November 2004

Euthanasia in France and Netherlands

Lawmakers in France today approved passive euthanasia, but, "while a first in France, the legislation falls far short of laws in Netherlands and Belgium that allow active euthanasia under strict circumstances, and Switzerland, which allows certain forms of patient suicide."

AP reports on the incredible announcement from Amsterdam that Groningen Academic Hospital has created an independent board to review cases for euthanasia of terminally ill persons with "no free will," which includes "children, the severely mentally retarded and people left in an irreversible coma after an accident." The Health Ministry is preparing an answer to the regulations.

Three years ago, the Dutch parliament made it legal for doctors to inject a sedative and a lethal dose of muscle relaxant at the request of adult patients suffering great pain with no hope of relief.


The Groningen Protocol, as the hospital's guidelines have come to be known, would create a legal framework for permitting doctors to actively end the life of newborns deemed to be in similar pain from incurable disease or extreme deformities.

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EPA Criteria for Pesticide Dangers are Unethical and Flawed

Flawed Pesticide Studies Using Human Subjects Could Result In Higher Allowable Exposures For Both Children And Adults, trumpets perhaps the most comprehensive review ever of a set of studies at the EPA, published in the American Journal of Public Health. The study:
found the studies flawed by conflict of interest, failure to meet ethical standards established by the Declaration of Helsinki, unacceptable informed consent procedures, inadequate statistical power and inappropriate test methods and end points.

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What is a Blog?

Inquiring minds want to know. [Instapundit]

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An AIDS Vaccine that Works??

Nature Medicine reports that a French research trial fuels hope for prevention and mollification of the effects of HIV infection. Even as preliminary data, this is promises to be the biggest news in the history of HIV & AIDS research and will be cause for much discussion about next steps. The sample size is very very small and it is very important that the results not be blown out of proportion, which no doubt they will - although at the time of this posting lots of American papers are clueless about this finding. But let's just say that the research pans out ... what happens then? Let your mind wander back to the early science and policy wars over the way in which AIDS research is prioritized, and then consider a political world in which gay marriage might have been the defining issue in an election that brought to power a president who "owes" fundamentalist protestants and despises the UN...

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Happy Birthday to Us

We're two months old today. Thanks to more than 24,000 visitors who've read 146 posts. Thanks to guest bloggers Art Caplan and Dominic Sisti. Thanks to John Kwon for building the link to AJOB's news function, and to more than a dozen reporters who offered great advice, especially our friends at Wall Street Journal. Thanks to more than a dozen blogs who've linked to us, and to the readers who nominated us for seven different Best of the Blogs, EDUblog, and Best Medical Blog awards. And thanks to a couple of dozen moms, high school teachers and casual surfers who've written comments, including really nice cheerleading comments, so far. Thanks to those who have pilfered this stuff for the bioethics listservs and for newspaper and newsletter stories. I said we'd try this experiment for 60 days, the idea of a journal's editors doing a blog is pretty odd after all. I'm ready to say that if not yet successful this is at least worth extending for another four months. After that we'll see. For now look for more guests and an 'alert network' that will feed us (and you) news. And there is a pretty good chance we'll be acquired by a prominent blogging company with whom we're in negotiations, if I can only get them to agree to pay for my kids' college education, or at least more than a cup of coffee. Oh yeah and speaking of that, your clicks on sponsor ads have raised almost $6 for our non-profit bioethics education group, which will go a long way toward buying coffee for a couple of students at ASBH! - GM

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Interesting New Data on Ethical Safeguards in Psychiatric Research

In December's American Journal of Psychiatry, data are presented that indicate the key safeguards of ethical research – informed consent, alternative decision makers, institutional review boards, data safety monitoring boards, and confidentiality measures- are recognized by both research subjects and researchers as important measures used to protect subjects' rights and well-being. Does a positive recognition of these safeguards by the stakeholders say anything about the effectiveness of the safeguards themselves? -Dominic Sisti

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Keine Cloning

Germany's Ethics Council rejects cloning today. No doubt reacting in part to the last week's news about laws allowing embryo cloning research in Switzerland and Britain, the ethics group affirmed its previous position but did ask Germany's legislative body to discuss the matter again soon.

