Friday, August 02, 2013

Scientific Advances and Moral Dilemmas

This past week, for no reason in particular, I got to thinking about all the knowledge we have today, about Fragile X and the human body and brain development.  And all the decisions we have to make because of that knowledge, that 100 years ago (heck, 30 years ago) nobody even had to ponder.

We know exactly where Fragile X comes from.  We know the spot on the X chromosome where it happens.  So now doctors and scientists and are working to control it.  To "fix" it.  Either with a cure, or with better targeted treatments.  We are encouraged to participate in research, whether they be drug trials or language and development and social studies.  With all of this research and studying going on, with every passing year we are closer to some real miraculous possibilities in medications.

In the meantime, we nonscientific people, we parents and laypeople, get to talk about what we should do about all these new possibilities; this new world of cures for ailments and conditions and disorders that for decades, centuries, we've taken for granted as permanent and unchangeable.

On the one hand, we adore our children, disabilities and all, and know that we wouldn't change them for the world.  They are perfect just as they are.  They are perfect, amazing little beings.

On the other, once we know the details of how a genetic disorder is passed on, a lot of us move heaven and earth to avoid having more kids with disabilities.  Birth control, family planning, and if we DO want more children - adoption, IVF, or (gulp) winging it - taking a big chance on fate.

That's kind of admitting that things aren't so perfect, are they?

If you have a child with Fragile X (for a quick course on what Fragile X is, see the above tab, About Fragile X), as you learn about it, you have to look through your family tree for other carriers, to see who else might be "at risk" of having children with Fragile X.  Having more of these children with challenging disabilities, who are like your own heart, walking around outside your body.

That's what it comes down to - I think.  My kids are like my own heart has broken free from my chest and it's out and about, in the world.  And they have such a hard, hard time, and I don't know how much more of that heartache I can bear - that's why I don't have more kids.  It's about me, really.  There.  Answered my own question, I guess.

Well, that, and the fact that the second kid turned out to be twins, which was one more than we were aiming for.
It's tough, keeping up with technology and knowing how to feel about the new knowledge and options we have.  Knowing that I'm the carrier of this gene that gave the boys FX, I could easily feel guilty, but I know I'm not at fault.  I know I didn't know.  My dad is a carrier too, but he knows he didn't know.  His mother, though - she never knew.  We didn't tell her, because I'm not sure she wouldn't have felt guilty at having given this gene to her son, granddaughter, and great grandsons, and we couldn't let her feel that.
So much new information comes at us, and nobody tells us how to process it.  Nobody tells us what we should think or do about our new choices.  These new possibilities.

It's not unforeseeable that a cure could exist for Fragile X.  Someday a mother is going to find out her child has Fragile X and the doctor is going to say "but we can correct that gene.  Don't worry about that, that's fixable."

Are there mothers out there who will respond "No, thank you.  He is perfect just the way God made him."?

I bet there are.  And those mothers, those parents, will spend their lives advocating for rights for their sons, trying to make the world find a place for them.

Should we change the world to fit our children, or should we change our children to fit into the world?  Or will we have to do both? 

Because as of today, the number of people on earth with disabilities is growing, fast.

It's a lot to think about.

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