Welcome to Illinois

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.