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Arf Arf Arf

From Christian Science Monitor:
Is it necessarily the right choice to apply advanced medical technology to animals? Is it really the best option for the animal involved? And is it always the right choice for the pet owner, who might in some cases accrue staggering veterinary bills?
[thanks Art Caplan]

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Preparing to Use Medical Marijuana?

NY Times' coverage of the Supreme Court deliberations and the context of the case, which we have already blogged to death, is pretty good, but the constitutional subtlety is mind numbing, as seen in this Christian Science Monitor piece. Hey, cut to the chase: here's the Marijuana Policy Project briefing, this is a link to the IOM report, and this is what the Court said on this matter the last time the Bush administration came knocking.

If the ruling works out, it's on sale at Target. Only 4-8 weeks to get it when you order now. Or click "add to my wish list," dude.

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More Debate on Memory Erasing Drugs

brainpic from article Washington Post discusses the use of Propranolol on stress, with the aim of eliminating the trauma of difficult memories. Although there are a number of clear candidates for such therapy, such as victims of domestic and political violence, the luddites and neocons are grumpy: "'All of us can think of traumatic events in our lives that were horrible at the time but made us who we are. I’m not sure we’d want to wipe those memories out,' said Rebecca Dresser, a medical ethicist at Washington University in St. Louis who serves on the President’s Council on Bioethics, which condemned the research last year. 'We don’t have an omniscient view of what’s best for the world.'" Suffer, spake the sage.

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Swiss Voters Support Embryonic Stem Cell Research

In the first vote ever by a populace on the legality of embryonic stem cell research, Swiss affirmed a government plan to use (only) leftover embryos of a particular age, and only when those embryos would not be used otherwise. Opponents included both the influential Swiss Catholic Church and the Green Party.

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Korean Stem Cell Claims

This story in the Korean times makes the claim that Korean researchers have demonstrated the ability of this patient to walk as a result of umbilical cord blood derived stem cells. The story is being trumpeted everywhere as the 'research Reeve was pushing for, if only society would have allowed it to go forward', but in fact the most likely spin of this report - if it even turns out to be real and replicable - will be that the embryo-derived stem cells Reeve lobbied for aren't what he needed. Which may or may not be true, but either way it is annoying because the power of adult cells to heal cannot be fully explored without continuing research on embryos at least for a few more years.

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Pro-Life? Show it with Child Health Policy

Mark Tushnet, a constitutional law scholar, argues carefully that the most important question about pro-life positions is their coherence. He demonstrates that the problem with pro-life arguments is that they are at best backed up by nominal support for "pregnancy crisis" centers, or for support of children in adoptions. Where is the committed right wing effort to decrease the amount of suffering among children of poor health? Then Governor Bush was much criticized in the 2000 election for the failure of his Texas administration to implement serious child health coverage reforms, for example.

And today? Though there is little federal information about abortion's prevalence during the first W. Bush administration, Christian ethicist Glen Stassen discusses the data that suggests that abortions have dramatically increased since President Bush took office. Perhaps the fear that women quite obviously (and rightly) have about the lack of sufficient child care might play more than a minor causal role in this pretty interesting correlation. (thanks to metafilter.

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British Sperm Shortage

The Brits are getting antsy as their sperm supplies dry up on the cusp of new donor transparency regulations. A Danish sperm bank - Cryos International - is readying its supplies in order to corner the UK market. In part because they export "Scandanavian looks" all over the world, Cryos is the world's preeminent sperm bank. - Dominic Sisti

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Little Updates from Thanksgiving Weekend

Several of the things that happened while we were gobbling:

Tulane may not be setting up the Big Easy Bioethics Center just yet but it is at least setting up a pretty interesting speakers' series. Don't go drunk, except maybe to the enhancement lecture.

