Wednesday, October 13, 2010

Down Syndrome Awareness -- Prevention?

(Republished from an earlier post written before anyone knew that Take a Walk on The Happy Side existed.)

We are all inundated by telemarketers with requests from various organizations fundraising on behalf of their worthy cause. Funds collected are then spent on various efforts to raise awareness; to advocate on behalf of those afflicted; and to conduct research to better understand, treat, cure and, ultimately, prevent the disease in question. Like most, I give what I can to the causes that I believe in and to the organizations that I trust.

However, I recently found myself troubled by something pertaining to fundraising on behalf of people with Down syndrome. As I mentioned above, research generally includes scientific understanding of the causes and effects of the disease or disorder, with an eye toward treating and curing those afflicted and, ultimately, to preventing the disease or disorder in question from occurring in the future. That said, the question that troubled me is this: what is the ultimate goal of Down syndrome research? I am absolutely in support of a deeper scientific understanding of the causes and effects of DS. I am absolutely in support of researching better treatments, and ultimately cures, for the negative symptoms or health issues that people with DS may experience. I suppose, curing a person with Down syndrome would mean being able to remove the extra chromosomal material from any and/or every cell in a persons body before it has any negative affect, or reversing the negative affect that extra chromosomal materials has on the individual.

But, here's the part that bothers me a bit... Tell me, what does it mean to prevent Down syndrome? To keep it from ever occuring would require knowledge of exactly where and when that first accidental over-duplication of the 21st chromosome happens so that you can undo the mistake and then allow normal duplication and development to continue without further interference thus avoiding the development of an individual with Down syndrome.  That would be extraordiary, wouldn't it?  But I suppose knowing that would be like knowing exactly when one cell splits and becomes identical twins.  I'm as amazed as the next guy over the incredible leaps and bounds science is making every day but we're not there yet.  And, I'm not sure we'll ever get to what I've just described. Which is just fine with me. The even more bothersome side of preventative research might mean that we find a way to detect the 21st chromosome over-duplication error in days-old fertilized eggs or fetuses and terminate the development* to prevent them from becoming a person with Down syndrome. As it is, statistics site that 92% of all fetuses diagnosed with Down syndrome are terminated.  And, yet, Down syndrome continues to exist.

But, let's say we succeed in preventing Down syndrome this way.  Eventually, people like my beautiful Little Men would no longer exist in this world. I simply cannot imagine how our world could be a better place without the likes of my children. My Boys and all people with Down syndrome teach us so much about acceptance of human differences that extend so far beyond this one affliction.  My Boys help me to focus on my blessings.

I'm not suggesting we don't do the research. I'm just pointing out a troubling science-gone-bad angle.  Troubling for me anyway.  But then, maybe you'd have to know My Boys -- or someone else with Down syndrome -- to really understand my trepidation.

Would the world be a better place if people with Down syndrome no longer existed? 

* Note: I am not arguing for or against abortion rights. That is an individual issue and choice. I am just making an observation as it relates to the ongoing existence of people with Down syndrome.


  1. This strikes a chord with me, Maggie, and I've been wanting to touch on this issue on my blog. I find myself sad about the March of Dimes' mission to "prevent birth defects.". Ds is considered a birth defect, so I can't help but ponder what this means.

    1. I agree Maggie, but I also think for the people that don't want ds kids that the research should continue but if people choose to respect their differences there will be more good people like you.

  2. I'm not sure what the intent is, either, but I don't like the alternative... 92%! That's frightening.... Maybe the research would help develop something to reduce/divert/eliminate that chromosome -- I don't know... so much is done and can be done... but, those are precious lives and deserve a chance as much as anyone else... Good post... Thanks for sharing... Any updates?

  3. I can't believe you have only gotten 2 comments on this post so far. I agree with you 100% My 3 kids with DS and all their friends with DS are awesome. They have taught me so much. I am posting a link to this tomorrow in my blog for DS Awareness Month. Susan

  4. Check out my post on this guy.
    I say- DS is NOT a birth defect- it is a lifestyle! The idea of prevention is a tricky one- eugenics is a slippery slope. I think we have methods of detection and then people should have choices. I hate the idea of a world with only people who are a "norm"- and who would pick such a thing? Aryans, republicans, tea baggers, the military? Whoops- I'm getting passionate!

  5. Hello! There is a image on the right side of your blog that has "Advocate" at the top and then says "Down syndrome" on the other part of the ribbon. We purchase this image as car magnets awhile back and am wondering if you have any idea where we could order more car magnets with that image??