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A cure for Down’s syndrome?

Posted in Ethics, Scientific research, Therapeutic treatments by Matt at WelcometoIllinois on October 23, 2008

An interesting question has been posed on the End Down Syndrome blog that has got me thinking:

“If tomorrow it could be proven to you that a new gene therapy could cure your child of Down Syndrome overnight, with no side effects and for all intents and purposes your special child would be normal, potentially even smarter than most, would you allow the procedure to be done on your child?”

There’s no easy answer to that. In fact my first response was to consider its posing as a trap: If you say you would allow the procedure, does that not suggest a rejection of your child and undermine the decision to continue with the pregnancy after diagnosis? If you say you would not consider the procedure, does that not suggest that you would prefer your child to suffer?

I have written a few times here about research into drugs to improve life for people with Down’s syndrome, and I would have no qualms about making use of drugs and treatments that promised to improve the cognitive and physical abilities of my son.

Gene therapy feels like quite a different proposition, however, and the suggestion immediately raises questions about fundamentally changing the personality of the recipient. Would you take that risk with your child – Down’s syndrome or no Down’s syndrome?

It is due to those concerns that it would not surprise me if many parents of children with Down’s syndrome would refuse such a treatment. Returning once again to Simon Barnes’ article in The Times, he wrote:

“Of course you’d want certain physical things changed: the narrow tubes that lead to breathing problems, for example. But that’s not the same as “changed”, is it? If you are a parent, would you like the essential nature of your child changed? If you were told that pressing a button would turn him into an infant Mozart or Einstein or van Gogh, would you press it? Or would you refuse because you love the person who is there and real, not some hypothetical other?”

On the other hand, over at Cause of our Joy, Leticia Velasquez wrote an excellent post on this subject a few months ago following criticism of her support for research on a cure. She argued that too often parents “get confused about loving the child and hating the disease”.

My honest answer is that I do not know what I would decide. That sounds like sitting on the fence, no doubt. However, given that our son is just one month old we do not know how much of an impact Down’s syndrome will have on his life, making it difficult to answer the question at this stage.

The other issue is that I suspect this is a question that is impossible to answer hypothetically – just as I believe that no one can predict how they will react to an ante-natal diagnosis of Down’s syndrome.

What I will say is this: I would certainly welcome the scientific advancements that would give me the opportunity to make that decision.

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8 Responses

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  1. Rickismom said, on October 23, 2008 at 11:28 pm

    I posted on this in march. The comments are a big part of it…
    I will add that wanting a cure in no ways shows lack of love for Ricki, nor lack of apprecian for Ricki as a person.

    So please check out:

    http://beneaththewings.blogspot.com/2008/03/i-wouldnt-change-her-if-i-could.html

  2. AC said, on October 24, 2008 at 1:51 am

    My question about gene therapy was not a trap. It is simply the first place my mind goes; I received my college degree in genetics and molecular biology.

    “I would certainly welcome the scientific advancements that would give me the opportunity to make that decision.”

    I could not have asked for a better answer. As I keep saying this is a complex, difficult subject, especially after the child is born.

    If the risk is reasonable, I personally would be for giving my child the best life possible. And the best life possible does not necessarily mean having Mozart’s genes. Although, Lane Armstrong heart and lungs would be cool. But again, it is all a matter of risks, values and goals. I certainly would not be in favor of a daughter spending her life having plastic surgeries just to make her self feel better about herself. But there are a number of valid reasons for such surgery, and I certainly would not be against going under the knife to improve a few things about myself.

    Sames goes with gene therapy. If I could push a button that would make me smarter, or run faster of lose some of the fat I gained the past years…. so being a normal, rather intelligent, and healthy person who still sees the value in making my self better, I can’t help but see doing the same for my children whether they were diabled or not.

    Again, big questions in some cases. In others it seems like a no-brainier. If my children were blind, had a cleft lip, or were a paraplegic. I would want to do something to help. Since our brains are so much more important… a button for that would be quite a discovery!

  3. welcometoillinois said, on October 24, 2008 at 5:51 am

    AC – I didn’t write that very well. What I meant to say is that I thought at first it was a trap but only because it is such a challenging question. Thanks for asking it.

  4. kayla said, on October 25, 2008 at 1:06 am

    such a great blog some how i found you lookin for things on our sons birth defect esophageal atresia

  5. welcometoillinois said, on October 25, 2008 at 6:58 am

    Thanks Kayla. The volume pf post on your blog is phenomenal. where do you have the time? Some fantastic info on DS as well – I’ve learned a lot just reading the first page! All the best wishes for your family

  6. Illinois Mom said, on October 26, 2008 at 5:08 am

    I guess I have always separated my daughter’s personality from her gene sequence. Her personality is very much like those of my other children, which is why she fits so well in our family.

    My older son has asthma. Not surprizingly, no one has ever asked me if we love him less because we treat his asthma. I personally would explore any medical possiblity to help my daughter, just as I would for both of my other children.

    Down syndrome doesn’t define my daughter, it is just something she has to deal with. We have worked hard at raising her as we did our other children and so far it is paying off. At this point, our daughter is higher in some developmental areas than her peers without Down syndrome. People ask us why and how, but I really don’t have an answer. I personally believe it was the sign language we used. As Rachel Coleman, creator of Signing Times says, speech is a skill not a language. By ensuring our daughter had language in those critical 0-3 years, it sure seems to have helped reduce the cognitive delay. I would love to find research on this, if anyone knows of any.

    At this point, the sign language has led right into reading, and the reading is encouraging her to speak in full sentences, two years before we were told we could expect her to even speak. It is really exciting stuff. So, for now, I’ll keep my eye on the medical research, but I’m concentrating more on providing her with the opportunities she needs to grow and develop to her full potential–just as I do with my other children.

  7. [...] response then was that while I was in favour of using drugs to improve life for people with Down’s [...]

  8. [...] do understand, however, why some parents would be wary of a theoretical cure. I previously mentioned, twice, that while I am in favour of using drugs to improve life for people with Down’s syndrome, [...]


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