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    Down syndrome - new prenatal tests

    I just read a story that in a few years you will be able to do a simple blood test to see if your unborn child has down syndrome. (they can currently tell with a more invasive test) Does this scare anyone? I know it can be used for good reasons like getting ready to take care of a DS child but I'm worried that it will lead to all the DS kids to be aborted. Do we live in a society that would prevent the birth of imperfect children? Is this an attack on disabled people as not being worthy of living?

    #2
    i believe i read quite some time ago most down syndrome babies are aborted. the tests are routine. i refused all tests, but in CA in 1992, it was mandatory for me to have blood test. mandatory. yes. the blood test isn't new.

    this is an attack on disabled ppl. it is also highly misleading. i know a few moms who were told their fetus was "defective" and they gave birth to healthy babies.

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      #3
      I would have refused it if offered. Just my choice.

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        #4
        to counter this, there is a new surgery that an be done to correct the spinal cord of fetuses with spina bifida in utero. they showed that while the child still is disabled when born, they have less of the medical problems and most do not require a shunt etc. i find this a win for the disabled community as while by no means is it a cure, u know that a disabled child will have less trips to the hospital and less scary surgeries.
        "Smells like death in a bucket of chicken!"
        http://www.elportavoz.com/

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          #5
          Originally posted by crypticgimp View Post
          to counter this, there is a new surgery that an be done to correct the spinal cord of fetuses with spina bifida in utero. they showed that while the child still is disabled when born, they have less of the medical problems and most do not require a shunt etc. i find this a win for the disabled community as while by no means is it a cure, u know that a disabled child will have less trips to the hospital and less scary surgeries.
          You have a great point there CG. I had ultrasounds etc.
          It is the testing for Downs Syndrome that bother me.
          An ethical question I don't have an answer to.
          Last edited by LindaT; 13 Mar 2011, 6:32 PM. Reason: spell

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            #6
            I had a very similar discussion with my mother a few years back, when it was announced on the radio that a hospital in Amsterdam had decided to stop using life-saving measures (like artificial ventilation) on babies born more than fourteen weeks premature. I was born twelve weeks premature myself, and I had a difficult first six weeks or so, which I would probably not have survived without medical intervention. A brain bleed during those first few weeks left me with cerebral palsy, but -- and here comes the clincher -- the effects of that condition are relatively mild in my case, and certainly a lot milder than the first neurologist who looked at my brain scan predicted.

            Given all that, it will probably surprise all of you that my mother's first reaction to the news about the Amsterdam decision was the she understood why it was made. She said that if the doctors had left all the choices up to her (which, twenty-five years ago, they often didn't), she would probably have told them to only let me live if I could do it on my own.

            I was a child whose adult life supposedly should have been rather bleak. Not only should my physical disability have been much worse, I should also have been mentally disabled. Instead, I am a college graduate living an independent life. So of course, the idea that any parent might decide that keeping their child alive is not worth it, just because some diagnostic test predicts a disability, well ... it pisses me off royally. Because, let's face it, medical 'miracles' happen every day; and even those of us who do end up with what would be considered a severe disability (and I do think Down's Syndrome counts) often have tons of potential.

            At the same time, perhaps out of respect for my own mother, I would like to ask for some empathy with those (future) parents who do decide that taking care of a severely disabled child will be too much for them. I personally do not believe society is better off forcing children to be born into families that either just don't want them, or do not feel capable of raising them in an appropriate manner. Yes, there is adoption, and yes, there is the foster care system if all else fails, but I think we all know that both are highly imperfect solutions, especially for children with special needs.

            So, do I think it's OK to make it easy for a (prospective) mother to end her pregnancy and/or make some other life-ending decision when her child is somehow 'imperfect'? Absolutely not. But do I understand why some people do it anyway? Yes, I think so.

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              #7
              If there's anything the wonderful world of severe disability has taught me, it's how heavily the burden of care falls on families, and in most cases, on moms in particular. Maybe if there was an abundance of social resources and support it would be less of a gut-wrenching issue, but I cannot begrudge any woman who chooses not to become a lifelong, 24/7 caregiver.

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                #8
                In jurisdictions where abortion is legal, I don't see how terminating a pregnancy based on the results of genetic testing is different from any other reason a woman makes that choice. Personally I think it's up to the biological parents to decide if they want to bring what may be a severely disabled child into the world or not, as they are the ones who are ultimately responsible for that child's wellbeing.

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                  #9
                  You're right, orangejello. There's no difference. If abortion is legal, that implies the parents can always choose to terminate the pregnancy, no matter what the reason.

                  That being said, there's an extra dimension in play when we are talking about a child with a known genetic defect. The fact that the child has this defect (in this case, Down's Syndrome) might prompt some people to abort a pregnancy they wouldn't otherwise have aborted.

