Friday, December 2, 2011

Are Kids with Down Syndrome on the Road to Extinction?

We've just finished hearing about human genetic disorders. For most of these there is actually minimal treatment options and only support groups for parents. Here's an interesting article on one of the most common genetic disorders - Are Kids With Down Syndrome on the Road to Extinction?
What are your thoughts?
Please post by class on Monday, December 5th.

25 comments:

  1. I thought the article did a good job in portraying both the good and the bad of Down's syndrome and of the new early testing. The vast majority of parents who have Down's syndrome babies seem to love their children unconditionally, but at the same time these same parents report that they cried for months after the baby's birth. They report that they feel the baby made them a better person, but at the same time state that had they found out earlier they might have ended it then. It's this duality that really makes the topic interesting, and understandable that with the advent of 10-week testing such a huge percentage of potential Down's syndrome mothers are choosing to terminate the pregnancy. However, it seems sad that with this foreseen decrease in Down's syndrome births, current parents have to worry about whether there will continue to be an infrastructure to support their children and recognize them as contributing members of society. When I read the title of the article, I thought the word "Extinct" seemed overblown but now it seems like a real possibility. I guess I agree that there should be a choice given to parents, but it seems like a given that eventually that will drive out all hope for helping people with Down's syndrome, and that strikes me as unfortunate.

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  2. I agree with Kiril that this article offers both sides of the issue. Personally, I think that genetic testing for Down's Syndrome is necessary and beneficial for the parents. Yes, of course most of the parents (99%) love their children who have Down's, but that is in a way expected. What the genetic test does is provide parents who are unable or not ready to raise a child with a disorder like Down's with the ability to make a decision about their future. Down's Syndrome doesn't only change the lives of the parents, for the children require a lot of attention and special accommodations, but it also influences the afflicted person's life. Do those with Down's Syndrome really have a happy life or live life to their utmost potential? I don't know the answer to this question, but I think it's important to consider the children's future as well. Will they always rely on someone else or will they be able to live on their own? Despite my personal views, I definitely never thought about the decrease in babies born with Down's Syndrome as affecting others already living with it. The article really provided me with a new perspective about the social support and infrastructure that would decrease and maybe even disappear if fewer people had Down's Syndrome. Although this makes sense to me, I feel like there are many other chromosomal disorders and genetic mutations that do not have such an established prominence in society, (this might be crossing the line) yet they are not advocating for more afflicted children to be born in order to advance their infrastructure and support services. I think that the decrease in Down's Syndrome social resources is not a strong enough reason to not allow the parents the choice about their futures.

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  3. The issue presented in the article is very interesting, and it is intriguing how such technological advancements are able to create these ethical issues. However, I’m not really sure how I feel about the test. Having a child with a condition like Down syndrome would inevitably be a challenge for a family and it should be the parents’ choice to decide what would be best for their family. I understand how expectant mothers would be curious about their unborn children and I am definitely pro-choice, but I think that if someone wants to have a child, they shouldn’t try to decide what the child will be like. I think that the ability to discover the genetic makeup of their babies is just going to create more ethical dilemmas.

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  4. The fact that many mothers who love their kids with Down Syndrome but still aren't sure what they would have done had they known at 10 weeks is very interesting. It seems to show that people realize that having a child with Down Syndrome can make them a more accepting and person, yet at the same time they think that all the emotional trauma they went through might not have been worth it. At such an early stage of pregnancy, mothers appear to not be as attached emotionally to the baby as in later stages, and they feel that simply starting over and trying again is an easier route than dealing with a child with Down Syndrome

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  5. The ethical issues produced by the technological advancements and discoveries discussed in the articles are issues that require marinating in. Because I am not and have never been an expectant mother, it is impossible for me to know how I would react to this test or even to the possibility of giving birth to a child with Down Syndrome. It is common knowledge that parents of children with Down Syndrome face challenges unlike those of parents with "normal" children --harder challenges and challenges that test one's emotions, love, and patience. I think it is more important, though, to consider the rights of the children more than the rights of expectant parents. I know this belief is very controversial, but I don't think parents deserve the choice of aborting a child with Down Syndrome, or any child for that matter. Some say that having the ability to abort a child is a good idea for those who cannot handle raising a child with Down Syndrome or for those who fear they'll face emotional trauma, but I think these reasons are a bit inconsiderate to the children already being developed in the womb. It's not fair to not give any child the opportunity to live in and experience this world. Children don't have a choice in their physical appearances or even the characteristics they're going to develop as they grow older, so why should parents have option to select which kind of child they would like to raise? With that said, I agree with Saehee's belief that if parents want a child, they shouldn't be able to select which child physically suits their expectations.

