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	<title>Comments on: Screening for a Life Worth Living</title>
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	<link>http://www.cornellsociety.org/2008/04/untitled/</link>
	<description>Unity in charity, diversity in truth</description>
	<pubDate>Sun, 23 Nov 2008 18:28:24 +0000</pubDate>
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		<title>By: Clara</title>
		<link>http://www.cornellsociety.org/2008/04/untitled/#comment-42829</link>
		<dc:creator>Clara</dc:creator>
		<pubDate>Thu, 03 Apr 2008 02:17:56 +0000</pubDate>
		<guid isPermaLink="false">http://www.cornellsociety.org/2008/04/untitled/#comment-42829</guid>
		<description>Thanks to everyone for those insightful comments. And it's good to point out that amniocentesis carries certain risks, though the risk has gone down significantly in recent years. Back in the 70's they said that the chance of miscarriage would be increased by about .5% -- which would mean about 1 time out of 200 the procedure would cause miscarriage. They still called it "low risk" but to me that seems like a pretty high risk for a procedure that really isn't necessary. However, the procedure's gotten quite a bit safer since then, and I've read that recent statistics mark the increased chance of miscarriage at about .06%. So that would be one in about 1,600. Maybe still not worth it, but that's a pretty significant reduction.

Also, I've heard that the risk is further diminished when the amniocentesis is done later in the pregnancy, which would make sense from lots of angles for those Catholic parents who do want to consider it. As Kathy Ratkiewicz pointed out, parents surely don't need &lt;i&gt;that much&lt;/i&gt; warning if their child has an unusual medical condition. A few months' notice would probably be plenty.

But whatever you think of amniocentesis per se, I believe other, possibly safer methods of prenatal screening are being developed, so the time is surely going to come (probably soon) when parents do have to decide how much they want to know about their unborn children's genes. 

Anyway, thanks to everyone who's commented. I hadn't heard anything about this Senate legislation, so that was interesting, and I at least will certainly be glad to sign the petition.</description>
		<content:encoded><![CDATA[<p>Thanks to everyone for those insightful comments. And it&#8217;s good to point out that amniocentesis carries certain risks, though the risk has gone down significantly in recent years. Back in the 70&#8217;s they said that the chance of miscarriage would be increased by about .5% &#8212; which would mean about 1 time out of 200 the procedure would cause miscarriage. They still called it &#8220;low risk&#8221; but to me that seems like a pretty high risk for a procedure that really isn&#8217;t necessary. However, the procedure&#8217;s gotten quite a bit safer since then, and I&#8217;ve read that recent statistics mark the increased chance of miscarriage at about .06%. So that would be one in about 1,600. Maybe still not worth it, but that&#8217;s a pretty significant reduction.</p>
<p>Also, I&#8217;ve heard that the risk is further diminished when the amniocentesis is done later in the pregnancy, which would make sense from lots of angles for those Catholic parents who do want to consider it. As Kathy Ratkiewicz pointed out, parents surely don&#8217;t need <i>that much</i> warning if their child has an unusual medical condition. A few months&#8217; notice would probably be plenty.</p>
<p>But whatever you think of amniocentesis per se, I believe other, possibly safer methods of prenatal screening are being developed, so the time is surely going to come (probably soon) when parents do have to decide how much they want to know about their unborn children&#8217;s genes. </p>
<p>Anyway, thanks to everyone who&#8217;s commented. I hadn&#8217;t heard anything about this Senate legislation, so that was interesting, and I at least will certainly be glad to sign the petition.</p>
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		<title>By: Julie</title>
		<link>http://www.cornellsociety.org/2008/04/untitled/#comment-42810</link>
		<dc:creator>Julie</dc:creator>
		<pubDate>Thu, 03 Apr 2008 00:00:31 +0000</pubDate>
		<guid isPermaLink="false">http://www.cornellsociety.org/2008/04/untitled/#comment-42810</guid>
		<description>I like what you say here, especially when you said, "All the talk among bioethicists about what level of mental retardation would make a life “not worth living” is offensive and absurd... many people have internalized this assumption so thoroughly that it doesn’t even occur to them that it might be offensive to ask her, the mother of a child with Down Syndrome, whether she “has done all the screening on this one to find out…” and "It’s unfortunate that not killing your own child would come to be counted as a heroic act, but in our present society, such seems to be the case."

