We are all inundated with requests from various organizations fundraising on behalf of their 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 I believe in and to the organizations I trust.
However, I recently found myself troubled by something pertaining to fundraising on behalf of 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 prevent 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 that people with DS may exhibit. I suppose, curing a person with Down syndrome would mean being able to remove the extra chromosomal material before it has a negative affect, or reversing the negative affect it has on the individual.
But, here’s the part that bothered me a bit, honestly… Tell me, what does it mean to prevent Down syndrome? To prevent it from ever happening would require knowledge of exactly where and when that first accidental over-duplication of the 21st chromosome occurs so that you can undo the mistake and then allow normal duplication and development to continue without further interference thus becoming an individual without Down syndrome. Now, don’t get me wrong, I’m as amazed as the next guy over the incredible leaps and bounds science is making every day. But, I’m not sure we’ll ever get to what I’ve just described. The other, 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 prevent them from developing* into a person with Down syndrome.
So, if we succeed in preventing Down syndrome this way, eventually, people like Brian and Michael would no longer exist in this world. I simply cannot imagine how our world would be a better place without the likes of such beautiful people. Brian and Michael and people with Down syndrome teach us acceptance and help us to focus on our blessings, one way or another. Mind you, I’m not saying don’t do the research. I’m just pointing out a troubling angle… Troubling for me anyway… But then, you’d have to know Brian and Michael — or someone else with Down syndrome — to really understand my trepidation.
* 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 existence of people with Down syndrome.