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  6. This article raises some interesting questions how to behave ethically in a world which is so dependent on technology. While the article is generally neutral, I think that the part about if Down Syndrome children can contribute to humanity is not. I don't think that the question we should be asking ourselves is whether children with Down Syndrome proactively contribute to society, but rather if they contribute to the lives of those around them. The article cites some impressive statistics - that 99% of parents love their Down Syndrome children and 88% of children with Down Syndrome consider themselves happy. While I understand that it is probably immensely overwhelming to receive news that your child has Down Syndrome before you have given birth, I believe that most parents will find themselves loving their child for their differences no matter what. That being said, parents who are young, inexperienced, or do not have the financial capacity to raise a child with special needs should probably reconsider having the child. Everyone's personal situation is different, so it's difficult to judge on a broader scale. However, it does make sense that if people pick and choose their children's qualities to this extent, research for those with Down Syndrome will decrease because there aren't as many people living with the disorder. I hope we can keep up momentum for further research and continue to spread awareness that Down Syndrome children are still remarkable, loving members of society.

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  7. While I think that the question of whether or not children with Down's Syndrome are on their way to extinction or not is an interesting one, I also don't really think it's answerable...yet anyway. The article does mention that many mothers said they may have ended their pregnancy earlier if they had found out their child had Down's Syndrome. But by the same token, almost all of the parents of children with Down's Syndrome said they loved their kids. I think one aspect that needs to be focused on while assessing the question of whether Down's Syndrome kids will become extinct is how many mothers would actually abort a pregnancy in which their child would have Down's Syndrome, assuming all the mothers found out within 10 or so weeks. And I don't see a good answer to that question, the test is completely subjective, some people may want to take it, other may not. It depends totally on the parents themselves, and what they want out of the child/pregnancy. I believe that this issue is the one that needs to be assessed most if one wants to answer the question of whether children with Down's Syndrome will become "extinct."

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  8. So I can't really answer the question here because it's a far complex question. However, based on the article it really is up to the parents to decide the fate of the child. If the woman does take the test and finds out that she does have a child that will have down syndrome, it really is up to the her and her partner whether they accept the fact that their child has a genetic disorder or decide to not have the baby. This issue can get a little complicated if you involve religion but I thought this was really cool. Technology is forever expanding and I think it is great how women can figure out if their baby has down syndrome or not but in my opinion I would just wait until the baby is born to figure out if my baby has down syndrome. It's great news to know that there are parents out there that love their children for who they are.

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  9. After reading the article I felt like the article was not neutral on where it stood on abortion and was kind of arguing to say that parents should not get an abortion if their child has down syndrome. They used a lot of examples and statistics that helped prove that parents should keep the child and I feel like the information was bias. They didn't really give examples of when things went awry. Though, I agree that the ethical questions raised in the article are very good questions that the parents should think about but parents can't really just think about this in an ethical view point alone. A variety of things makes it hard for a family to raise a child with down syndrome so the family needs to really think about it. With this new technology the family is given more time to think about the decision. I agree that finding out so early keeps the parents disconnected with the child, thus making it easier to "terminate" the child, but I don't think it's a bad thing, I think it would help the parents not get emotional so they think practically and won't let their emotions lead them to make the wrong decision. Many argue that getting an abortion is like killing/taking away a life. However, I believe that it's better to get an abortion, if the family isn't ready to raise a child with Down syndrome, than to have the child live in a home where they aren't happy and cherished the way they should be. Raising a child with down syndrome takes a lot of effort and not every family is compatible with or capable of raising the child.

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  10. I really don't like the idea of these prenatal tests. I think if parents learn about a disability before birth they will probably be more likely to terminate the pregnancy, simply because they haven't had the experience of raising their child yet; they have no idea how they'd eventually feel about the child or what it would feel like to raise him/her. The large majority (99%) of families whose children were diagnosed with Down Syndrome after birth say that they grew to love and appreciate their child. In my opinion, any parent who doesn't love their child because of some uncontrollable imperfection really shouldn't deserve to be a parent. But then that raises another question: Would it be better for the child in question not to be born if they are simply going to grow up as a "burden" to their household? While I could never see myself giving up a child because it had some sort of disability, in the end it's really about what's best for the child. I agree with Elsa -- if young, inexperienced parents or parents with financial difficulties feel they can't fully provide for a child born with a disability, it could potentially benefit both the child and the parents in question to either terminate the pregnancy or consider adoption.

