especially in disorders in which the prenatal environment is thought to play a part. Dissimilar prenatal environments confound the results of such studies making it impossible to disentangle possible genetic and non-genetic biological factors. Furthermore, there are no studies on autism of twins reared apart, no adoption studies, no gene discoveries.

And there is evidence suggesting that prenatal factors play a role in causing autism. For example, it was found that mothers of autistic children had a significantly higher exposure to mercury when pregnant vs. control group. There are remarkable similarities between symptoms of autism and mercury poisoning including a higher rate among males vs. females. Also the pooled rate among fraternal twins is 3-4 higher than ordinary siblings - factor unexplainable on genetic grounds but would make sense if pre- and perinatal factors were involved.

What is needed to untangle genetic and non-genetic factors in twin studies is a comparison between monochorionic (MC) twins which are identical twins sharing the same placenta and those identical twins who develop separate placentas (dichorionic or DC). Most (60-70%) MC twins exchange blood through shared vascular communication whereas dichorionic (DC) twins very rarely do so. Sharing of placenta (the physical and physiological link between mother and child) is a very important factor with regard to prenatal environment, especially with twins. It exhibits variations with regard to membrane type, size, shape, and circulation which maybe important in themselves or may affect the nutrition of the embryo or the transport of drugs, toxins, and other agents which can influence brain development. Shared vascular communication would encourage mutual infection.

If autism is 90% heritable (like it is claimed) there should be no difference in concordance rates between monochorionic (MC) and dichorionic (DC) identical twin pairs. In the absence of this data we can't conclude genetic cause.

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If you want to have your Down syndrome child for whatever reason, go right ahead. But please, do not just use the child as an excuse to get on the government dole.

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Can you imagine someone on TV calling those parents who are unhappy with the new test the disgusting human beings that they are?

That person would be forced to apologize or fired the next day, because of a media onslaught against him or her.

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My sister has autism. If my parents could have known that before she was born (assuming that autism does not have an environmental trigger in susceptible individuals), I hope they would have still chosen to have her, because she is a great person.
Kat, I think this is a false alternative. Obviously since your sister is here as a real, valuable person, it is nearly impossible to look back and think of abortion as stopping a potential, rather than a real person. However, it is very likely that your parents actually prevented many people like you and your sister from being born, every time they used some birth control. [Of course, this may not apply to their specific case -- I know couples who had a difficult time getting pregnant, and took this into account when they got test-results.]

I don't know what the odds are for any couple, but let's take a hypothetical figure of 50% for your parents. i.e. let's say there was a 50% chance that any fertilization they allow to take place would result in a child with Down syndrome. Then, assuming that they had a whole lot of potential fertilizations and pregnancies to choose from, if they had known and still chose to go ahead with a kid with a Down syndrome, they would basically be choosing positively to create that child rather than creating one that did not have Down syndrome.

Consider this hypothetical: suppose scientists invented a test that was packaged along with the typical ovulation tests that one gets over the counter. Suppose this new test does not merely tell you whether you're ovulating, but also shows a likelihood of the baby having Down's syndrome. Given the assumed hypothetical 50% figure from above, imagine a couple whose test told them there was a much stronger chance of having a Down syndrome child if they tried to get pregnant this cycle. They now have the choice of trying, or waiting one or two months, to have a much better chance of creating child without Downs. In that type of hypothetical, choosing to go ahead would be quite close to deciding to give your child Down syndrome.

I understand that -- emotionally -- even thinking "I wish you didn't have Down's" can seem like betrayal if it carries the implication of having a different sister. However, I think -- in the final analysis -- it does come down to whether one thinks of abortion as killing a person, or stopping a potential person from being born.

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