You are absolutely right.  I work with men and women and have friends who have developmental disabilities.  One thing I've learned is no one can judge whether someone else has a good life or not.  These friends and acauaintances of mine with dev disabilities consider themselves to be pretty average and the biggest 'barrier' in any of their lives is society's attitude toward and prejudice of them, far bigger than their disability itself.</description>
		<content:encoded><![CDATA[<p>I like what you say here, especially when you said, &#8220;All the talk among bioethicists about what level of mental retardation would make a life “not worth living” is offensive and absurd&#8230; many people have internalized this assumption so thoroughly that it doesn’t even occur to them that it might be offensive to ask her, the mother of a child with Down Syndrome, whether she “has done all the screening on this one to find out…” and &#8220;It’s unfortunate that not killing your own child would come to be counted as a heroic act, but in our present society, such seems to be the case.&#8221;</p>
<p>You are absolutely right.  I work with men and women and have friends who have developmental disabilities.  One thing I&#8217;ve learned is no one can judge whether someone else has a good life or not.  These friends and acauaintances of mine with dev disabilities consider themselves to be pretty average and the biggest &#8216;barrier&#8217; in any of their lives is society&#8217;s attitude toward and prejudice of them, far bigger than their disability itself.</p>
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		<title>By: Kathy Ratkiewicz</title>
		<link>http://www.cornellsociety.org/2008/04/untitled/#comment-42755</link>
		<dc:creator>Kathy Ratkiewicz</dc:creator>
		<pubDate>Wed, 02 Apr 2008 18:14:01 +0000</pubDate>
		<guid isPermaLink="false">http://www.cornellsociety.org/2008/04/untitled/#comment-42755</guid>
		<description>sorry..I am the author of the post with the information about the Kennedy Brownback bill and the petition. I didn't sign in correctly before i posted it. When i refer to prenatal screening, i am talking about non-invasive prenatal screening(ie, ultrasound) not amniocentesis. I personally would never have an amniocentesis due to the risk of miscarriage. sorry that i did not make that clear.</description>
		<content:encoded><![CDATA[<p>sorry..I am the author of the post with the information about the Kennedy Brownback bill and the petition. I didn&#8217;t sign in correctly before i posted it. When i refer to prenatal screening, i am talking about non-invasive prenatal screening(ie, ultrasound) not amniocentesis. I personally would never have an amniocentesis due to the risk of miscarriage. sorry that i did not make that clear.</p>
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		<title>By: JK</title>
		<link>http://www.cornellsociety.org/2008/04/untitled/#comment-42752</link>
		<dc:creator>JK</dc:creator>
		<pubDate>Wed, 02 Apr 2008 17:50:49 +0000</pubDate>
		<guid isPermaLink="false">http://www.cornellsociety.org/2008/04/untitled/#comment-42752</guid>
		<description>Amniocentesis carries a risk of killing the baby.  I was over 35 for my last three babies and was a candidate for amnio, but did not see any benefit that outweighed the risk.</description>
		<content:encoded><![CDATA[<p>Amniocentesis carries a risk of killing the baby.  I was over 35 for my last three babies and was a candidate for amnio, but did not see any benefit that outweighed the risk.</p>
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		<title>By: Kathy Ratkiewicz</title>
		<link>http://www.cornellsociety.org/2008/04/untitled/#comment-42745</link>
		<dc:creator>Kathy Ratkiewicz</dc:creator>
		<pubDate>Wed, 02 Apr 2008 17:01:04 +0000</pubDate>
		<guid isPermaLink="false">http://www.cornellsociety.org/2008/04/untitled/#comment-42745</guid>
		<description>Hi-
Thank you for your thought provoking article. Speaking as the parent of a young son with Ds, I think that sometimes a prenatal diagnosis can be a good thing IF it is being used to prepare yourself for the possibility that your child would need specialized medical attention either before or soon after birth. Some babies have significant heart defects, and need to be cared for in a highly specialized hospital setting. 
The problem with prenatal screening (for Ds,in particular) as it is done today is that it is recommended that the screening be done in the first trimester. The stated purpose is so that supposedly it gives the parents more time to prepare for the birth if indeed, the child is diagnosed with Ds. The truth of the matter is that there is no need to know that soon unless the plan is to terminate..knowing that soon tends to wreck the rest of the pregnancy, because many parents don't know what life is like with a child with Ds, so they may tend to imagine the worst. Many doctors don't help the matter, because, along with positive results, they include a schedule for the earliest available slot in their schedule for the mother to have an abortion. Many parents report that they are given very outdated, inaccurate, and horribly negative "information" about life for a child w/Ds, leading some parents to believe that they are actually doing the loving thing to terminate the pregnancy. They are not referred to Ds support groups because many doctors think that the parents there are 'biased'.
