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	<title>Berman Institute Bioethics Bulletin &#187; Features</title>
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	<link>http://bioethicsbulletin.org</link>
	<description>Bioethics News &#38; Analysis from Johns Hopkins</description>
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		<title>Fiction Owes Nothing to Scientific Accuracy</title>
		<link>http://bioethicsbulletin.org/archive/fiction-owes-nothing-to-scientific-accuracy/#utm_source=rss&amp;utm_medium=rss&amp;utm_campaign=fiction-owes-nothing-to-scientific-accuracy</link>
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		<pubDate>Wed, 16 May 2012 21:02:58 +0000</pubDate>
		<dc:creator>Bioethics Bulletin</dc:creator>
				<category><![CDATA[Daniel O'Connor]]></category>
		<category><![CDATA[Features]]></category>
		<category><![CDATA[accuracy]]></category>
		<category><![CDATA[bioethics]]></category>
		<category><![CDATA[BITE]]></category>
		<category><![CDATA[Girls]]></category>
		<category><![CDATA[HBO]]></category>
		<category><![CDATA[science]]></category>
		<category><![CDATA[tv]]></category>

		<guid isPermaLink="false">http://bioethicsbulletin.org/?p=9551</guid>
		<description><![CDATA[If viewers can’t tell that Hannah from HBO's 'Girls' is a horrible source of medical information, then we’ve got way bigger worries than her HPV inaccuracies]]></description>
			<content:encoded><![CDATA[<p><em>By <a href="http://www.google.com/url?sa=t&amp;rct=j&amp;q=&amp;esrc=s&amp;source=web&amp;cd=1&amp;ved=0CGYQFjAA&amp;url=http%3A%2F%2Fwww.bioethicsinstitute.org%2Fmshome%2F%3FID%3D113&amp;ei=_Be0T9LBFIS46QG908HhDw&amp;usg=AFQjCNEvESlQw_nmCVUzA6ufuwc-0OelgQ&amp;sig2=lVglpUD_5hPzQqOl0UZxeQ">Dan O’Connor, PhD</a></em></p>
<p><br class="spacer_" /></p>
<p>Let’s start with a quick multiple choice question. You are seeking reliable, impartial information about a sensitive health issue. Which of the following is your source of choice?</p>
<p><br class="spacer_" /></p>
<p style="padding-left: 30px;">A) Your family physician</p>
<p style="padding-left: 30px;">B) A recognised medical specialist who has been recommended to you by a friend</p>
<p style="padding-left: 30px;">C) The Internet</p>
<p style="padding-left: 30px;">D) HBO’s critically acclaimed sitcom ‘<a href="http://well.blogs.nytimes.com/author/roni-caryn-rabin/">Girls</a>’</p>
<p style="padding-left: 30px;"> </p>
<p>If your answer is ‘D’ then you are either in sore need of a long, hard look at your life choices, or you are the putative subject of a recent <a href="http://well.blogs.nytimes.com/2012/05/14/tv-show-girls-adds-to-the-muddle-on-hpv-testing/"><em>New York Times</em> blog</a>.</p>
<p><br class="spacer_" /></p>
<p><a href="http://well.blogs.nytimes.com/author/roni-caryn-rabin/">Roni Caryn Rabin</a>, the blogger in question, worries that the latest episode of HBO’s ‘Girls’ is ‘rife with misinformation about HPV’. In short, the sitcom’s self-centered central character, Hannah, finds out she has HPV and goes into a ego-absorbed meltdown, fuelled by false ideas about what the diagnosis means (having her ‘cervix scraped out’ due to ‘pre-cancer’ for a start). Rabin’s problem seems to be that no-one in the show corrects the reliably awful Hannah’s assumptions about HPV: “Viewers easily absorb health messages that are embedded in a narrative, research shows. Inaccurate information offered in a story format is recalled more readily than the real facts received during sex education classes or from a doctor.”</p>
<p><br class="spacer_" /></p>
<p>Let us take a moment at this point to applaud the admirable restraint of the HBO spokeswoman who was called upon to respond to Rabin’s assertion that maybe ‘the show’s creators just don’t care too much for the facts’. With magisterial self-possession came the response: ‘We respect your feedback on ‘Girls’ but must remind you that it is a comedy series and one which we hope people won’t go to for medical advice’.</p>
<p><br class="spacer_" /></p>
<p>As the kids say: ‘<a href="http://www.urbandictionary.com/define.php?term=this">This</a>’.</p>
<p><br class="spacer_" /></p>
<p>Firstly: Fiction, such as ‘Girls’, has no responsibility to be scientifically accurate. Fiction has one duty: to entertain through story telling. Fiction may <em>wish</em> to reflect scientific truth (hence the presence of medical advisors on shows like <em>Grey’s Anatomy</em> and legal experts on shows like <em>The Good Wife</em>), but they have no moral responsibility to do so. Fiction need only reflect scientific truth when to do otherwise would be to undermine the story and make it unbelievable. Those medical and legal experts aren’t there for moral reasons; they’re there to make sure the story doesn’t look silly. A story in which someone gets HIV by shaking hands with an AIDS patient wouldn’t pass muster because it is stupid. A story in which an ignorant character <em>worried</em> that they might get HIV thusly wouldn’t be stupid at all. Which leads to:</p>
<p><br class="spacer_" /></p>
<p>Secondly: Inaccuracy does not imply endorsement. Showing a character who smokes does not mean that the writers and producers believe that smoking is OK. It just means that the character, like lots of people, smokes. That’s it. So when a character like Hannah from ‘Girls’ knows nothing about HPV, the show is not peddling ‘misinformation’ about HPV, it is peddling accurate information about how stupid Hannah is as a character. The story isn’t ‘this is what happens when you have HPV’, rather it is ‘this is how a certain person might react’. Just because a fictional character says something, it a) doesn’t mean the storytellers believe it, and b) doesn’t mean you have to believe it either.</p>
<p><br class="spacer_" /></p>
<p>Finally: The supposed problem is that people believe what they see on TV. The answer to this is, far too often, to change what’s on TV. Surely it would be a greater boon to society to change how people reacted to what they see on TV? Health campaigners look at the controversy over the ‘Girls’ episode and see a dangerous message. I look at the controversy over the ‘Girls’ episode and see a worrying inability of people to dstinguish between a hipster sitcom and the <em>New England Journal of Medicine</em>. It’s not the fiction we should be worrying about, it’s the fact that (supposedly) people think it’s true.</p>
<p><br class="spacer_" /></p>
<p>If viewers can’t tell that Hannah is a <em>horrible</em> source of medical information, then we’ve got way bigger worries than her HPV inaccuracies.</p>
<p><br class="spacer_" /></p>
<p><img class="alignleft" src="http://www.bioethicsinstitute.org/admin/MicroSites/bioImages/113_Dan_OConnor.jpg" alt="" width="87" height="87" /></p>
<p><em><a href="http://www.bioethicsinstitute.org/mshome/?ID=113">Dan O’Connor</a> – Research Scientist, Faculty, Johns Hopkins Berman Institute of Bioethics. Dan has two main research areas: the ethics of social media in healthcare and historicising the ethics of emerging diseases</em></p>
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		<item>
		<title>William Stubing Receives Meyerhoff Award</title>
		<link>http://bioethicsbulletin.org/archive/william-stubing-receives-meyerhoff-award-2/#utm_source=rss&amp;utm_medium=rss&amp;utm_campaign=william-stubing-receives-meyerhoff-award-2</link>
		<comments>http://bioethicsbulletin.org/archive/william-stubing-receives-meyerhoff-award-2/#comments</comments>
		<pubDate>Fri, 11 May 2012 18:00:21 +0000</pubDate>
		<dc:creator>leahr</dc:creator>
				<category><![CDATA[Features]]></category>

		<guid isPermaLink="false">http://bioethicsbulletin.org/?p=9442</guid>
		<description><![CDATA[William C. Stubing accepted the Harvey M.. Meyerhoff Leadership in Bioethics Award from the Johns Hopkins Berman Institute of Bioethics at its National Advisory Board meeting and luncheon.]]></description>
			<content:encoded><![CDATA[<p>The Johns Hopkins Berman Institute of Bioethics honored William C. Stubing, president of <a href="http://www.greenwall.org/" target="_blank">The Greenwall Foundation</a> from 1989 &#8211; 2011, with the Harvey M. Meyerhoff Leadership in Bioethics Award at a luncheon on May 9, 2012.  Stubing is the third recipient of the honor, named for the Berman Institute&#8217;s chairman emeritus, who also attended the luncheon.  As president of The Greenwall Foundation, Stubing supported bioethics programs across the country and contributed to the training of dozens of leaders in the field through the Berman Institute&#8217;s Greenwall Fellowship program.</p>
