Wednesday, 3 August 2011

Protecting Babies with Down Syndrome

Looking at blogs the other day, I found one that talked about a shocking issue that I'd never heard of: genetic discrimination relating to babies with Down's Syndrome. (Be warned; the video is heartbreaking).

"The Poppies" is a British blog, so I went searching to see if I could find research about similar medical attitudes in North America. I think that really I was shocked and wanted some research from a social scientist about whether *our* doctors actually felt it was appropriate to automatically put DNRs on babies with Down Syndrome with health problems, or not tell parents of babies with Down Syndrome about treatments that could help with these problems, or refuse to do life-saving surgeries on babies with Down Syndrome.

Just Bringing up Eugenics is Distasteful

My first find was this treatise presenting arguments for and against eugenics and Down Syndrome. It appears to be serious.  I know that it's  arguing *for* the the fact that we should let people with Down Syndrome live *rolls eyes*.  However, the fact that the medical community needs to even have the discussion at all made me feel sick to my stomach as I read this "proclamation" that it's indeed okay to keep people with Down's Syndrome around.

Genetic Discrimination in France

I pressed on. I found a study from France that indicated that "in some instances parents or professionals feel justified on one hand in not providing DS children with the necessary care and on the other hand to transfer their responsibilities to the public health system."

High Abortion Rates for Fetuses with Down Syndrome in the US and Britain

And, finally, I found a fact sheet (with a pro-life bias) expressing concern about very high abortion rates for fetuses diagnosed prenatally with Down's Syndrome in both the US and Britain, and about what doctors said and did that made the women decide to abort or carry the pregnancy to term. Apparently many women feel pressured by doctors to end the pregnancy after a prenatal Down's Syndrome diagnosis.

Attitudes Toward Infants with Down Syndrome Need to Change

Like I said - I had no idea this was happening. I know it's not happening with all doctors. When my best friend was offered the special testing to detect Down Syndrome in her kids, her doctor said, "If it doesn't make a difference to you, then there's no need to do it," so  they didn't. I've been to plenty of doctors with people with a variety of disabilities, all of whom were treated with respect and compassion (and I watch very carefully).

But it seems that genetic discrimination *is* happening to babies with Down Syndrome, and that needs to be changed. I thought that we were over the idea of evaluating people on the basis of whether or not it looked like they were going to live a "productive" life or be "burdens" to people because of their health conditions...and I never knew that doctors had some sort of crystal ball, that they could determine what a person's future was going to be, whether or not they could make a contribution to the world, or whose lives they could touch in a positive way.

I'm still kind of processing this, and figuring out what I'd like to with it. I'd like to hear your comments.

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