There aren't many people working on the bioethics of IT-driven genomics, although much is being written in the popular literature. Most recently the fields have begun to set up conferences at which a lexicon is developed as well as a kind of institutional history of the ways in which all of the relevant fields (and there are many) have begun to converge. Ok a little plug: one of us has written a book about computational genomics and ethics, but only four people in his immediate family read it.

A symbol was paraded of the UK's problem establishing any kind of marrow registry enrollment among those of minority ethnic background. Asian families in particular do not often donate bone marrow.

Speaking of children in the UK who require special assistance, this piece in the News Telegraph chronicles the NHS' controversial decision to fund preimplantation diagnosis (and IVF) for families who seek to have a child in part to secure a donation. Covering the same story of Zain Hashmi, the piece highlights the problem for those of minority ethnic background.

China has a mess on its hands with DNA identification:

A non-regular investigation conducted recently in Zhejiang Province indicated that the requests for DNA identification of ones own children are rapidly increasing at a rate of 40 - 50% every year.

So George Annas isn't the only bioethicist playwright (although he is damn good): Christmas Carol has been adapted by Santina Maiolatesi of Chesapeake Research Review (along with Doris Baizley). No word on who will play Mini Tim.

Swiss News agency The Local discusses the off-label prescription of medications in children in the EU, in particular in Sweden, at Karolinska Institutet and elsewhere, noting a new European Commission regulation that requires that medical companies "begin testing medicines intended for children on children."

An Orlando judge has upheld the living will of a 73-year-old Florida man, after it was argued that his wife's durable power of attorney (a general, not a healthcare document) might trump the living will. His wife argued vehemently that she could not agree to disconnect his life support systems. The effect of the news is hard to judge, but it appears that we are in for more confusion about what these documents mean and how they relate to the legal system and to other legal instruments. Helpfully, the Florida legislature has not offered any specific instructions on how to interpret the role of any other documents, so the judge gets to make up new policy de novo!

Another piece on how sperm donors from Denmark are so hip.

Drug Policy Alliance offers its interpretation of the Monday Supreme Court deliberations on medical marijuana, which are to involve questions both of states' rights and of the scope of drug and medical policy.

Kangla Online reports that Imphal, India based Regional Institute of Medical Sciences has been admitted to the UNESCO bioethics world network. Imphal is in the northeast of India, a nation that is becoming an international bioethics powerhouse, in part due to the incredible focus on sex selection in the nation but also due to pretty innovative approaches to law and philosophy of medicine there.

You think you could be an unethical sort? The kind of person who would put the ring of Gyges to its most obvious use? Would you torture prisoners? You are human, so the answer is probably yes, or so new research on cruelty suggests.

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See The Wizard

John KwonJohn Kwon has been the often quiet voice behind the design of The American Journal of Bioethics' website for years. John is the most amazing graphic/web design person with whom I've ever worked since I started the first philosophy website back in 1994. In the four years that John has been with my team, he has helped make bioethics.net the most visited site in bioethics (it was the first as well), and that site in turn has helped propel the journal and numerous other projects (e.g., bioethics for high school students, bioethics for beginners, and my favorite recent project (ok, well, so I was the PI on this and maybe I am biased...), the bioethics 'studio' project, today called Penn Studio). You'd never know it from a casual conversation with him - he's much too modest - but John is the guy behind the curtain. It is about time someone pushed him into the spotlight he's created. - GM

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Three Kills and You're Out

New York Times reports on the Florida approval of a three-strikes law that will automatically revoke the medical license of any doctor hit with three malpractice judgments. "'It has branded the state as probably the most unfriendly state for physicians,' said Dr. Robert Yelverton, an obstetrician and gynecologist in Tampa."

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Living Wills Do Not Work

The Hastings Center Report article on living wills' failure has drawn notice pretty much everywhere in the major media. Many others have made similar claims (e.g., here), but this piece is quite good and apparently timely as well.

