Against a Cure for Down Syndrome?

Cure Down SyndromeI just read an absolutely fascinating article about health care and Down Syndrome. Scientists are moving ever closer to being able to turn off the effects of the extra third copy of chromosome 21. Eventually they might even be able to prevent the disease altogether.

The new therapy promises to alleviate or eliminate some of the symptoms of the syndrome by switching off the genetic material responsible.

What makes the article fascinating? How do these quotes strike you:

  • If Down syndrome were completely cured, the world would lose something from the absence of that culture.
  • We’re not looking for a cure. We’re looking to help and support people with Down syndrome live healthy and productive lives …
  • But ethicists fear that genetic manipulation could spell the end of the disorder …

In other words, we don’t want a cure.

I understand that relatives of people with the disease are worried that their loved ones will be forever changed by a cure. That the cure might turn off other genetic functions and come with its own peril. Particularly in the early years.

However, the reality is that someone with Down Syndrome is limited in their life’s potential. Their life is radically diminished from what it could be. Maybe they are happy but they cannot experience life fully. With modern therapy and understanding they have things better than throughout history but their intelligence is limited and their lifespan shortened. They often suffer from awful diseases.

I have friends with a Down Syndrome child and I’m eager to hear what they think about the possibility of a cure. My friend is a big, strong, athletic guy and his son will never be that. I know for a fact that they love him just as much their daughter who does not have the disease.

When I read these quotes from parents who do not want a cure, fear a cure, I certainly understand. They love their child the way they are. They fear that their child, if cured, could be forever changed, will have to suffer the trials of a full life.

Ignorance is bliss as they say. But it’s bliss with a price. A heavy price, too heavy a price.

Given a choice between going through life mentally challenged and happy or less happy but with a greater capacity to understand the good and bad that the world offers; which would you choose?

It’s like not playing the game because you might lose.

As for me, I’d rather play than sit on the sidelines. Yes, I might well lose, but the experience of life is worth it. I think everyone should have that chance. Everyone should be given the opportunity to live their life to the fullest. Maybe they will be unhappy and miserable, but maybe not.

I’m for a cure but I don’t have a Down Syndrome child. I do have a mentally challenged niece and if there was a way to cure her I would absolutely be for it.

What do you think?

Tom Liberman
Sword and Sorcery fantasy with a Libertarian Twist
Current Release: The Sword of Water
Upcoming Release: The Spear of the Hunt

8 thoughts on “Against a Cure for Down Syndrome?

  1. I have a child with Down syndrome, and take some issue with your view that someone who doesn’t want it for their child is blissfully ignorant. My child has no health issues except for hypothyroidism, which is very common and very treatable. That leaves his intellectual disability. The idea that the only way for society to approach intellectual disability is to change it is very troubling. That said, I’m not categorically against the idea. The reality is, should my child grow up and have this kind of treatment available to him, that will be his choice. I can only hope that I’ve raised him with enough confidence and self-esteem that he can make a well-reasoned, informed choice, rather than an emotionally driven attempt to “fit in”.

    • Hi jisun,

      Thank you for the comment.

      My ignorance is bliss comment was not directed at the parents of Down Syndrome children.

      My intent was to suggest that a mentally handicapped person might appear blissful but that was not true bliss because they cannot experience the fullness of life.

      I see how the paragraph, coming directly after the previous paragraph could be misconstrued.

      I did not in any way mean for the sentence to be about the parents of the child.

      I’m sorry for the confusion and please come back any time.

      Tom

      • Thank you for clarifying. I still am having a hard time with the “ignorance is bliss” comment in this context as well. It seems to assume that a person with an intellectual disability has no self-awareness. ID is simply a different functioning of the brain. Also, the idea that a person with a developmental or intellectual disability would not have “true bliss” because they cannot experience the fullness of life a) assumes that there is an objective measure of “true bliss” and b) sounds a bit paternalistic to decide who can experience an objective fullness of life. I know many children and adults with intellectual disabilities who live very satisfying, full lives, not despite their disabilities, but simply with them.

        I appreciate your openness and willingness to discuss, so thank you for that.

        • My intent is to suggest that the phrase “ignorance is bliss” is incorrect.

          Not that people with disabilities can’t be blissful. Everyone can be blissful, even animals.

          It’s merely the idea of the statement that I’m trying to combat.

          I think we’re on the same page, I’m just not communicating my meaning very well.

          I think you would agree that anyone who said a Down Syndrome child is “lucky” to have mental disabilities because they are happier would be completely wrong. That’s the point I’m trying to make.

          I’m saying that to experience life fully is a better life than to face the limitations of a terrible genetic malfunction, even if it means less “bliss”.

          I hope that makes sense,

          Thanks again for the comments!

          Tom

      • I do think I understand what you’re saying, but what I’m saying is that I disagree with the fundamental basis of your thinking, that someone with a disability is limited in potential. Also, the idea that one experiences life more fully simply because they can process a different kind/amount of information in their brains does not ring true for me.

        It isn’t a terrible genetic malfunction. It is something that happens, with risks and benefits (yes, there are some benefits). There are people with varying degrees of Trisomy in them and they don’t even know. There are people with deletions, translocations, carriers, etc. and they go about their day simply because no one has looked at their chromosomes. I don’t know how your friends see Ds, but in my experience with my son and meeting many other teens and adults, Down syndrome is just… Down syndrome. Health issues, while influenced by the chromosome, are not one in the same as the syndrome. In reality, most people are limited mainly in that the world is a hostile and unforgiving place for people with disabilities, just as it is for anyone with difference.

        I hope you don’t think I’m a troll. I really find the perspectives outside the community to be interesting, so I commented. Thanks for the discussion. 🙂

        • Hi Jisun,

          Then we completely disagree. I do think someone with any disability is limited in some way. I also think Down Syndrome is a terrible genetic malfunction. I absolutely think someone with Down Syndrome has limited potential.

          It’s not fair, it’s not right, society makes it worse, but it is limiting.

          I want a cure, I want no one to be born with it again. I want no parent to ever hear the doctor tell them their child has it. I’ll stand by that statement until the day I die.

          Thanks for commenting,

          Tom

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