Wednesday, November 23, 2005

Logic at the Times

Miracles do happen, and on the eve before Thanksgiving, I'm going to be grateful for them. :) Today's NY Times (long regarded by conservatives such as moi as the anathema of our existence) has an article discussing whether or not a world free of genetic disease would be a good thing; if we're aborting all these kids, what does that mean for the ones already born, and what about late-onset genetic problems, such as deafness or Huntington's Disease? What about genetic diseases that don't impair cognitive function? Etc.

I was thrilled to read this on several levels. As we know, I'm a member of this community, and the idea that women would intentionally abort folks like me because we're "too much trouble" or something along those lines makes me shudder. Sounds a little like Nazi science to me, killing people because they're inconvenient. Brrr. The article mentioned a study that says 16% of women are more likely to have an abortion if the genetic problem doesn't affect the cognitive function of the child, which CF doesn't, but that still leaves a lot of kids in the cold, especially those with Down Syndrome, etc.

My favorite part of the article is this bit:

Lisa Hedley, whose 10-year-old daughter has dwarfism, said the condition is usually not detected prenatally. It is so rare that it has traditionally not been considered worth the expense of the genetic test. Soon, though, pregnant women may be offered a gene-chip technology that can perform hundreds of tests at once for a few hundred dollars.

"It's so complicated," said Ms. Hedley, president of the Children of Difference Foundation. "Would I choose to have my child have a disability? Oh my goodness, no. It's difficult for her. It's difficult for everyone. But difference is what makes the world go round."

Amen, Ms. Hedley. A lot of these kids can live normal lives, go to school, have friends, love, learn, go to college, etc. We just need help along the way, in the forms of therapies and other mechanisms. I never wanted to feel like a victim, and when people treated me like one it made me mad! Only by being in the world and with people do people learn to accept others that aren't like them. Not that I loved being a first-person teacher on CF for most of the people I know, but it's better for them and it's better for me, because they can explain it to other people so that more people don't carry around the wrong impression.

Also, genetic disease has a component of mutation involved; I'm pretty sure that's what happened in my case. As much as we would like to be able to, we can't control the human genome entirely. It's a living thing that creates what it will. Spontaneous mutations will always happen. So no matter how much we try to manipulate it, we're really fighting a losing battle. So isn't it better to spend research money on treatments and cures as opposed to tests to find out if the babies have certain diseases? If we can cure/treat these conditions better, then the changes for a normal life, already pretty fair for a lot of cases, can go even higher, which will encourage parents to have the children. Everyone wins.

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