Living wills have become one of bioethics' most embarrassing failures - an imaginative idea that has the support of the majority of bioethicists despite a total lack of support for their efficacy. From the start it has been clear to at least some of us that these documents just make things more confusing and litigious. An incredibly imaginative experiment, it is time to call living wills just that - an experiment, based on little data and thrust out into the medical community at large on the strength of a few prominent persistent vegetative state cases. Given the coverage of this most recent missive in the debate about how to handle patient wishes at the end of life, it will be interesting to see if hospital ethics committees continue to assert that living wills are a smart thing for patients to have.

It is high time for some legislative retooling of the Patient Self-Determination Act and supporting state legislation. The experiment has failed. Time to pull the plug.

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Why No Bioethics on the California Proposition 71 Governing Council?

Why doesn't California put a bioethicist on its Proposition 71 governing board dealing with the $3 billion to be allocated for stem cell research? University Chancellors and Presidents are being nominated up and down as schools' and institutes' top guns clamor to be public intellectuals on this big-ticket funding item, no doubt in part to ensure that their shop gets some of the money. The proposition guarantees seats on the board to some institutions (including the 5 UCal schools), but why in the world can't there be some slots dedicated to bioethics?

No matter what your position on stem cell research, there simply must be a dedicated stem cell ethics expert among the governors. If it weren't so serious a matter, one would have to laugh at the idea that these University and institute administrators are properly trained to think about how and whether to dispense the money and for which studies. It is a question several are beginning to ask anew, echoing concerns from those who opposed Prop 71 but themselves supported hES research. Bioethics in California has always been a developing phenomenon, although the Stanford center is arguably among the top programs in the nation. Hopefully at least some of the ballast for deliberations about which programs should be funded will be provided by people in stem cell bioethics in California. But that is a very, very short list of people.

Even more important, California should finally begin to build up some bioethics programs, particularly in the universities that plan to do significant new stem cell research. If the past is any predictor, that will not be easily accomplished in California, where bioethics has just never really taken a foothold in terms of university budgets and powerhouse faculties. There are plenty of good people in bioethics in California, but it is difficult to identify a group of major research centers in bioethics in the state, despite its preeminent place in biotechnology research. Proposition 71 should be the full employment act for California bioethics, to borrow Art Caplan's description of the role ethics money in the Human Genome Project had on bioethics in the 1990s. But if it is business as usual in the most populous state in the nation, bioethics may become an unfunded sport for university CEOs. That would not only hurt bioethics, it would hurt the people of California, who are clearly hoping for a careful, smart use of the $3 billion windfall for stem cells. For them, ethics has to stay in the mix in a serious way.

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California DNA Law Worrisome Threat to Privacy

In a move that has privacy advocates worried, California voters approved proposition 69, an aggressive DNA-collection program. The new law, officially called the DNA Fingerprint, Unsolved Crime and Innocence Protection Act, will collect data from anyone convicted of, or arrested for a felony. It is expected to add the genetic data of about a million people to California's databank over the five years, making it the largest state-run DNA databank in the country.

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Bioethics Abandons the Creationism Debate

Texbook disclaimer stickers are here. Bioethicists remain oddly silent on the issue of teaching evolution in schools. Given the renewed efforts of creationists to both discredit evolution and to have creationism taught as science rather than as religion this paucity of comment is inexcusable. This website nicely captures the dangers that await high school kids when those in bioethics fail to comment on one of the core ethical challenges facing biomedicine--that its foundational theory ought not be taught in American schools as science! - Art Caplan UPDATE: polls confirm that most Americans adhere to at least some creationist views.

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Living Wills Have "Failed"

Here in the Miami Herarld is an account of a recent paper in the Hastings Center Report, which describes the failure of living wills- paper documents that list medical choices if you become terminal and incapacitated. A more helpful thing to do- although by far not foolproof- is designate a trusted surrogate to make your end-of-life choices. "Another choice that holds less legal weight but perhaps more influence: thoughtful conversations in advance with your regular doctors."

