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	<title>ethics &#8211; Greg Laden&#039;s Blog</title>
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	<title>ethics &#8211; Greg Laden&#039;s Blog</title>
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		<title>How to do any genetic research you want without getting permission.</title>
		<link>https://gregladen.com/blog/2013/08/21/how-to-do-any-genetic-research-you-want-without-getting-permission/</link>
					<comments>https://gregladen.com/blog/2013/08/21/how-to-do-any-genetic-research-you-want-without-getting-permission/#comments</comments>
		
		<dc:creator><![CDATA[Greg Laden]]></dc:creator>
		<pubDate>Thu, 22 Aug 2013 02:20:37 +0000</pubDate>
				<category><![CDATA[ethics]]></category>
		<category><![CDATA[Genetics]]></category>
		<category><![CDATA[IRB]]></category>
		<guid isPermaLink="false">http://scienceblogs.com/gregladen/?p=17516</guid>

					<description><![CDATA[Let&#8217;s say you want to do a market-related study in which you gain entry to one thousand homes representing sets of people defined by the usual variables of income, ethnicity, urban-suburban lifestyle etc. The first thing you do is to ask a few people, real nice like, if you can go through their stuff and &#8230; <a href="https://gregladen.com/blog/2013/08/21/how-to-do-any-genetic-research-you-want-without-getting-permission/" class="more-link">Continue reading <span class="screen-reader-text">How to do any genetic research you want without getting permission.</span> <span class="meta-nav">&#8594;</span></a>]]></description>
										<content:encoded><![CDATA[<p>Let&#8217;s say you want to do a market-related study in which you gain entry to one thousand homes representing sets of people defined by the usual variables of income, ethnicity, urban-suburban lifestyle etc. The first thing you do is to ask a few people, real nice like, if you can go through their stuff and take a lot of photographs and notes. Most of them say no, and you perhaps even discover that the one or two who actually agree to this are odd ducks. So you go to Plan B.  This involves breaking into the homes when the people are out so you can get your data despite the fact that they don&#8217;t want to participate. But you get caught and can&#8217;t do that any more. So, now you are faced with the reality that your research plans are done for.</p>
<p>But wait, there is a way to get similar data without needing any permission from anyone and it is not illegal, and in fact, it could actually be cheaper and easier than your original proposal and, while it may not provide the same exact results, it could even provide BETTER results.  Let&#8217;s call it Plan C.</p>
<p>Plan C involves looking at every iteration of every single Google Street View picture ever taken anywhere in the US at any time. All of them.  The vast majority of these photographs will show you nothing, but every here and there, you will get some data. There will be a shot that shows a thing in an open window, or an open door, or an open garage, or being carried into our out of a person&#8217;s house, being delivered, thrown out on the curb, sold in a garage sale, sitting on the lawn after an explosion or fire, or in use (especially yard and garden implements). This is not the same thing as sampling hundreds of houses once each, looking at all contents. But it is sampling the homes lived in by hundreds of millions of people, and sampling them dozens of times over a few years.  That could be some amazing data.</p>
<p>And nobody can stop you from studying this source of information or doing this research. If someone does try to stop you with silly regulations from a University or something, just change into a Journalist. Then you&#8217;re golden. It would be WRONG to stop a journalist from using this information!</p>
<p>Turns out that this works with genes, but even better. One might want to study the relationship between a putative genetic marker and a possible behavioral thing, like maybe a psychiatric disorder or something, in a genetically bottle necked tribal group somewhere. You can try to get permission to do this, and maybe you&#8217;ll get it. Maybe you won&#8217;t get permission but you can certainly steal the genetic data from some place and do the research anyway. But people will get mad at you and you&#8217;ll not get any more research money.</p>
<p>Or, you can go to Plan C.</p>
