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	<title>Comments on: Information and Eugenics?</title>
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	<description>Information, Law, and the Law of Information</description>
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		<title>By: Resveratrol</title>
		<link>http://blogs.law.harvard.edu/infolaw/2007/01/30/information-and-eugenics/comment-page-1/#comment-94207</link>
		<dc:creator>Resveratrol</dc:creator>
		<pubDate>Mon, 17 Aug 2009 15:01:42 +0000</pubDate>
		<guid isPermaLink="false">http://blogs.law.harvard.edu/infolaw/2007/01/30/information-and-eugenics/#comment-94207</guid>
		<description>What I do with my body is not the business of the government. The abortion debate as a political concern has been an extremely slippery political slope with no real advantages to politicizing this issue. Similarly, I believe mandatory genetic testing also falls into this ugly slippery slope and political action on this issue is dangerous and unproductive venture.</description>
		<content:encoded><![CDATA[<p>What I do with my body is not the business of the government. The abortion debate as a political concern has been an extremely slippery political slope with no real advantages to politicizing this issue. Similarly, I believe mandatory genetic testing also falls into this ugly slippery slope and political action on this issue is dangerous and unproductive venture.</p>
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		<title>By: babies blog</title>
		<link>http://blogs.law.harvard.edu/infolaw/2007/01/30/information-and-eugenics/comment-page-1/#comment-64330</link>
		<dc:creator>babies blog</dc:creator>
		<pubDate>Sun, 14 Sep 2008 17:22:27 +0000</pubDate>
		<guid isPermaLink="false">http://blogs.law.harvard.edu/infolaw/2007/01/30/information-and-eugenics/#comment-64330</guid>
		<description>Good reply William. The additional time that this type of testing allows parents can be invaluable for preparing the parents for the challenges ahead of them.</description>
		<content:encoded><![CDATA[<p>Good reply William. The additional time that this type of testing allows parents can be invaluable for preparing the parents for the challenges ahead of them.</p>
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		<title>By: Betsy</title>
		<link>http://blogs.law.harvard.edu/infolaw/2007/01/30/information-and-eugenics/comment-page-1/#comment-13212</link>
		<dc:creator>Betsy</dc:creator>
		<pubDate>Thu, 10 May 2007 15:29:31 +0000</pubDate>
		<guid isPermaLink="false">http://blogs.law.harvard.edu/infolaw/2007/01/30/information-and-eugenics/#comment-13212</guid>
		<description>Will&#039;s column doesn&#039;t trouble me for its anti-genetic screening point of view, to which I believe he is fully entitled.  However his intellectual dishonesty in the use of highly charged language and manipulative framing of the question(s) hardly lends itself to a straightforward furtherance of the debate.  Implied in Mr. Will&#039;s opening salvo is the idea that obstetricians have an interest in somehow persuading pregnant couples to choose to abort genetically abnormal fetuses, when nothing could be further from the truth.  Indeed it precisely because doctors would prefer that couples make these decisions for themselves - without the &quot;what you do you recommend?&quot; agonizing-over-the-odds-questions - that they are interested in providing their patients with all the available relevant information.  Furthermore, insofar as obstetricians are close to the &quot;front lines&quot; of the couples&#039; anxieties over the risks to their pregnancies, they are exquisitely aware of the ultimately calming effects of these tests (which is, let us not forget, what the vast majority of screens and diagnostic tests provide).  Happily after all, most babies are born genetically normal.

Unspoken by Mr. Will is his hardly-secret agenda that abortion shouldn&#039;t be an option in the first place, except under the most extreme circumstances.  Thus his concern is very likely that early genetic testing may create philosophical allies for the pro-choice crowd, a result he is eager to prevent.  I am of the opinion that this &quot;failure to disclose&quot; on his part lessens his credibility with respect to the subject.