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  11. The article seemed to provide a lot of information for both sides of whether or not parents should get the test and what decision to make if their child is tested to have Down Syndrome. While I do do believe that having this test done can have both positive and negative affects on the parents, depending on the test results and their feelings towards an abortion, I believe that the nature of the test itself will continue to prevent many expecting mothers to under go the test. Due to the slight, but still existent, possibility of a miscarriage from undergoing the test, I can see how mothers would not want to undergo the test at all. Though, I believe that knowledge about the child having Down Syndrome could be very beneficiary for parents so that they are able to come to terms with the situation before the pregnancy, rather than having to face an unexpected surprise. As Crystal stated, this is a very complex issue which deals with so many factors that it is quite impossible to fully express one's feelings on all aspects of the matter. Personally, I do not feel that Down Syndrome will become "extinct" because despite the initial shock that comes to parents upon discovering that their child has Down Syndrome, I believe that many of them will not go on to "terminate" the pregnancy.

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  12. It's an interesting article, but not really that surprising of one. Of course prospective mothers that discover their child has down syndrome will usually abort. I mean, honestly I would. Having a child with Down Syndrome is extremely taxing both emotionally and physically. So I think that it's a good test and most parents should use it, even if it's against their beliefs to abort it's good to know what they're getting into. Even though most parents grew to love their child, this too isn't surprising to me. And although I'm sure I'd grow to love and appreciate my child, I'd prefer to have one without a disability.

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  13. I think that mothers who chose to abort their pregnancies after learning that their children have down syndrome have a very justified concern. However, my belief is that most parents will come to love their children regardless of whether they are severely mentally retarded or not. I believe that mothers have the right to choose to abort their children, but I don't think that they should do so if they are merely afraid to have to raise a mentally retarded child. Rather, they should only do so if the pregnancy was unintentional and they are unprepared to raise any child. Then there is the question of whether a child with down syndrome can live a fulfilling life, and if it is right to let a child go through the pain of severe mental retardation. However, my belief is that children with down syndrome can lead very fulfilling lives; we imagine that they don't just because they are so different from the rest of us.

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  14. This isn't a very surprising article, but it is interesting. It is understandable that 90% of people with Down Syndrome fetuses will end the pregnancy. It's also understandable that parents would love their children no matter what. If I had a child who had Down Syndrome, I don't think that would alter my love for him/her. I believe that it is the choice of the parents to abort or not; their choice whether or not to deal with the initial emotional problems they may feel. Also, it matters on their opinions on abortion.
    Personally, I would choose to raise a child without a disability. My main concern with raising a child with a disability is their well-being if no one is there to raise them. What if I die in an accident, who will be there to give special care to my child.

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  15. This article is very intriguing in how it portrays the affect of advancing medical technology on the social level. You can connect to a lot of the problematic issues that we have such as euthanasia and of course, abortion, as this is addressing very indirectly. But what is bothersome is that most of these people have chosen that they want a baby and it is obvious that the baby would not be perfect. I definitely think that people should be happy with the children they have and not take out the opportunity to have such a child. Maybe eventually people could be on their way to developing a treatment and people who decide not to go on with having their Downs syndrome positive child are only hurting these studies. I think that if someone is ready to raise a child, they should be happy with the child that comes from them.

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  16. It makes sense to me that most women in this day and age would choose to abort their child if they knew it was going to have down syndrome. I know it may be hard to think a future parent could do such a thing to their potential baby but honestly, If I were told my kid was going to be inflicted with down syndrome, I probably wouldn't go through with the birth. It's not a matter of whether i'd love the child or not, it's a matter of how well off the life of my baby would be. I don't know if i'd be able to give the kid the support it needs. If you were to create a pros and cons list to having a baby with down syndrome, the cons would obviously outweigh the pros.
    I don't think I'd want any prenatal test to see if my kid would be normal. It would just make the whole pregnancy situation a lot more stressful than it needs to be. Even if the test were free I'd rather not know the results of the tests. Knowledge is a poison.

    -Freddy

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  17. It's intriguing because while it seems the logical choice to choose to abort the kid were someone told their child would have down syndrome, I'm not so sure that the facts entirely reflect what would actually happen - it's true that mothers grow close to their children during the pregnancy, and I'm not sure that some could go through with it. While I'm pro-choice, it's still obvious that in any situation getting an abortion would be tough emotionally. Personally, were I to find out my child was to have down syndrome, I would probably go through with the abortion - if I could convince myself to. I'm not so sure that I could. It's hard, but some parents simply can't handle a child with a disability - that's the truth. In that case, the abortion may simply be the only logical course of action.