-Dominic Sisti

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Depo-Provera Safety

Majikthise blogs a London Globe and Mail news release that is getting almost no media attention in the U.S.: Pfizer's injectible contraceptive can cause irreversible bone loss, putting users at significantly increased risk for osteoporosis. FDA has just required Pfizer to put a black box warning on Depo indicating that it should be used only if no other birth control mechanism is adequate. Where are the discussions of the evolution of this warning?

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Moving Toward Bioethics in Secondary School

Ethics and Topical Issues Could Replace Traditional Sciences , writes RedNova. "Teenagers will be able to ditch traditional science studies and focus on the ethics of hot topics like cloning and MMR, under GCSE reforms outlined this week." Is this true? Feedback from partner teachers working with Penn's high school bioethics project would indicate that unless the teaching of bioethics somehow replaced the teaching of science, it would be a welcome option. Many teachers tell us they don't have the time and, some say, the training to teach bioethics in a systematic way. Nonetheless teachers fit bioethics in because they are interested, their students are interested & ask the right questions, and because by teaching basic science in a broader context they can point out the relevance of emerging technologies for students, their families, and society. -Dominic Sisti

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Compassion in Hemlock

Right-to-die groups plan to merge next year, writes Don Colburn of the Oregonian. Denver-based End-of-Life Choices (formerly the Hemlock Society) and Compassion in Dying of Oregon will merge to form Compassion and Choices. Plans for a drive-through death service have not been announced.

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Privacy, but Not So Much

Economist reports today on a new idea that really is half-baked. Because of rising complaints among British patients of abuse by physicians during intimate examinations, particularly sexual abuse, the Virtual Chaperone has been invented. It is a clever name, sort of, for a video camera and microphone in the examination room, recording every detail of the examination so as to protect both patient and physician. Sounds like the sort of solution a malpractice lawyer would work out.

One of my favorite passages in The Republic involves Socrates' discussion of a ring that allows the wearer to become invisible and undetectable. The discussion that ensues is about what sort of thing those with whom Socrates is in dialog would do with that kind of power. Eventually they are honest and admit that with that power they would be unable to resist using the power to get away with all sorts of evils. Socrates makes the interesting point that one can only be trustworthy when there is the temptation to violate the trust of someone, that is, there's no point in discussing whether or not you are a good person until you have the opportunity to be bad without anyone's knowing it. This is the essence of clinical trust. If you are going to violate patients unless there is a camera in the room, you really shouldn't be a physician. But that is no argument for cameras to root out dangerous docs.

Cameras cannot protect a patient from a physician, and there is simply no way to justify the additional invasion of privacy - from a camera designed only to protect physicians from charges of sexual abuse. Think about it - the physician has you naked. They do exams that are intimate. If they are drawing enjoyment from that, beyond what is appropriate for a clinician, how in the world are you going to prevent that by exposing the patient to a further violation of privacy? The risk is also pretty obvious that the tapes will be stolen: keep in mind that the cameras are supposed to be super-discrete (says the Economist), so how long do you think it will be before those videos are traded among residents, or even uploaded or sold as porn tapes? This is a really stupid idea, and the Economist appears to have thought about it for all of fifteen minutes.

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Reports of Bioethics' Demise Seem a Bit Premature

Writing in the November 13th issue of The Lancet (Vol. 364, no 9447, p.1749) Roger Cooter of the Wellcome Trust Centre for the History of Medicine at University College London offers an amazing assessment of the field of bioethics;

“Hardly wet behind the ears, bioethics seems destined for a short lifespan. Conspiring against it is exposure of the funding of some if its US centres by pharmaceutical companies; exclusion of alternative perspectives from the social sciences, retention of narrow analytical notions of ethics in the face of popular expression and academic respect for the place of emotions; divisions within the discipline (including one over its origins and meaning); and collusion with, and appropriation by, clinical medicine. To many its embrace of everything bearing on human life renders it, paradoxically, bankrupt."

