16 votes

The last children of Down Syndrome

18 comments

  1. jgb
    Link
    This seems a little absurd to me. Inclusiveness is a wonderful thing but one should not chase it off a cliff. Down Syndrome is a defect that even in the best case scenario imposes severe...

    The National Down Syndrome Association has also worked with doctors to alter the language they use with patients—“probability” instead of “risk,” “chromosome aberration” instead of “chromosome error.”

    This seems a little absurd to me. Inclusiveness is a wonderful thing but one should not chase it off a cliff. Down Syndrome is a defect that even in the best case scenario imposes severe limitations on the lives of those who are born with it. We must be compassionate - but not to the point of irrationality.

    16 votes
  2. Good_Apollo
    Link
    I’ll take eugenics in the hands of the parents who have to raise these children, their choices are personal, versus the government having this power.

    I’ll take eugenics in the hands of the parents who have to raise these children, their choices are personal, versus the government having this power.

    13 votes
  3. [8]
    Whom
    Link
    It's really sickening the extent to which eugenics is normalized and even the default in much of our world. That said, I have no idea how to address it politically or socially. In places where...

    It's really sickening the extent to which eugenics is normalized and even the default in much of our world.

    That said, I have no idea how to address it politically or socially. In places where abortion is a hot topic, a movement trying to discourage this could work against a right to abortion, and pretty much everywhere it's so far from people's minds. Measures like not trying to scare potential parents away with worst-case scenarios make sense as a starting place, but that's not a solution.

    Anyone have any insight into this issue in a specific place? I imagine the conversations being had must be heavily localized.

    2 votes
    1. [7]
      bloup
      Link Parent
      I really wouldn't call this eugenics. It'd become eugenics if people start terminating pregnancies due to genetic defects simply because they believe people with disabilities don't deserve to...

      I really wouldn't call this eugenics. It'd become eugenics if people start terminating pregnancies due to genetic defects simply because they believe people with disabilities don't deserve to exist and that their existence only makes the rest of humanity worse off. Terminating a pregnancy due to some anomaly that seriously impacts your ability to say with certainty that you will be able to guarantee that this individual will be able to live a happy and healthy life is not eugenics, though.

      3 votes
      1. Whom
        Link Parent
        I heavily disagree, but this conversation would get messy fast.

        I heavily disagree, but this conversation would get messy fast.

        1 vote
      2. [5]
        cfabbro
        (edited )
        Link Parent
        Just because it's an attempt to utilize it in a more ethical way, and involving parental control (instead of government) doesn't mean it's not eugenics. It's just referred to as "liberal/new"...

        Just because it's an attempt to utilize it in a more ethical way, and involving parental control (instead of government) doesn't mean it's not eugenics. It's just referred to as "liberal/new" eugenics under that specific framework. See: https://plato.stanford.edu/entries/eugenics/#ArgForLibEug

        1 vote
        1. [4]
          bloup
          Link Parent
          Okay, is terminating a pregnancy after discovering some kind of congenital heart defect when you absolutely do not have the resources to do anything to fix the problem once the baby is born an...

          Okay, is terminating a pregnancy after discovering some kind of congenital heart defect when you absolutely do not have the resources to do anything to fix the problem once the baby is born an example of "liberal eugenics"?

          Don't get me wrong, this is place where we should tread very lightly, because if we aren't careful, before we know it there will be literal physical distinctions between the social classes. But terminating a pregnancy because you are painfully aware that there is nothing you can do to actually make sure this person gets what they need in order to live a happy and fulfilling life is not eugenics.

          1 vote
          1. [3]
            cfabbro
            (edited )
            Link Parent
            Yes. Did you read the article I linked? It talks about diseases, disability, other "functional limitations", and the potential moral/ethical considerations regarding those in the application of...

            is terminating a pregnancy after discovering some kind of congenital heart defect when you absolutely do not have the resources to do anything to fix the problem once the baby is born an example of "liberal eugenics"?

            Yes. Did you read the article I linked? It talks about diseases, disability, other "functional limitations", and the potential moral/ethical considerations regarding those in the application of liberal eugenics.