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<p>Previous recipients of the Meyerhoff Award are Daniel Callahan, cofounder and President of The Hastings Center from 1969 -1996, and Albert R. Johnson, co-director of the Program in Medicine and Human Values at California Pacific Medical Center.</p>
<p><br class="spacer_" /></p>
<p>Below are some special moments from the 2012 luncheon.</p>

<a href='http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC000641.jpg' title='Berman Institute director Ruth Faden introduces honoree William C. Stubing '><img width="150" height="150" src="http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC000641-150x150.jpg" class="attachment-thumbnail" alt="" title="Berman Institute director Ruth Faden introduces honoree William C. Stubing" /></a>
<a href='http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC000731.jpg' title='William C. Stubing unveils the Meyerhoff Award while Berman Institute director Ruth Faden looks on.'><img width="150" height="150" src="http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC000731-150x150.jpg" class="attachment-thumbnail" alt="" title="William C. Stubing unveils the Meyerhoff Award while Berman Institute director Ruth Faden looks on." /></a>
<a href='http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC000751.jpg' title='William C. Stubing accepts the Harvey M. Meyerhoff Leadership in Bioethics Award.'><img width="150" height="150" src="http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC000751-150x150.jpg" class="attachment-thumbnail" alt="" title="William C. Stubing accepts the Harvey M. Meyerhoff Leadership in Bioethics Award." /></a>
<a href='http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC00081.jpg' title='William C. Stubing told luncheon attendees he had &quot;mixed feelings&quot; about the honor because he so admired the previous honorees.'><img width="150" height="150" src="http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC00081-150x150.jpg" class="attachment-thumbnail" alt="" title="William C. Stubing told luncheon attendees he had &quot;mixed feelings&quot; about the honor because he so admired the previous honorees." /></a>
<a href='http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC00089.jpg' title='Matthew DeCamp, a Greenwall Fellow at the Berman Institute, gave a presentation on intergenerational justice after the luncheon.'><img width="150" height="150" src="http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC00089-150x150.jpg" class="attachment-thumbnail" alt="" title="Matthew DeCamp, a Greenwall Fellow at the Berman Institute, gave a presentation on intergenerational justice after the luncheon." /></a>
<a href='http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC000901.jpg' title='Greenwall Fellow Matthew DeCamp gives a presentation on intergenerational justice after the luncheon'><img width="150" height="150" src="http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC000901-150x150.jpg" class="attachment-thumbnail" alt="" title="Greenwall Fellow Matthew DeCamp gives a presentation on intergenerational justice after the luncheon" /></a>
<a href='http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC00097.jpg' title='The Harvey M. Meyerhoff Leadership in Bioethics Award'><img width="150" height="150" src="http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC00097-150x150.jpg" class="attachment-thumbnail" alt="" title="The Harvey M. Meyerhoff Leadership in Bioethics Award" /></a>
<a href='http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC00100.jpg' title='William C. Stubing (L) and Harvey M. Meyerhoff with the Meyerhoff Leadership in Bioethics Award'><img width="150" height="150" src="http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC00100-150x150.jpg" class="attachment-thumbnail" alt="" title="William C. Stubing (L) and Harvey M. Meyerhoff with the Meyerhoff Leadership in Bioethics Award" /></a>
<a href='http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC00105.jpg' title='William Stubing and Harvey &quot;Bud&quot; Meyerhoff share a laugh after the luncheon'><img width="150" height="150" src="http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC00105-150x150.jpg" class="attachment-thumbnail" alt="" title="William Stubing and Harvey &quot;Bud&quot; Meyerhoff share a laugh after the luncheon" /></a>
<a href='http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC00112.jpg' title='BI Deputy Director Jeffrey Kahn talks with Board member Stephanie Greenberg'><img width="150" height="150" src="http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC00112-150x150.jpg" class="attachment-thumbnail" alt="" title="BI Deputy Director Jeffrey Kahn talks with Board member Stephanie Greenberg" /></a>
<a href='http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC00114.jpg' title='Faculty member Maria Merritt (L) talks with Advisory Board Development Chair Lynn Deering'><img width="150" height="150" src="http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC00114-150x150.jpg" class="attachment-thumbnail" alt="" title="Faculty member Maria Merritt (L) talks with Advisory Board Development Chair Lynn Deering" /></a>
<a href='http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC00117.jpg' title='The Spring 2012 National Advisory Board Meeting and Award Luncheon is adjourned'><img width="150" height="150" src="http://bioethicsbulletin.org/wp-content/uploads/2012/05/DSC00117-150x150.jpg" class="attachment-thumbnail" alt="" title="The Spring 2012 National Advisory Board Meeting and Award Luncheon is adjourned" /></a>

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		<title>Health Care in Danger: First Steps at Symposium</title>
		<link>http://bioethicsbulletin.org/archive/health-care-in-danger/#utm_source=rss&amp;utm_medium=rss&amp;utm_campaign=health-care-in-danger</link>
		<comments>http://bioethicsbulletin.org/archive/health-care-in-danger/#comments</comments>
		<pubDate>Fri, 27 Apr 2012 16:31:34 +0000</pubDate>
		<dc:creator>Bioethics Bulletin</dc:creator>
				<category><![CDATA[Features]]></category>
		<category><![CDATA[Leonard Rubenstein]]></category>
		<category><![CDATA[bioethics]]></category>
		<category><![CDATA[conflict]]></category>
		<category><![CDATA[geneva convention]]></category>
		<category><![CDATA[harm]]></category>
		<category><![CDATA[health care]]></category>
		<category><![CDATA[len rubenstein]]></category>

		<guid isPermaLink="false">http://bioethicsbulletin.org/?p=9214</guid>
		<description><![CDATA[Berman Institute Faculty member Leonard Rubenstein discuss health care in conflicts (Video)]]></description>
			<content:encoded><![CDATA[<p>
<object style="height: 390px; width: 640px;" classid="clsid:d27cdb6e-ae6d-11cf-96b8-444553540000" width="100" height="100" codebase="http://download.macromedia.com/pub/shockwave/cabs/flash/swflash.cab#version=6,0,40,0"><param name="allowFullScreen" value="true" /><param name="allowScriptAccess" value="always" /><param name="src" value="http://www.youtube.com/v/q3lIAoRntHQ?version=3&amp;feature=player_detailpage" /><param name="allowfullscreen" value="true" /><embed style="height: 390px; width: 640px;" type="application/x-shockwave-flash" width="100" height="100" src="http://www.youtube.com/v/q3lIAoRntHQ?version=3&amp;feature=player_detailpage" allowscriptaccess="always" allowfullscreen="true"></embed></object>
</p>
<p><br class="spacer_" /></p>
<p><a href="http://www.bioethicsinstitute.org/index.asp">Johns Hopkins Berman Institute</a> Faculty Member, <a href="http://www.bioethicsinstitute.org/mshome/?id=149">Len Rubenstein</a>, joins experts an ICRC symposium in London to <a href="http://www.icrc.org/eng/resources/documents/feature/2012/health-care-in-danger-feature-2012-04-25.htm">discuss a response</a> to &#8220;a problem that denies health care to tens of thousands every year, causes untold unnecessary deaths and worsens the suffering of the sick and wounded caught up in conflict.&#8221;</p>
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		<title>Islamic Bioethics</title>
		<link>http://bioethicsbulletin.org/archive/islamic-bioethics/#utm_source=rss&amp;utm_medium=rss&amp;utm_campaign=islamic-bioethics</link>
		<comments>http://bioethicsbulletin.org/archive/islamic-bioethics/#comments</comments>
		<pubDate>Wed, 25 Apr 2012 20:49:02 +0000</pubDate>
		<dc:creator>Bioethics Bulletin</dc:creator>
				<category><![CDATA[Features]]></category>
		<category><![CDATA[bioethics]]></category>
		<category><![CDATA[conference]]></category>
		<category><![CDATA[islam]]></category>
		<category><![CDATA[Islamic Bioethics]]></category>
		<category><![CDATA[Muslim]]></category>

		<guid isPermaLink="false">http://bioethicsbulletin.org/?p=9168</guid>
