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	<title>Comments on: On selection and disability</title>
	<link>http://genomeboy.com/2008/10/29/on-selection-and-disability/</link>
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	<pubDate>Fri, 10 Feb 2012 12:54:52 +0000</pubDate>
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		<title>By: David Pendleton King</title>
		<link>http://genomeboy.com/2008/10/29/on-selection-and-disability/#comment-5892</link>
		<author>David Pendleton King</author>
		<pubDate>Thu, 20 Nov 2008 04:15:35 +0000</pubDate>
		<guid>http://genomeboy.com/2008/10/29/on-selection-and-disability/#comment-5892</guid>
		<description>I agree with the sense that PGD will happen to some degree, no matter what regulations might be imposed by government.  And I would imagine that decisions about PGD for particular traits would at first reflect society's views of what's disease vs normal variation, but could over time alter those views should the process gain momentum.  

Ultimately, though, I think the focus will be primarily on relatively rare mendelian traits, where such traits are clearly considered to be and commonly accepted as deleterious.  Even then, though, the long-term effect of the procedure will be poorly understood, which may limit acceptance.  I don't think natural variation would come to a halt, and besides, we've been interupting human natural selection for a while already (Darwin Awards notwithstanding!).  

I think it will be difficult to apply PGD to most of the common complex genetic disorders that are so multifactorial and polygenic (and problematic).  In fact, polymorphisms that increase risk for one disease can be protective for another, and the genome is integrative in ways that we barely understand now, so deciding what to select becomes quite difficult!  All of this doesn't even consider the important point you raise about epigenetics, etc.  

The proliferation of personal sequenced genomes (thanks for sharing!) should have a profound impact on what we consider to be genetic risks, assuming that this information teaches us about hidden aspects of heritability.  When common genetic variation can apparently explain so little, seeing many genomes should be illuminating (again, thanks!)  

One final point (and I come with no particular religious ax to grind) - how do we reconcile the notion that we can treat a pre-implantation embryo as a potential patient whom we might diagnose, with the idea that the same (roughly) collection of cells provides a potentially valuable reagent for medical research.  Technology can create serious conundrums!  

