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	<title>Science Progress &#187; Sirine Shebaya</title>
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		<title>Are &#8220;Designer Babies&#8221; on the Horizon?</title>
		<link>http://scienceprogress.org/2008/05/designer-babies/</link>
		<comments>http://scienceprogress.org/2008/05/designer-babies/#comments</comments>
		<pubDate>Thu, 15 May 2008 19:57:09 +0000</pubDate>
		<dc:creator>Sirine Shebaya</dc:creator>
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		<description><![CDATA[The media is abuzz with news of researchers at Cornell University successfully creating the first genetically engineered human embryo, and critics argue that this is a first step towards "designer babies." But this is not necessarily a slippery slope, and we must consider that the potential rewards of this work are immense.]]></description>
			<content:encoded><![CDATA[<p>The media is abuzz with news of researchers at Cornell University successfully creating the first <a href="http://www.nytimes.com/2008/05/13/science/13embryo.html?scp=1&amp;sq=researchers+create+genetically+modified+human+embryo&amp;st=nyt">genetically</a> <a href="http://www.timesonline.co.uk/tol/news/uk/science/article3908516.ece">engineered</a> <a href="http://www.chicagotribune.com/news/nationworld/sns-ap-modified-embryo,0,5760766.story">human embryo</a>. The embryo was destroyed after five days, but critics argue that this is a first step towards &#8220;designer babies,&#8221;  and that the scientists overstepped by making a decision on a controversial subject without consulting the public or opening the issue up for an informed discussion. In order to properly weigh the ethical issues, one relevant piece of information we must consider is the goal of the experiment and its projected benefits. The potential rewards of this work are immense, but we should not scoff at the possibility that this kind of research could ultimately lead to the technology for creating babies with preselected mental or physical traits.</p>
<p>The scientists argue that the embryo they used was not viable—it had three sets of chromosomes rather than the normal two—and therefore could not have developed into a baby anyway. They also claim that since the research, focused on stem cells, was privately funded and passed their internal review board, they violated no federal regulations.  The suggestion was even made that this did not constitute a huge technological advance because the technique is already commonly used for gene therapy. So was there anything ethically irresponsible about their experiment? And what can we conclude about this type of research in general?</p>
<p>The scientists claim that their goal was to find out if genetic changes made to embryos can be passed on to daughter cells. Genetic modifications in an embryo are thought to be inheritable, whereas current gene therapy—genetic modification performed on people for disease treatment purposes—cannot be passed on to future generations. The potential benefits of heritable genetic modification are huge—for instance, individuals could potentially rid their offspring of a gene that would predispose them to breast cancer—but so are its potential abuses. We cannot assume without discussion that preselecting our offspring&#8217;s genetic makeup is not an undesirable outcome.</p>
<p>Scientists constantly emphasize that we are still a long way away from children with preselected traits. But declining to regulate research that could lead us to a point where such choices are possible is troubling precisely because we cannot expect individual scientists to censor themselves based on a concern for societal consequences. This is arguably not their job. Remember division of labor and how it increases efficiency? Scientists have a mission to explore and pursue the most promising avenues of research within the bounds of government regulations. Policy makers and legislators have a mission to figure out where the lines ought to be drawn. Whether we like the idea of &#8220;designer babies&#8221; or not, their possibility would entail quite serious public and societal consequences. Decisions about the issue have to be made not simply at the level of individual scientists and research labs, but at the public, societal level, particularly given the extent of moral disagreements on the matter.</p>
<p>As members of a recent <a href="http://www.scienceprogress.org/2008/04/aaas-panel-addresses-science-and-policy-of-stem-cells-and-reproductive-technologies/">AAAS panel on stem cell research</a> have pointed out, the mere existence of moral controversy is not in itself sufficient to determine the ethical standing of an experiment or research direction. However, the existence of moral controversy mandates a public ethical review and a set of regulations consistent both with expert opinions and with social values.</p>
<p>Slippery slope worries can be compelling in some cases, but not everything is a slippery slope. The mere fact that a particular type of research <em>could </em>lead to undesirable applications is not a good reason to ban the research if it also has sufficiently important good consequences. Instead, it is a good reason to ban the undesirable applications. The best way to avoid slippery slopes to bad outcomes is to have an informed, democratic discussion that takes into account both expert opinions and social values. We need regulations because scientists and the general public need clarity about what they can and cannot do, a convincing rationale for permissions and restrictions, and a voice in arriving at decisions with such important ramifications.</p>
<p><em>Sirine Shebaya, Ph.D. is a <a href="http://www.bioethicsinstitute.org/web/page/518/sectionid/376/pagelevel/2/interior.asp">Greenwall Fellow</a> in Bioethics and Health Policy at the Johns Hopkins Berman Institute of Bioethics.</em></p>
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		<title>Lack of Basic Healthcare Kills 10 Million Children Annually</title>
		<link>http://scienceprogress.org/2008/05/lack-of-basic-healthcare-kills-10-million-children-annually/</link>
		<comments>http://scienceprogress.org/2008/05/lack-of-basic-healthcare-kills-10-million-children-annually/#comments</comments>
		<pubDate>Tue, 06 May 2008 20:32:24 +0000</pubDate>
