My $0.02.

My older brother has Autistism or Asperger's Syndrome. My younger brother is mentally retarded. Unfortunately, these conditions don't have genetic tests yet, so diagnosis is more of an art than a science. And even with a diagnoisis that often means little more than they have a name for it. :-( I've done some reading and considering of issues like these, but have to admit that I know little about Down Syndrome.

My earlier impression was that it was often accompanied by other serious birth defects, but the things I've read about it this morning do not mention that.

While I sympathize with Will and understand his concern, I would not take his comments on the UK and US studies of Down Syndrome at face value. His column is not intended to present a balanced view of the issue, but rather to convince others that his view is correct. I would want to know more about these studies before I could be convinced by him.

Whenever abortion is involved it becomes a defining characteristic of the issue for many people. Similarly for euthenasia.

I come down on these issues a little differently. I think people must have the ability to control their reproduction. Information about STDs, reproductive health, etc., should be available to everyone as part of health classes in schools starting before puberty. Contraception should be available to everyone who is sexually active.

Abortion should be available as a last-resort contraception method. I can't imagine anyone wanting to have an abortion as a first choice, but it needs to be available. "Morning after" pills need to be available with minimal restrictions as well (e.g. perhaps behind a pharmacy counter but no prescription required). The availablity of abortion after viability is a little more complicated for me. I think it should still be available but its use should be exceedingly rare.

I have no children and probably never will. I think it's wrong to try to select characteristics of children (especially gender) though selective termination. But I think that is exceedingly rare. Such cases should not determine the outcome of the debate, IMHO. But I do think that it's ultimately the mother's choice whether she thinks she can care for a child with severe problems and whether she is willing to go through with the pregnancy. Adoption must not be an imposed solution, IMO.

There was a long, heart-rending story in the Washington Post magazine last weekend - [link|http://www.washingtonpost.com/ac2/wp-dyn/A28673-2005Apr6?language=printer|Hard Labor] - about a couple who had strong disagreements about whether to have a child (they already named Leila) diagnosed with HPE:

There was finally a name for Leila's condition: holoprosencephaly (HPE). Her brain had failed to divide and separate into two distinct hemispheres. About one baby in 5,000 to 10,000 is born with HPE, according to the Carter Centers for Brain Research in Holoprosencephaly and Related Malformations, a consortium of research hospitals and universities that includes the National Institutes of Health in Bethesda. But because most HPE pregnancies end in miscarriage, HPE may actually affect as many as 1 in 200 pregnancies. Of the fetuses that make it to delivery, very few survive past six months.

Children born with HPE are besieged by physical problems. Their eyes may not develop properly. They may even have just one eye, centered on their forehead. They may have no nose, or a flat, single-nostril nose, or a nose on their forehead. They may have a small head, excessive fluid in the brain, mental retardation, epilepsy and abnormalities in various organ systems.

The vast majority who survive beyond birth cannot eat or breathe on their own, or speak, walk or sit up. They can have frequent and severe seizures, which can wipe out everything that they have managed to learn. Perhaps the only saving grace: Kids with this affliction seem to smile and laugh often.

Leila was born two months premature, weighted 3 pounds 3 ounces. She died less than an hour after birth. :-(

I think the Schiavo case was different from an elderly person near the end of their life. My view is that Terri died in 1990 but her body was kept alive. An elderly person who is slowly declining is still the person they were years before, but of diminished capacity. Respecting Terri's expressed wishes has little to say about euthenasia, IMO.

That said, I do think that people whose bodies manage to keep trundling on but who are clearly miserable should have the option of dying on their own terms. Why should suicide only be available to those who are able to do it? The question is, how should such a policy be constructed to protect those who have become more of a burden (perceived or real) on others than on themselves? I don't know if there's a good answer to that, but just because we can't make a perfect policy doesn't mean that it shouldn't be available.

In short, I don't think of these things as "quality of life" arguments. I think it's more a "personal liberty" argument. It's several things that get jumbled together once abortion and "right to life" politics get mixed in.

My $0.02.

Luck with your daughter! She sounds like a joy. :-)

Cheers,
Scott.

and I thank you for your extremely insightful reply. I know we "threaded" on this a while ago and I'm getting redundant. That said, I am not advocating any policy regarding abortion rights, etc. I still believe it should be the choice of the parents. What I do object to is that most parents are woefully uninformed on these issues when a diagnosis like this comes about, even assuming that they can be objective at such an emotional time.

I'm all about building awareness. I want to spare the 80% the guilt of not bringing some of these children to term because they were ill or misinformed about what many of these syndromes (Down, autism, MS, Cerebral Palsey, etc.) actually entail. In my heart of hearts, I know that had my wife had amnio done, I would have lobbied long and hard to abort my daughter. Go to [link|http://www.nd.edu/~dreck|http://www.nd.edu/~dreck] and check her out...

I find it extremely interesting as well that an event like this shows the humanity of even political hacks such as George Will, you know...

