Monday, March 24, 2008

"Politically Correct Eugenics"

As promised, I have a piece in this week's Weekly Standard about the laudable legislation authored by Senators Kennedy and Brownback to reduce the number of eugenic abortions and post birth cut offs of medical treatment (first discussed at SHS here) by ensuring that parents receive accurate and nondirective information about the prospects of their children with genetic disabilities. From my article:

It is a bitter irony that even as we are enlarging our commitment to human equality in many areas, we are turning our backs on it in others. In particular, we may be about to eliminate from our society people with Down syndrome (DS) and other genetically caused disabilities.

With the development of prenatal genetic diagnosis, the drive toward eugenics has returned with a vengeance. Americans may heartily cheer participants in the Special Olympics, but we abort some 90 percent of all gestating infants diagnosed with genetic disabilities such as DS, dwarfism, and spina bifida. Not only that, but a study published in the American Journal of Obstetrics and Gynecology in 2005 found that of the approximately 5,000 babies born with DS annually, only about 625 were born to mothers who knew of their baby's condition before birth. Together, these figures suggest that under the regimen of universal prenatal genetic testing urged upon us by the American College of Obstetrics and Gynecology, the number of DS babies born each year could plummet below 1,000.

I point out that Kennedy and Brownback are the strangest of political bedfellows, and how a study showed that 23% of mothers of babies with Down said that the counseling they received after prenatal genetic testing was either negative or pushed the abortion option. And then I illustrate how the "Prenatally and Postnatally Diagnosed Condition Awareness Act" might work were it to become law:
The case of cystic fibrosis is suggestive. After a prenatal genetic test was recently developed to detect this disease, the number of CF live births in Massachusetts plunged by about 50 percent. No one knows why--no studies have been done. But if this drop is due to eugenic abortion, perhaps some of these children would have been carried to term if their parents had been required to be informed that great progress is being made and CF is no longer a certain early childhood death sentence.
I quote the Times of London columnist on the joys of parenting his Down syndrome son (covered here at SHS), and conclude:
A famous columnist once opined that only people who have the "moral authority" earned by hard experience should express opinions about such difficult matters. What Kennedy and Brownback hope to provide to parents of genetically disabled babies is the legal assurance that they will be provided information that is complete and informed--rather than counseling tainted by prejudice, ignorance, or fear. The Prenatally and Postnatally Diagnosed Condition Awareness Act may have a clunky name, but it is a noble and practical bill that deserves the support not only of those ideological opposites Kennedy and Brownback--but also of everybody in between.

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3 Comments:

At March 24, 2008 , Blogger Foxfier said...

I've sent this off to my family.

 
At March 24, 2008 , Blogger T E Fine said...

People are being mistakenly lead to believe that by terminating a pregnancy they're "saving" the baby from later, undue trouble. Here's my issue - any number of these kids that are alive have happy, productive lives and add a lot to their families. But folks who get screened are being told how there's no hope, yadda yadda. So I'm thinking parents should also be warned that society at large may have it in for their kids - how many doctors are counciling "theraputic" abortion because they're thinking about the kid's future hardships and how many are thinking about the financial drain these kids might end up being?

Nobody should ever have to come second place to a dollar.

 
At March 25, 2008 , Blogger Wesley J. Smith said...

This lengthy response from a reader on the front lines:

"Thank you for the excellent article "Politically Correct Eugenics." It correctly labels what will occur as a result of the universal offering of prenatal screening and diagnostic testing: the reduction of babies born with Down syndrome with each succeeding generation. That is unless more informed decisions are made. The testing itself is value-neutral, with mothers saying they appreciated having a prenatal result so that they could prepare and those who found out post-natally saying they wish they had known sooner. Unfortunately, too often those prenatal results are delivered with outdated and negative information with doctors, staff, and family members encouraging termination due to ignorant views of what having Down syndrome means today. Contrary to how some would characterize the Kennedy-Brownback "Prenatally & Postnatally Diagnosed Condition Awareness Act" as being simply a "pro-life" bill, Mr. Smith rightly noted that Kennedy's co-sponsorship should guarantee that it truly is an "pro-Informed Decision" bill.

Mr. Smith quoted accurately the provisions to increase the quality and accuracy of information that expectant parents should receive with a prenatal result for Down syndrome. If I may share further, critical parts of that information should be referral to local support organizations and information about adoption.

Studies have shown that mothers receiving a pre- or post-natal diagnosis of Down syndrome value referrals to other parents so that they can learn what it is like raising a child with Down syndrome--this is even in cases where the mother ultimately opts to discontinue her pregnancy. (See M.J. Korenromp et al., Maternal Decision to Terminate Pregnancy in Case of Down Syndrome, OBSTET. & GYNECOL., 121 (2006) (provisionally accepted) available at http://igitur-archive.library.uu.nl/dissertations/2006-0621-200023/c9.pdf (last visited Jan. 4, 2008)). Further, these pregnancies are overwhelmingly wanted pregnancies--hence why the parents seek early prenatal care. If the parents do not think they can raise a child with Down syndrome, they should know that there are over 200 families waiting to adopt a child with Down syndrome. For an excellent referral source, parents can simply visit one website: www.dsagc.com. This is for the Down Syndrome Association of Greater Cincinnati; it has an excellent online video for expectant parents and DSAGC maintains the national registry for parents wanting to adopt a child with Down syndrome."

 

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