		<dc:creator>Sirine Shebaya</dc:creator>
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		<description><![CDATA[The Associated Press reports that over 200 million children worldwide do not have access to basic health care. As a result, about 10 million children, most from the developing world, die each year from treatable illnesses.]]></description>
			<content:encoded><![CDATA[<p><a href="http://www.msnbc.msn.com/id/24482102/">The Associated Press reports</a> that over 200 million children worldwide do not have access to basic health care. As a result, about 10 million children, most from the developing world, die each year from treatable illnesses.</p>
<blockquote><p>An alarming number of countries are failing to provide the most basic health services that would save lives, with 30 percent of children in developing countries not getting basic health intervention such as prenatal care, skilled assistance during birth, immunizations and treatment for diarrhea and pneumonia.</p>
<p>Wide disparities in health care for the poorest and best-off children are seen even in the highest-ranked countries, the report said.</p>
<p>&#8230;</p>
<p>Use of existing, low-cost tools and knowledge could save more than 6 million of the 9.7 million children who die yearly from easily preventable or curable causes, the report [by Save the Children] said.</p>
<p>They include antibiotics that cost less than $0.30 to treat pneumonia, the top killer of children under 5, and oral rehydration therapy—a simple solution of salt, sugar and potassium—for diarrhea, the second top killer.</p></blockquote>
<p>This is as much a failure on the part of the rich developed world as it is one on the part of governments in the developing world. In addition to financial aid, there needs to be a focused effort to help developing countries set up sustainable primary care networks in socially and economically disadvantaged areas.</p>
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		<title>Measles on the Rise?</title>
		<link>http://scienceprogress.org/2008/05/measles-on-the-rise/</link>
		<comments>http://scienceprogress.org/2008/05/measles-on-the-rise/#comments</comments>
		<pubDate>Fri, 02 May 2008 19:20:44 +0000</pubDate>
		<dc:creator>Sirine Shebaya</dc:creator>
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		<description><![CDATA[One wonders how much of a public health crisis we need before we rethink our vaccine exemption policies—particularly given that misconceptions floating around about a connection between vaccines and autism are driving more parents to opt against MMR.]]></description>
			<content:encoded><![CDATA[<p>The <em><a href="http://www.nytimes.com/2008/05/02/health/02measles.html?ref=health">New York Times</a></em> and <a href="http://www.washingtonpost.com/wp-dyn/content/article/2008/05/01/AR2008050101806.html"><em>Washington Post</em></a> report that U.S. measles  rates are now at their highest point since 2001. On a related note, <em>Science Progress</em> just posted <a href="http://www.scienceprogress.org/2008/05/safe-vaccines-and-healthy-children/">an interview with Dr. Saad B. Omer on vaccine policy</a>.</p>
<p>One wonders how much of a public health crisis we need before we rethink our vaccine exemption policies—particularly given that misconceptions floating around about a connection between vaccines and autism are driving more parents to opt against MMR.</p>
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		<title>&#8220;Father of Pharmacogenomics&#8221; Cautiously Optimistic About the Future of Genetics</title>
		<link>http://scienceprogress.org/2008/05/father-of-pharmacogenomics-cautiously-optimistic-about-the-future-of-genetics/</link>
		<comments>http://scienceprogress.org/2008/05/father-of-pharmacogenomics-cautiously-optimistic-about-the-future-of-genetics/#comments</comments>
		<pubDate>Fri, 02 May 2008 18:57:25 +0000</pubDate>
		<dc:creator>Sirine Shebaya</dc:creator>
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		<guid isPermaLink="false">http://www.scienceprogress.org/2008/05/father-of-pharmacogenomics-cautiously-optimistic-about-the-future-of-genetics/</guid>
		<description><![CDATA[Dr. Arno Motulsky, who is now 87, essentially launched the field of pharmacogenomics, which studies how an individual's genetic makeup affects his or her response to medication, in 1957. The New York Times Science section recently featured an interview with Dr. Motulsky, who has a hopeful but cautionary attitude about the future of genetic medicine.]]></description>
			<content:encoded><![CDATA[<p>Dr. Arno Motulsky, who is now 87, essentially launched the field of pharmacogenomics, which studies how an individual&#8217;s genetic makeup affects his or her response to medication, in 1957. On Tuesday, the <em>New York Times</em> Science section featured <a href="http://www.nytimes.com/2008/04/29/science/29conv.html?ref=science">an interview with Dr. Motulsky</a>, whose life story is incredibly moving—he made his way from Nazi Germany to internment camps in France and  finally to the US, eventually to become known as &#8220;the father of pharmacogenomics.&#8221;</p>
<p>When asked whether health insurance would pay for genetic testing and custom pharmaceuticals, Dr. Motulsky had this to say:</p>
<blockquote><p> That’s a problem. On the hopeful side, people say it may soon be possible to sequence a person’s genome for $1,000. Once they figure out low-cost ways to sequence the genome, the price of personalized medicine will come down.</p>
<p>Still, one shouldn’t be misled. What we know about the genome today is not enough for all the miracles many expect from this field. There’s a lot about what regulates the genes and how they interact that we still need to understand. We won’t have the answers by tomorrow.</p></blockquote>
<p>This hopeful but cautionary attitude seems to be widespread among genetics experts. For example, it is reflected in comments made by <a href="http://www.scienceprogress.org/2008/04/unraveling-our-own-code/">Nancy B. Spinner</a> and <a href="http://www.scienceprogress.org/2008/04/its-all-in-the-genes-or-is-it/">Barbara Bernhardt</a> in interviews with <em>Science Progress</em>.</p>