Post #203,631 by Another Scott 4/17/05 10:56:58 AM Reply	My $0.02. My older brother has Autistism or Asperger's Syndrome. My younger brother is mentally retarded. Unfortunately, these conditions don't have genetic tests yet, so diagnosis is more of an art than a science. And even with a diagnoisis that often means little more than they have a name for it. :-( I've done some reading and considering of issues like these, but have to admit that I know little about Down Syndrome. My earlier impression was that it was often accompanied by other serious birth defects, but the things I've read about it this morning do not mention that. While I sympathize with Will and understand his concern, I would not take his comments on the UK and US studies of Down Syndrome at face value. His column is not intended to present a balanced view of the issue, but rather to convince others that his view is correct. I would want to know more about these studies before I could be convinced by him. Whenever abortion is involved it becomes a defining characteristic of the issue for many people. Similarly for euthenasia. I come down on these issues a little differently. I think people must have the ability to control their reproduction. Information about STDs, reproductive health, etc., should be available to everyone as part of health classes in schools starting before puberty. Contraception should be available to everyone who is sexually active. Abortion should be available as a last-resort contraception method. I can't imagine anyone wanting to have an abortion as a first choice, but it needs to be available. "Morning after" pills need to be available with minimal restrictions as well (e.g. perhaps behind a pharmacy counter but no prescription required). The availablity of abortion after viability is a little more complicated for me. I think it should still be available but its use should be exceedingly rare. I have no children and probably never will. I think it's wrong to try to select characteristics of children (especially gender) though selective termination. But I think that is exceedingly rare. Such cases should not determine the outcome of the debate, IMHO. But I do think that it's ultimately the mother's choice whether she thinks she can care for a child with severe problems and whether she is willing to go through with the pregnancy. Adoption must not be an imposed solution, IMO. There was a long, heart-rending story in the Washington Post magazine last weekend - [link\|http://www.washingtonpost.com/ac2/wp-dyn/A28673-2005Apr6?language=printer\|Hard Labor] - about a couple who had strong disagreements about whether to have a child (they already named Leila) diagnosed with HPE: There was finally a name for Leila's condition: holoprosencephaly (HPE). Her brain had failed to divide and separate into two distinct hemispheres. About one baby in 5,000 to 10,000 is born with HPE, according to the Carter Centers for Brain Research in Holoprosencephaly and Related Malformations, a consortium of research hospitals and universities that includes the National Institutes of Health in Bethesda. But because most HPE pregnancies end in miscarriage, HPE may actually affect as many as 1 in 200 pregnancies. Of the fetuses that make it to delivery, very few survive past six months. Children born with HPE are besieged by physical problems. Their eyes may not develop properly. They may even have just one eye, centered on their forehead. They may have no nose, or a flat, single-nostril nose, or a nose on their forehead. They may have a small head, excessive fluid in the brain, mental retardation, epilepsy and abnormalities in various organ systems. The vast majority who survive beyond birth cannot eat or breathe on their own, or speak, walk or sit up. They can have frequent and severe seizures, which can wipe out everything that they have managed to learn. Perhaps the only saving grace: Kids with this affliction seem to smile and laugh often. Leila was born two months premature, weighted 3 pounds 3 ounces. She died less than an hour after birth. :-( I think the Schiavo case was different from an elderly person near the end of their life. My view is that Terri died in 1990 but her body was kept alive. An elderly person who is slowly declining is still the person they were years before, but of diminished capacity. Respecting Terri's expressed wishes has little to say about euthenasia, IMO. That said, I do think that people whose bodies manage to keep trundling on but who are clearly miserable should have the option of dying on their own terms. Why should suicide only be available to those who are able to do it? The question is, how should such a policy be constructed to protect those who have become more of a burden (perceived or real) on others than on themselves? I don't know if there's a good answer to that, but just because we can't make a perfect policy doesn't mean that it shouldn't be available. In short, I don't think of these things as "quality of life" arguments. I think it's more a "personal liberty" argument. It's several things that get jumbled together once abortion and "right to life" politics get mixed in. My $0.02. Luck with your daughter! She sounds like a joy. :-) Cheers, Scott.
Post #203,636 by danreck 4/17/05 12:02:54 PM Reply	Your $.02 is worth about a million bucks and I thank you for your extremely insightful reply. I know we "threaded" on this a while ago and I'm getting redundant. That said, I am not advocating any policy regarding abortion rights, etc. I still believe it should be the choice of the parents. What I do object to is that most parents are woefully uninformed on these issues when a diagnosis like this comes about, even assuming that they can be objective at such an emotional time. I'm all about building awareness. I want to spare the 80% the guilt of not bringing some of these children to term because they were ill or misinformed about what many of these syndromes (Down, autism, MS, Cerebral Palsey, etc.) actually entail. In my heart of hearts, I know that had my wife had amnio done, I would have lobbied long and hard to abort my daughter. Go to [link\|http://www.nd.edu/~dreck\|http://www.nd.edu/~dreck] and check her out... I find it extremely interesting as well that an event like this shows the humanity of even political hacks such as George Will, you know... Just a few thoughts, Danno
Post #203,677 by ben_tilly 4/17/05 11:04:32 PM Reply	Quibbles I do not want to see the Morning After Pill to be handed out over the counter. Popular rumor notwithstanding, it has side effects and is not entirely effective. People should not get in the habit of using it routinely. Plus there are STDs which it does not help with. These things make it important in my opinion that people have a discussion with a doctor before getting one. About gender selection, while it may be rare in the USA, it is not rare in other countries. For instance in India and China it has become so common that there are serious imbalances in the number of young men and women. Enough so to make being a member of the rare sex quite valuable. While I deplore the dynamics that lead to this, I expect that in a couple of generations societies will adapt and we won't see these wide imbalances any more. Cheers, Ben I have come to believe that idealism without discipline is a quick road to disaster, while discipline without idealism is pointless. -- Aaron Ward (my brother)

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