<p>Here&#8217;s how Plan C works with genes. We have a good idea of the distribution of many genetic markers that have to do with geographical patterns over time.  (Some people would use the term &#8220;race&#8221; in that sentence but that&#8217;s incorrect and unnecessary.)  So, something like &#8220;East Asian&#8221; or &#8220;Native South American&#8221; or &#8220;Central African&#8221; or whatever has a list of genetic markers that go with it. Genes are supposed to &#8220;independently assort&#8221; and act all random and all, but they don&#8217;t.  At the finest level, on chromosomes, genetic markers that are near each other travel together because of &#8220;linkage.&#8221;  More importantly, genes move in populations. So, those East Asian genetic markers are not going to get all mixed up with the Central African genetic markers too often. Also, if you have enough samples, some mixing up doesn&#8217;t matter all that much.</p>
<p>So, if you want to study a disease-related &#8220;gene&#8221; (allele, a variant of a gene, really), if you think such a thing exists, you can effectively study it in a small population of repressed brown people who, tired of repression and exploitation decided to be totally unfair to you and not give you their blood, by looking at the association of LBP (&#8220;little brown people&#8221;) markers and the alleles of interest. It does not even matter if many of those marker associations are found in totally non LBP people. They are still associated. Genetic lineages are the thing, not human lineages. Humans are merely reasonable approximations of genes, really.  Or at least, you can make a case for the associations and get your research funded and published without asking anybody any permissions for anything, just using giant available genetic databases.  OK, so, maybe this is not &#8220;any genetic research you want.&#8221; But it is without permission!</p>
<p>This all sounds very nefarious but may not be. Or maybe it is. I&#8217;ll leave that to the ethicists.</p>
<p>By the way, if you are interesting in a big fight on the Internet about genetic research, ethics, &#8220;IRB&#8221; permissions, LBP&#8217;s and science and so on and so forth, I recommend the following, in the order suggested.</p>
<p>First, read this blog post: <a href="http://blogs.plos.org/dnascience/2013/08/15/is-the-havasupai-indian-case-a-fairy-tale/">Is the Havasupai Indian Case a Fairy Tale?</a> by Ricki Lewis (and if you have time, along with it, <a href="http://blogs.plos.org/dnascience/2013/08/08/hela-the-havasupai-and-informed-consent/">this related blog post</a>)</p>
<p><strong>DON&#8217;T READ THE COMMENTS YET</strong></p>
<p>Then, read this blog post:<a href="http://anthropomics2.blogspot.com/2013/08/the-empire-strikes-back.html"> The Empire Strikes Back</a> by Jonathan Marks</p>
<p>Then, go back to the first blog post (<a href="http://blogs.plos.org/dnascience/2013/08/15/is-the-havasupai-indian-case-a-fairy-tale/">Is the Havasupai Indian Case a Fairy Tale?</a>) and read the comments.</p>
<p>Then, report back here and tell me what you think. Especially about that last comment on the PLOS blog post.</p>
<p>Have a nice evening!</p>
<hr />
<p>Photo Credit: <a href="http://www.flickr.com/photos/24647279@N03/2511778076/">tapasparida</a> via <a href="http://compfight.com">Compfight</a> <a href="http://www.flickr.com/help/general/#147">cc</a></p>
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		<post-id xmlns="com-wordpress:feed-additions:1">17516</post-id>	</item>
		<item>
		<title>No Coke, No Pepsi Either?</title>
		<link>https://gregladen.com/blog/2010/07/11/no-coke-no-pepsi-either/</link>
					<comments>https://gregladen.com/blog/2010/07/11/no-coke-no-pepsi-either/#comments</comments>
		
		<dc:creator><![CDATA[Greg Laden]]></dc:creator>
		<pubDate>Sun, 11 Jul 2010 13:14:48 +0000</pubDate>
				<category><![CDATA[Uncategorized]]></category>
		<category><![CDATA[ethics]]></category>
		<category><![CDATA[Pepsi Frontiers]]></category>
		<guid isPermaLink="false">http://scienceblogs.com/gregladen/2010/07/11/no-coke-no-pepsi-either/</guid>

					<description><![CDATA[In which I suggest a way that Pepsigate could have been different. I think PepsiCo&#8217;s research scientists have something to say that I want to listen to. So do the scientists at Coke. And Cargill. The reason I think this is that some of my own research involves diet and nutrition, and I assume that &#8230; <a href="https://gregladen.com/blog/2010/07/11/no-coke-no-pepsi-either/" class="more-link">Continue reading <span class="screen-reader-text">No Coke, No Pepsi Either?</span> <span class="meta-nav">&#8594;</span></a>]]></description>
										<content:encoded><![CDATA[<p>In which I suggest a way that <a href="http://scienceblogs.com/clock/2010/07/the_pepsigate_linkfest.php">Pepsigate</a> could have been different.</p>
<p>I think PepsiCo&#8217;s research scientists have something to say that I want to listen to.  So do the scientists at Coke.  And Cargill.  The reason I think this is that some of my own research involves diet and nutrition, and I assume that the bench scientists working in the food industry are busy figuring stuff out at the molecular and biochemical level that I would not mind knowing.<br />