		<description><![CDATA[Reflections on an Islamic Bioethics conference and emerging Muslim perspectives on bioethics]]></description>
			<content:encoded><![CDATA[<p><em>By Raafay Syed</em></p>
<p><br class="spacer_" /></p>
<p>I recently had the opportunity to attend a <a href="http://www.yale.edu/cir/">conference</a> on Islamic Bioethics at Yale University. I went in expecting to learn more information about how bioethical dilemmas might be responded to from an Islamic perspective. Surprisingly, I walked out with deep confusion regarding what “Islamic Bioethics” even means, let alone what the Islamic positions are on various topics.</p>
<p><br class="spacer_" /></p>
<p>The conference was organized into three panels composed of three or four presenters each. The panels were then followed by a round-table discussion in which <a href="http://research.brown.edu/research/profile.php?id=1216148812">Sherine Hamdy</a>, Assistant Professor of Anthropology at Brown University, synthesized the major points of the presenters and subsequently critiqued them.</p>
<p><br class="spacer_" /></p>
<p>It was in this context that Hamdy first raised the question of what we mean when we talk about “Islamic bioethics,” a phrase that had been used so loosely throughout the conference but had not been adequately explored.</p>
<p><br class="spacer_" /></p>
<p>While she didn’t offer her own definition, she pointed out why it is important to think about the way in which we use the phrase. She noted that our discourse regarding Islamic bioethics should be situated in the socio-political contexts in which Muslims live alongside non-Muslims.</p>
<p><br class="spacer_" /></p>
<p>According to Hamdy, when we adopt such a standpoint, the following question is pressed upon us: By carving out a distinct domain for Islamic bioethics and focusing on legal, or textual, arguments from within the tradition, are we (Muslims) at risk of “otherizing” ourselves further, and excluding ourselves from participating in the broader bioethical discussions in secular public life?</p>
<p><br class="spacer_" /></p>
<p><a href="http://artsandsciences.virginia.edu/religiousstudies/people/aas.html">Dr. Abdulaziz Sachedina’s</a> keynote speech also touched on very fundamental concerns. He started by making a key distinction between “Islamic ethics” and “Islamic law” claiming that the latter has only limited use in bioethics methodology while the former represents the way to move forward. He also emphasized the need to develop a more robust framework of Islamic theological ethics and incorporate this model into our moral education.</p>
<p><br class="spacer_" /></p>
<p>The fundamental concerns raised by Hamdy and Sachedina allowed many in the audience to appreciate the complexity and diversity involved in Islamic bioethics. At the same time, many members of the audience were frustrated at the fact that they were not able to receive clear and straightforward answers to questions such as, “What is the Islamic position on abortion?” Non-Muslim clinicians often have Muslim patients and want to know the answers to these questions to be able to deliver care with appropriate sensitivity to the needs of their patients.</p>
<p><br class="spacer_" /></p>
<p>This tension between the appreciation of complexity and uncertainty on the one hand and the need for concrete guidance on the other, was a key issue throughout the conference.</p>
<p><br class="spacer_" /></p>
<p>Based on my brief exposure to Islamic bioethics at this conference, I am left with the impression that the field is still in its infancy and is attempting to define its identity. As it develops and grows, the most important and formative questions are all up for grabs for any one willing to stick their neck out and make a contribution.</p>
<p><br class="spacer_" /></p>
<p><em><a style="border-image: initial; font-style: inherit; font-family: inherit; vertical-align: baseline; color: #000000; padding: 0px; margin: 0px; border: 0px initial initial;" rel="attachment wp-att-6944" href="http://bioethicsbulletin.org/wp-content/uploads/2011/11/RaafaySyed.jpg" rel="facebox"><img class="alignleft" style="margin-top: 0px; margin-right: 1em; margin-bottom: 1em; margin-left: 0px; padding-top: 8px; padding-right: 8px; padding-bottom: 8px; padding-left: 0px; border-style: initial; font-style: inherit; font-family: inherit; vertical-align: baseline; border-width: initial;" title="RaafaySyed" src="http://bioethicsbulletin.org/wp-content/uploads/2011/11/RaafaySyed-150x150.jpg" alt="" width="105" height="105" /></a>Raafay Syed is an undergraduate intern at the Johns Hopkins Berman Institute of Bioethics, and is majoring in Philosophy and Public Health Studies. He is primarily interested in virtue ethics, research ethics involving the cognitively impaired, and philosophical issues related to end-of-life care.</em></p>
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<p>________________________________________________________________________________________________________________</p>
<blockquote><p style="padding-left: 30px;">Islamic Bioethics 101</p>
<p style="padding-left: 30px;"> </p>
<p style="padding-left: 30px;"><span style="color: #333333;">Islamic bioethics or better yet, Muslim perspectives on bioethics is an emerging field, far more in its infancy then, say, Christian or Jewish perspectives on bioethics.  By and large, early explorations into bioethical questions arguably originate in Jewish and Christian thought, whereas Islamic thought is only now beginning to contribute to the contemporary bioethics discourse though its <a href="http://en.wikipedia.org/wiki/Medicine_in_the_medieval_Islamic_world">engagement with medicine</a> is centuries old.  I make the distinction between “Islamic bioethics” and “Muslim perspectives on bioethics” to highlight a serious issue of <a href="http://books.google.com/books?id=QPvoTjDn0B4C&amp;pg=PA8&amp;dq=methods+in+medical+ethics+essentialism&amp;hl=en&amp;sa=X&amp;ei=LDCYT_yuEOmN6QHVpf2CBw&amp;ved=0CDIQ6AEwAA#v=onepage&amp;q=methods%20in%20medical%20ethics%20essentialism&amp;f=false">essentialism</a> that often emerges when trying to discuss an entire religion as being timeless and ahistorical with clear, unchanging “opinions” and “laws.”  Muslims, on one hand, can be understood as those who ascribe to a certain definition or understanding of Islam.  Muslims, like members of all faiths, vary significantly in their opinions and philosophical positions, yet they share something that connects them all under the identity of “Muslim.”  Islam, on the other hand, in its most abstract form, is a concept that can be understood as a civilization, religion, culture, philosophy, etc.  Hence, there is no particular <a href="http://en.wikipedia.org/wiki/Normative">normative</a> position that can be ascribed to Islam without first asking the more <a href="http://en.wikipedia.org/wiki/Meta">meta</a> question, “what <em>is</em> Islam?”  Outside of this inquiry, many arguments attempting to provide the “Islamic position” fall into a fallacy of ambiguity, i.e., <a href="http://www.answersingenesis.org/articles/2009/08/03/logical-fallacies-reification">reification</a>.  We must be very critical of arguments that begin with “Islam says” and that are made without any previous qualifier.  Islam is not a concrete thing that speaks or holds positions, rather, Muslims hold opinions and values that they ascribe as being “Islamic.”  Furthermore, Muslims are not <a href="http://dictionary.reference.com/browse/homogeneous">homogeneous</a>, so the way in which we study Muslim communities and populations needs to be very cognizant and acknowledging of the <a href="http://www.amazon.com/Muslim-Medical-Ethics-Practice-Comparative/dp/1570037531">diversity</a>.</span></p>
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<p style="padding-left: 30px;"><span style="color: #333333;">For sake of brevity, I will continue using “Islamic bioethics” though I mean Muslim perspectives on bioethical issues.  Islamic bioethics scholarship is in need of two important developments.  First, a normative position needs to be established that serves a more <a href="http://plato.stanford.edu/entries/ethics-deontological/">deontological</a> role.  Currently, traditional juridical scholars control the domain of prescribing what is or what is not permissible in the legal sense, relying heavily on the works of four primary scholars from the 7<sup>th</sup> and 8<sup>th</sup> century.  Much of the scholarship in Islamic bioethics, as it is seen among Shari’a or juridical councils, is devoid of any ethical inquiry and heavily reliant on legal interpretations of religious texts.(1)  If we begin to understand Islam as a type of deontology, we can start outlining specific principles and virtues that can be later referenced when examining ethical dilemmas.  Second, more <a href="http://en.wikipedia.org/wiki/Descriptive_ethics">descriptive ethics</a> work is required to expand the understanding of the unique issues various Muslims face in healthcare or research settings.  Descriptive work can inform what Muslims believe about morality, how their beliefs change with time, how they behave in situations of moral distress, how well do they comply to existing moral norms or normative Islamic values, etc.  Descriptive work lends itself to informing our understanding of normative arguments, testing the empirical components of normative theory, and even helps demonstrate the implementation of a normative idea/standard. (2)</span></p>