<p>Dr. Motulsky remains very active and is currently working on a project related to human color-blindness, which he thinks has useful implications for the study of higher brain functions: &#8220;It’s exciting to learn that because of heredity, different people can see the same thing differently. I think this may prove useful in studying more complex brain functions. If this were 20 years ago, I’d focus on neurogenetics. What’s going on in the brain, that’s the last frontier.&#8221;</p>
<p>Any eager young minds out there looking for a cutting-edge Ph.D. project?</p>
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		<title>FDA Believes Blood Thinner Contamination Deliberate</title>
		<link>http://scienceprogress.org/2008/05/fda-believes-blood-thinner-contamination-deliberate/</link>
		<comments>http://scienceprogress.org/2008/05/fda-believes-blood-thinner-contamination-deliberate/#comments</comments>
		<pubDate>Thu, 01 May 2008 13:59:08 +0000</pubDate>
		<dc:creator>Sirine Shebaya</dc:creator>
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		<description><![CDATA[On Tuesday, the House Subcommittee on Oversight and Investigations held a hearing on a contaminant in blood thinner heparin that caused 81 deaths. Federal regulators now believe the contamination was deliberate, identifying a Chinese subsidiary of Scientific Protein Laboratories. It is no longer realistic to expect the FDA to make informed decisions if it does not have the resources to undertake foreign inspections.]]></description>
			<content:encoded><![CDATA[<p>The Health Section of the <em>New York Times</em> yesterday covered the <a href="http://www.nytimes.com/2008/04/30/health/policy/30heparin.html?ref=health">House Subcommittee on Oversight and Investigations hearing</a> on a contaminant in blood thinner heparin that caused 81 deaths. Federal regulators now believe the contamination was deliberate.  In addition to testimony from scientists and federal investigators, the Oversight Subcommittee heard testimony from family members of those who died.</p>
<p>The <em>NYT</em> reports:</p>
<blockquote><p>David G. Strunce, chief executive of Scientific Protein Laboratories, the company that supplied contaminated heparin material to Baxter International, which manufactured and distributed the finished drug, described the contamination as “an insidious act” that “seems to us an intentional act upstream in the supply chain.”</p>
<p>The F.D.A. has identified Changzhou SPL, a Chinese subsidiary of Scientific Protein Laboratories, as the source of the contaminated heparin. A Congressional investigator said the contaminant, oversulfated chondroitin sulfate, cost $9 a pound compared with $900 a pound for heparin.</p>
<p>Mr. Strunce said that his company tried to find the original source of the contamination but was stopped by the Chinese authorities.</p></blockquote>
<p>It is no longer realistic to expect the FDA to make informed decisions if it does not have the resources to undertake foreign inspections. Yet, despite what the <em>NYT</em> describes as &#8220;a growing bipartisan consensus on Capitol Hill that the F.D.A. needs a rapid increase in its budget to ensure the safety of the nation’s drugs, medical devices and food,&#8221; the Bush Administration&#8217;s proposed budget increase for next year is &#8220;not enough to cover even its expected cost increases.&#8221; (The Bush Administration is proposing a 3% increase.)</p>
<p>The FDA <a href="http://www.fda.gov/oc/history/historyoffda/default.htm">regulates products accounting for 25 cents of every dollar spent by consumers</a>. It plays a hugely important role, and we are rightly outraged when contaminated blood thinner (or toxic plastic) is missed. We are also rightly outraged by reports of corruption and big pharma influence. But how much of this is an internal FDA problem, and how much is a larger symptom of the Bush Administration? How can the FDA do its job properly if it is laboring under an administration that encourages political interference in its affairs (remember the <a href="http://www.washingtonpost.com/wp-dyn/content/article/2005/08/31/AR2005083101271.html">Plan B contraception debacle</a>?) and does not give it the financial means to do its job?</p>
<p><em>Sirine Shebaya, Ph.D. is a <a href="http://www.bioethicsinstitute.org/web/page/518/sectionid/376/pagelevel/2/interior.asp">Greenwall Fellow</a> in Bioethics and Health Policy at the Johns Hopkins Berman Institute of Bioethics.</em></p>
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		<title>Conflicts of Interest Under Scrutiny</title>
		<link>http://scienceprogress.org/2008/04/conflicts-of-interest-under-scrutiny/</link>
		<comments>http://scienceprogress.org/2008/04/conflicts-of-interest-under-scrutiny/#comments</comments>
		<pubDate>Wed, 30 Apr 2008 14:28:03 +0000</pubDate>
		<dc:creator>Sirine Shebaya</dc:creator>
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		<description><![CDATA[Attention in the news to conflicts of interest within the medical profession seems to be on the rise. This is an issue that deserves serious scrutiny, particularly given how permissive the attitude of the medical community has been so far.]]></description>
			<content:encoded><![CDATA[<p>Attention in the news to conflicts of interest within the medical profession seems to be on the rise. This is an issue that deserves serious scrutiny, particularly given how permissive the attitude of the medical community has been so far.</p>
<p>The Scientist NewsBlog reports on <a href="http://www.the-scientist.com/blog/display/54613/">conflicts of interest within the HHS Stem Cell Council</a> (free registration):</p>
<blockquote><p>The Center for Science in the Public Interest polled the 25 voting members of HHS&#8217;s <a href="http://bloodcell.transplant.hrsa.gov/ABOUT/Advisory_Council/index.html">Advisory Council on Blood Stem Cell Transplantation</a> (ACBSCT) and found that 11 reported having financial ties to stem cell and <a href="http://www.the-scientist.com/2007/03/01/s62/1/">umbilical cord blood</a> banking companies, drug makers, and the <a href="http://www.the-scientist.com/article/display/17367/">transplantation</a> industry.</p></blockquote>
<p>Apparently, none of the original applicants to the Council were screened for such conflicts.</p>