<span id="more-8303"></span><br />
Strike that:  I <em>know</em> they are figuring stuff out.  A few years back I had the honor and pleasure of being asked to give the keynote speech at a conference run by the European Union&#8217;s equivalent of the American FDA.  The conference was attended by food sciences working for a mixture of government agencies, academic institutions, and private companies. There was some interesting stuff going on that had to do with the fact that some of the scientists were working for <em>Da Man</em> (one group was a nearly exclusive subcontractor of one of the super-major giant multinationals, not Pepsi).  But there was nothing that happened that interfered, in the context of that highly specialized and small conference, with the exchange of ideas about important issues facing the specific areas of food science addressed there.</p>
<p>Are the research scientists of private corporations important? Do they do real work, make real contributions, or are they mainly involved in marketing and working up falsified reports to use in the courtroom to mitigate the effects of law suits, and to blunt the effectiveness of government regulation?  Well, I don&#8217;t know. There&#8217;s always the old Bell Labs to point to, AT&amp;T&#8217;s research group.  The Bell Lab philosophy, at least according to post hoc idealized rhetoric but probably also the real thing, was to give the squints all the labby stuff they needed and let them come up with cool stuff.  Some of that stuff would benefit Ma Bell, other discoveries not so much.  Only by letting the scientists pursue the questions they stumbled across while pursuing other questions, and following their own interests and using their own talents, would great things happen. And great things did happen.  The Unix Operating System happened.  Radio telescopes happened.  The transistor and the laser, and seven Nobel Prizes, happened.</p>
<p>So that&#8217;s good. But then, there&#8217;s the tobacco industry.  I&#8217;m also familiar with a lot of their research because of my interest in plant-animal interaction.  It turns out that tobacco is so good (as in addictive and pleasurable) because of chemistry that has to do with anti-herbivore defense. Also, anti-herbivore defense is simply important to any plant-growing industry.  So, we know more about the animal-plant interaction of tobacco&#8217;s nicotine and coffee and tea&#8217;s caffeine than any other system.  But, you know most of those tobacco industry scientists (including their fully paid up subcontractors) were mainly working on making cigarettes more addictive while proving more conclusively that they were not, and covering up the dangers of smoking while developing methods of making ciggs that in many cases made them more of a health risk.</p>
<p>But still, imagine Scienceblogs back in 19-whatever and the very young <a href="http://scienceblogs.com/scienceisculture/">Adam Bly</a> arranges for a Bell Lab Blog, written by Arno A. Penzias and Robert W. Wilson (of cosmic background radiation fame).  What would happen?  Well, the sociocultural response would be fear and loathing.  I promise you that we all hated AT&amp;T back then at least as much as we hate PepsiCo today.  AT&amp;T really was trying to take over the world, and was involved in political activities nefarious beyond anything PepsiCo&#8217;s<em> Secret Division of E-vile Deeds and Plots</em> could ever imagine.  But among scientists, who despite the occasional Communist Plot to avoid  world  nuclear destruction and such were probably more apolitical than today, the interaction may have been welcome. But the modern world, and the blogosphere in particular, is a place where these different sub-worlds are reasonably well mixed (though there are lumps in the mix that allow, for instance, sciencebloggers to be nearly random as to which commercial sponsors they get mad at and by how much). Science is culture, and culture is often dynamic.</p>
<p>Now, before we go any father, I want to point out something very important about the PepsiCo blog that was to be on Scienceblogs.com.  That blog was not about bench science, the molecular biology and biochemistry of food, or the science of nutrition.  It was about some other thing having to do with PepsiCo making the world a better place. The blog, though run by scientists, was part of PepsiCo&#8217;s current <em>Hands Across Da Blah Blah Blah Initiative</em>, ultimately designed to make us believe that they are interested in <em>&#8220;a healthier future for people and our planet&#8221; blah blah blah</em>.</p>
<p>What? Me? Cynical?</p>