            But terminating a pregnancy because you are painfully aware that there is nothing you can do to actually make sure this person gets what they need in order to live a happy and fulfilling life is not eugenics.

            Yes, it is. It's just classified specifically as "liberal eugenics". I understand you not wanting to have such a choice/decision associated with the term due to the historical baggage that comes with it, but it is what it is, and not all eugenics is necessarily "evil".

            p.s. I myself support the right of parents to terminate pregnancies in similar cases as you outlined, BTW. But even as a supporter of those rights, I'm not going to deny that it is eugenics, or deny the issue is fraught with ethical uncertainty and wider societal implications if taken too far.

            1. [2]
              bloup
              (edited )
              Link Parent
              You don't need to be rude. You know I didn't read the dry, academic, and very lengthy article that you sent me in 6 minutes. All I asked you was a clarifying question. But now that I have read it,...

              You don't need to be rude. You know I didn't read the dry, academic, and very lengthy article that you sent me in 6 minutes. All I asked you was a clarifying question.

              But now that I have read it, a bit, I really don't think it supports what you are saying at all. Throughout, they describe "liberal eugenics" as basically a set of policies and beliefs that are designed to promote the use of these sorts of practices in an express effort to make the world a "better place". First of all, that is eugenics, and literally the only difference between "liberal" eugenics and "classical" eugenics (according to what this article you sent me has to say), is what the eugenicists think a "better world" looks like. The classical eugenicist thinks the "better world" is one populated only by some kind of master race while the liberal eugenicist thinks the "better world" is one where we make it impossible to have children who have been arbitrarily determined to not be "well enough" to live.

              But I cannot find a single instance anywhere in this article where they identify any particular decision by a single individual as an example of "liberal eugenics", and I really don't even think whoever wrote this would even agree with you that the example I asked you about in my question would be "liberal eugenics".

              "Liberal eugenics" would be if society invested more resources on "weeding out" the unborn than they do on actually building a world where nobody has to feel like their children can't thrive. It's not a mother in a tough situation making a really hard choice. And you can respect her choice, and not be disgusted by it, all the while advocating for a world where there is no external pressure to terminate a pregnancy.

              Edit: I want to apologize for calling you rude, I started writing this comment before you added a lot to yours, and now what you wrote doesn't sound so rude anymore.

              2 votes
              1. cfabbro
                (edited )
                Link Parent
                Huh? Most of what you claim liberal eugenics is about is directly contradicted by the very first paragraph. Liberal eugenics isn't about "mak[ing] it impossible to have children" with certain...

                Huh? Most of what you claim liberal eugenics is about is directly contradicted by the very first paragraph.

                Advocates of liberal eugenics intend to distinguish it from troubling historical predecessors by highlighting four main differences. First, it is individual in nature rather than state-sponsored. The intended benefit of any eugenic intervention is individual/private welfare (that of the child-to-be, or of the family), rather than the welfare of the state as a whole. Second, it is premised on individual liberty, the freedom of parents to choose according to their own values and conceptions of the good life. The state does not mandate contraception, sterilization, prenatal testing, abortion, or any other form of eugenic intervention (note: there are potential exceptions in which judges or states have offered long-term contraception such as Norplant as a condition of probation related to a criminal offense or for the continued provision of welfare, see e.g., Dresser 1996). Rather, it allows individuals to choose among a range of alternatives. Third, it presumes value pluralism, recognizing that individual parents will often desire different things for their offspring. This means allowing others to choose in ways that we ourselves would not, in the interest of preserving a liberal society that is neutral about particular conceptions of the good. The aim of a liberal eugenic program is to expand reproductive choices for individuals, in contrast to the historical eugenic programs that clearly cut off reproductive options for many. (That said, even liberal eugenics advocates typically presume that some limits would need to be in place, to ensure that prospective parents could not act in ways clearly contrary to the interests of their future children, or in ways that seem clearly vicious; how and where those limits would be set are intensely controversial, as will be discussed below.)