ps. It was nice to speak with you at ASHG.  Hope you're enjoying Durham - I'm still a little envious!</description>
		<content:encoded><![CDATA[<p>I agree with the sense that PGD will happen to some degree, no matter what regulations might be imposed by government.  And I would imagine that decisions about PGD for particular traits would at first reflect society&#8217;s views of what&#8217;s disease vs normal variation, but could over time alter those views should the process gain momentum.  </p>
<p>Ultimately, though, I think the focus will be primarily on relatively rare mendelian traits, where such traits are clearly considered to be and commonly accepted as deleterious.  Even then, though, the long-term effect of the procedure will be poorly understood, which may limit acceptance.  I don&#8217;t think natural variation would come to a halt, and besides, we&#8217;ve been interupting human natural selection for a while already (Darwin Awards notwithstanding!).  </p>
<p>I think it will be difficult to apply PGD to most of the common complex genetic disorders that are so multifactorial and polygenic (and problematic).  In fact, polymorphisms that increase risk for one disease can be protective for another, and the genome is integrative in ways that we barely understand now, so deciding what to select becomes quite difficult!  All of this doesn&#8217;t even consider the important point you raise about epigenetics, etc.  </p>
<p>The proliferation of personal sequenced genomes (thanks for sharing!) should have a profound impact on what we consider to be genetic risks, assuming that this information teaches us about hidden aspects of heritability.  When common genetic variation can apparently explain so little, seeing many genomes should be illuminating (again, thanks!)  </p>
<p>One final point (and I come with no particular religious ax to grind) - how do we reconcile the notion that we can treat a pre-implantation embryo as a potential patient whom we might diagnose, with the idea that the same (roughly) collection of cells provides a potentially valuable reagent for medical research.  Technology can create serious conundrums!  </p>
<p>ps. It was nice to speak with you at ASHG.  Hope you&#8217;re enjoying Durham - I&#8217;m still a little envious!</p>
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		<title>By: Shenna McBride</title>
		<link>http://genomeboy.com/2008/10/29/on-selection-and-disability/#comment-5713</link>
		<author>Shenna McBride</author>
		<pubDate>Wed, 19 Nov 2008 04:25:01 +0000</pubDate>
		<guid>http://genomeboy.com/2008/10/29/on-selection-and-disability/#comment-5713</guid>
		<description>In response to Nicole Sztokman, I find it a bit odd that not a single person in your biomedical ethics class shared your views.  Personally, I tend to ride the fence on this particular point because both sides have such compelling arguments.  I do agree with you in that the child, who was born to benefit the older sibling, will ultimately grow up feeling used to some extent.  I also believe that it depends on how you raise that child as well.  Obviously if you treat them as second class there will be these psychological issues, but if you raise that child to be equal of the older sibling, I feel that it would be less of an issue.  I, too, think that if this technique is not abused ,it will yield great results in helping children who would have otherwise died, live a full life.</description>
		<content:encoded><![CDATA[<p>In response to Nicole Sztokman, I find it a bit odd that not a single person in your biomedical ethics class shared your views.  Personally, I tend to ride the fence on this particular point because both sides have such compelling arguments.  I do agree with you in that the child, who was born to benefit the older sibling, will ultimately grow up feeling used to some extent.  I also believe that it depends on how you raise that child as well.  Obviously if you treat them as second class there will be these psychological issues, but if you raise that child to be equal of the older sibling, I feel that it would be less of an issue.  I, too, think that if this technique is not abused ,it will yield great results in helping children who would have otherwise died, live a full life.</p>
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		<title>By: Nick Reaves</title>
		<link>http://genomeboy.com/2008/10/29/on-selection-and-disability/#comment-5644</link>
		<author>Nick Reaves</author>
		<pubDate>Tue, 18 Nov 2008 20:16:00 +0000</pubDate>
		<guid>http://genomeboy.com/2008/10/29/on-selection-and-disability/#comment-5644</guid>
		<description>I agree with Sam as far as our tendencies in making decisions as humans.  Often, we ignore historical trends or the possibility of future consequences in order to make decisions that suite us best in the present.  I think the average person that hears about any form of genetic engineering only sees it as a great new technology with tremendous positive possibilities.  This being said, I believe it must be regulated strongly.   However, I also agree very strongly with Hsien's stance as a parent and I'm sure most parents would share her feelings as well.  If the technology is available, who wouldn't want to prevent their child from receiving any type of disease?</description>
		<content:encoded><![CDATA[<p>I agree with Sam as far as our tendencies in making decisions as humans.  Often, we ignore historical trends or the possibility of future consequences in order to make decisions that suite us best in the present.  I think the average person that hears about any form of genetic engineering only sees it as a great new technology with tremendous positive possibilities.  This being said, I believe it must be regulated strongly.   However, I also agree very strongly with Hsien&#8217;s stance as a parent and I&#8217;m sure most parents would share her feelings as well.  If the technology is available, who wouldn&#8217;t want to prevent their child from receiving any type of disease?</p>
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		<title>By: Aaron Tripp</title>
		<link>http://genomeboy.com/2008/10/29/on-selection-and-disability/#comment-5633</link>
		<author>Aaron Tripp</author>
		<pubDate>Tue, 18 Nov 2008 19:26:33 +0000</pubDate>
		<guid>http://genomeboy.com/2008/10/29/on-selection-and-disability/#comment-5633</guid>
		<description>I agree with Stephen one hundred percent.  It is the diversity among us that has allowed us to grow as a species.  Natural selection can not operate if there is no diversity for it to select from.  I agree with the people that wrote that we should do as much as we can to help a child from suffering, but on a certain level, we have to take into account the long term effects of everything we do.  So, while the genetic engineering of babies might seem to be beneficial from the aspect of eliminating immediate "suffering," from the aspect of natural selection, it can only be viewed as detrimental.</description>
		<content:encoded><![CDATA[<p>I agree with Stephen one hundred percent.  It is the diversity among us that has allowed us to grow as a species.  Natural selection can not operate if there is no diversity for it to select from.  I agree with the people that wrote that we should do as much as we can to help a child from suffering, but on a certain level, we have to take into account the long term effects of everything we do.  So, while the genetic engineering of babies might seem to be beneficial from the aspect of eliminating immediate &#8220;suffering,&#8221; from the aspect of natural selection, it can only be viewed as detrimental.</p>
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		<title>By: Geoffrey Rutledge</title>
		<link>http://genomeboy.com/2008/10/29/on-selection-and-disability/#comment-4458</link>
		<author>Geoffrey Rutledge</author>
		<pubDate>Fri, 07 Nov 2008 17:58:49 +0000</pubDate>
		<guid>http://genomeboy.com/2008/10/29/on-selection-and-disability/#comment-4458</guid>
		<description>HI,
I'm an academic physician (formerly at Harvard and Stanford) who found your blog while looking for the best health writers. I think your writing is great! I would like to feature you on &lt;a href="www.wellsphere.com" rel="nofollow"&gt;Wellsphere&lt;/a&gt;, a top 10 health website that has well over 2 million visitors monthly.  