<p><em>Science Progress </em>recently <a href="http://www.scienceprogress.org/2008/04/if-you-didnt-write-the-article-why-are-you-listed-as-an-author/">covered</a> a report in <em>The Chronicle</em> on a <a href="http://chronicle.com/daily/2008/04/2516n.htm?utm_source=at&#038;utm_medium=en">study</a> (subscription) from the Journal of the American Medical Association showing that many academic scientists are adding their names to reports and papers written by corporations.</p>
<p>In any other context, both of these revelations would have been shocking. But within the medical profession, this is apparently not unusual.</p>
<p>The Health Section of the NYT yesterday reported that the <a href="http://www.nytimes.com/2008/04/28/us/28doctors.html?ref=health">Association of American Medical Colleges is proposing a ban</a> on medical giveaways:</p>
<blockquote><p>Drug and medical device companies should be banned from offering free food, gifts, travel and ghost-writing services to doctors, staff members and students in all 129 of the nation’s medical colleges, an influential college association has concluded.</p></blockquote>
<p>The NYT also recently profiled <a href="http://www.nytimes.com/2008/04/15/health/15conf.html?scp=1&#038;sq=doctors%2C+industry%2C+finances&#038;st=nyt">a small group of scientists</a> who decided to cease all paid services or consulting appointments with the food, drug, and medical device industries:</p>
<blockquote><p>No longer will they be paid for speaking at meetings or for sitting on advisory boards. They may still work with companies. It is important, they say, for knowledgeable scientists to help companies draw up and interpret studies. But the work will be pro bono.</p>
<p>…</p>
<p>They are part of a group responding to accusations of ethical conflicts inherent in these arrangements, and their decisions repudiate decades of industry influence, says Dr. Jerome P. Kassirer, a professor at the Tufts School of Medicine, who has written a book on conflicts of interest.</p></blockquote>
<p>Well it’s high time, too. Just because a practice is pervasive within a profession does not mean it passes ethical muster. And just because somebody is a well-intentioned doctor does not mean she’s immune to bias. That is why we institute ethical regulations. So far, the medical and scientific community has been surprisingly lax about conflicts of interest. One would hope that the personal decision of a few scientists and the ban by the Association of American Medical Colleges indicate the beginning of a trend in the opposite direction.</p>
<p><em>Sirine Shebaya, Ph.D. is a <a href="http://www.bioethicsinstitute.org/web/page/518/sectionid/376/pagelevel/2/interior.asp">Greenwall Fellow</a> in Bioethics and Health Policy at the Johns Hopkins Berman Institute of Bioethics.</em></p>
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		<title>Evolution and God Not Mutually Exclusive</title>
		<link>http://scienceprogress.org/2008/04/evolution-and-god-not-mutually-exclusive/</link>
		<comments>http://scienceprogress.org/2008/04/evolution-and-god-not-mutually-exclusive/#comments</comments>
		<pubDate>Tue, 29 Apr 2008 19:21:52 +0000</pubDate>
		<dc:creator>Sirine Shebaya</dc:creator>
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		<description><![CDATA[The Science Times section in the NYT today has a short profile on Francisco J. Ayala, author of Darwin’s Gift to Science and Religion. Dr. Ayala is an evolutionary biologist and geneticist at the University of California, Irvine. He spends much of his time lecturing on evolution and its compatibility with belief in God.]]></description>
			<content:encoded><![CDATA[<p>The Science Times section in the NYT today has a short profile on <a href="http://www.nytimes.com/2008/04/29/science/29prof.html?ref=science">Francisco J. Ayala</a>, author of <em>Darwin’s Gift to Science and Religion</em>. Dr. Ayala is an evolutionary biologist and geneticist at the University of California, Irvine. He spends much of his time lecturing on evolution and its compatibility with belief in God. The <em>Times</em> reports:</p>
<blockquote><p>Dr. Ayala, a former Dominican priest, said he told his audiences not just that evolution is a well-corroborated scientific theory, but also that belief in evolution does not rule out belief in God. In fact, he said, evolution “is more consistent with belief in a personal god than intelligent design. If God has designed organisms, he has a lot to account for.”</p>
<p>&#8230;</p>
<p>[He] dismisses the argument that it is only fair to teach both sides of the evolution/creationism controversy. “We don’t teach alchemy along with chemistry,” he said. “We don’t teach witchcraft along with medicine. We don’t teach astrology with astronomy.”</p>
<p>He said he was saddened when he saw the embrace of evolution identified with, as he put it, “explicit atheism,” as in the books of the evolutionary biologist Richard Dawkins or other writers on science and faith.</p>
<p>Neither the existence nor nonexistence of God is susceptible to scientific proof, Dr. Ayala said, and equating science with the abandonment of religion “fits the prejudices” of advocates of intelligent design and other creationist ideas.</p></blockquote>
<p>Sound bites proclaiming the opposition of science and religion tend to drown out more moderate voices calling attention to the compatibility of belief in evolution with belief in God. However, many religious institutions, including the Catholic Church, already support or explicitly endorse the latter view. With the brouhaha over recent creationist movie <em>Expelled</em>, and ongoing disputes about teaching “intelligent design” in the classroom, scientists and religious believers alike have a strong interest in making sure that voices like Dr. Ayala’s come through loud and clear. Failing to do so does a disservice to science and religion alike.</p>
<p><em>Sirine Shebaya, Ph.D. is a <a href="http://www.bioethicsinstitute.org/web/page/518/sectionid/376/pagelevel/2/interior.asp">Greenwall Fellow</a> in Bioethics and Health Policy at the Johns Hopkins Berman Institute of Bioethics.</em></p>
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		<title>What’s Human Dignity Got to Do With Bioethics?</title>
		<link>http://scienceprogress.org/2008/04/whats-human-dignity-got-to-do-with-bioethics/</link>
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		<pubDate>Fri, 25 Apr 2008 13:13:29 +0000</pubDate>
		<dc:creator>Sirine Shebaya</dc:creator>