Currently, there is legislation in the Senate that would  require doctors to provide expectant and new (up to 12 months after the birth of the child) with accurate, current and unbiased information concerning the diagnosis. The legislation would also provide a way for doctors to refer new or expectant parents to support groups for families who have a child w/Ds (or other congenital conditions)
here is information about the bill:
http://www.thomas.gov/cgi-bin/bdquery/z?d110:SN01810:@@@P
There is also a petition currently circulating concerning this. If any of you would sign the petition, and ask others to do so, we would greatly appreciate it.
http://www.thepetitionsite.com/1/DS-advocacy 
Thank you.
My son is 9 1/2 yrs old now,had open heart surgery when he was 8 months old, and is a healthy, happy child who is the life of the party at our house.</description>
		<content:encoded><![CDATA[<p>Hi-<br />
Thank you for your thought provoking article. Speaking as the parent of a young son with Ds, I think that sometimes a prenatal diagnosis can be a good thing IF it is being used to prepare yourself for the possibility that your child would need specialized medical attention either before or soon after birth. Some babies have significant heart defects, and need to be cared for in a highly specialized hospital setting.<br />
The problem with prenatal screening (for Ds,in particular) as it is done today is that it is recommended that the screening be done in the first trimester. The stated purpose is so that supposedly it gives the parents more time to prepare for the birth if indeed, the child is diagnosed with Ds. The truth of the matter is that there is no need to know that soon unless the plan is to terminate..knowing that soon tends to wreck the rest of the pregnancy, because many parents don&#8217;t know what life is like with a child with Ds, so they may tend to imagine the worst. Many doctors don&#8217;t help the matter, because, along with positive results, they include a schedule for the earliest available slot in their schedule for the mother to have an abortion. Many parents report that they are given very outdated, inaccurate, and horribly negative &#8220;information&#8221; about life for a child w/Ds, leading some parents to believe that they are actually doing the loving thing to terminate the pregnancy. They are not referred to Ds support groups because many doctors think that the parents there are &#8216;biased&#8217;.<br />
Currently, there is legislation in the Senate that would  require doctors to provide expectant and new (up to 12 months after the birth of the child) with accurate, current and unbiased information concerning the diagnosis. The legislation would also provide a way for doctors to refer new or expectant parents to support groups for families who have a child w/Ds (or other congenital conditions)<br />
here is information about the bill:<br />
<a href="http://www.thomas.gov/cgi-bin/bdquery/z?d110:SN01810:@@@P" rel="nofollow">http://www.thomas.gov/cgi-bin/bdquery/z?d110:SN01810:@@@P</a><br />
There is also a petition currently circulating concerning this. If any of you would sign the petition, and ask others to do so, we would greatly appreciate it.<br />
<a href="http://www.thepetitionsite.com/1/DS-advocacy" rel="nofollow">http://www.thepetitionsite.com/1/DS-advocacy</a><br />
Thank you.<br />
My son is 9 1/2 yrs old now,had open heart surgery when he was 8 months old, and is a healthy, happy child who is the life of the party at our house.</p>
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		<title>By: Mother of a son</title>
		<link>http://www.cornellsociety.org/2008/04/untitled/#comment-42739</link>
		<dc:creator>Mother of a son</dc:creator>
		<pubDate>Wed, 02 Apr 2008 16:51:46 +0000</pubDate>
		<guid isPermaLink="false">http://www.cornellsociety.org/2008/04/untitled/#comment-42739</guid>
		<description>When I was pregnant with with my only child 20 years ago, I had an amnio done since I was over 35.  I was 16 weeks pregnant and my husband came with me.  We saw the baby for the first time on ultrasound and fell in love.  I could not yet feel him move, yet we could see him sucking his thumb and waving his arms and kicking his feet.  At that point, he could have had any number of "problems" and we would not have cared.  We were both in love from that moment. He had become so real to us.  It was at that moment that we both became whole heartedly pro-life.  What we saw at 16 weeks was a beautifully formed human being . . . our little boy. 