I could go on (and he does a bit more) but you get the point. We are all familiar with the sad state of British University life as cut after cut decimates the ranks of the professoriate there but have things really degenerated to the point where a hack is offering this sort of loony assessment as serious analysis (and getting it published to boot)?

Every so often British physicians and university purists and their publications try to pronounce bioethics dead. This latest declaration seems to have been penned by someone who cannot, however, diagnose the difference between a field (not a discipline!) entering into middle age with all its attendant crises of self assessment and self-doubt and a field that has never been more firmly entrenched within colleges, medical schools and other institutions not only in North America but, if the numbers showing up for the International Association of Bioethics meeting in Australia are any indication, worldwide.

Just to put things right in case Professor Cooter is having a hard time seeing what is going on in the field by what must be a very dim light underwritten by the laundered drug money funding that provides his full career support;

there are no academic bioethics centers in the United States funded by pharmaceutical companies, the only centers/programs/persons funded by private sources involve right to life or political orientations inclining to the right;

it is fairly easy to find out which centers/programs, persons have accepted grants or contracts or gifts by asking them (no EXPOSURE –insert Cooter’s heavy breathing here—required),

no academic bioethics center or medical ethics program has received more than a tiny percentage of funding from drug companies (some think they ought to be providing more funding in the way of general, unrestricted gifts),

the social sciences are not excluded from bioethics and, in fact, there is some danger that empirical bioethics may come to dominate all other modes of inquiry although quantitative social science may lie outside Cooter’s ken,

there is no intolerance of the emotions on the part of bioethicists—there is however an intolerance of using emotional responses as a form of argument (what I many years ago dubbed the Yuk factor) as well there should be,

there are divisions within the field (again not discipline) as again well there should be—it is a sign of intellectual vitality perhaps not recognized among the few remaining British historians of medicine,nor is there collusion with academic medicine unless talking to one’s colleagues if one works in a medical school happens to constitute cooptation or collusion.

Cooter’s worry about bioethics' “embrace of everything bearing on human life” I leave to more level-headed students of the sexuality of intellectual life than myself.

Cooter’s bizarre screed follows hard on the heels of Carl Elliot’s discovery of a new form of argument in a just out piece in the Hastings Center Report—arguendo ad Pfizer. By intoning Pfizer repeatedly Professor Elliot seems to think he can confirm Professor Cooter’s contention that bioethics has sold itself out to Big Pharma.

Cooter, Elliot and others seem so irritated by bioethics or some bioethicists that they either have to pronounce the field finished or irrevocably tainted. My hunch is that this sort of nonsense is a sign that whatever else it is doing, bioethics is being appropriately irritating to pedants everywhere. - Art Caplan

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"Motorcyle Diaries" a Medical Ethics Flick

Unbeknownst to young Ernesto 'Che' Guevara, he was both a political revolutionary and a medical ethicist. The latter led to the former. On his journey, Che noticed the direct relationship between how a society treats its sick and its poor & the ethics (or lack thereof) of said society. What might this relationship tell us about a nation complacent in the face of 45 million uninsured and millions more left without adequate health care? -Dominic Sisti

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Last Minute Abortion Language in the Budget

An 11th hour provision was added to a spending bill that is needed to keep federal agencies up and running. Most of the language is a continuation of past years. The new language would give "conscience protection" to physicians who oppose abortion. -Dominic Sisti

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Asian Stem Cell Labs Dwarf Ours

Labs in Beijing, Shanghai, Seoul, and Singapore have begun to dwarf labs in the UK, and by extension the US, in terms of physical space, talent, and most important in terms of development of cell lines, and particularly across species lines. We've blogged to death about the insecurity in Wisconsin about other states, particularly California, hogging the stem cell research dollars. And yes, Advanced Cell Technology is moving there. But no state in the U.S. has spent half the money that is budgeted in the research groups in Asia, and it is beginning to show.

