Monday, September 19, 2011

Defective: Designer Genes and Designer Babies

I try not to write about my political views or religious beliefs and yet I feel that I can no longer keep my thoughts quiet. This is not a discussion about being pro-life or pro-choice so please do not use my comments section as a means to argue such an explosive topic. This is a post about fear.  Pure, unadulterated fear for the future treatment of my child.  My daughter.  My Ellie.  Plus all of the other people who are deemed by some as "less than worthy".

Approximately 1 out of 700 infants are born with Down syndrome.  That means there are several individuals gracing our world with that extra special 21st chromosome and that is not just in the United States.  Down syndrome unites us in that it crosses all cultural boundaries and ethnicities.

Some infants are diagnosed* within the womb and some babies post-natally.  Some mothers had genetic testing and others did not.  Approximately 3 in 100 pregnant women are told that they are at a higher risk in carrying a child with Ds.  These woman are then told to have more extensive and riskier testing that results in 1 to 2 miscarriages per 100 women.  Yet with the 1 in 700 people statistic, that is more than 400,000 people in the United States alone!

Testing is never 100% accurate and the same goes for this new blood test that looks for Down syndrome and Down syndrome only.  True, it is more accurate.  True, it is safer.  True, it can determine if a baby has Ds early on--at ~98% accuracy.  Or more importantly, that it is 2% incorrect or in terms of people-2 infants out of 100 do not have Trisomy 21 even though they were prenatally diagnosed as potentially having Ds.  TWO infants out of 100.  I fully recognize that not every mother carrying a child with Ds will abort.  I recognize that many parents just want to be informed and "know ahead of time" to prepare.  I also fully recognize that abortion is a legal choice in the United States.  I also know that many families do decide to abort fetuses who have a high risk for chromosomal abnormalities.   I also know that many studies show that parents are not given enough support or correct, up-to-date information to make an informed decision about possibly raising a child with Ds.

I have been trying to tell myself that this test is not about "making a perfect race".  Although in the very first paragraph of the Contra Costa Times article, the author refers to this new test as  "raising the prospect, and perhaps peril, of a world with fewer imperfections."  Does that sound familiar?  Like Hitler.  I want to know where the line is drawn.  I want to know why all of this money is going into more and more testing rather than into social programs, medical care, and education.

This test targets Ds specifically.  What about other disorders?  What about other syndromes? What about braces?  What about personality traits?   What about having curly red hair? What about the possibility of maybe, possibly, perhaps, plausibly, likely, feasibly having depression later in life (I might not be here!)?

Is this genocide?  The definition of genocide according to google.com  & Wikipedia is "The deliberate killing of a large group of people, especially those of a particular ethnic group or nation"or "the systematic killing of substantial numbers of people on the basis of ethnicity, religious, political opinion, social status, or other particularity; Acts committed with the intent to destroy, in whole or in part."

I am scared.

I am scared that Ellie will be one of a few instead of the one in 700 hundred.

I am scared that less funds and less research will go towards programs for people with different abilities, and not just those with Ds.

I am scared that many woman will not receive proper counseling and will therefore make uninformed decisions about such a monumental part of their lives.

I am scared that insurance companies might have greater control over our medical decisions and life decisions especially when it comes to bringing in children who are "defective" into this world.

I am scared that we have crossed that ethical line of tinkering with humans.


My blond hair, blue-eyed daughter.  Would Hitler have approved?  No, for she has 47 chromosomes.


*I use the word "diagnose" loosely here since the current tests discuss the results in terms of "risk ratios".  Such as you have a 1 in 20 risk of carrying a child with Down syndrome.  A true diagnosis comes after birth when the child's blood is drawn, sent to a special lab, and a karotype performed to map out the infant's chromosomes.


References:
Chiu, R., Akolekar, R, Zheng, Y, et al. (2011) Non-invasive Prenatal Assessment of Trisomy 21 by Multiplexed Maternal Plasma DNA Sequencing.  British Medical Journal 2011; 342

National Down Syndrome Association of Central Texas. (2011) viewed at http://www.ndss.org/

Krieger, L. (September 2011). New Prenatal Blood Tests Developed at Stanford Can Check Fetal DNA, Raising Ethical Questions. Contra Costa Times. viewed at http://www.contracostatimes.com/news/ci_18868877 on 9/19/2011

Simpson, Barabara. (September 2011). Hitler Would Love It. WorldNetDaily. viewd at http://www.wnd.com/index.php?fa=PAGE.view&pageId=346093 on 9/19/2011
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7 comments:

  1. This whole topic scares me as well! I think I am just going to pray pray pray and share as much as I can about this and our kids!

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  2. This is why we need to shout! we need to shout to all that do not know about how wonderful our children are regardless of extra, deleted or realigned chromosomes! what are we using as our measuring stick for worthwhile? the ability to achieve the high powered job, the fast car. the big house...the material yardstick. or perhaps the slimmest, the most fashionable the ost beautiful as defined by celbrity and magazines...the skin deep yardstick! well what about the ability to love to see wonder and magic, to achieve personal bests wherever they may fall on the scale of 'normal'. This worlds obsession withmythical normal is terrifying and isolating forthose who do not fit,for beautiful ellie for my gorgeous tilly! people need to open their eyesand realsise their view hasbeen blinkered by normal and life is so uch richer than they ever imagined! anna to you and every other other blogging about the magic of our extra special children i giveahuge shout of well-done to. people need to stop being sadfor us, to stop saying,'oh what a shame', tostop asking how our children are with a sad tone and iclined pitying face!my childrenareawesome, all of themand normal is a myth! i LOVE MY LIFE!! lets kick the butt of any future that deems it tragic and in need of arradication! choice is one thing but unbalanced viewpoints and advice in a world where the majority have no idea of the magic of our lives is something totally different! uninformed choices in a blinkered world are the only thing that should be iradicated! Lovethis postxxx

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  3. There is so much about this that is so wrong and so scary. This isn't just about our kids anymore, although the current test does seemingly single them out. This is about playing God, mother nature, fate or whatever it is each person believes in. This is about the elimination of millions of people for small, tiny "defects". I am not sure I know anyone who would qualify as perfectly made and perfectly healthy. Honestly, where will it stop? Cancer? Depression? Obesity? I have psoriatic arthritis which some day could render me disabled...should I have been terminated? Oh it just scares me. The potential that this opens the door for is unimaginable.:-(

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  4. Spot on dear friends. This is a scary time. We are tinkering with the natural order of things. What will come next? I am terrified.

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  5. I'm right there with you on this, Anna. And when you think about what's going on in Denmark, where they're *specifically* trying to end the incidence of Ds? Now THAT's scary. I'm hoping that our children, with all of the supports and opportunities available to them, will change more minds, stop these tests from being used for the *wrong* reasons.

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  6. We have to keep praying and keep telling everyone we know how precious our children are....extra chromosome or not.

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  7. Oh, how this scares me too! I get mad there is a test that specifically targets Down Syndrome...it makes me wonder if people really think it's that bad...WOW, it shocks me!

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