If you would like to learn more, just drop me an email.</description>
		<content:encoded><![CDATA[<p>HI,<br />
I&#8217;m an academic physician (formerly at Harvard and Stanford) who found your blog while looking for the best health writers. I think your writing is great! I would like to feature you on <a href="www.wellsphere.com" rel="nofollow">Wellsphere</a>, a top 10 health website that has well over 2 million visitors monthly.  </p>
<p>If you would like to learn more, just drop me an email.</p>
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		<title>By: Dana Waring</title>
		<link>http://genomeboy.com/2008/10/29/on-selection-and-disability/#comment-4454</link>
		<author>Dana Waring</author>
		<pubDate>Fri, 07 Nov 2008 15:33:44 +0000</pubDate>
		<guid>http://genomeboy.com/2008/10/29/on-selection-and-disability/#comment-4454</guid>
		<description>Dr Korey's students: I have really enjoyed reading your comments.  Part of why I think this is an important discussion to have is because you are all going to be faced with sorting this all out - in your jobs as scientists, doctors, lawyers or policy people, and of course, for a few of you - this might be something you may find yourself thinking about as you start your own families.   In looking at the comments, I see a lot of thinking about the issue of fairness and regulation. These two issues go hand in hand.  There are some health plans that cover PGD with HLA typing (Blue Cross Blue Shield of Mass is one that I know of). But, for the most part - if you can afford it, you can use it - and for whatever purpose you want, within the still limited but improving and expanding technology.   As Misha points out, an outright ban on the procedure will lead to simply making it available only to the super-wealthy, who will go abroad and pay privately to countries without bans or less restrictions. That doesn't sound like much of a solution to me.  

Have a look at www.dnapolicy.org - they have done a lot of research about public attitudes regarding PGD.  This, in combination with a growing body of literature about the scientific risks and limits, could form the basis for a sane and productive policy discussion. President-elect Obama is interested in these issues - his  Personalized Medicine and Genomics Act is in the Senate at the moment. (see www.thomas.gov to read more)

Finally, one last point:  The stats can be a bit fuzzy, but somewhere in the order of 1/3 of all U.S. births are thought to be the result of an unintended pregnancy! My point is that the fear of widespread "designer babies" doesn't much take into account the fact that babies are made by humans, and that human behavior can be difficult to predict.</description>
		<content:encoded><![CDATA[<p>Dr Korey&#8217;s students: I have really enjoyed reading your comments.  Part of why I think this is an important discussion to have is because you are all going to be faced with sorting this all out - in your jobs as scientists, doctors, lawyers or policy people, and of course, for a few of you - this might be something you may find yourself thinking about as you start your own families.   In looking at the comments, I see a lot of thinking about the issue of fairness and regulation. These two issues go hand in hand.  There are some health plans that cover PGD with HLA typing (Blue Cross Blue Shield of Mass is one that I know of). But, for the most part - if you can afford it, you can use it - and for whatever purpose you want, within the still limited but improving and expanding technology.   As Misha points out, an outright ban on the procedure will lead to simply making it available only to the super-wealthy, who will go abroad and pay privately to countries without bans or less restrictions. That doesn&#8217;t sound like much of a solution to me.  </p>
<p>Have a look at <a href="http://www.dnapolicy.org" rel="nofollow">www.dnapolicy.org</a> - they have done a lot of research about public attitudes regarding PGD.  This, in combination with a growing body of literature about the scientific risks and limits, could form the basis for a sane and productive policy discussion. President-elect Obama is interested in these issues - his  Personalized Medicine and Genomics Act is in the Senate at the moment. (see <a href="http://www.thomas.gov" rel="nofollow">www.thomas.gov</a> to read more)</p>
<p>Finally, one last point:  The stats can be a bit fuzzy, but somewhere in the order of 1/3 of all U.S. births are thought to be the result of an unintended pregnancy! My point is that the fear of widespread &#8220;designer babies&#8221; doesn&#8217;t much take into account the fact that babies are made by humans, and that human behavior can be difficult to predict.</p>
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		<title>By: Hsien Lei</title>
		<link>http://genomeboy.com/2008/10/29/on-selection-and-disability/#comment-4440</link>
		<author>Hsien Lei</author>
		<pubDate>Fri, 07 Nov 2008 02:18:18 +0000</pubDate>
		<guid>http://genomeboy.com/2008/10/29/on-selection-and-disability/#comment-4440</guid>
		<description>I think McKibben's an alarmist too but he does it in such grand style that it's worth reading. 

No ASHG for me this year. In fact, I haven't been to a meeting in almost 10 years. What a loser.... :D</description>
		<content:encoded><![CDATA[<p>I think McKibben&#8217;s an alarmist too but he does it in such grand style that it&#8217;s worth reading. </p>
<p>No ASHG for me this year. In fact, I haven&#8217;t been to a meeting in almost 10 years. What a loser&#8230;. <img src='http://genomeboy.com/wp-includes/images/smilies/icon_biggrin.gif' alt=':D' class='wp-smiley' /></p>
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		<title>By: misha</title>
		<link>http://genomeboy.com/2008/10/29/on-selection-and-disability/#comment-4429</link>
		<author>misha</author>
		<pubDate>Thu, 06 Nov 2008 20:34:18 +0000</pubDate>
		<guid>http://genomeboy.com/2008/10/29/on-selection-and-disability/#comment-4429</guid>
		<description>Thanks for stopping by, Hsien! Are you going to ASHG?