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<p style="padding-left: 30px;"><span style="color: #333333;">Islam, as a tradition over time is immensely rich with medical history/innovation, philosophical thought, legal theory, etc.  Secular bioethics as a field can expand meaningfully with the inclusion of Islamic thought, the same way it gained initially from the inclusion of Christian and Jewish thought.  But before this begins, those interested in Islamic bioethics must begin to set definitions, create frameworks, examine the history of <a href="http://www.nlm.nih.gov/hmd/arabic/arabichome.html">Islamic medicine</a>, and explore Muslim populations further.</span></p>
<p style="padding-left: 30px;"><span style="color: #333333;"><br class="spacer_" /></span></p>
<p style="padding-left: 30px;"><span style="color: #333333;">- Abbas Rattani</span></p>
<p style="padding-left: 30px;"> </p>
<p style="padding-left: 30px;"><span style="color: #333333;">1. Sachedina A. </span><a href="http://books.google.com/books?id=9f7YhsTNEqUC&amp;lpg=PP1&amp;dq=Islamic%20Biomedical%20Ethics&amp;pg=PP1#v=onepage&amp;q&amp;f=false">Islamic      Biomedical Ethics: Principles and Application</a><span style="color: #333333;">. New York: Oxford      University Press, 2009.</span></p>
<p style="padding-left: 30px;"><span style="color: #333333;"> </span><span style="color: #333333;">2. Sulmasy DP, Sugarman      J. </span><a href="http://books.google.com/books?id=QPvoTjDn0B4C&amp;lpg=PR5&amp;dq=%22The%20many%20methods%22%20of%20medical%20ethics%20(or%2C%20thirteen%20ways%20of%20looking%20at%20a%20blackbird)&amp;pg=PA3#v=onepage&amp;q&amp;f=false">The      many methods of medical ethics (or, thirteen ways of looking at a      blackbird)</a><span style="color: #333333;">, in Methods in Medical Ethics, Ed. Jeremy Sugarman and      Daniel P. Sulmasy.  Washington D.C.:      Georgetown University Press, 2010.</span></p>
<p><span style="color: #333333;"><br />
 </span></p>
<p style="border-image: initial; font-size: 14px; vertical-align: baseline; color: #333333; line-height: 21px; background-color: #f5f5f5; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 30px; margin: 0px;"><img class="alignleft" style="margin-top: 0px; margin-right: 1em; margin-bottom: 1em; margin-left: 0px; padding-top: 8px; padding-right: 8px; padding-bottom: 8px; padding-left: 0px; font-style: inherit; font-family: inherit; vertical-align: baseline;" src="data:image/jpg;base64,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" alt="" width="62" height="62" /></p>
<p style="border-image: initial; font-size: 14px; vertical-align: baseline; color: #333333; line-height: 21px; background-color: #f5f5f5; padding-top: 0px; padding-right: 0px; padding-bottom: 0px; padding-left: 30px; margin: 0px;"><em><span style="color: #333333;"><strong><a style="border-image: initial; font-weight: inherit; font-style: inherit; font-family: inherit; vertical-align: baseline; color: #0054a4; padding: 0px; margin: 0px; border: 0px initial initial;" href="http://www.bioethicsinstitute.org/mshome/?ID=145">Abbas Rattani</a></strong>, MBe, is a research program coordinator at the Johns Hopkins Berman Institute of Bioethics. One of his interests is in Islamic perspectives of bioethics.</span></em></p>
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</blockquote>
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		<title>Pulling The Plug</title>
		<link>http://bioethicsbulletin.org/archive/pulling-the-plug/#utm_source=rss&amp;utm_medium=rss&amp;utm_campaign=pulling-the-plug</link>
		<comments>http://bioethicsbulletin.org/archive/pulling-the-plug/#comments</comments>
		<pubDate>Wed, 18 Apr 2012 18:05:54 +0000</pubDate>
		<dc:creator>Bioethics Bulletin</dc:creator>
				<category><![CDATA[Features]]></category>
		<category><![CDATA[Leah Ramsay]]></category>
		<category><![CDATA[advance directive]]></category>
		<category><![CDATA[bioethics]]></category>
		<category><![CDATA[dnr]]></category>
		<category><![CDATA[living will]]></category>
		<category><![CDATA[myra christopher]]></category>
		<category><![CDATA[q&a]]></category>

		<guid isPermaLink="false">http://bioethicsbulletin.org/?p=9072</guid>
		<description><![CDATA[Patient advocate and advance care planning pioneer Myra Christopher shares the background and personal motivation behind a ‘cultural change’ in medicine]]></description>
			<content:encoded><![CDATA[<p><span style="font-style: italic;">Patient advocate and advance care planning pioneer Myra Christopher shares the background and personal motivation behind a ‘cultural change’ in medicine</span></p>
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<p><img class="alignright" src="http://www.practicalbioethics.org/images/staff/myra-christopher.jpg" alt="Myra Christopher" width="120" height="175" /><span style="font-size: large;"><span style="font-size: medium;">“I want you to pull the plug.”</span> </span> This somewhat crass but pervasive reference to end of life decision making is so familiar that it might be difficult to imagine not having the right to refuse medical treatment.   <a href="http://www.practicalbioethics.org/about/staff.html#christopher">Myra Christopher</a>, founding President and current Kathleen M. Foley Chair for Pain and Palliative Care at the <a href="http://www.practicalbioethics.org/index.html">Center for Practical Bioethics</a>, however, remembers well.  She has been on the front lines advocating for and helping to draft policy for patient self-determination since the 1960’s.  We sat down with her on the eve of the 19<sup>th</sup> Annual <a href="http://gazette.jhu.edu/2012/04/16/renowned-patient-advocate-to-give-19th-shallenberger-lecture/">Shallenberger Lecture in Ethics</a> to get some background on the issue and the roots of her personal passion for patients’ rights at the end of life.</p>
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<p><strong>Berman Institute:</strong> First, some basics – what is meant by ‘advance care planning,’ and why is it so important?</p>
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<p><strong> </strong></p>
<p><strong>Christopher:</strong> Usually, advance directives are about refusal of treatment. But it’s fair game, in my opinion, for people to say in an advance directive ‘I want it all.’  And it’s fair game for people to say ‘I don’t want one,’ for whatever reason they may have.</p>
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<p>The history of advance care planning has, in many ways, been parallel to an important time in medical history.  The impetus for advance care planning was that we had this newfound capacity to support bodily function almost indefinitely, and we didn’t really know what to do with that.  The law and ethics almost always run behind the technology; science charges ahead, and then people are trying to figure it out.  As a society we thought the way to deal with this was a legalistic solution.  It was about passing the laws, having notaries and witnesses and gold seals.  That’s not what this is about.  This is really about coming to a place in medicine where almost everyone understands that the only way to know if you are making the right choice for someone is if you know what their values and their goals are. Then you [as a medical professional], with your knowledge and expertise, support them in a shared decision on how to best honor this person.</p>
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<p><strong>BI:</strong> How did you get started working on advance care planning?</p>
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<p><strong>Christopher:</strong> The Center for Practical Bioethics started a hospital ethics committee consortium in 1986, which meets every other month and is now the oldest in the country. Over and over people would come to the meetings with terrible cases of very frail, elderly people who were rushed to the emergency room and they ended up in terrible situations, were the wishes of the family and sometimes even personal physician were not being followed – heartrending tales.   And I said, “I think we can fix that.”</p>
