Pre-implantation screening debate

I'm not done reading Defiant Birth: Women Who Resist Medical Eugenics yet, but I'm following the debate on a Business Week article by Elizabeth Schiltz on two blogs: Shiny Ideas and Ballastexistenz. Schiltz is one of the women whose personal stories make up the heart of Defiant Birth, so it's interesting to see how people react to the BW article which gives less detail about her personal life but still questions the unexamined use of the technology that now screens for thousands of genetic variations in pre-implanted embryos and (as yet, some fewer variations) in fetuses women carry.

Here's what I have learned about Schiltz from the book:

She's been pro-life all her life. Her oldest brother has Down syndrome and is a successful part of the workforce and his community. And she grew up in Germany literally in the shadow of one of the state hospitals where people exactly like her brother were killed by the Nazis a mere decade before his birth.

When she learned the fetus she carried had the marker for Trisomy 21 and submitted to further tests, she observed:

"The medical professionals I was dealing with through all those tests were not trying to find information to help me protect the health of my baby. Unlike the tests for anemia or HIV, there is little that can be done about the conditions that these tests were attempting to identify. These tests were offered for the purpose of bestowing upon me a special societal privilege to choose to abort my baby."

Schiltz's pro-life stance clearly effects her word choice and perspective about a "privilege" to choose abortion, but the thread of disability rights awareness that also runs through her narrative is honestly earned through experiences with her brother. Of the direct and intrusive questions she received while pregnant, she says:

"I was comfortable defending my position that I didn't believe in abortion, that I didn't think I did have any choice in the matter; I was still in familiar, pro-life territory. But I left that familiar territory the moment Petey was born, and I found, to my great surprise, that society still kept asking that question: Why did you have that baby? I have had people react with marked surprise when they hear that I knew Petey would have Down syndrome before he was born."

She then examines the moral judgments society connects to the availability of screening technology:

"Bob Edwards, the scientist who created Great Britain's first in vitro fertilization baby, recently... [said]: 'Soon it will be a sin of parents to have a child that carries the heavy burden of genetic disease. We are entering a world where we have to consider the quality of our children.' "

There's the HMO that initially denied medical coverage of a baby born with cystic fibrosis because the woman knew beforehand of the child's condition. There are the increasing number of "wrongful life" suits where parents sue medical professionals for failing to diagnose flaws in the babies they've given birth to. There are the doctors who do not tell parents of babies born with heart defects sometimes accompanying Downs syndrome that with surgery it can typically be fixed, but instead inform the parents that surgery and it's risks are not worthwhile. There's the cost-benefit analyses being applied to specific fetuses to determine the worth of their lives.

Both Schiltz's essay and the lengthy introduction of Defiant Birth (authored by Melinda Tankard Reist) appear to be scrupulously documented with endnotes. And while I haven't read most of the other essays in the book and can't tell what percentage of the women speak from a pro-life stance, the introduction and Schiltz's piece both present the disability rights perspective against eugenics in organized and persuasive logic. I'll report on the rest of the book when I've finished it all, but I'm already finding it to be an interesting mix of abortion politics, feminism and disability rights.