Of course, the screening for Down's Syndrome did not come through until later.  He does not have it.  In that time, I was able to learn that the screening does NOT tell anything about how severe the case is, nor about the child.  Learning about the paucity of information that that diagnosis would have provided made me realize how stupid is the assumption that a woman would want to abort her child based on it. 

We were not Catholic at the time. Our son has led us into the Church. He first demonstrated to us what life before birth is and that parents love their children before they are born. Ultrasound is truly a gift from God as it allows us to peer into a, heretofor, closed world and actually see the life growing there.  

We were glsd to know the sex of our yet-to-be-born baby so we could prepare for him.  If he had had any problems, I would have appreciated the time to prepare for dealing with those problems as well.  

I would hope that any woman going for such testing would have an ultrasound at the same time and BE ALLOWED TO WATCH IT and go in with the firm conviction that NOTHING learned from the testing will cause her to consent to an abortion. We did not go in thinking that if anything were wrong we would abort.  We went in thinking that if anything were wrong, we would want advance knowledge in order to prepare.

Mother of a son</description>
		<content:encoded><![CDATA[<p>When I was pregnant with with my only child 20 years ago, I had an amnio done since I was over 35.  I was 16 weeks pregnant and my husband came with me.  We saw the baby for the first time on ultrasound and fell in love.  I could not yet feel him move, yet we could see him sucking his thumb and waving his arms and kicking his feet.  At that point, he could have had any number of &#8220;problems&#8221; and we would not have cared.  We were both in love from that moment. He had become so real to us.  It was at that moment that we both became whole heartedly pro-life.  What we saw at 16 weeks was a beautifully formed human being . . . our little boy. </p>
<p>Of course, the screening for Down&#8217;s Syndrome did not come through until later.  He does not have it.  In that time, I was able to learn that the screening does NOT tell anything about how severe the case is, nor about the child.  Learning about the paucity of information that that diagnosis would have provided made me realize how stupid is the assumption that a woman would want to abort her child based on it. </p>
<p>We were not Catholic at the time. Our son has led us into the Church. He first demonstrated to us what life before birth is and that parents love their children before they are born. Ultrasound is truly a gift from God as it allows us to peer into a, heretofor, closed world and actually see the life growing there.  </p>
<p>We were glsd to know the sex of our yet-to-be-born baby so we could prepare for him.  If he had had any problems, I would have appreciated the time to prepare for dealing with those problems as well.  </p>
<p>I would hope that any woman going for such testing would have an ultrasound at the same time and BE ALLOWED TO WATCH IT and go in with the firm conviction that NOTHING learned from the testing will cause her to consent to an abortion. We did not go in thinking that if anything were wrong we would abort.  We went in thinking that if anything were wrong, we would want advance knowledge in order to prepare.</p>
<p>Mother of a son</p>
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		<title>By: Clara</title>
		<link>http://www.cornellsociety.org/2008/04/untitled/#comment-42733</link>
		<dc:creator>Clara</dc:creator>
		<pubDate>Wed, 02 Apr 2008 15:57:14 +0000</pubDate>
		<guid isPermaLink="false">http://www.cornellsociety.org/2008/04/untitled/#comment-42733</guid>
		<description>That's perfectly reasonable, Iosephe, though I suspect (again, no personal experience to back this up, but I've been told this before and it seems plausible) that what you say about the attachments developing specifically at birth, is more true of fathers than mothers. For obvious reasons. You certainly could have a situation in which the mother would rather know sooner and the father would rather wait.

For all we say about how great and beautiful people with Down Syndrome are, nobody's ever going to &lt;i&gt;hope&lt;/i&gt; that for their child, and no matter when you found out it would be a shock. I guess the delivery room seems to me a supremely bad place to get that shock, when hopes and emotions are already running so high, but I see what you mean that it could be better to hear it when those hopes are attached to an &lt;i&gt;actual person&lt;/i&gt;. On the other hand, if you knew beforehand, you might already have "supportive people" lined up to help -- a local support group, parents with Down Syndrome kids of their own who are willing to take calls from you while you're figuring things out, etc. Anyway, I guess the point is clear. Knowing earlier would probably make the pregnancy harder but the delivery and early weeks of parenthood easier. Take your choice.