I happen to think McKibben  is way off base--he sounds like Leon Kass. I'm a lot more worried about birth defects and epigenetic problems stemming from PGD than I am about any type of GATTACA scenario.</description>
		<content:encoded><![CDATA[<p>Thanks for stopping by, Hsien! Are you going to ASHG?</p>
<p>I happen to think McKibben  is way off base&#8211;he sounds like Leon Kass. I&#8217;m a lot more worried about birth defects and epigenetic problems stemming from PGD than I am about any type of GATTACA scenario.</p>
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		<title>By: Hsien Lei</title>
		<link>http://genomeboy.com/2008/10/29/on-selection-and-disability/#comment-4422</link>
		<author>Hsien Lei</author>
		<pubDate>Thu, 06 Nov 2008 16:01:26 +0000</pubDate>
		<guid>http://genomeboy.com/2008/10/29/on-selection-and-disability/#comment-4422</guid>
		<description>FYI, in the US, the title of McKibben's book is &lt;a href="http://www.amazon.com/Enough-Staying-Human-Engineered-Age/dp/0805075194/ref=sr_1_8?ie=UTF8&#38;s=books&#38;qid=1225987199&#38;sr=8-8" rel="nofollow"&gt;Enough: Staying Human in an Engineered Age&lt;/a&gt;.</description>
		<content:encoded><![CDATA[<p>FYI, in the US, the title of McKibben&#8217;s book is <a href="http://www.amazon.com/Enough-Staying-Human-Engineered-Age/dp/0805075194/ref=sr_1_8?ie=UTF8&amp;s=books&amp;qid=1225987199&amp;sr=8-8" rel="nofollow">Enough: Staying Human in an Engineered Age</a>.</p>
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		<title>By: Hsien Lei</title>
		<link>http://genomeboy.com/2008/10/29/on-selection-and-disability/#comment-4421</link>
		<author>Hsien Lei</author>
		<pubDate>Thu, 06 Nov 2008 15:57:52 +0000</pubDate>
		<guid>http://genomeboy.com/2008/10/29/on-selection-and-disability/#comment-4421</guid>
		<description>Speaking as a parent, if I had a strong family history of a debilitating, painful, life-shortening disease, I'd do all I can to prevent my kids from getting it too. Prior to PGD, perhaps the only option for people with such a family history was to NOT have children at all. A difficult choice.

Speaking as a scientist,  I have the same concerns as many of you that the procedure occurs in a milieu that may cause future problems for these children. Even children born of IVF which is a well-accepted technique nowadays may face more health problems than the average population. That's not to say, however, that they do not enjoy a good quality of life so who's to say whether IVF or PGD are good or bad in this respect?

With respect to PGD pushing us faster down the road towards genetically engineering our offspring, I'd recommend &lt;a href="http://www.amazon.co.uk/Enough-Genetic-Engineering-Human-Nature/dp/0747565430" rel="nofollow"&gt;Enough: Genetic Engineering and the End of Human Nature&lt;/a&gt; by Bill McKibben. He thinks that we are already dangerously close to being able to stipulate what traits we want our children to have. McKibben says that any form of genetic engineering could make us wonder who we really are - the product of our genes or the product of our hard work, self-reliance, and inspiration?</description>
		<content:encoded><![CDATA[<p>Speaking as a parent, if I had a strong family history of a debilitating, painful, life-shortening disease, I&#8217;d do all I can to prevent my kids from getting it too. Prior to PGD, perhaps the only option for people with such a family history was to NOT have children at all. A difficult choice.</p>
<p>Speaking as a scientist,  I have the same concerns as many of you that the procedure occurs in a milieu that may cause future problems for these children. Even children born of IVF which is a well-accepted technique nowadays may face more health problems than the average population. That&#8217;s not to say, however, that they do not enjoy a good quality of life so who&#8217;s to say whether IVF or PGD are good or bad in this respect?</p>
<p>With respect to PGD pushing us faster down the road towards genetically engineering our offspring, I&#8217;d recommend <a href="http://www.amazon.co.uk/Enough-Genetic-Engineering-Human-Nature/dp/0747565430" rel="nofollow">Enough: Genetic Engineering and the End of Human Nature</a> by Bill McKibben. He thinks that we are already dangerously close to being able to stipulate what traits we want our children to have. McKibben says that any form of genetic engineering could make us wonder who we really are - the product of our genes or the product of our hard work, self-reliance, and inspiration?</p>
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