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	<title>Comments on: Don&#8217;t try this at home, kids</title>
	<link>http://genomeboy.com/2007/10/25/dont-try-this-at-home-kids/</link>
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	<pubDate>Sun, 14 Mar 2010 15:16:07 +0000</pubDate>
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		<title>By: Pack of Sensations &#187; Blog Archive &#187; Gene Genie #19: Geneticalization</title>
		<link>http://genomeboy.com/2007/10/25/dont-try-this-at-home-kids/#comment-207</link>
		<author>Pack of Sensations &#187; Blog Archive &#187; Gene Genie #19: Geneticalization</author>
		<pubDate>Sun, 04 Nov 2007 11:26:26 +0000</pubDate>
		<guid>http://genomeboy.com/2007/10/25/dont-try-this-at-home-kids/#comment-207</guid>
		<description>[...] Misha Angrist at Genomeboy comments the same story in the Don’t try this at home, kids post.  [...]</description>
		<content:encoded><![CDATA[<p>[&#8230;] Misha Angrist at Genomeboy comments the same story in the Don’t try this at home, kids post.  [&#8230;]</p>
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		<title>By: Gene Genie #19: Geneticalization &#171; ScienceRoll</title>
		<link>http://genomeboy.com/2007/10/25/dont-try-this-at-home-kids/#comment-206</link>
		<author>Gene Genie #19: Geneticalization &#171; ScienceRoll</author>
		<pubDate>Sun, 04 Nov 2007 09:54:02 +0000</pubDate>
		<guid>http://genomeboy.com/2007/10/25/dont-try-this-at-home-kids/#comment-206</guid>
		<description>[...] Misha Angrist at Genomeboy comments the same story in the Don’t try this at home, kids post.  [...]</description>
		<content:encoded><![CDATA[<p>[&#8230;] Misha Angrist at Genomeboy comments the same story in the Don’t try this at home, kids post.  [&#8230;]</p>
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		<title>By: misha</title>
		<link>http://genomeboy.com/2007/10/25/dont-try-this-at-home-kids/#comment-160</link>
		<author>misha</author>
		<pubDate>Fri, 26 Oct 2007 01:42:01 +0000</pubDate>
		<guid>http://genomeboy.com/2007/10/25/dont-try-this-at-home-kids/#comment-160</guid>
		<description>And again, Brendan, nice work!</description>
		<content:encoded><![CDATA[<p>And again, Brendan, nice work!</p>
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		<title>By: misha</title>
		<link>http://genomeboy.com/2007/10/25/dont-try-this-at-home-kids/#comment-159</link>
		<author>misha</author>
		<pubDate>Fri, 26 Oct 2007 01:39:12 +0000</pubDate>
		<guid>http://genomeboy.com/2007/10/25/dont-try-this-at-home-kids/#comment-159</guid>
		<description>I've met Hal Dietz...he is a lovely guy, a gifted researcher and by all accounts a terrific clinician. I absolutely didn't mean to impugn him in the slightest. He's outstanding. Your caveats are well taken: there is a promising treatment for Marfan's thanks largely to Hal Dietz. And of course patients should avail themselves of it and of doctors like him, who are a rare and precious resource in genetics. 

I'm not naive. Sequencing is not and will not ever be a panacea. It will lead to many dead ends and probably a lot of broken hearts. 

But the Nature editorial accompanying your piece talks about how scary the DIY/Rienhoff approach is. I'm just asking the question: what exactly are we so afraid of? As a parent I think I would be infinitely more worried about my child suffering from an undiagnosed condition than I would about Joe Six Pack running a few PCRs in his basement. I just don't see how the latter is something we should be fretting about.</description>
		<content:encoded><![CDATA[<p>I&#8217;ve met Hal Dietz&#8230;he is a lovely guy, a gifted researcher and by all accounts a terrific clinician. I absolutely didn&#8217;t mean to impugn him in the slightest. He&#8217;s outstanding. Your caveats are well taken: there is a promising treatment for Marfan&#8217;s thanks largely to Hal Dietz. And of course patients should avail themselves of it and of doctors like him, who are a rare and precious resource in genetics. </p>
<p>I&#8217;m not naive. Sequencing is not and will not ever be a panacea. It will lead to many dead ends and probably a lot of broken hearts. </p>
<p>But the Nature editorial accompanying your piece talks about how scary the DIY/Rienhoff approach is. I&#8217;m just asking the question: what exactly are we so afraid of? As a parent I think I would be infinitely more worried about my child suffering from an undiagnosed condition than I would about Joe Six Pack running a few PCRs in his basement. I just don&#8217;t see how the latter is something we should be fretting about.</p>
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		<title>By: Brendan Maher</title>
		<link>http://genomeboy.com/2007/10/25/dont-try-this-at-home-kids/#comment-155</link>
		<author>Brendan Maher</author>
		<pubDate>Thu, 25 Oct 2007 20:53:02 +0000</pubDate>
		<guid>http://genomeboy.com/2007/10/25/dont-try-this-at-home-kids/#comment-155</guid>
		<description>Thanks for your kind words.  I'd love to talk with you further about this, as I think this is just the first wave of many more efforts to come.  I'd also love to find out more about your proverbial 'jeremiah.'  

In defense of Dietz, I don't think the essence of his argument was predicated on the fear of outsiders encroaching on his territory.  Rather he seemed sincerely worried that such efforts would distract parents and patients and divert resources away from more immediately available treatments. He struck me as a very thoughtful and caring clinician.  It may some day be cheap to sequence genes, but at the moment, it's not, and I hope the story shows that sequence doesn't necessarily provide clear answers.
 
Rienhoff admitted he kind of waffled on this point by not putting up instructions to sequence DNA.  He is quite positive about the promise such grass-roots efforts hold.  He was quoted, not long ago in the Economist as saying something along the lines of "If you can make a soufle, you can do this."  Nevertheless, he defers to Dietz is in part because he respects him and wants to be sure that his daughter will still have access to him and doctors like him.

Cheers!</description>
		<content:encoded><![CDATA[<p>Thanks for your kind words.  I&#8217;d love to talk with you further about this, as I think this is just the first wave of many more efforts to come.  I&#8217;d also love to find out more about your proverbial &#8216;jeremiah.&#8217;  </p>
<p>In defense of Dietz, I don&#8217;t think the essence of his argument was predicated on the fear of outsiders encroaching on his territory.  Rather he seemed sincerely worried that such efforts would distract parents and patients and divert resources away from more immediately available treatments. He struck me as a very thoughtful and caring clinician.  It may some day be cheap to sequence genes, but at the moment, it&#8217;s not, and I hope the story shows that sequence doesn&#8217;t necessarily provide clear answers.</p>
<p>Rienhoff admitted he kind of waffled on this point by not putting up instructions to sequence DNA.  He is quite positive about the promise such grass-roots efforts hold.  He was quoted, not long ago in the Economist as saying something along the lines of &#8220;If you can make a soufle, you can do this.&#8221;  Nevertheless, he defers to Dietz is in part because he respects him and wants to be sure that his daughter will still have access to him and doctors like him.</p>
<p>Cheers!</p>
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