“State-of-the-Art Prenatal Testing” – A Eugenic Wolf in Sheep’s Clothing

Thank you to my husband, Ben, for writing this post.  

EUGENICS: “a science that deals with the improvement (as by control of human mating) of hereditary qualities of a race or breed.”  [Merriam-Webster]

(Eugenics) “The study of human improvement by genetic means. The first thorough exposition of eugenics was made by Francis Galton, who in Hereditary Genius (1869) proposed that a system of arranged marriages between men of distinction and women of wealth would eventually produce a gifted race. The American Eugenics Society, founded in 1926, supported Galton’s theories. U.S. eugenicists also supported restriction on immigration from nations with “inferior” stock, such as Italy, Greece, and countries of Eastern Europe, and argued for the sterilization of insane, retarded, and epileptic citizens. Sterilization laws were passed in more than half the states, and isolated instances of involuntary sterilization continued into the 1970s. The assumptions of eugenicists came under sharp criticism beginning in the 1930s and were discredited after the German Nazis used eugenics to support the extermination of Jews, blacks, and homosexuals.” [Concise Encyclopedia]

I’m sad, but mostly angry, to report that the American Eugenics Society may still be alive and well and actively peddling its beliefs to any vulnerable mother who will listen.  Today, in a local parenting magazine, I read an “Advertorial” (better known as a paid advertisement masquerading as an editorial) stating that the “American College of Obstetrics and Gynecology recommends that all women presenting for prenatal care in the first or second trimester be offered the option of screening for Down Syndrome.”  Why?  The “advertorial” never addresses this.  If it looks like eugenics and walks like eugenics, it’s probably eugenics.

Instead of going into a 50-page diatribe, allow me this:  I want to believe that this recommendation from the ACOG is merely a distasteful attempt (we all make mistakes) to help drive revenue in the Maternal-Fetal Clinics of the United States and not a more ominous, poorly cloaked nod to the re-birth of eugenics in America. 

Quite plainly, it leaves me wondering why such a revered institution as the ACOG is permitted to mount a “Search and Destroy” campaign on fetuses with Down syndrome and why the citizens of this country sit back and allow it to happen. (Keep in mind, anyone who has celebrated a birthday was at one time a fetus.)

As the father of four children (two with Down syndrome), I shudder to think of the innocent lives that may be lost to this new testing option.  Aren’t you glad that your mother didn’t concern herself with your genetic code during the nine months prior to your birthday.

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4 responses

  1. Ben, how is this test any different than what has been offered (or in some cases required or at least pushed if considered “old”) for years? Isn’t Down’s Syndrome one of the 3 tested for in that test that has so many false positives? (I didn’t have the test because it had so many false positives, we were already having a level 2 ultrasound, had no desire for an amniocentesis, and felt we would have enough information without the test. Plus, it wouldn’t have affected our decision to have our babies.) Didn’t you know ahead about Beau and Bitty’s Down’s Syndrome? I realize that for many a positive result leads to abortion and the end of life based on fear of raising a child with a disability. But, isn’t it also helpful to know this information prenatally to prepare for any potential concerns at birth or even just for the family to be prepared and celebrate the birth instead of being so afraid at the birth? I ask these questions with humility. I am sure the intent is as you so clearly stated, but I truly want to understand.

    • Rene,
      There is a new blood test, MaterniT21 from the California company Sequenom, that has recently become available. The test checks the fetal DNA present in the mother’s blood for the extra copy of the 21st chromosome that causes Down syndrome. It can be administered as early as 10 weeks into the pregnancy with 99 percent accuracy.
      This test can be done earlier, less invasively and with more accuracy (still <100%) than the "old" test. In other words, one can make the decision to abort earlier when the fetus looks more like a guppie than a human being. (My opinion.)

      Yes, ironically, we did pre-natal testing with Beau and Jane Adeline. Having turned it down for Lillie and Emma Grace, we finally asked the doctor (while pregnant with Beau) why one would want such testing in the first place. He said it would be good to know if the child had any heart issues that might warrant delivery at Chapel Hill or Duke where they'd better prepared for such things. That made sense to us, for that reason alone.

      It would warm my heart to learn that most people opt for pre-natal screening to prepare for life with a disabled child, congenital heart problems or the like. Statistical data, however, suggests that pre-natal testing for Down syndrome yields a termination rate of 90% when certain markers are present. (Some experts say that number is too high.) In any event, it's the most common genetic "defect" in the human race and yet there are only about 400,000 people in the United States living with Down syndrome. That's only about 1/10ths of 1% of the US population. Please tell me I've got this all wrong and why. It would do my heart good.

      Hope you and yours are happy and well.

      Ben Wright

  2. Thanks for the additional information Ben. I wish I could say you have it all wrong, but you are certainly more aware of the statistical data of what happens for people with Down Syndrome than I will ever be. Sometimes I think the more we know, the worse off we are. Yes, it is good to be prepared for potential risks, but at the same time, it seems we sometimes borrow worry. I am sure earlier detection leads to more pregnancies terminated – or gives parents longer to worry! My hope is that women who are given this test will find the support they need while pregnant to make truly informed decisions. Becoming a parent is so frightening for many of us, and the fear of knowingly raising a child with special needs can be overwhelming for even the most open hearted among us.For me, it would not even have been so much the fear of their childhood but of what would happen when my child outlived me. Hopefully knowing children who have Down’s will make it easier for potential parents to think about raising a child with developmental differences. As people become more exposed to the joy, independence and success people with developmental disabilities experience, maybe the fear will lessen and the termination of such births will decrease. Thanks again for sharing the information and for being such a blessing!

  3. Experiencing fear of the unknown is normal for everyone. However, the unknown – and the known – has the potential to open doors for us to learn about ourselves in ways we could never imagine. Being the parent(s) of a child or children with intellectual or physical or developmental disabilities allows a person to think more of someone other than themselves – to live for giving to others. In so doing, it allows that person to become a better person than they ever imagined themselves to be.

    It is a joyful growth for the parent – even if the physical demands, patience and constant concern necessary for their child or children never leaves them. But isn’t that true for parents of children who do not show any outward signs of any kind of disability? It is true; if they take advantage of the opportunity to become the best person and parent they can be.

    There are challenges in raising any child. No child comes into this world with an instruction book on how to raise them to become a contributing member of society; nor do they enter the world with a tag on their toe identifying what they will do or who they will become when they are grown. Once again, therein lies the potential for the parent to become the best of all he or she can be in raising the child.

    It is my opinion that a soul exists from the moment of conception. A fetus has the right to develop into a human being. It is also my belief that every human being has a right to be born and reside in this imperfect world for as long or as short a period of time as their life allows.

    I wonder if the American Eugenics Society knows – or cares – that Leonardo da Vinci was born of an Italian mother and father. His mother was a peasant; his father was a notary public. They were not married. So Leonardo was an illegitimate Italian born of lower class people. Oh, the horror, the shame. Perhaps such a baby should be smothered at birth!

    Or what if the American Eugenics Society could have stepped in to ‘help’ the parents of Helen Keller? I rest my case.

    It is a foolish notion to try to create the perfect human being. Such does not exist – except for a 33 year period about 2,012 years ago. And even He was abnormal.

    Becoming a parent allows a person to learn to be selfless and to develop courage. Everyone could use a healthy dose of both of these qualities.

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