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		<description><![CDATA[Report to the president fails on both academic and public policy levels to shine a meaningful light on human dignity and bioethics.]]></description>
			<content:encoded><![CDATA[<p>George W. Bush’s Council on Bioethics released its long-awaited volume on human dignity this past month.<a href="#notes">[1]</a> But for those hoping for public policy guidelines on biological developments in, say, stem cell research or abortion or end-of-life decisions, <em>Human Dignity and Bioethics</em> did not oblige. Instead, we were offered a series of academic essays on the meaning, origin, and basis of the concept of human dignity. After plodding through 500-odd pages, we find ourselves right back where we started: with progressive Albert Einstein College of Medicine bioethicist Ruth Macklin’s provocative assertion that dignity is a useless concept in bioethics.<a href="#notes">[2]</a></p>
<p>As co-editor and Council on Bioethics executive director F. Daniel Davis notes, this President’s Council, as opposed to the National Bioethics Advisory Commission established under President Clinton, was not asked to produce “deliverables” on particular policy issues. Instead, the Council was set up to provide “a <em>forum </em>for public discussion and to foster <em>understanding</em> of bioethical issues.”  <em>Human Dignity and Bioethics</em>, he suggests, sets out to do just that while attempting to refute Macklin’s deflationary claims. Yet, if we take Davis at his words, we are left wondering what possessed the Council to think an academic anthology could achieve those goals.</p>
<p class="pullquote">Is a public forum on bioethics really the place to hash out metaphysical disputes?</p>
<p>Instead of providing a forum for <em>public </em>discussion, the essays engage in highly academic (if not always rigorous or illuminating) debates suited mainly for other academics already well-versed in the relevant controversies. Indeed, this volume is more about metaphysics—and not always good metaphysics at that—than it is about political philosophy or bioethics. Important topics of the day are barely gestured at in concluding sections to long theoretical discussions, leaving readers puzzled. Is a public forum on bioethics really the place to hash out metaphysical disputes? If this is all the President’s Council is willing to do, then where are we going to go for actual policy guidance?</p>
<p>The volume is also punctuated by vitriolic commentaries, thus dispelling the illusion of a mutually respectful discussion. Gilbert Meilander’s commentary on Patricia Churchland’s contribution is an especially egregious example. (Meilander is Richard and Phyllis Duesenberg Professor of Christian Ethics at Valparaiso University and a member of the President’s Council. Churchland is University of California President’s Professor and Chair of the Department of Philosophy at UC San Diego.) Meilander’s commentary consists mostly of <em>ad hominem </em>attacks and ends with the suggestion that “the most dignified thing [for Churchland] to do would be to remain silent.”</p>
<p>Or consider Robert Kraynak, Professor of Political Science and Director of the Center for Freedom and Western Civilization at Colgate University, and Daniel Dennett, Austin B. Fletcher Professor of Philosophy and Director of the Center for Cognitive Studies at Tufts University, who exchange mutual attributions of arrogance. Bypassing all of Dennett’s arguments to the contrary, Kraynak asserts, again (he had already done so repeatedly in his essay) that there is a “contradiction” between scientific materialism and any claim to human uniqueness.</p>
<p>(The reader responds with extreme puzzlement, again. Rationality and the capacity for morality, as several of the contributors point out, are obviously unique to human beings, no matter why or how we have them. Perhaps Kraynak would prefer this not to be the sole basis for human uniqueness—but that is not a sound basis for calling something a contradiction.)</p>
<p>Dennett, on the other hand, devotes most of his comment to explaining, again, why citing scriptural texts does not an argument make. A plausible argument, but are the Kraynaks of the world going to be moved by it? Given that we already have a good statement of Dennett’s position from his own contribution to the volume, what is the value added by this additional commentary?</p>
<p>Then there’s Diana Schaub’s commentary on Nussbaum and Shell’s contributions, which begins with a blatant caricature of Nussbaum’s position that appears tone-deaf to any of its nuances. Martha Nussbaum, Ernst Freund Distinguished Service Professor of Law and Ethics at the University of Chicago, argues that “respecting human dignity requires informing people about their choices, restricting dangerous choices for children, but permitting adults to make a full range of choices, including unhealthy ones.” As a consequence, she suggests that sex work and recreational drug use should be decriminalized.</p>
<p>Granted, these are both vexed issues, and Schaub clearly disagrees with Nussbaum’s conclusions. But why stoop to an easy caricature of  “heroin-addled ‘sex workers’” being entitled to “bicycle paths” when that is clearly not what Nussbaum is advocating? Why not give a fair statement of the position before attacking it?</p>
<p>Did we really need a President’s Council report for this type of back-and-forth? Aren’t we already all too familiar with it from the ongoing “debates” about abortion, stem cell research, and end-of-life decisions? Should we not expect the Council to take us beyond, if one of its goals is to create a public forum for (productive) conversations? Instead of fostering understanding of bioethical issues, the volume appears to make Macklin’s case for her, leaving readers who may not previously have been so inclined asking themselves whether human dignity <em>is</em>, after all, a useless concept in bioethics—at least from the point of view of public policy.</p>