Equally problematic, is the obfuscation of a certain amount of self-interest that any parent of a Downs child could reasonably be expected to feel, if not to voice overtly.  Namely, if it is correct that some 85% of pregnant couples are choosing to abort genetically abnormal fetuses, then the social commitment to a safety-net for those afflicted may possibly be anticipated to erode over time as those individuals decrease in their representation in the general population.  However, before we get excited by the canard of Nazi-style eugenics, it bears repeating - over and over and over again - that the difference between the state telling you that you must abort and making that decision for yourself based on your knowledge of your own limits, is profound.</description>
		<content:encoded><![CDATA[<p>Will&#8217;s column doesn&#8217;t trouble me for its anti-genetic screening point of view, to which I believe he is fully entitled.  However his intellectual dishonesty in the use of highly charged language and manipulative framing of the question(s) hardly lends itself to a straightforward furtherance of the debate.  Implied in Mr. Will&#8217;s opening salvo is the idea that obstetricians have an interest in somehow persuading pregnant couples to choose to abort genetically abnormal fetuses, when nothing could be further from the truth.  Indeed it precisely because doctors would prefer that couples make these decisions for themselves &#8211; without the &#8220;what you do you recommend?&#8221; agonizing-over-the-odds-questions &#8211; that they are interested in providing their patients with all the available relevant information.  Furthermore, insofar as obstetricians are close to the &#8220;front lines&#8221; of the couples&#8217; anxieties over the risks to their pregnancies, they are exquisitely aware of the ultimately calming effects of these tests (which is, let us not forget, what the vast majority of screens and diagnostic tests provide).  Happily after all, most babies are born genetically normal.</p>
<p>Unspoken by Mr. Will is his hardly-secret agenda that abortion shouldn&#8217;t be an option in the first place, except under the most extreme circumstances.  Thus his concern is very likely that early genetic testing may create philosophical allies for the pro-choice crowd, a result he is eager to prevent.  I am of the opinion that this &#8220;failure to disclose&#8221; on his part lessens his credibility with respect to the subject.</p>
<p>Equally problematic, is the obfuscation of a certain amount of self-interest that any parent of a Downs child could reasonably be expected to feel, if not to voice overtly.  Namely, if it is correct that some 85% of pregnant couples are choosing to abort genetically abnormal fetuses, then the social commitment to a safety-net for those afflicted may possibly be anticipated to erode over time as those individuals decrease in their representation in the general population.  However, before we get excited by the canard of Nazi-style eugenics, it bears repeating &#8211; over and over and over again &#8211; that the difference between the state telling you that you must abort and making that decision for yourself based on your knowledge of your own limits, is profound.</p>
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		<title>By: Becky</title>
		<link>http://blogs.law.harvard.edu/infolaw/2007/01/30/information-and-eugenics/comment-page-1/#comment-3252</link>
		<dc:creator>Becky</dc:creator>
		<pubDate>Fri, 02 Feb 2007 15:55:05 +0000</pubDate>
		<guid isPermaLink="false">http://blogs.law.harvard.edu/infolaw/2007/01/30/information-and-eugenics/#comment-3252</guid>
		<description>My concern is somewhat similar to William McGeveran&#039;s and somewhat different.  My opinion is simply that this is a private matter and should in no way be a political or public issue.  Abortion and genetic testing, in my opinion, are a personal, not political question and therefore do not belong in the public arena in any capacity other than for theoretical debate.  What I do with my body is not the business of the government.  The abortion debate as a political concern has been an extremely slippery political slope with no real advantages to politicizing this issue.  Similarly, I believe mandatory genetic testing also falls into this ugly slippery slope and political action on this issue is dangerous and unproductive venture.</description>
		<content:encoded><![CDATA[<p>My concern is somewhat similar to William McGeveran&#8217;s and somewhat different.  My opinion is simply that this is a private matter and should in no way be a political or public issue.  Abortion and genetic testing, in my opinion, are a personal, not political question and therefore do not belong in the public arena in any capacity other than for theoretical debate.  What I do with my body is not the business of the government.  The abortion debate as a political concern has been an extremely slippery political slope with no real advantages to politicizing this issue.  Similarly, I believe mandatory genetic testing also falls into this ugly slippery slope and political action on this issue is dangerous and unproductive venture.</p>
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		<title>By: Derek Bambauer</title>
		<link>http://blogs.law.harvard.edu/infolaw/2007/01/30/information-and-eugenics/comment-page-1/#comment-3249</link>
		<dc:creator>Derek Bambauer</dc:creator>
		<pubDate>Thu, 01 Feb 2007 19:10:11 +0000</pubDate>
		<guid isPermaLink="false">http://blogs.law.harvard.edu/infolaw/2007/01/30/information-and-eugenics/#comment-3249</guid>
		<description>Thanks, Bill and Larisa! Bill makes two excellent points. First, being informed that the testing is available is quite different from having to be tested. Of course, the scope of available information may still shift behavior (see the literature on how available choices changes what we choose), but this is an important distinction. Second, knowing that one will have a baby with additional needs is quite important. This is linked to, but distinct from, how we think about those needs in themselves. (Will&#039;s point about the stigma attached to Down syndrome is relevant here, but doesn&#039;t exhaust the issue.)