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<p>So we [at the Center for Practical Bioethics] decided we would bring together the Bar association, the med society, the nursing association and faith leaders together and that we would, as a community, come up with a single living will document that would be recognizable in any institution, and get volunteers who would do community education about this.</p>
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<p>But when we were ready to figure out how to market this and “entice” people to talk about end of life issues, the <a href="http://www.nytimes.com/1990/12/27/us/nancy-cruzan-dies-outlived-by-a-debate-over-the-right-to-die.html?pagewanted=all&amp;src=pm">Cruzan case</a> became a matter of public debate and discussion. And so we didn’t need to market…anything. It was sort of omnipresent in the community.</p>
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<p>Through our work with this community group – which we think was the first community-based approach to advance care planning in the country – we were asked to help draft legislation for the <a href="http://thomas.loc.gov/cgi-bin/query/z?c101:H.R.4449.IH:">Patient Self-Determination Act</a>.</p>
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<p><strong>BI:</strong> Why is this an important issue, in general, and for you personally?</p>
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<p><strong>Christopher:</strong> I do the work that I do because of the illness and death of my mother, when she was in her early 50’s.  She died of a rare stomach cancer in 1975.  There were no hospices at that time.  We wanted to honor her wishes, and she wanted to die at home.  And so we did&#8230; it was quite, quite a challenge.  My mom really directed her care, and we did it her way.  Although it was incredibly difficult, it really was a very powerful time in the life of my family.</p>
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<p>And so, I stood at my mom’s graveside on the ranch where she grew up, and I promised myself that I would work on this for the rest of my life. And I’ve tried to be true to that.</p>
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<p>So patient rights were really my introduction to this issue, and I think that is why it is so important – because the voice that never gets included is the voice of the person struggling with illness, and/or their family. If you really want to address ethical issues in healthcare, if you really want to reform policy, you absolutely have to have the knowledge of those who have lived these issues, and experience the vulnerability and the losses.</p>
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<p><strong>BI:</strong> The question we put to you for this lecture was, “how do we close the gap?”</p>
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<p><strong>Christopher:</strong> Well, the reason I’ve written the end to this [lecture] three or four times is it depends on what that question implies.  If you look at the most recent data from the CDC, about whom this is most relevant – elderly people with advanced illness – the numbers [of people with and advance directive] are as high as they are going to get. They almost all have them.</p>
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<p>The numbers we keep coming back to [low percentages of people with an advanced care plan] refer to the general adult population, 18 and over. The cases that make news, like <a href="http://www.nejm.org/doi/full/10.1056/NEJMp058062">Terri Schiavo</a>, Cruzan, <a href="http://www.wired.com/science/discoveries/news/2008/06/dayintech_0611">Quinlan</a> – those are anomalies.  The real issue is elderly people with multiple chronic illnesses, in the last chapter of their lives.</p>
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<p>Really I think the most important thing is that we’ve seen a cultural change in medicine itself.<strong> </strong>Mike Garland at the University of Oregon Health Sciences has said to me over the years, “Quit fretting about the number. What you’re really looking for is social transformation and cultural change, in medicine and in society at large.” And by and large, people get it.</p>
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<p><strong>BI:</strong> We have made progress, but we still have some of the same issues we started with, like naming a surrogate and having meaningful conversations.  Isn’t that part of the gap?</p>
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<p><strong>Christopher:</strong> This is what we’re doing at the Center now, not focusing so much on personal declarations, but supporting people to have meaningful conversations and for them to designate a surrogate.  But the real energy and attention of our work right now is on educating and supporting surrogates.  I mean, it’s a god-awful job.</p>
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<p>So that’s really where I think I want to end the lecture, because that’s really where we should be focusing, on the surrogates.</p>
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<p><strong>BI:</strong> What message do you hope that people will take away from your lecture and from National Health Care Decisions Week?</p>
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<p><strong>Christopher:</strong> My work has fundamentally been about helping people finish their life story in a way that is consistent with who they are and their values and what they care about.</p>
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<p>When I started on this, the greatest good in medicine was to prolong life.  But when you wed that with the biotechnology to prolong bodily function indefinitely, you end up with these nightmarish scenarios.</p>
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<p>The real goal here is changing the culture of medicine – the greatest good is not prolonging life but honoring a person’s goals and values, and providing them the care and support and services they need to do that.</p>
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		<item>
		<title>Disaster in the Sahel</title>
		<link>http://bioethicsbulletin.org/archive/disaster-in-the-sahel/#utm_source=rss&amp;utm_medium=rss&amp;utm_campaign=disaster-in-the-sahel</link>
		<comments>http://bioethicsbulletin.org/archive/disaster-in-the-sahel/#comments</comments>
		<pubDate>Thu, 12 Apr 2012 19:37:08 +0000</pubDate>
		<dc:creator>Bioethics Bulletin</dc:creator>
				<category><![CDATA[Features]]></category>
		<category><![CDATA[Jennifer Howells]]></category>
		<category><![CDATA[aid]]></category>
		<category><![CDATA[bioethics]]></category>
		<category><![CDATA[disaster response]]></category>
		<category><![CDATA[drought]]></category>
		<category><![CDATA[famine]]></category>
		<category><![CDATA[health policy]]></category>
		<category><![CDATA[resource inequities]]></category>
		<category><![CDATA[social justice]]></category>

		<guid isPermaLink="false">http://bioethicsbulletin.org/?p=8988</guid>
		<description><![CDATA[In the Sahel Region of West Africa, a silent killer - drought - is claiming thousands of lives.  Is anyone listening?]]></description>
			<content:encoded><![CDATA[<p><em>By Jennifer Howells</em></p>
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<p>In the Sahel region of West Africa, a silent killer –drought –is claiming thousands of lives, and many more continue to be at risk of a slow death via <a href="http://www.huffingtonpost.com/2012/04/04/sahel-drought-2012_n_1403884.html?ref=world">malnutrition</a>. Last summer, drought in East Africa killed tens of thousands, devastating both humans and their livestock . While this sort of natural disaster is clearly tragic, the true tragedy is the fact that many of these deaths were likely <a href="http://www.guardian.co.uk/world/2012/jan/18/east-africa-drought-disaster-report"><strong>avoidable</strong></a>.</p>
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<p>The Oxfam report <em><a href="http://oxfamilibrary.openrepository.com/oxfam/bitstream/10546/203389/8/bp-dangerous-delay-horn-africa-drought-180112-en.pdf">A Dangerous Delay</a></em> takes the aid community to task for its sluggish response to last year’s East African drought, which unfolded as agencies waited to mobilize until all uncertainty about the existence of the crisis was gone. That meant relying on a costly delivery of food, water, and other forms of aid to those who were already starving.<strong> </strong></p>