                Liberal eugenics isn't about "mak[ing] it impossible to have children" with certain conditions, it's about expanding reproductive rights, and giving parents more options (which includes abortion), with the primary consideration being "individual/private welfare (that of the child-to-be, or of the family)". And allowing parents to terminate a fetus with a serious congenital heart condition definitely falls under it, IMO. The world ending up a better place is the potential outcome of liberal eugenics, but not the sole purpose, nor the major consideration.

                p.s. No need to apologize. I was unnecessarily rude with you before I edited my comment to expand on my thoughts... so it's me that needs to apologize, not you. Sorry for that.

  4. [8]
    markx2
    Link
    There will be women who are not offered any test women who after a positive test will have religious / faith based objections and so reject termination women who choose positively to have a child...

    There will be

    • women who are not offered any test
    • women who after a positive test will have religious / faith based objections and so reject termination
    • women who choose positively to have a child with Down(s) Syndrome

    The article subtitle:

    "Prenatal testing is changing who gets born and who doesn’t. This is just the beginning."

    Prenatal testing has been here for decades.

    Look at India where the ratio of male/female children is massively skewed even before the killing of female newborns is counted.

    This is no beginning. It is a continuation.

    3 votes
    1. [7]
      AugustusFerdinand
      (edited )
      Link Parent
      All covered in the article at length and your comment seems to be taking "This is just the beginning" out of context or was made without having read the article in it's entirety, if at all.

      There will be

      • women who are not offered any test
      • women who after a positive test will have religious / faith based objections and so reject termination
      • women who choose positively to have a child with Down(s) Syndrome

      Prenatal testing has been here for decades.
      This is no beginning. It is a continuation.

      All covered in the article at length and your comment seems to be taking "This is just the beginning" out of context or was made without having read the article in it's entirety, if at all.

      10 votes
      1. [6]
        markx2
        Link Parent
        I did read it. Eugenics has been around for a very very long time. You seem to have missed my line about India...

        I did read it.

        Eugenics has been around for a very very long time.

        You seem to have missed my line about India...

        1. [5]
          AugustusFerdinand
          Link Parent
          Except "Just the beginning" had nothing to do with Indian eugenics or nearly anything to do with sex.

          Except "Just the beginning" had nothing to do with Indian eugenics or nearly anything to do with sex.

          4 votes
          1. [4]
            markx2
            Link Parent
            Look at the article subtitle. It says "Prenatal testing is changing who gets born and who doesn’t. This is just the beginning." Prenatal testing, and therefore the choices about termination, have...

            Look at the article subtitle. It says

            "Prenatal testing is changing who gets born and who doesn’t. This is just the beginning."

            Prenatal testing, and therefore the choices about termination, have been here for decades.

            The subtitle implies - to me - that this a new dawn, new tech, the beginning of something.

            It is emphatically not.

            The subtitle is in the wrong.

            1. [2]
              hhh
              Link Parent
              This is so missing the point of the article I don't even know what to say. You say that you've read the article but you clearly haven't based on your responses. You took a whole 8,000 word article...

              This is so missing the point of the article I don't even know what to say. You say that you've read the article but you clearly haven't based on your responses. You took a whole 8,000 word article about ethics, morality, and what it means to live a life and reduced it to "this technology has been around for decades." Of course! The article explicitly says this sort of testing has been around since the 70s! Is that really all you got out of the article? That it's technically wrong (it isn't) on some minor detail?

              And now you've already poisoned the well for this discussion. 7 comments in and none of them have actually said anything of substance, just quibbling over semantics.

              8 votes
              1. AugustusFerdinand
                Link Parent
                For what it's worth I'm working on a very long reply that goes into depth of the article and my opinions as someone that has first hand experience in the matter. It's just going to take time as...

                For what it's worth I'm working on a very long reply that goes into depth of the article and my opinions as someone that has first hand experience in the matter. It's just going to take time as it's also an emotional topic for me.

                6 votes
            2. AugustusFerdinand
              Link Parent
              Which only further gives credence to my postulation that you didn't read the article. It not only discusses how long it's been around, but also goes in depth as to what "just the beginning" means....

              Which only further gives credence to my postulation that you didn't read the article. It not only discusses how long it's been around, but also goes in depth as to what "just the beginning" means.

              The subtitle is only wrong if you didn't read the article or simply failed to understand it.

              6 votes