Larisa picks up on a complex debate that I&#039;ve looked at only briefly - take, for example, questions about whether a woman would / should want to know if she carries BrCA2, the gene that makes it more than 80% likely she&#039;ll have breast cancer at some point. This is obviously a painful and difficult choice either way. I think this links to Bill&#039;s point, as simply the knowledge that this test is available will alter a woman&#039;s approach and, probably, her mental state. It&#039;s a very different world where breast cancer is a &quot;lightning strike&quot; about which one has little information or control, versus one in which you can determine with some confidence your risk.</description>
		<content:encoded><![CDATA[<p>Thanks, Bill and Larisa! Bill makes two excellent points. First, being informed that the testing is available is quite different from having to be tested. Of course, the scope of available information may still shift behavior (see the literature on how available choices changes what we choose), but this is an important distinction. Second, knowing that one will have a baby with additional needs is quite important. This is linked to, but distinct from, how we think about those needs in themselves. (Will&#8217;s point about the stigma attached to Down syndrome is relevant here, but doesn&#8217;t exhaust the issue.)</p>
<p>Larisa picks up on a complex debate that I&#8217;ve looked at only briefly &#8211; take, for example, questions about whether a woman would / should want to know if she carries BrCA2, the gene that makes it more than 80% likely she&#8217;ll have breast cancer at some point. This is obviously a painful and difficult choice either way. I think this links to Bill&#8217;s point, as simply the knowledge that this test is available will alter a woman&#8217;s approach and, probably, her mental state. It&#8217;s a very different world where breast cancer is a &#8220;lightning strike&#8221; about which one has little information or control, versus one in which you can determine with some confidence your risk.</p>
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		<title>By: William McGeveran</title>
		<link>http://blogs.law.harvard.edu/infolaw/2007/01/30/information-and-eugenics/comment-page-1/#comment-3238</link>
		<dc:creator>William McGeveran</dc:creator>
		<pubDate>Tue, 30 Jan 2007 16:36:44 +0000</pubDate>
		<guid isPermaLink="false">http://blogs.law.harvard.edu/infolaw/2007/01/30/information-and-eugenics/#comment-3238</guid>
		<description>Fascinating post, Derek!  Info/law issues are indeed everywhere.

I think it is worth elaborating a little further on the subtle distinction between mandating the testing and mandating (as the ACOG recommendation would do) that parents be &lt;em&gt;informed&lt;/em&gt; about the &lt;em&gt;availability&lt;/em&gt; of the testing and then given a choice whether they want to know that kind of information before their child is born.  My wife and I chose not to have the Down&#039;s Syndrome test when she was pregnant; thankfully, our daughter is healthy.  George Will presumably would have made the same choice, and he loves his son who has Down&#039;s Syndrome very much.  It supports autonomy to give the patients the choice of how much knowledge they want, rather than leaving it to doctors.

And by the way, there is another powerful reason that some parents might choose to have the test and gain the advance knowledge, other than Mr. Will&#039;s prediction that they will have an abortion.  Parents may want to know in advance in order to prepare themselves for the enormous challenges of caring for a disabled child, and to absorb the news so that, by the time their baby is born, he or she can be welcomed with joy.</description>
		<content:encoded><![CDATA[<p>Fascinating post, Derek!  Info/law issues are indeed everywhere.</p>
<p>I think it is worth elaborating a little further on the subtle distinction between mandating the testing and mandating (as the ACOG recommendation would do) that parents be <em>informed</em> about the <em>availability</em> of the testing and then given a choice whether they want to know that kind of information before their child is born.  My wife and I chose not to have the Down&#8217;s Syndrome test when she was pregnant; thankfully, our daughter is healthy.  George Will presumably would have made the same choice, and he loves his son who has Down&#8217;s Syndrome very much.  It supports autonomy to give the patients the choice of how much knowledge they want, rather than leaving it to doctors.</p>
<p>And by the way, there is another powerful reason that some parents might choose to have the test and gain the advance knowledge, other than Mr. Will&#8217;s prediction that they will have an abortion.  Parents may want to know in advance in order to prepare themselves for the enormous challenges of caring for a disabled child, and to absorb the news so that, by the time their baby is born, he or she can be welcomed with joy.</p>
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