<p>A truly e-vile plot, making the world a better place.  Or, subtextually, making everyone think PepsiCo is making the world a better place for people, while it was really making the world a better place for Pepsi. Well, no, it is quite possible for a major corporation to actually make the world a better place by simply sinking money into the appropriate initiatives.  The problem with the PepsiCo initiative is that they are trying to work through the nutrition angle, and they are a &#8220;food&#8221; company that specializes in junk food.  That just can&#8217;t happen without an internal conflict of interest, and the only way to solve that conflict of interest is to reshape the &#8220;save the world&#8221; initiative to serve the corporate demands.  They should have done something totally different.  Build art museums and inner city parks or something.</p>
<p>Meanwhile, I think that almost everyone who can exploit this current initiative should do so, take the money and do something to lead us towards a healthier future.  School teachers, boyscout troops, middle school environmentalist clubs.  But be careful and keep your head above the rhetoric. You&#8217;d be working with a corporation that for decades has played a major role in <em>causing</em> most of our nutrition problems in many parts of the world.  You are now the small change being dropped on the ground while the guilt-money is being paid out.  But you can exploit that if you keep your perspective.</p>
<p>And, there may well be a place for this initiative to emerge on a place like scienceblogs.  Here&#8217;s how:  Scienceblogs could start a new blog with three or four existing sciencebloggers at the helm, individuals interested in food, nutrition, healthy eating, locivory, etc. We have an excellent cadre of such individuals.  PepsiCo could be invited  to also provide two or three bloggers to join in.  Although PepsiCo&#8217;s bloggers may well be sending in blog posts that are vetted or overseen in some way, that would just be part of a stream of discussions on relevant issues.  The corporation would be acting, in a way, as the person it legally is, but that &#8216;person&#8217; would be on square and even footing with actual people not beholden to a corporate board of directors or stockholders. This would be spectacular and would probably have palpable, interesting results.  After all, when a group of bloggers get together they tend to go after each other&#8217;s throats  instead of the throats of their obvious common enemies.  Here, we get <a href="http://scienceblogs.com/casaubonsbook/">Sharon Astyk</a> and Professor PepsiCo in the same room talking about the same topic for two months.  A fight would ensue, and if it didn&#8217;t get too sophistic or immature (which it probably wouldn&#8217;t with Sharon at the helm), that would be cool.</p>
<p>PepisCo would benefit from sticking their pinkie into such a crucible for a while.  And Scienceblogs would have a shot at a new kind of engagement.</p>
<p>But that kind of exchange would not really lead to the increased involvement of industry <em>scientists</em> in the broader discussion.  In the context of the blogosphere, where everyone can see you, that sort of exchange may not be allowable by a large corporation.  As we speak, a comment that I made on <a href="http://foodfrontiers.pepsicoblogs.com/2010/07/starting-the-conversation/">PepsiCo&#8217;s own version of the blog-that-could-not-be</a> is, I suspect, sitting in the email inbox of designated members of the marketing and outreach units who oversee that blog.  My comment is a question:  What kind of internal oversight do you have, who besides the named author of the blog is involved in vetting or checking what is written by said author?  Others asked similar questions on that blog post (but I was the only one being polite about it).  On Monday morning, I assume these questions will be reviewed by this corporate committee and an answer composed, checked again, and published.  The main question for them will be, &#8220;do we tell them the truth, lie, or is there a way to say this painlessly that is not really a lie.&#8221;  Right?</p>
<p>That is not very bloggy.  In fact, it is anti-bloggy.</p>