Of course, an additional advantage of amniocentesis (which doesn't only test for Down Syndrome, of course, though that's one of the big ones) is that most of the time it reveals a healthy baby, which relieves a few of the expectant parents' worries (not that there aren't a million more, but still.) 

Anyway, I certainly don't think there are moral obligations either way -- at least, not unless they're testing for a condition that could also be treated &lt;i&gt;in utero&lt;/i&gt;. But as long as I was on the subject, I just thought I'd throw out that, for all the evil of the practices that commonly follow it, amniocentesis does not &lt;i&gt;per se&lt;/i&gt; seem to be a morally objectionable procedure.</description>
		<content:encoded><![CDATA[<p>That&#8217;s perfectly reasonable, Iosephe, though I suspect (again, no personal experience to back this up, but I&#8217;ve been told this before and it seems plausible) that what you say about the attachments developing specifically at birth, is more true of fathers than mothers. For obvious reasons. You certainly could have a situation in which the mother would rather know sooner and the father would rather wait.</p>
<p>For all we say about how great and beautiful people with Down Syndrome are, nobody&#8217;s ever going to <i>hope</i> that for their child, and no matter when you found out it would be a shock. I guess the delivery room seems to me a supremely bad place to get that shock, when hopes and emotions are already running so high, but I see what you mean that it could be better to hear it when those hopes are attached to an <i>actual person</i>. On the other hand, if you knew beforehand, you might already have &#8220;supportive people&#8221; lined up to help &#8212; a local support group, parents with Down Syndrome kids of their own who are willing to take calls from you while you&#8217;re figuring things out, etc. Anyway, I guess the point is clear. Knowing earlier would probably make the pregnancy harder but the delivery and early weeks of parenthood easier. Take your choice.</p>
<p>Of course, an additional advantage of amniocentesis (which doesn&#8217;t only test for Down Syndrome, of course, though that&#8217;s one of the big ones) is that most of the time it reveals a healthy baby, which relieves a few of the expectant parents&#8217; worries (not that there aren&#8217;t a million more, but still.) </p>
<p>Anyway, I certainly don&#8217;t think there are moral obligations either way &#8212; at least, not unless they&#8217;re testing for a condition that could also be treated <i>in utero</i>. But as long as I was on the subject, I just thought I&#8217;d throw out that, for all the evil of the practices that commonly follow it, amniocentesis does not <i>per se</i> seem to be a morally objectionable procedure.</p>
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		<title>By: Iosephus</title>
		<link>http://www.cornellsociety.org/2008/04/untitled/#comment-42712</link>
		<dc:creator>Iosephus</dc:creator>
		<pubDate>Wed, 02 Apr 2008 14:19:12 +0000</pubDate>
		<guid isPermaLink="false">http://www.cornellsociety.org/2008/04/untitled/#comment-42712</guid>
		<description>I guess I don't disagree, on some level.  I just don't know that I would ever make that decision myself.  And I guess my reason would be (to save myself from the charge of irrational behavior) that the knowledge of such a condition would make the nine months of pregnancy harder.  At least for me, as the father, things took on a whole new dimension when the baby leaves the womb: whether you like it or not, you've got to get down to the business of taking care of this very helpless, small individual.  But while still in the womb, it's hard to develop (to speak perhaps superficially) the emotional attachment - you're committed to the idea (again, speaking superficially), but not yet to some concrete person (though there is, in fact, a living human being there).</description>
		<content:encoded><![CDATA[<p>I guess I don&#8217;t disagree, on some level.  I just don&#8217;t know that I would ever make that decision myself.  And I guess my reason would be (to save myself from the charge of irrational behavior) that the knowledge of such a condition would make the nine months of pregnancy harder.  At least for me, as the father, things took on a whole new dimension when the baby leaves the womb: whether you like it or not, you&#8217;ve got to get down to the business of taking care of this very helpless, small individual.  But while still in the womb, it&#8217;s hard to develop (to speak perhaps superficially) the emotional attachment - you&#8217;re committed to the idea (again, speaking superficially), but not yet to some concrete person (though there is, in fact, a living human being there).</p>
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