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Ads to Get a Liver Condemned by UNOS

Houston Chronicle and Richmond Times Dispatch report on the UNOS decision to recommend that transplant programs refuse to transplant organs where solicitation for those organs has been performed. The recommendation is just that, and there was no modification of official policy of UNOS, so hospitals are free to ignore UNOS on this matter. The Houston hospital where the pivotal case under discussion occurred has already planned to review its policies:
Todd Krampitz garnered national attention last summer when he advertised for a new liver on two Houston billboards and a Web site. Doctors had diagnosed the 32-year-old Houston man's severe liver cancer in May, and he was deemed too sick to be placed on donor lists.


A week after going public, Krampitz received an organ from an out-of-state family who had heard of his plight. The operation was performed at The Methodist Hospital.


Sherril Lanthier, director of the Multiorgan Transplant Center at The Methodist Hospital, said the hospital will review the new recommendation announced late Friday.


"We look at everything that comes from UNOS and we follow their guidelines," Lanthier said. "We will look at it ourselves and make a policy within the hospital."


But she added: "We can't control what our patients do. We certainly don't advocate it."


After Krampitz's surgery, he and his wife, Julie, put up another billboard saying "Thank You," and encouraged more people to consider organ donation. After their successful appeal, others in need of organs used similar campaigns.


The nearly unanimous vote Thursday by UNOS officially condemned soliciting organ donations through advertising.

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Move Over, ISI Citation Index

Off topic a bit, but very important news for anyone who uses the web in research for scholarly papers and books: for years now, the ISI indices, a costly system of interrelated citation databases that track thousands of publications in dozens of disciplines, have been pretty much the only way to track how papers are cited and used. Many universities actually grade faculty on the basis of a "citation count" from ISI, and journals (like ours) make claims about their influence on the basis of similar ISI searches. Enter Google Scholar. This service will literally revolutionize the tracking of the lifetimes and reach of articles, because it at a minimum provides a much, much wider scan of articles than does ISI, and the implication of Google providing this service is that it can be integrated into the Internet at large. It is pretty easy to speculate that if John Dewey were alive, he would mark this event among the more important possible links between the scholarly world and public discourse. According to MIT's Blogdex, the best ranking of "who is visiting what on the Internet," scholar.google.com was the single most visited site on the entire Internet today. Needless to say, bioethics journals and their publications show up all over this thing, which is still in beta by the way, and it will be fun to pick around. If you find anything (after you do your vanity search) let us know.

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UN deadlock defeats cloning ban

After a number of delays and much maneuvering and politicking, a deadlocked United Nations has finally defeated a ban on therapeutic (research) cloning. The defeat is a blow to the Bush Administration, which has tried for years to get the international body to throw its weight behind a ban on the technology. While almost all nations support a ban on human reproductive cloning -- cloning procedures that result in a living child -- many nations support the use of cloning technology for medical research. In fact, much of the research goes on in the United States, and a three billion dollar bond issue in California promises to keep the US in the forefront of such research, unless our more conservative Congress passes a US ban.

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A More Dramatic Case Than Schiavo - Major Story

From Art Caplan:
HOSPITAL, WIFE BATTLE OVER PATIENT'S LIFE A HEARING IN ORANGE WILL CONSIDER THE FATE OF A CLERMONT MAN WHO HAS A LIVING WILL.

BY ANTHONY COLAROSSI | SENTINEL STAFF WRITER
POSTED NOVEMBER 18, 2004


Hanford Pinette made his wishes clear in a living will: He never wanted to be kept alive by a machine.


Today Pinette, 73, lies in an Orlando hospital, where machines run his lungs and kidneys. Doctors see an unresponsive patient with no hope of recovery. Alice Pinette sees her husband of 53 years clinging to life.


Now the Clermont man's fate will be fought out in a courtroom in an unusual battle waged by Orlando Regional Healthcare System officials, who want to let him die, against Alice Pinette, who wants to keep him alive.


"They're just trying to pull the plugs," Alice Pinette, 73, said Wednesday, standing in the doorway of her home. "He still communicates with me, and I won't let them do it."