<p>So is there anything of value in the volume? Well, as a collection of academic essays, parts of it are of some interest. University of Notre Dame Professor of Philosophy Paul Weithman’s excellent contribution deserves special mention. Many thinkers, including Thomas Hobbes, John Locke, Thomas Jefferson, and twentieth-century Harvard political philosopher John Rawls believed that citizens have rights (political entitlements) because of the existence of a mutually beneficial implicit agreement (a social contract) among them. According to Weithman, some thinkers who object to this idea look instead to human dignity as an independent basis for the existence of political entitlements. In an interesting tour de force, Weithman argues that however independent arguments from dignity to entitlement might seem, they also ultimately rest on a contractualist foundation.</p>
<p>Weithman concludes that dignity is a useful “second-level” concept that can garner agreement among adherents of divergent views, but is not a useful bedrock concept on which to ground claims about entitlements. Since virtually every other essay in the volume attempts to ground political entitlements in a conception of human dignity, Weithman’s challenge is a powerful one that goes right to the heart of the matter, effectively posing the question: Why is the President’s Council issuing a report on dignity if what we are trying to settle are issues of entitlement?</p>
<p>From a more pragmatic point of view, Boston College Professor of Political Science Susan Shell’s essay also deserves special mention. She starts with Kant’s central moral injunction to always treat human beings as ends, never merely as means. Kant thought that humans should always be treated as ends because of their rationality, and Shell argues that our rationality is inseparable from our bodily nature.</p>
<p class="pullquote">The crucial missing link in all of this is a sustained discussion of the role of government, and the implications of that role for what we can and cannot do with public policy.</p>
<p>Thus, a key to solving some bioethical disputes might lie in the individualized character of our embodied rationality. Shell makes two interesting observations. First, she highlights the difference between moral permissibility on the one hand, and legal permissibility on the other. Respect for our autonomy as embodied rational beings may require that not everything that is morally problematic be legally impermissible. Second, she suggests that we can draw from Kant’s “punctuated” account of human development to resolve questions about moral status. For example, a blastocyst can still divide into two separate entities. Thus, it is not yet a fully individuated human being. This would justify embryonic stem-cell research as well as early abortion.</p>
<p>As we flip through the pages, we find dignity discussed from a number of perspectives. We read about theological and secular views of dignity, about dignity based on achievements and dignity based on human nature, about dignity as a matter of degree and dignity as all-or-nothing, and even about dignity as grounds for promoting diversity and dignity as grounds for promoting uniformity. Distinctions abound. But, one wonders, would anything be lost if the President’s Council were to leave this discussion with all its niceties to the ivory tower and proceed directly to the policy issues?</p>
<p>Indeed, are we any closer to “full understanding” than we were before we began reading this volume? And isn’t a relevant aspect of the “full understanding” needed for public policy a willingness to attend to people’s experiences of and interests in dignity rather than to argue about metaphysics?</p>
<p>The last two essays, by Rebecca Dresser, Daniel Noyes Kirby Professor of Law and Professor of Ethics in Medicine at Washington State University, St. Louis and by Council on Bioethics President Edmund Pellegrino (Professor Emeritus of Medicine and Medical Ethics at Georgetown University’s Center for Clinical Medical Ethics), take a stab at this question. Dresser’s contribution is a particularly valuable attempt to look at concrete aspects of an ill person’s experience and assess how the norms governing physician-patient interactions can be modified to preserve a patient’s sense of dignity.</p>
<p>She suggests four empathetic ways of mitigating the effects of patients’ vulnerability, thereby mitigating their sense of a loss of dignity: minimizing and compensating for the unavoidable loss of privacy that comes with being a patient; making sincere efforts to communicate with patients in a respectful manner; honoring a patient’s experiential knowledge of her own illness; and finally, understanding and seeking to mitigate the special dependence brought on by illness through a balanced commitment to patient autonomy. Her thoughtful essay takes up less than half the space of anybody else’s contribution: a mere eight pages to, say, David Gelernter’s 18-page treatise on religion and dignity.</p>
<p>Gelernter’s is not the longest essay in the volume, but it is without contest the most exasperating. The reader struggles to find a coherent argument among his many assertions and scriptural quotations, but to no avail. Gelernter, National Fellow at the American Enterprise Institute and Professor of Computer Science at Yale University, repeatedly stipulates as obvious the extremely questionable claim that, if one believes murder is wrong, then one (“<em>ipso facto</em>,” as he likes to keep saying) believes in God. This confused idea seems to have its source in Gelernter’s peculiar belief that the only two available positions on morality are theistic absolutism or radical relativism.</p>
<p class="pullquote">Public policy is not about defending metaphysical positions. Most fundamentally, it is about finding ways to live well together.</p>
<p>He then, with some flourish, puts forward a chaotic articulation of the suggestion that we must replace a “morality of rights” with a “morality of duties,” seemingly laboring under the illusion that this is an original point. In fact, if he were paying attention to contemporary ethics and moral philosophy, he would know that insightful and sophisticated articulations of this idea have been put forward and defended by two of the most preeminent moral and political philosophers of our day: Oxford and Columbia University Professor Joseph Raz, and Cambridge Professor Onora O’Neill. So much for Gelernter&#8217;s claim that &#8220;it barely exists on philosophy&#8217;s agenda.&#8221;</p>
