Monday, July 22, 2013

I've Got Questions

Big news in the Ds community this week. It seems researchers can "turn off" the third copy of the 21st chromosome in lab conditions.  I have a developing thought process to this new revelation, and it's rather jagged, so bear with me.

First of all, I love science. I love that we can know things about the created world and that the more we know the more it points to an order of creation that is both logical and beautiful. So this scientific discovery is exciting to me just from that point of view.

Secondly, I do not think that just because we can do something means we should. I'm not a fan of embryonic stem cell usage because it treats individuals as things. Anything that reduces humans down to their usefulness is an unacceptable application of science. I also don't love the increasingly profit-hungry application of new science. Science is meant to be tested over and over so that we can understand the unintended consequences of the application before it is applied universally. Once we add profit to the mix the testing is skewed by motive and results are often iffy or worse, hidden.

The new discovery leads me to have more questions than answers at this point:
  • Combined with early detection could this therapy be applied in utero? If so this could make other Trisomies less likely to result in death for babies. Though Ms. Nora is certainly taking the "Not Compatible With Life" diagnosis rather lightly, it is true that many children with Trisomy 18 and 13 do not live much past birth or die during labor. Further, the defects associated with all Trisomies could be possibly eradicated. 
  • Could this therapy reverse the problems associated with Trisomies? If a child with a heart defect is born, would this therapy help the heart heal, or could the therapy help the child to become healthy enough for surgery? 
  • How long does the therapy last? Is this a life long therapy, or would there come a point where it is no longer effective?
  • For older patients, what would be the best case scenario for people living with Ds for many years? Mariana's neurological development is not the same as the typical person's development. Would the differences matter if this therapy is ready when she is older? What would be her experience if she suddenly does not have Down syndrome? Will her muscle tone improve, her synapses fire faster, her thyroid function better, or would this therapy just prevent her from deteriorating quickly as she ages?
While initially I discounted the possibility of this becoming a viable therapy for Mae, I won't just dismiss it. There are good reasons for hoping this could be a future aide for her. The future is a big unknown in this new world of Down syndrome. The amount Scott and I don't know outweighs what we do, and probably always will. Understanding what we do know and keeping abreast of any further success in this experiment is our only option at this point. Well, that, and enjoying our daughter as-is, but that's the easy part.

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