Freedom of choice

UPDATE: This post earned a mention at Slate's Today's Blogs column.

During my wife's pregnancy, she and I were confronted with the same choice that all expectant parents face nowadays: whether to undergo the prenatal testing that can determine if a child is likely to be born with a birth defect or disability such as Down syndrome. But what to do with such knowledge?

We made our choice easily if not lightly. We decided to forgo the tests, because we knew we could not terminate the pregnancy, no matter the results. And because the tests are not 100 percent accurate, we did not want to live with a shadow cast over the pregnancy, only to find out when our daughter was born that we had nothing to fear. (Of course, with our daughter only three weeks old, there still is plenty to fear.)

Not everyone comes to the same conclusion, as the mother of a girl with Down syndrome discusses in this moving and troubling Washington Post story:

Whenever I am out with Margaret, I'm conscious that she represents a group whose ranks are shrinking because of the wide availability of prenatal testing and abortion. I don't know how many pregnancies are terminated because of prenatal diagnoses of Down syndrome, but some studies estimate 80 to 90 percent. ...

In ancient Greece, babies with disabilities were left out in the elements to die. We in America rely on prenatal genetic testing to make our selections in private, but the effect on society is the same.

Margaret's old pediatrician tells me that years ago he used to have a steady stream of patients with Down syndrome. Not anymore. Where did they go, I wonder. On the west side of L.A., they aren't being born anymore, he says. ...

Margaret is a person and a member of our family. She has my husband's eyes, my hair and my mother-in-law's sense of humor. We love and admire her because of who she is -- feisty and zesty and full of life -- not in spite of it. She enriches our lives. If we might not have chosen to welcome her into our family, given the choice, then that is a statement more about our ignorance than about her inherent worth.

I don't want to minimize either the trials of living with a severe disability or in raising a child with one. (I know, from experience in my own family, that neither is easy.) But how we can judge a person's quality of life before they are even born? And what other disabilities--or traits--will we decide are not worth living with, or not worth the inconvienence to those already living? Andrew Sullivan wonders what would happen if medical science allows us to identify a gene for homosexuality in utero. Slippery-slope arguments are of limited utility; as George Will has noted, all of life is lived on a slippery slope. Yet the pace of scientific progress is so rapid that these questions will be upon us sooner than we think. I hope we answer correctly.