<p>Gelernter grandly concludes with the following gem: “Bioethics touches every life. This field can’t possibly be allowed to develop in the secular ghetto where modern intellectuals lives [sic.].” Well, Mr. Gelernter, in my secular ghetto we think forums for public discussion require arguments, not mere assertions.</p>
<p>All this to say that, while there is certainly much value to academic analyses of the background issues underlying contemporary bioethical disputes, the President’s Council on Bioethics is not best placed to undertake this activity. It is neither best placed to do so from the perspective of academic quality, nor from the perspective of its self-declared goal of providing a public forum to promote debate and understanding.</p>
<p>What understanding can be gained from the claim that we all live in a “secular ghetto?” How is this going to provide us with any insight as to how we should make public policy on controversial issues?</p>
<p>The crucial missing link in all of this is a sustained discussion of the role of government, and the implications of that role for what we can and cannot do with public policy. No matter what one’s position on the role of government is, surely part of its job is to be responsive to the interests of its citizens; if we did not think so, we would not favor democracy over all other forms of government.</p>
<p>This job cannot be done without consulting those citizens on what they take their interests to be. And surely one fundamental way in which dignity manifests itself is in the relationship one has to oneself—in one’s sense of one’s own moral standing, in one’s own eyes, at crucial junctures in one’s life. Should we not then engage in a more careful exploration of what conditions are necessary for persons to be able to maintain their sense of dignity? And should this not nudge us away from one-size-fits-all assertions about what it is to live or die with dignity, away from assertions about the dignity of things that cannot possibly have an experience of dignity, and toward a more nuanced understanding of human differences and the political requirements placed on us by those differences?</p>
<p>Whether or not we find ready answers to these questions, the fact remains that dignity at its best serves as a backdrop—a way of asserting that human beings have a particular kind of moral status we all take as given, even as we disagree about how to honor that status. Unfortunately, this makes the concept of dignity especially amenable to being used as a tool for obfuscation—something we pull out of our hats as an excuse not to engage in difficult substantive discussions or produce rigorous arguments for our views. Instead, we restate our favorite metaphysical positions and stipulate as a consequence our favorite answers to crucial policy questions.</p>
<p>Admittedly, some essays in this volume do more than merely restate those metaphysical positions. They at least try to defend them. But public policy is not about defending metaphysical positions. Most fundamentally, it is about finding ways to live well together. This goal is not advanced by focusing on exactly those background issues about which we will never agree.</p>
<p>We would therefore all be much better served if the President’s Council on Bioethics would spend a little less time elaborating on the backdrop and a little more time developing coherent positions on the policy issues we urgently need to resolve.</p>
<p><em><a href="http://www.bioethicsinstitute.org/web/page/518/sectionid/376/pagelevel/2/interior.asp">Sirine Shebaya</a> is a Greenwall Fellow with the Berman Institute of Bioethics. </em></p>
<p><a title="notes" name="notes"></a></p>
<h2>Notes</h2>
<p>[1] <em>Human Dignity and Bioethics</em>, Washington, DC: President’s Council on Bioethics, 2008.</p>
<p>[2] Ruth Macklin, “Dignity is a Useless Concept,” BMJ 327 (2003): 1419 – 1420. This article serves as the punching bag for most of the essays in the Council’s volume.</p>
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		<title>AAAS Panel Addresses Science and Policy of Stem Cells and Reproductive Technologies</title>
		<link>http://scienceprogress.org/2008/04/aaas-panel-addresses-science-and-policy-of-stem-cells-and-reproductive-technologies/</link>
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		<pubDate>Wed, 16 Apr 2008 19:14:16 +0000</pubDate>
		<dc:creator>Sirine Shebaya</dc:creator>
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		<description><![CDATA[Reporting on the work of the Hinxton Group, experts explained the state of the science and criticized policies that aim to avoid all ethical disagreement by banning research. ]]></description>
			<content:encoded><![CDATA[<p>The best available research supports a “guesstimate” that sometime within the next five to fifteen years, researchers will be able to derive human eggs and sperm from pluripotent stem cells, according to Robin Lovell-Badge of the UK National Institute for Medical Research. Speaking at an American Association for the Advancement of Science panel yesterday on the science, ethics, and policy challenges of deriving human eggs and sperm, or gametes, from pluripotent stem cells, Lovell-Badge emphasized that the scientific hurdles should not be underestimated. Eggs and sperm are very complex cells, and it takes very complex biological processes to make them.</p>
<p>Lovell-Badge further argued that it will probably be extremely difficult to derive eggs that could be used for reproduction from XY (chromosomally male) cells, and even more difficult, if not impossible, to derive sperm that could be used for reproduction from XX (chromosomally female) cells. Nonetheless, the science is worth pursuing because of the difficulty of studying germ cells <em>in vivo</em>, and the potential benefits of being able to study them <em>in vitro</em>.</p>
<p>The AAAS, the Johns Hopkins Berman Institute of Bioethics, and the British Embassy co-sponsored the panel, “The Science, Ethics and Policy Challenges of Pluripotent Stem Cell-Derived Gametes,” which served as a report on the April meeting of the Hinxton Group, an international consortium on stem cells, ethics, and law. Alan I. Leshner, CEO of AAAS, moderated the group, which included Lovell-Badge, PhD, FMedSci, FRS, Head of Division of Stem Cell Biology and Developmental Genetics, MRC National Institute for Medical Research (UK); Ruth Faden, PhD, MPH, Philip Franklin Wagley Professor of Biomedical Ethics and Executive Director, Berman Institute of Bioethics, Johns Hopkins University; and Debra Matthews, PhD, MA, Assistant Director for Science Programs, Berman Institute of Bioethics, and Assistant Professor, Department of Pediatrics, Johns Hopkins University.</p>
