Monday, August 12, 2013

Curing Ds

A friend recently sent me the link to this article.  It is an interesting one, if you chose not to read it, basically, scientists have started figuring out ways that they can "silence" chromosomes. The thought may be that, somewhere in the future they can silence the extra chromosome that is the cause of Down syndrome. Scientists don't believe that it could be used to silence the chromosome across an entire life, but in isolated portions of the body in order to help prevent or cure common ailments or diseases that can be found in high correlation with Down syndrome.

This article is hard for me to think about.

On one hand, I think it would be fantastic to make sure that Johnny and other's like him, live a long and full life, absent of as many problems as possible as far as heart disease, leukemia, Alzheimer's and other massive health problems are concerned. My question with this however would be wondering why there isn't more research being developed to treat those concerns for the general population. Because these ailments are found in large numbers regardless of chromosome enhancement, I would encourage researchers to look for cures that are not chromosome related. If they could effectively isolate a chromosome in that way, it would mean great things for the Ds population, but would not be able to help the general population in a meaningful way. Do I hope for a cure for these conditions? Of course. But I want a cure that all can use.

I am concerned as well because there could never be research done without potential serious consequences in altering who that individual was. If you begin isolating and silencing chromosomes, will that alter other aspects of behavior, tendencies, and personality? While I would love for Johnny to be healthy, I wouldn't want to change the core and essence of who he is. I wouldn't want to lose the boy who has stolen my heart every day of his life. There is no way that science could guarantee that parts of him wouldn't be lost with this silencing occurring. It feels like such a slippery slope in trying to control genetics to that large of a degree that you are isolating 1/47th of the chromosomes found in millions (if it is partially silencing) or billions (if complete) of cells in his body.

Further, while I want him to be wonderfully successful in all that he tries to do and to never have a pain in the world, that isn't reality for any person. I cannot write his story for him and I cannot predict what plan is set out before him. That isn't my role. While I fully believe that God gives us cures and scientific research for all sorts of purposes, to go in an alter chromosomes to that degree seems a step to far for me. There is a point where I have to accept that there isn't "that much wrong with him" that I would alter cells within his body.

Interested to hear what others have to say. It is hard to collect my thoughts on this article because I enjoy reading the science and may have thought it fascinating years ago. Now the personal side of things hits too close to home and it is hard to wrap my mind around. Feel free to comment, message me, email me and let me know what you think.

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