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  18. I think that tests during pregnancy are fundamentally a good thing, since they give mothers the power to make a decision about whether they're willing go through the hardships of raising a child with down syndrome. Without tests during pregnancy, as the article pointed out, mothers are often caught completely by surprise by the diagnosis of down syndrome, putting enormous emotional strain on them. With safer and more accurate tests, we empower mothers to make informed decisions about whether they are capable of raising and supporting a child with down syndrome, rather than forcing it upon them when the child is born. While many mothers do end up loving their children with down syndrome, it seems wrong to not give them the ability to terminate the pregnancy.

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  19. I think this was an extremely interesting article that really got me to think about both sides of the situation. It's not surprising that with increasing technology and diagnostic tests, there are more moral issues with abortion, etc. However, I think the "right" or understandable decision to whether or not to keep the baby varies with each situation. It's more understandable to stop the pregnancy of the mother or family would not have the resources or abilities to properly care for that child. On the other hand, I believe that the mental capabilities of my child (if I were to have a baby) would not change my love for them. I was really captivated by the quote in the article, where the mom is talking about her daughter: "Can she live a full life without without ever solving a quadratic equation? Without reading Dostoyevsky? I'm pretty sure she can. Can I live a full life without learning to cherish and welcome those in this world who are different from me? I'm pretty sure I can't." I feel like because of this natural sentiment that mothers may feel, children with down syndrome won't 'go extinct' in the near future. However, the role of technology is to give people a choice and evaluate their situation, however hard the situation may be.

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  21. I find this article very intriguing as it brings up an ethical dilemma. whether or not to end a pregnancy if the child has down syndrome. is a fetus with down syndrome as much as a human as one without down syndrome. I would say now that i would not want a child with down syndrome but that is right now if there was a actual life what is would actually do is... well i don't know what i would do. looking at the statistics was interesting and i liked the statistic "A third study analyzed responses from 284 people with Down syndrome: 99% said they were happy with their lives; 4% expressed sadness." 99%+4%= 103%
    i also find the mixed reactions to
    Down syndrome children interesting.
    Adrian C.
    6th period Doering
    i posted it on the main one on Saturday

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  22. This article is rather thought provoking as it brings up moral and ethical dilemmas. I think that in some cases, such as if the mother or family does not have the resources to support the child, then they should consider abortion. But, if its a perfectly good mother and family who just wants the "perfect kid" that's where it gets a little iffy. What is the perfect child? How bad do the disabilities have to be in order for abortion to be the more realistic, better option. These are questions that will at some point have to be faced by society. But I think its important to note that the children with Down syndrome seem to mostly affect their families for the better

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  23. I think that Henry brings up some interesting points. And many people have brought up the idea of whether or not it is ethical to abort your child just because it is not "perfect". It seems to me that it should be an individual choice, just as having a kid in any case should be the decision of the couple having the kid, not the society at large. It seems as though, yes, there are some issues with choosing whether or not to have a kid just because you know ahead of time that it will have a disease or disorder. However, it also seems that there are issues with regulating who has to keep their child, and who gets to choose to abort it. Therefore, I think it should be the choice of the people having the baby. Although, they should be informed before the test of all the issues surrounding the test.

    --Clare

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  24. Like many people have said, this article isn't very surprising. People simply don't want to deal with the emotional and costly result of having a child with Down Syndrome or genetic mutations in general. They have to watch their kid be stared at and bullied by other people and children who don't know any better, plus the cost of doctor visits and medication for issues that arise from the genetic mutation. Kids with Down Syndrome might very well be on the verge of extinction.
    But there are also the parents that are pro life and those parents will probably keep kids with Down Syndrome from going completely extinct.

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  25. Like many people have said, this article isn't very surprising. People simply don't want to deal with the emotional and costly result of having a child with Down Syndrome or genetic Mutations in general. They have to watch their kid be stared at and bullied by other people and other children who don't know any better, plus the cost of doctor visits and medication for issues that arise from the genetic mutation. Kids with Down Syndrome might very well be on the verge of extinction.
    But there are also the parents that are pro life and those parents will probably keep kids with Down Syndrome form going completely extinct.

    --Jazmine M

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