<p>Lovell-Badge also mentioned a long list of projected scientific uses of in-vitro derived germ cells and gametes in basic research, including a better understanding of the role of specific genes in biological processes and <em>in vitro</em> genetics. He also explained clinical uses of <em>in vitro</em> derived oocytes and sperm, emphasizing in particular the projected fertility treatments. Those include treatments for premature ovarian failure, post-menopausal women, new methods of contraception, and germ-line gene therapy for patients with defined genetic diseases. He also talked about the possibility of same sex reproduction, but emphasized that the Hinxton Group concluded this would be extremely difficult or even practically impossible.</p>
<p>Ruth Faden discussed the ethical issues and societal implications of the science of stem cell-derived gametes. She began by making a distinction between ethical challenges relating to the methods of undertaking the science and ethical challenges raised by its possible applications. The former are means-related ethical challenges while the latter are end-related. With regards to the means, she noted that in order for this science to proceed at all, there is an unavoidable need to create human embryos solely for research, maintain them at least until the blastocyst stage, and then destroy them. There is no way to get around this because the only way of establishing that two cells are in fact a viable sperm and a viable egg is to observe them joining to form an embryo. Thus, proof of concept requires the creation of embryos for research. Once it is established that they are, in fact, gametes, scientists can then answer many important questions simply by studying the eggs and sperm that have been derived <em>in vitro</em>. Faden pointed out that currently, the only way to produce eggs for research is by hyperstimulation of the ovaries. The technology, if successful, can get around this difficulty and allow the production of eggs for research without having to resort to taking eggs from women.</p>
<p>As far as the ends are concerned, Faden pointed out that again, an unavoidable feature of scientific knowledge is that it can be used for multiple ends, some of which may be socially controversial. While there are clear, uncontroversial, and good outcomes, including the prevention and treatment of infertility and cancers, there are also more societally controversial ends, such as the possibility of germ line genetic modification, genetic enhancement, and the possibility of same sex offspring. Faden emphasized the importance of highlighting the science as we know it and its avenues of application as we go forward. She underlined the need to have a straightforward description and discussion of these issues from the outset, rather than let them come out of the woodworks in unhelpful ways down the line.</p>
<p>Debra Matthews addressed the policy implications of those ethical and societal challenges, pointing out that there is a great deal of variation among societies in their responses to different aspects of this research. She also stressed that the Hinxton Group acknowledges that societies do have the authority to regulate science, and that scientists do have an obligation to follow the law. Within this larger context, however, the Group’s main policy recommendation is that the mere presence of moral disagreement does not in and of itself justify restrictive policy. Instead, it signals a need for debate on the hard issues until a sufficient consensus can inform intelligent policy. The approach that seeks to avoid all difficulties by automatically banning research about which there is moral disagreement is a bad one.</p>
<p>Matthews said that there was broad agreement within the Group that the standard should be demonstrable risks. With regard to pluripotent stem cell-derived gametes, this standard appears to have been met. There are indeed safety concerns relating to the derivation of gametes from stem cells, and this requires strong oversight mechanisms to regulate the research. Initial attempts to implant embryos need to happen within the context of research, she said: sustained follow-up and care of pregnant women, as well as long-term follow-up of their children must happen with the appropriate oversight. Any individual providing tissue, such as skin cells, should give explicit consent in order for that tissue to be useable for de-differentiation and production of eggs or sperm. This is in contrast to current <em>in vitro</em> fertility treatment, where donors do not have to give consent for the use of their sperm or eggs in particular ways. Since IVF was not originally developed in the context of research, there was not the same kind of oversight. Insisting that this work be conducted in the context of research provides the right kind of oversight to regulate it and ensure its safety and ethical acceptability, she said.</p>
<p>In response to questions, panelists made three additional points: first, they pointed out that if we take IVF to be morally acceptable, then it is not clear, once safety issues are addressed, what the difference would be with stem cell-derived eggs and sperm. The panelists argued that where the egg and sperm come from does not in itself make an ethical difference. If we are OK with IVF, we should be fine with IVF using stem cell-derived gametes as long as any residual safety issues have been addressed. They also emphasized that even if this research were never put to reproductive use, whether for safety or for ethical reasons, there is still a value to the science. Finally, they stressed the need for straightforward, transparent, and respectful dialogue about the science and its implications.</p>
<p><em><a href="http://www.bioethicsinstitute.org/web/page/518/sectionid/376/pagelevel/2/interior.asp">Sirine Shebaya</a> is a Greenwall Fellow with the Berman Institute of Bioethics. </em></p>
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