Wednesday, 9 May 2007

Difficulty of Knowledge

I came across this article: Prenatal Test Puts Down Syndrome in Hard Focus (NYTimes): With the increase in prenatal testing for it, some parents of children with Downs Syndrome are moving to educate people in general more about the condition. They're worried that with more testing there will be more terminations and fewer people with Downs and that could further disadvantage their children (oversimplification, go read the article if you can).

As I started reading the article I wondered whether these parents were being selfish in trying to pressure parents into keeping a child they didn't think they could parent so that their children would have more people with Downs around in the future. Then I was stunned to read in the article that "[a]bout 90 percent of pregnant women who are given a Down syndrome diagnosis have chosen to have an abortion." I guess people do need to hear more about Downs in that case. I'm not saying that raising a child with Downs isn't going to be a challenge, that you're not going to have more to worry about for longer as a parent, but all the people I know with Downs are such valuable people. I can't imagine choosing to end a pregnancy with that diagnosis, although I know I'd be feeling even more overwhelmed by the responsibility of parenting.

All the testing that's available now (and I'm sure that what can be tested for and how easy and "risk free" the testing is will only continue to increase), I see as a curse as much as a blessing. [add: another interesting article: Genetic Testing + Abortion = ???.] Same with fertility treatments, and testing for things like Alzheimer's, cancer, Huntington's etc. that you might develop in the future [see this interesting article: Facing Life With a Lethal Gene also in the NYTimes]. For some people it's empowering to have this kind of information available, for others it's daunting or even destructive. Even pregnancy tests you can take before your period is due can make you crazy if you're struggling with infertility, that's why after a few years of ttc I stopped taking tests until I was 18 dpo (which would usually indicate a pregnancy in and of itself).

When is it better to learn to accept what life throws at you as it comes, and when is "forewarned is forearmed" the way to go? One problem I see is that being forewarned doesn't always allow you to find a way to deal with the problem, sometimes it makes things more complicated/difficult. It can give an illusion of control where you have very little. I guess I think it's important to think about what the implications of the possession of greater knowledge are and whether we're equipped to deal with them before we move forward in some of these cases and I'm afraid that not enough people think that through.

1 comment:

Anonymous said...

"When is it better to learn to accept what life throws at you as it comes, and when is "forewarned is forearmed" the way to go?"

Good question, but isn't the only fair answer that this is something each woman - and by extension each family - has to make for herself? Isn't that the whole point of choice - that we as a society believe women are better at assessing their individual circumstances and personal limits than whatever the lowest common denominator consensus can decide on her behalf?

I think at the end of the day, the idea of INFORMING a woman that she somehow owes it to the disabled community, and FORCING her to bear a child with defective genes is far more morally repugnant than any individual decision she could make.