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<p><img class="alignright" src="http://www.syngentafoundation.org/db/1/49.gif" alt="Map of the Sahel" width="255" height="210" />The Sahel is no stranger to drought, but the environmental problem is compounded by  inflated grain prices due to widespread <a href="http://www.foreignpolicy.com/articles/2011/04/27/how_goldman_sachs_created_the_food_crisis">market</a> <a href="http://necsi.edu/research/social/foodprices.html">speculation</a>, a lack of effective emergency response infrastructure and the <a href="http://www.economist.com/blogs/dailychart/2011/05/world_population_projections">recent African population explosion</a>. These combined factors threaten to send many deeper into poverty and claim the lives of the most vulnerable. Chronic malnutrition faced by children living through these droughts will continue to affect their development long after the current food shortages are alleviated, <a href="http://www.unicef.org/esaro/5479_nutrition.html">causing a whole host of problems</a> including stunted growth and susceptibility to infections. These long term effects have not only health but <a href="http://siteresources.worldbank.org/NUTRITION/Resources/281846-1131636806329/NutritionStrategy.pdf">economic ramifications</a> as well, as a physically and mentally impaired workforce is staggeringly less productive .</p>
<p><br class="spacer_" /></p>
<p>The international community has historically failed to act in Africa in moments of humanitarian crisis. <a href="http://news.bbc.co.uk/2/hi/africa/714025.stm">Rwanda</a> and <a href="http://www.worldsecurityinstitute.org/showarticle.cfm?id=222">Darfur</a> were long-ignored conflicts, overshadowed by the conflicts in Bosnia and Kosovo, and the wars in Iraq and Afghanistan, respectively. A <a href="http://www.unicef.org/wcaro/UNICEF_WCARO_QandA_Nutrition_Sahel_060410_final_k.pdf">UNICEF study from 2010</a>, another drought year for the Sahel, estimates that funding shortfalls to implement needed aid programs exceeded $24 million. As the Oxfam report <em><a href="http://www.oxfam.org.uk/resources/policy/conflict_disasters/downloads/oxfam_india_rethinking_disasters.pdf">Rethinking Disasters</a></em> emphasizes, it is <em>humans</em> –not nature –that create real disasters through our failure to implement timely, well-planned, and long-term focused interventions that can effectively promote development while managing risk.</p>
<p><br class="spacer_" /></p>
<p>Climate change will only exacerbate drought in the Sahel , as nations in the developing world will <a href="http://www.sustainablebusiness.com/index.cfm/go/news.display/id/18885">bear the largest burden</a> while having the least capacity to adapt. According to U.S. Intelligence estimates, as drought events continue to increase in duration and severity, tensions over natural resources –especially <a href="https://s3.amazonaws.com/s3.documentcloud.org/documents/327371/report-warns-that-water-shortages-could-threaten.pdf">water</a> –will erupt, further plaguing an already conflict-prone region. In order to avert future tragedies, the donor community must (note: this is a great opportunity for engineers, public health practitioners, and policymakers to <strong>collaborate)</strong>:</p>
<p><br class="spacer_" /></p>
<ul>
<li>recognize and act on the early signs of drought indicated by <a href="http://earlywarning.usgs.gov/fews/pubs/Funk_EarthObserver_Jan_Feb09.pdf">highly-advanced warning systems</a></li>
<li>focus on long-term sustainable infrastructure development in areas like water, sanitation, health, and transportation systems over <em>very costly</em> short-term interventions that only serve to reinforce a cycle of dependency on foreign aid </li>
</ul>
<p><br class="spacer_" /></p>
<p>Members of the international community with the capacity to do so have an ethical imperative, rooted in social justice considerations, to reverse the dramatic inequities that abound between the “haves” and the “have-nots,” both within <em>and</em> among nations. Further, the achievement of the <a href="http://www.un.org/millenniumgoals/index.shtml">Millennium Development Goals</a> demands the efforts of<em> all</em> nations. Without international cooperation and assistance, droughts in Africa will continue to result in tragically unnecessary deaths and hinder that continent’s overall ability to develop and break the cycle of poverty that consumes too many African states. These imperatives are never clearer than in the face of imminent and avoidable disasters.</p>
<p><br class="spacer_" /></p>
<p><br class="spacer_" /></p>
<p><em><a rel="attachment wp-att-8989" href="http://bioethicsbulletin.org/wp-content/uploads/2012/04/howells.jpg" rel="facebox"><img class="alignleft size-full wp-image-8989" title="howells" src="http://bioethicsbulletin.org/wp-content/uploads/2012/04/howells.jpg" alt="" width="112" height="128" /></a>Jennifer Howells, BSCE, BA, B.Phil, is a Master’s student in Environmental Engineering at Johns Hopkins University and a Research/Administrative Assistant at the Berman Institute of Bioethics. Her interests lie at the intersection of the environment, public health, and international affairs.</em></p>
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		<title>US Dual Use Research Oversight Policy Revised</title>
		<link>http://bioethicsbulletin.org/archive/us-dual-use-research-oversight-policy-revised/#utm_source=rss&amp;utm_medium=rss&amp;utm_campaign=us-dual-use-research-oversight-policy-revised</link>
		<comments>http://bioethicsbulletin.org/archive/us-dual-use-research-oversight-policy-revised/#comments</comments>
		<pubDate>Tue, 03 Apr 2012 20:45:58 +0000</pubDate>
		<dc:creator>Bioethics Bulletin</dc:creator>
				<category><![CDATA[Features]]></category>
		<category><![CDATA[Leah Ramsay]]></category>
		<category><![CDATA[Ruth Faden]]></category>
		<category><![CDATA[bioethics]]></category>
		<category><![CDATA[dual-use]]></category>
		<category><![CDATA[h5n1]]></category>
		<category><![CDATA[nsabb]]></category>
		<category><![CDATA[oversight]]></category>
		<category><![CDATA[policy]]></category>
		<category><![CDATA[review]]></category>

		<guid isPermaLink="false">http://bioethicsbulletin.org/?p=8873</guid>
		<description><![CDATA[“This is a crucial step forward,” says Ruth Faden “...It is good that the debate has yielded proactive action from the government aimed at balancing scientific progress with minimized risk.”]]></description>
			<content:encoded><![CDATA[<p>In the wake of terrorist anthrax attacks in 2001, The National Academy of Sciences convened a committee to advise the United States on preventing “the destructive application of biotechnology research while still enabling legitimate research to be conducted.”  The world had changed, and the potential “dual-use” of biotechnology for bioterrorism had to be addressed.</p>
<p><br class="spacer_" /></p>
<p>However, while some recommendations of that committee, commonly called the Fink Committee after its chair, Gerald Fink, were adopted – like the creation of the National Science Advisory Board for Biosecurity (NSABB) – others involving the <a href="http://www.nap.edu/openbook.php?record_id=10827&amp;page=5">establishment of an oversight system</a> were not implemented.  Many, including Fink Committee member Ruth Faden, PhD, MPH, director of the <a href="http://www.bioethicsinstitute.org/">Johns Hopkins Berman Institute of Bioethics</a>, believe this lack of international regulatory framework is to blame for the potential danger and resulting <a href="http://bioethicsbulletin.org/archive/how-to-prevent-a-flu-pandemic/">uproar related to recent experiments</a> that made the H5N1 “bird flu” virus more virulent.</p>
<p><br class="spacer_" /></p>
<p>“I think that some of the recommendations of that [Fink] report that were not taken up are still now extremely worth reconsidering,” Faden said while discussing the issue on NPR’s <a href="http://thedianerehmshow.org/shows/2011-12-22/biomedical-experiments-and-public-safety/transcript">Diane Rehm Show</a> in December 2011.</p>
<p><br class="spacer_" /></p>
<p>Reconsider the government has.  Last week the National Institutes of Health (NIH) Office of Biotechnology Activities posted on their website “United States Government <a href="http://oba.od.nih.gov/oba/biosecurity/PDF/United_States_Government_Policy_for_Oversight_of_DURC_FINAL_version_032812.pdf">Policy</a> for Oversight of Life Sciences Dual Use Research of Concern.” The policy establishes “regular review of United States Government funded or conducted research with certain high-consequence pathogens and toxins for its potential to be dual use research of concern (DURC).” The report lists 15 specific “agents and toxins,” including the H5N1 virus, first on the list and the only to include a notation in parentheses: <em>(highly pathogenic).</em> Also listed are the Ebola virus, <em>Bacillus anthracis</em> and the foot-and-mouth disease virus.</p>
