Should Downs Syndrome Be Cured?

Two thoughts.

1. In practice, the decision might not be so simple. For a long time, I formulated my position on the matter regarding my son as “Given the choice between ‘Corky’ with trisomy-21 and an otherwise identical ‘Corky’ without trisomy-21, I would choose the latter.” But I’m not really sure that’s true. ‘Corky’ also has severe expressive communication deficits that are not typical of Trisomy-21 and might not respond to a proposed cure for that condition. Would I be doing him a favor to give him normal intelligence but leave him with no functional means of communicating? Don’t know.

2. What conditions are in need of being cured? Does shortness need to be cured? Do unibrows need to be cured? I could go on and list a bunch of conditions that might be “curable” in a medical sense, but that would ignite a firestorm of protest at the very idea that they need to be cured or that parents should even be allowed to consider messing with them. I think that there is a strong argument that Downs is on the “cure” side of the line, but if “curing” my daughter’s femaleness (to take a particularly outrageous example, but one that many Chinese parents limited to one child would jump at), you’re pretty clearly on the other side.

I think the deafness issue is more about an entire culture and language that exists in the deaf community. I can understand why deaf parents would fear the separation of not sharing that culture and language with their kids, even though I agree that there is some element of selfishness involved. It think there is a righteous desire in there as well.

When it comes to Down Syndrome, I just can’t wrap my mind around the idea that we would not jump at the opportunity to cure it if that were an option (of course, the kinds of treaments discussed in the article are not really cures, so the water is murkier in reality). I think this line in the response from a mother of a Down Syndrome child quoted by the article is telling:

I find it hard to read this article without hearing a judgment on the value of my children

Sometimes being too close to an issue clouds your vision rather than clearing it. I understand why she would feel threatened by talk of “curing” her son and I sympathize with her fully, but at the same time it leads me to largely discount her perspective as too emotionally invested to assess the situation rationally/unbiasedly.

A related and broader issue is the question of bringing modernity to so-called Stone Age peoples. Do we “cure” their primitivism by bringing them penicillin and refrigerators and writing — and inadvertently introducing new diseases and destroying their language and culture? Do we condemn them to lives that are “solitary, poor, nasty, brutish and short” by shielding their culture from contamination but thereby withholding modern medicine, education, and technology?

In the cases of Down syndrome, deafness (I don’t know of any analogous resistance to curing blindness), and primitivism, we have the same question of choosing between the valuable person someone has become with and by virtue of the difference, and the valuable person they would have been absent the difference.

Susan,

It is not passing judgment on the children, but on the condition. It is most certainly a judgment that it is better not to have Down Syndrome than to have it. I would vigorously defend that judgment. However, it in no way says that the child is less valuable as a person. In fact, it is because we value and love the child that we want the best for that child (i.e. for the child not to have Down Syndrome). I don’t think a single person would choose Down Syndrome for themselves if given the chance.

By the way, I didn’t mean to imply that the only people to share her view would be those that are emotionally invested. There are diverse reasons for people to be wrong about things. (edit: please read that with a wink and smile)

Ardis makes a good point about primitivism. Some people want to make sure that we don’t bring modernity to people living in the stone ages. I have no problem with a person who, like Thoreau, goes into the woods because they wish to live deliberately. However, to the fullest extent possible I think we should give people to the opportunity to embrace or reject modern medicine, education, and technology for themselves. To do otherwise is to value the primitive way of life over the actual people forced to live according to that way of life.

Having a child with a disability changes how you view things. You can’t help it.
My child has a language disorder. When I read something online written by someone with Asperger’s who didn’t want to be cured, who objected to the idea that it was something that needed to be cured, it really changed things for me. We need that idea out there, we need the discussion about what things need to be “cured” and why we want things to be “cured.”
I appreciated the perspective and it gave me something I needed. I needed to look at my son and no longer see him as a kid with something wrong. Something to wish away.
Something was wrong and I had to work very hard every day to help him. It is a huge burden on a parent.
I’m not saying I wouldn’t give him the cure if I had it. I would. I work hard every day to help him so I technically I am working on the “cure” the slow way.
I just wish I could write down what I mean. How I realized that my parents loved me and were perfectly willing to accept me with my weaknesses. How necessary it was for me to view my son in a new way.
It helped me see that my son’s challenges would influence what became his strengths. Would I take those away from him too?
There is no alternate space time continuum.

I think DS is unique in that it makes the children almost like cuddly teddy bears, so its hard to see that as “damaged”. If they were physically crippled and required tons of medical treatment, surgeries, and had a risk of death, etc, I don’t think these parents would be singing the same tune. My son was born with a genetic disease that YES, made him damaged, and guess what? He died from it. I would’ve chosen to have it fixed in a heartbeat. I think its selfish for people to consider leaving people with disabilities if it could be fixed.

I’m sure a large part of it is the whole “People with DS were the most righteous in Heaven” dogma. No, people with DS have it because thats what happened to their genetic code. Or the justification that people try to use “Oh, your family needed to learn something from this”.

If I was pregnant with a DS child, I would keep it. No questions asked. I definitely think it can be a learning experience and we can find good in the experience. But if I could cure it before the child was born? Yes, of course I would.

Firstly they aren’t actually talking about a cure for Down’s Sydnrome it’s a possible treatment realting to the problems in cognitive ability related to having Down’s Syndrome.

Secondly, perhaps they should focus more on treating and curing the medical problems associated with Down’s Syndrome. You don’t die from having this genetic condition but you can from some of those medical issues.

For instance about 47% of people with Down’s Syndrome are born with congenital heart defects, many of which require surgery to prevent early death, but even given the current high success rates of that surgery, it is not 100% and the child and family have to go through a very emotional procedure. It would be much better if we could eradicate these problems which I’m sure everyone would agree with before we get into whether or not we should treat cognitive ability.