<p>But that does not mean that there is not a way for industry-ensconced researchers to be involved in the public conversation about science.  My personal feeling is that a place like Scienceblogs.com (or maybe an entirely unrelated entity, but there might be some ethically clean cash flow in this, so in my view Sb should look into it) could create a separate web entity that has highly limited and controlled linkage with the science blogosphere, but that acts essentially as a bloggy trade journal.  The articles written in trade journals tend to be corporate-managed and often self serving, but also of use to others.  They are to aftermarket books what short stories are to novels.  Have you ever purchased a book on how to use a particular piece of software &#8230; something published by QUE or some similar publisher?  Well, there is a certain chance that the book you purchased was written by employees of the company that produces the software, the very same individuals who wrote the official manual and help system.  This is simply a way in which that company can get more information on how to use their products out there, capture some of the potentially lucrative after-market book business, and possibly have an extgra positive voice or two about their product.  Slimy? Maybe, depending on how it is done.  Useful? Yes. You know it is useful because you own some of those books.</p>
<p>But while you may feel burned to learn that your 38 dollar aftermarket book is a knock-off of the free help system, and you may feel extra burned that nowhere on the book does it say this, trade journals are different.  People who read trade journals know they are reading trade journals.  They know that when John Deere puts out an article on how to adapt it&#8217;s older model tractors to pulling the latest harrow, they want you to buy the latest harrow and keep using John Deere products. But, they also tell you how to do this important thing you need to do, and if you keep up your subscription to <em>Today&#8217;s Farmer</em>, you&#8217;ll also get to read the letters to the editor two months later by people who tried the harrow thing and have additional helpful suggestions on that topic.</p>
<p>It is quite possible that you, dear reader, are unfamiliar with trade journals.  If that is the case, please don&#8217;t judge my suggestion until you check them out.  <a href="http://en.wikipedia.org/wiki/Trade_journal">Trade journals</a> are widespread but have such specialized markets that you may never encounter one depending on what you do for a living.</p>
<p>If you do know about trade journals, you&#8217;ll also know that there have been controversies.  There is nothing wrong with trade journals, and in fact, they are good things that help make the world go round and all. But there have been instances of trade journals pretending to be something else, or perhaps innocently &#8220;blurring lines.&#8221;  For instance, the trade journal <em>BioTechniques</em> is said to print peer-reviewed articles that are actually authored by employees of major advertisers. That journal, <em>BioTechniques</em>, has been referenced in blog posts and comments on blog posts on Scienceblogs.com <a href="http://www.google.com/cse?cx=017254414699180528062%3Auyrcvn__yd0&#038;q=biotechniques&#038;sa.x=0&#038;sa.y=0&#038;sa=search">approximately nine times</a> according to a google search. In one case, a major publishing company produced a trade journal perfectly disguised as a medical journal. Well, not really perfectly.  <a href="http://www.google.com/cse?cx=017254414699180528062%3Auyrcvn__yd0&#038;q=Australasian+Journal+of+Bone+and+Joint+Medicine&#038;sa.x=0&#038;sa.y=0&#038;sa=search">Sciencebloggers noticed.</a></p>
<p>But for the most part, trade journals are obvious for what they are, are no more evil than a clearly marked paid ad in a magazine, the directions that came with your alarm clock that you regret throwing out in the recycling, or classified ads specific to a certain business or industry.  Scienceblogs.com (or some other place) could host a bloggy on line trade journal for industry scientists, paid for by those scientists, with a regular but modest overflow of profits for the larger corporation (because it is, after all, a corporation) which we bloggers can than lobby for access to, to turn into bits of swag or, say, high school student essay contest awards, or other good stuff.</p>
<p>Scienceblogs.com is a private corporation.  So is the company that made the computer you are using.  So is the company that made the browser you are using, and even if you are running that browser on Linux, an OpenSource operating system, your OS is probably also produced by a private corporation. Even non-profit corporations have bottom line requirements (&#8220;non-profit&#8221; does not mean &#8220;free&#8221; or &#8220;loss&#8221; as many people seem to assume). We are already existing in a world where there are bottom-line related motives and requirements.  We Sblings and our readers have managed so far.   The PepsiCo blog maneno was, in my view,  the accidental intrusion of trade content into a world of OpenAccess content. I am very pleased that the community&#8217;s immune response was effective, but we are all suffering the post-infection exhaustion.  When that passes and we rebuild our energy again, let&#8217;s look into the trade publication idea.</p>
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