<p><br class="spacer_" /></p>
<p>“This is a crucial step forward,” says Faden.  “The prospect of a weaponized air-transmissible bird flu virus is frightening, and it is good that the debate has yielded proactive action from the government aimed at balancing scientific progress with minimized risk.”</p>
<p><br class="spacer_" /></p>
<p>The policy appears to have immediate effect, requiring agencies to report DURC studies within 60 days.  Research with dual-use potential will require a risk-mitigation plan.  If that proves impossible or unsuccessful, federal agencies must decide whether to request a voluntary redaction of research publications, classify the information or withhold funding from the study.</p>
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		<title>A &#8216;Second Wave&#8217; of Women in Medical Research</title>
		<link>http://bioethicsbulletin.org/archive/a-second-wave-of-women-in-medical-research/#utm_source=rss&amp;utm_medium=rss&amp;utm_campaign=a-second-wave-of-women-in-medical-research</link>
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		<pubDate>Thu, 29 Mar 2012 13:50:32 +0000</pubDate>
		<dc:creator>Bioethics Bulletin</dc:creator>
				<category><![CDATA[Features]]></category>
		<category><![CDATA[Leah Ramsay]]></category>
		<category><![CDATA[Ruth Faden]]></category>
		<category><![CDATA[benefits]]></category>
		<category><![CDATA[bioethics]]></category>
		<category><![CDATA[medical research]]></category>
		<category><![CDATA[pregnancy]]></category>
		<category><![CDATA[risk]]></category>
		<category><![CDATA[second wave]]></category>
		<category><![CDATA[vulnerability]]></category>

		<guid isPermaLink="false">http://bioethicsbulletin.org/?p=8788</guid>
		<description><![CDATA[Little is known about how pregnant women respond to most drugs. The Second Wave Initiative was launched to respond to this problem. ]]></description>
			<content:encoded><![CDATA[<p><em>Crossposted from <a href="http://www.primr.blogspot.com/2012/03/second-wave-of-women-in-medical.html">PRIM&amp;R&#8217;s amp&amp;rs<strong>and</strong> blog</a></em></p>
<p><br class="spacer_" /></p>
<p><em>By <a href="http://www.bioethicsinstitute.org/mshome/?id=64">Ruth Faden</a></em></p>
<p><br class="spacer_" /></p>
<p>When I was pregnant with my first child more than 30 years ago, I developed a serious medical problem (deep vein thrombosis) and was put on heparin, a blood thinner. With every injection, I worried about whether I was doing the right thing, for me and for my baby. My wonderful physicians tried to be reassuring, but there was precious little by way of evidence or data to back up their claims.  It was a difficult, sometimes scary experience.</p>
<p><br class="spacer_" /></p>
<p>I wish I could say that a lot has changed in the intervening years, but, sadly, it has not. Although it is widely recognized that the pregnant body is in many respects biologically unique, there is still little known about how pregnant women respond to most drugs for most diseases. This makes doctors hesitant to prescribe them, creating a cycle of no-information-so-no-new-information that has proved difficult to break. In the US alone, that lack of knowledge leaves hundreds of thousands of pregnant women in the lurch every year.</p>
<p><br class="spacer_" /></p>
<p>The good news is this is a solvable problem! The solution lies in shifting the current research ethics framework from a focus on the risks that pregnant women and their fetuses face from medical research to the risks they face <em>without</em> medical research. It’s time that pregnant women are treated justly by the medical research community, and it’s time that the health interests of pregnant women are given their fair share of resources and creativity.</p>
<p><br class="spacer_" /></p>
<p>That is why I’ve worked with fellow bioethicists <a href="http://e105.org/maggie/about.php?m=mfn" target="_blank">Margaret Little</a> and <a href="http://www.med.unc.edu/socialmed/faculty-staff/anne-lyerly" target="_blank">Anne Drapkin Lyerly</a> to found<a href="http://secondwaveinitiative.org/" target="_blank">The Second Wave Initiative</a>, so named to reflect a connection to the “first wave” of widespread inclusion of women in medical research in the late 1980s.</p>
<p><br class="spacer_" /></p>
<p>Since its founding, Second Wave has established its role as an advocate for the inclusion of pregnant women in medical research. Other colleagues have joined us in leading the effort, and many more are actively working on its behalf. In 2009, we made sure pregnant women were<a href="http://www.nytimes.com/2009/05/10/opinion/10faden.html?_r=1" target="_blank">part of the discussion</a> around the <a href="http://www.nytimes.com/2009/09/29/health/views/29essa.html?ref=todayspaper" target="_blank">H1N1 vaccine</a>.  More recently, we sent <a href="http://secondwaveinitiative.org/Comment_to_HHS.html" target="_blank">a letter</a> to the Department of Health and Human Services (DHHS) to urge specific changes to regulations governing research with pregnant women, as part of our response to the <a href="http://www.hhs.gov/ohrp/humansubjects/anprm2011page.html" target="_blank">DHHS Advanced Notice of Proposed Rulemaking (ANPRM)</a>, and we worked to secure congressional support for this effort.</p>
<p><br class="spacer_" /></p>
<p>In January, 36 members of the House of Representatives responded to our call by sending <a href="http://secondwaveinitiative.org/LoweyDeLauroLtr_to_Sebelius.pdf" target="_blank">a letter</a> to the Secretary of DHHS, Kathleen Sebelius. “It is critical that we understand how to safely and effectively treat pregnant women,” the letter states, calling the lack of knowledge a “public health issue.”</p>
<p><br class="spacer_" /></p>
<p>As DHHS prepares to <a href="http://www.hhs.gov/ohrp/humansubjects/anprmqanda.html" target="_blank">revise the “Common Rule,”</a> all of us in the Second Wave Initiative are hopeful that the changes will be positive for pregnant women, following the recommendations we’ve made. As the congressional letter says, “It is imperative that these regulations encourage the gathering of this critical information in safe and appropriate ways.”</p>
<p><br class="spacer_" /></p>
<p>Regardless of what happens with the “Common Rule,” however, progress can be made. The ethical and legal challenges to research involving pregnant women are real, but they are not insurmountable. Under the status quo, any number of valuable research projects that pose no or minimal risks are not undertaken or even contemplated, at least in part because researchers and funders don’t want the headache of trying to have research involving pregnant women approved.  Those of us in the PRMI&amp;R community could do a lot to alleviate these concerns. At Second Wave, we are all about starting with the (ethically) low-hanging fruit—epidemiological and pharmacokinetic studies, and the like.  Please think about what you can do; with today’s science, there is just no excuse for pregnant women still to be facing what I faced all those decades ago.</p>
<p><br class="spacer_" /></p>
<p><em><em><img class="alignleft" src="http://2.bp.blogspot.com/-oi50rJSpbp4/T3MX2JG4xHI/AAAAAAAABY4/-d8YlZM7DRI/s200/faden-01.jpg" alt="" width="118" height="200" /><a href="http://www.bioethicsinstitute.org/mshome/?id=64">Ruth Faden, PhD, MPH</a>, is director of the <a href="http://www.bioethicsinstitute.org/" target="_blank">Johns Hopkins Berman Institute of Bioethics</a> and a senior research scholar at the <a href="http://kennedyinstitute.georgetown.edu/" target="_blank">Kennedy Institute of Ethics at Georgetown University</a>.  She was co-recipient of <a href="http://www.primr.org/AboutUs.aspx?id=12837" target="_blank">PRIM&amp;R’s Lifetime Achievement Award in 2011</a> with her husband, Tom L. Beauchamp.</em></em></p>
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		<title>Ethics Consultation</title>
		<link>http://bioethicsbulletin.org/archive/ethics-consultation/#utm_source=rss&amp;utm_medium=rss&amp;utm_campaign=ethics-consultation</link>
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		<pubDate>Tue, 27 Mar 2012 21:32:38 +0000</pubDate>
		<dc:creator>Bioethics Bulletin</dc:creator>
				<category><![CDATA[Features]]></category>