                  So the question then becomes: is it ethical to make it 'trivial' for parents to find out whether or not their child has a genetic defect before it's born.

                  I think there's a compelling argument to be made on both sides of the issue.

                  Some people would say that it is, indeed, ethical. Forcing someone to raise a severely disabled child when they don't have the proper resources to do so could very well cause undue harm to both the parent(s) and the child. In the long run, it may also harm society: the parents become less productive, because more of their energy goes to caring for the child, compared to raising a non-disabled child. The child might never become a productive member of society at all, especially when on top of the challenges posed by his/her disability, he or she also has to deal with the effects of emotional scarring caused by inadequate parenting, which in itself might (or might not) create a new layer of disability.

                  Others might say that no, it is not ethical, because if a child's genetic profile can easily be determined before birth, and some parents base their decision of whether or not to keep the child solely on that genetic profile, then children with an imperfect genetic profile are effectively considered a 'lesser' class of human beings. This is obviously harmful to severely disabled children and the parents who chose to keep them. But it's also harmful to society because of the danger of a slippery slope. If it's acceptable now to 'pre-select' on the basis of known genetic 'disorders', will it be acceptable for the next generation to 'pre-select' on the basis of IQ, or height, or musical/athletic/fill in the blank abilities?

                  It's a difficult matter, and I don't think we can hide behind the law. But ultimately, it's a personal choice, and I think we shouldn't judge people for making the choice either way.

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                    #10
                    Originally posted by LindaT View Post
                    I would have refused it if offered. Just my choice.
                    All very good points. And I'm quoting myself here, I would refused it if offered, if had been a choice.

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                      #11
                      Originally posted by Saranoya View Post
                      You're right, orangejello. There's no difference. If abortion is legal, that implies the parents can always choose to terminate the pregnancy, no matter what the reason.

                      That being said, there's an extra dimension in play when we are talking about a child with a known genetic defect. The fact that the child has this defect (in this case, Down's Syndrome) might prompt some people to abort a pregnancy they wouldn't otherwise have aborted.

                      So the question then becomes: is it ethical to make it 'trivial' for parents to find out whether or not their child has a genetic defect before it's born.
                      It is problematic to use the word "trivial" when it comes to genetic testing. I suspect any parent undergoing genetic testing does so with a great deal of turmoil about the potential results. I honestly don't see that making the genetic testing easier to obtain or less invasive physically is going to change the emotional toll it extracts both in terms of just undergoing testing and in making a decision to terminate the pregnancy or not. It's true that easier testing will probably encourage more people to have it done. But personally I believe parents should have a say in whether they feel equipped emotionally and otherwise to go ahead a pregnancy of a disabled child. I would never judge somebody for deciding to terminate.
                      Last edited by orangejello; 13 Mar 2011, 7:24 PM.

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                        #12
                        As somebody who has Spina Bifida I would support my brother and sister in law in a decision either way. Me having Spina Bifida puts them at a higher risk for having a child with a neural tube defect.

                        I'm all for testing, if the testing comes back less then favourable it gives the parents and medical staff more time to discuss options and be prepared unlike when I was born there was no ultrasounds or any other testing.

                        I think I might have been more on edge then his parents until all the tests and ultrasound results came back fine. They have a healthy happy almost two years old baby boy.
                        Formerly Canuck but lost my password and changed e-mails because of a move.

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                          #13
                          We are talking about human life here, not whether parents "feel" equipped to deal with it. No one "feels" equipped - you rise to the challenge. If anyone asked anyone here before injury if they felt equipped to hand it the answer might have been no. I think think this world is going to get difficult for disabled people. Oh wait there might not be any left if we abort them all. Then this world will be a great place for all the perfect people.

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                            #14
                            I know this will be weird but I just got my old Canuck account back, the point I was making is that I think that knowing ahead of time allows for a better outcome, not only with the pyschological adjustment for the parents but it also also for better care for the baby, instead of the "we have a problem" at the time of birth that was experienced in my mothers era, todays knowledge in my brothers era would have allowed for the option of in utero surgery to just having the Neurosurgeon & O.R. ready to go close the babies back right at the delivery instead of a unprepared mad scramble to organise things and make decisions.

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                              #15
                              Originally posted by Kris View Post
                              We are talking about human life here, not whether parents "feel" equipped to deal with it. No one "feels" equipped - you rise to the challenge. If anyone asked anyone here before injury if they felt equipped to hand it the answer might have been no. I think think this world is going to get difficult for disabled people. Oh wait there might not be any left if we abort them all. Then this world will be a great place for all the perfect people.
                              If we are talking about an embryo within the age range where abortion is legally allowed, your own personal definition of "human life" is not really relevant to somebody making the choice to maintain or terminate a pregnancy.

                              I am not advocating that women abort fetuses with disabilities. But I do support their right to make that choice.

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