Sunday, February 28, 2010

The New Eugenics

Girl with Turner syndrome from Learn Genetics

I personally know someone who aborted her baby at 24 weeks gestation because her baby was diagnosed with Turner Syndrome.

Occurring in 1 out of every 2500 girls, the syndrome manifests itself in a number of ways. There are characteristic physical abnormalities, such as short stature, swelling, broad chest, low hairline, low-set ears, and webbed necks.[3] Girls with Turner syndrome typically experience gonadal dysfunction (non-working ovaries), which results in amenorrhea (absence of menstrual cycle) and sterility. Concurrent health concerns are also frequently present, including congenital heart disease, hypothyroidism (reduced hormone secretion by the thyroid), diabetes, vision problems, hearing concerns, and many autoimmune diseases.[4] Finally, a specific pattern of cognitive deficits is often observed, with particular difficulties in visuospatial, mathematical, and memory areas.- Wikipedia

She was told that her baby would have severe physical problems and, when tests revealed that her baby had a congenital heart defect amongst the other Turner symptoms, she elected to have an abortion. She has since come to realise that this baby was viable and that she could have helped this child to have a fulfilling life, and she deeply regrets her abortion. She is no longer able to have children.

We also had a neighbour whose daughter had a set of twins, one of whom has Turner syndrome. This little girl is a smart youngster who can hold her own in her classroom. When teased by another child about her height, she quipped back "but I am smarter than you". We also often sit behind a woman in church who has Turner syndrome.

The sad truth is that most women who have genetic testing during pregnancy will opt for abortion if the child has a genetic defect. Notwithstanding that much of this testing can give false results, we must face the fact that this is actually eugenics.

This week, on Mercator Net, Mark Mostert has written an article called The Disappearing Disabled. Mark opens with the statement: "Dread genetic diseases are disappearing -- because parents and doctors are eliminating the children who have them."

Read the article here

When I was pregnant with my third child, I was thirty-five and had a history of miscarriage; so I was in the "high risk" category for pregnancy. I was fortunate to have a very pro-life doctor who refused do conduct amniocentesis on his patients because he said "amniocentesis means that you are considering abortion, and I will not refer for abortion". Although worry about having a child with some abnormality was really not on my mind, this doctor told me that I could choose to think I was the one person out of 100 who would have a disabled child, or I could choose to think that I was one of the 99 who would have a perfectly normal child. I can honestly say that it was never a concern for me, I was free from that particular worry. And although other things worried me, having a child with special needs was not one of them.

Now, 24 years later, having amniocentesis seems to be par for the course. Women are referred for genetic testing if they are of a certain age or if they have had a history of difficult pregnancy. And now, some doctors are recommending testing for all women for Down syndrome children, so that these children can be eliminated before birth. Ever wonder why you don't see many so-called "retarded" children anymore (I know that is not politically correct)? 90% of pregnancies where Down syndrome is suspected are terminated.

In the fall, the university students hold Shinerama week, where they raise money for children with cystic fibrosis. Guess why there are fewer people with cystic fibrosis around these days? Yup, not because of advances in the treatment of the disease, but because genetic testing of women results in the aborting of children who have the disease.

Any allusion to present day biomedical practices as being eugenic usually leads to quite hysterical denials and the accusation that one sees everything one disagrees with as being painted with the inappropriate Nazi brush... The prevailing zeitgeist holds that eugenics was a terrible thing in a time gone by. It doesn’t happen any more. We learned from our collective social mistakes... Eugenics is now called preventive medicine.

As increasing numbers of women undergo prenatal testing at the behest of their physicians, genetic counselors, and medical organizations, more and more unborn children with genetic anomalies are being detected. The result? A genetic sorting that makes some unborn children (and human embryos) second-class citizens fit only for death. - Mark Mostert, The Disappearing Disabled, Mercator Net, Feb 25, 2010

What are we becoming? A world of people who will only accept those who are deemed worthy to live, a world of people who are not willing to care for those who have "special needs", a world of people who will not welcome someone who is considered "genetically inferior".

With this change in our attitude, what we will also see is a loss of compassion. We are becoming a people who don't have time for those who need extra care; we abort those who won't measure up to the perfect standard and we will soon legally eliminate those at the other end of the age spectrum who demand too much from us as well.


lifeandrhythm said...

I loved this post, sort of the same topic, but from a different perspective.

I love this part best: Its enough to make me want to reply to the next person that says "as long as its healthy", "and even if it isn't".

Elena said...

None of my doctors have ever raised the question of prenatal testing with us. Both have said the exact same thing: "You don't do that, do you." They obviously know where we sit. I wouldn't want to have it even just "to know". Like that mom who had the down syndrome daughter, knowing about a problem would probably cause me to put up walls and not bond as I should.

BabyBoy1203 said...

Without having any information whatsoever on my medical history, religious beliefs and personal convictions, and despite the fact that I was just barely 24 years old, that I was very healthy, that it was my first pregnancy and that there were no obvious risks, I was asked in the very beginning of my pregnancy if I wanted genetic testing done. Just like that. It was a question that came after casual, normal questions, just out of the blue.

I was appalled. It was my first-ever prenatal visit, yet such an ugly thing was brought up. It sort of spoiled it for a moment, cast a cloud over things. I don't care if it's "the norm" to ask such a question; it made my unborn child seem like "just another," routine. I knew what it implied, I knew what many women would have had in the backs of their minds when asked a similar question, and it offended me to hear my precious unborn baby talked of so lightly in his presence--yes, in his presence. It was a simple question on the outside, but it meant so much more and it bothered me a lot. I was by no means naive about it. My answer was a very firm, "No, absolutely not," and that was the end of it, yet I was bothered. If women want to ask such a question themselves, fine, but why assume that every woman wants that question asked? I know for a fact that many women do NOT want it asked. We just want to enjoy our babies--healthy or not.

Thankfully, I made the best decision of my pregnancy and turned to two incredible midwives--who greatly respected my beliefs--to help me give birth at home, and that was the end of any such discussion!