		<category><![CDATA[Holly Taylor]]></category>
		<category><![CDATA[Leah Ramsay]]></category>
		<category><![CDATA[Nancy Kass]]></category>
		<category><![CDATA[Berman Institute]]></category>
		<category><![CDATA[bioethics]]></category>
		<category><![CDATA[ethics consultation]]></category>
		<category><![CDATA[Research Ethics]]></category>

		<guid isPermaLink="false">http://bioethicsbulletin.org/?p=8763</guid>
		<description><![CDATA[Johns Hopkins Berman Institute of Bioethics Faculty Provide Members of the Johns Hopkins Community With Free, Confidential Research Ethics Advice]]></description>
			<content:encoded><![CDATA[<p><em>Johns Hopkins Berman Institute of Bioethics Faculty Provide Members of the Johns Hopkins Community With Free, Confidential Research Ethics Advice</em></p>
<p><br class="spacer_" /></p>
<p>When it launched in March 2005, the <a href="http://ictr.johnshopkins.edu/ethics/recs/">Research Ethics Consulting Service</a> (RECS) at the Johns Hopkins Bloomberg School of Public Health was a new experiment in extending ethics consultation—typically related to clinical issues—to the research setting.</p>
<p><br class="spacer_" /></p>
<p>“Our goal was to help raise awareness of, and to assist investigators in resolving, ethical issues in research where a there was a void of independent, one-on-one consultation available,” says <a href="http://www.bioethicsinstitute.org/mshome/?ID=84">Holly Taylor</a>, Ph.D., M.P.H., a core faculty member at the <a href="http://www.bioethicsinstitute.org/">Johns Hopkins Berman Institute of Bioethics</a> (BI) and the co-founder and coordinator of RECS.</p>
<p><br class="spacer_" /></p>
<p>It was quickly evident the demand existed, and seven years later the program has expanded both its <a href="http://ictr.johnshopkins.edu/ethics/recs/recs-personnel.html">consultants</a> and scope, now serving faculty, staff, trainees and students from the Schools of Medicine, Nursing, Public Health, Engineering and the Kennedy Krieger Institute.  The service is provided for free by the <a href="http://ictr.johnshopkins.edu/ictr/" target="blank">Johns Hopkins Institute for Clinical and Translational Research</a> and BI.  Staff members and students are asked to apply through their faculty advisor or principal investigator.</p>
<p><br class="spacer_" /></p>
<p>“Over the years we’ve tackled some ethically complex, challenging cases,” says <a href="http://www.bioethicsinstitute.org/mshome/?ID=65">Nancy Kass</a>, ScD, who founded RECS with Taylor and continues to serve as a consultant and community liaison.  While the service is confidential, the consultants were able to share generalized examples of questions that have been posed through the RECS <a href="http://ictr.johnshopkins.edu/ethics/recs/apply-to-recs.html">online submission form</a>.  In a review of the program-to-date in 2009 in the journal <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2874467/"><em>IRB: Ethics and Human Research</em></a>, Taylor and Kass wrote, “consultations involved research with hidden populations in conflict ridden regions of the globe; research with minority adolescents at risk of suicide; or studies where the state of evidence was both in flux and contested.” Other submissions have looked for help responding to feedback from an Institutional Review Board (IRB) or NIH Study Section.</p>
<p><br class="spacer_" /></p>
<p>Researchers dealing with these and other ethical concerns receive consultation in-person or by phone or email if necessary.  Requests for consultation can be made at any point in the research process – during study development, conduct, analysis, or publication. Consultants, all of whom are faculty members of the BI, provide relevant literature, links to relevant IRB policy memos, and other resources.</p>
<p><br class="spacer_" /></p>
<p>However, Taylor notes that RECS provides consultation only, and researchers are still responsible for their choices, and of course applying for and obtaining IRB approval.  “RECS is intended to supplement rather than supplant the services and expertise provided by the Office for Research Subjects and Institutional Review boards at the school,” Taylor says.</p>
<p><br class="spacer_" /></p>
<p>“We want people at Johns Hopkins, whether they are faculty, staff or students, to know that there is a place where they can come, free of charge, to talk through the ethics challenges they face in their research.  It is our goal to help them devise the best strategy for navigating the challenges that come up in their work,” says Kass.</p>
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		<title>The Individual Mandate Is Constitutional</title>
		<link>http://bioethicsbulletin.org/archive/the-individual-mandate-is-constitutional/#utm_source=rss&amp;utm_medium=rss&amp;utm_campaign=the-individual-mandate-is-constitutional</link>
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		<pubDate>Fri, 23 Mar 2012 19:57:16 +0000</pubDate>
		<dc:creator>Bioethics Bulletin</dc:creator>
				<category><![CDATA[Features]]></category>
		<category><![CDATA[bioethics]]></category>
		<category><![CDATA[constitutionality]]></category>
		<category><![CDATA[individual mandate]]></category>
		<category><![CDATA[Leslie Meltzer Henry]]></category>
		<category><![CDATA[obamacare]]></category>
		<category><![CDATA[ppaca]]></category>
		<category><![CDATA[SCOTUS]]></category>

		<guid isPermaLink="false">http://bioethicsbulletin.org/?p=8724</guid>
		<description><![CDATA[Legal expert and Berman Institute faculty member Leslie Meltzer Henry defends the constitutionality of the “individual mandate”]]></description>
			<content:encoded><![CDATA[<p>On the eve of Supreme Court arguments challenging the Affordable Care Act (ACA), a legal expert and faculty member of the <a href="http://www.bioethicsinstitute.org/">Johns Hopkins Berman Institute of Bioethics</a> has vigorously defended the constitutionality of its most controversial provision, the “individual mandate” to purchase health insurance by 2014 or face a monetary penalty.</p>
<p><br class="spacer_" /></p>
<p><img class="alignright" src="http://www.law.umaryland.edu/images/facultystaff/lmeltzer.jpg" alt="Photo of Leslie Meltzer Henry" width="88" height="115" />In an <a href="http://www.baltimoresun.com/news/opinion/oped/bs-ed-health-mandate-20120322,0,4285183.story">op-ed published today</a> in the Baltimore Sun, <a href="http://www.law.umaryland.edu/faculty/profiles/faculty.html?facultynum=616">Leslie Meltzer Henry</a>, M.Sc., J.D., and, <a href="http://www.law.umaryland.edu/faculty/profiles/faculty.html?facultynum=373">Maxwell L. Stearns</a>, professor of at the University of Maryland Carey School of Law declare that “The ACA is consistent with long-standing precedent allowing Congress to tackle regulatory problems affecting commerce that states are ill-suited to solve on their own.” Henry is also an assistant professor of law at the Carey School.</p>
<p><br class="spacer_" /></p>
<p>The real issue, the authors write, is not that the mandate violates the Commerce Clause by allowing unfettered federal regulation. Rather, striking down the individual mandate would prevent Congress’ crucial authority in matters with a ‘substantial economic effect on commerce,’ which the authors trace to the Court’s 1942 decision in <a href="http://supreme.justia.com/cases/federal/us/317/111/case.html">Wickard v. Filburn</a>.</p>
<p><br class="spacer_" /></p>
<p>States are not capable of regulating the health insurance market on their own, the authors argue, because health insurance companies can always pull out of a state with unfavorable laws or deny coverage to high-risk applicants. “Arguments that sustaining the individual mandate would give Congress limitless power ring hollow,” the authors write.</p>
<p><br class="spacer_" /></p>
<p>“Striking down the individual mandate would introduce a new and deeply problematic chapter in the history of the Commerce Clause. For the first time since the New Deal, Congress would no longer hold a vital power of national concern, namely, the authority to regulate all economic subject matter substantially affecting commerce,” the authors conclude.</p>
<p><br class="spacer_" /></p>
<p>Henry will speak on the individual mandate at a <a href="http://us1.campaign-archive1.com/?u=0f543d0b018f081433751de11&amp;id=71b80543da&amp;e=53613b03f0">seminar at the Johns Hopkins University</a> on Monday, March 26, as the Supreme Court begins hearing oral arguments on the case. The seminar will be held from 12:15 – 1:30 PM at the Bloomberg School of Public Health, 615 N. Wolfe Street, Room W3008, Baltimore, MD 21205.</p>
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