March 13, 2006

A Wrongful Birth? The Moral/Emotional Landscape That Doesn't Show Up In The Sonogram

Wow. I'd put off reading Elizabeth Weil's NYT Magazine article about the emerging concept of wrongful birth, but now I'm glad I did. It does a pretty great job of laying out the emotional, moral, ethical, and medical issues that arise from increases in prenatal testing--especially PGD and other genetic tests that can screen for potentially serious diseases or disabilities.

The gist is that a lot of doctors and hospital genetics counsellors--and some parents--are operating on the assumption that prenatal testing is for helping decide to terminate a potentially problematic pregnancy. Whatever your views on abortion, it's easy to see where this gets hairy: around the question of what's "problematic." Down Syndrome? Deafness? Tay-Sachs? Anencephaly? Abstracted moral principles quickly become specific, individual circumstances, and the information that people have to make decisions and recommendations is usually incomplete at best.

For all the presumed precision of science, it's a reminder that pregnancy still involves a lot of unpredictability and uncertainty.

A Wrongful Birth? [nytmag]
Previously: yeah, this article's been written before, but not as well.


As testing gets better, it's going to get worse. What if you just find out that your kid has a 110 IQ? Or maybe she's missing an ovary? Or more susceptible to diabetes?

It's going to get a lot worse.

and then there's the problem that no prenatal test will ever be correct all the time.

a family member recently gave birth to a happy, healthy girl despite prenatal testing that indicated that she had down's syndrome and all manner of heart and bowel defects. the recommendation was to abort the "problematic" pregnancy.

That's what worries me about this stuff. With dd we were told she was going to be a dwarf based on u/s results and a study done of 12 babies who had her measurements. Ok that's fine. Then stupid OB took it to mean that she wouldn't survive outside of the womb so we had an amnio. Came back fine. Results for whether she would be a dwarf or not came back when she was 3 months old. At that point the geneticist had already told us at birth she wouldn't be one.

What the whole experience taught is is that there is too much information and tests out there and little time spent figuring out how best to interpret the info. I'm admantly pro-choice but even I get squicky about this just from the unreliable info out there let alone the implications of trying to create a "perfect race".

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