A hearing in the case is scheduled for Tuesday before Orange Circuit Court Judge Lawrence Kirkwood. The outcome could have broad implications on the enforcement of living wills, which are supposed to remove uncertainty about a patient's wishes in the event of a terminal illness and incapacity.


Paul Malley, president of the Tallahassee-based Aging With Dignity, a national organization that advises people about the benefits of living wills, said he could not recall a Florida hospital going to court to enforce a written living will over the wishes of a patient's family.


"It's definitely highly unusual for a hospital to bring up a case like this," Malley said. "Where this case is, is a real challenge. There may not be an easy answer here."


The argument doesn't center on Pinette's wishes, but whether he's sick enough to carry them out.


"He's all right," Alice Pinette said. "He's getting better, a little each day."


David L. Evans, Orlando Regional Healthcare's lawyer, said the hospital maintains Pinette will not get better and is trying to abide by the patient's wishes.


"All we can do is come in and describe his medical condition and his competency," Evans said last week. "We're just doing what we feel we're legally obligated to do."


The Pinette matter is almost a reversal of the Terri Schiavo case.


Schiavo collapsed 14 years ago and is now in a Clearwater nursing home in what doctors call a progressive vegetative state. She is kept alive by a feeding tube and left no written directive of her wishes.


Schiavo's husband, Michael, contends his wife told him she would not want to be kept alive. Her parents, Bob and Mary Schindler, have battled Schiavo in court, arguing their daughter is aware of her surroundings.


The case sparked a national controversy when Gov. Jeb Bush and the Florida Legislature intervened to block a court order removing Terri Schiavo's feeding tube. The courts ruled in Michael Schiavo's favor and the case remains on appeal in Florida's courts.


The case has been cited as an example of why people need to write living wills.


Pinette, a Korean War veteran and government engineer who moved to Clermont in 1994 from Maryland to retire, wrote a living will in 1998 and assigned his wife to carry out his wishes, designating her as his "surrogate."


In the event of a terminal condition with no probability of recovery, Pinette stated: "I direct that life-prolonging procedures be withheld or withdrawn when the application of such procedures would serve only to prolong the process of dying."


Pinette stated in the will that he wanted "to die naturally" and receive medication only to "alleviate pain."


But Alice Pinette produced a durable power of attorney signed by her husband on the same date in 1998.


The power of attorney states her husband assigned her "to decide for me [Hanford Pinette] any matters regarding my health care, including, but not limited to, consenting to withhold or withdraw life-prolonging procedures."


Earlier this year, Pinette suffered congestive heart failure, his wife said. He has been hospitalized since February, according to the petition filed by Orlando Regional Healthcare, and is currently at Lucerne Hospital.

Despite Alice Pinette's assertions that her husband is not terminally ill, the hospital argues in court documents that Pinette's "renal system, respiratory system and cardiovascular system are all being supported by artificial means alone."


The petition also says Pinette is not competent to make his own decisions and is not likely to recover his mental capacity. The hospital's bioethics committee which reviews cases such as this also agreed to withdraw life support.


And two doctors -- Sanjay Muttreja and Juan Herran -- submitted affidavits that Pinette is terminally ill and has no "medical probability" of recovering.

"It is my opinion as Mr. Pinette's treating physician that Mr. Pinette meets the requirements of his living will," Muttreja said in his affidavit.

But Alice Pinette, who goes to the hospital daily, said her husband "still communicates with me."


She said Pinette squeezes her hand, shakes his head and has indicated that "he wants to go home."


That is proof enough to her that he's not terminally ill.

"There's a lot of people they say that about, and it's not true," she said. "They've been after me since July to put him down."

Robert Wilkins, a Maitland attorney whose practice includes living wills, said Alice Pinette is fighting an uphill battle.

"You should be able to control your own destiny and a surrogate shouldn't be able to override that," Wilkins said. "It really isn't her prerogative, it seems to me, to disregard that."

Wilkins said Alice Pinette's best hope is if her attorney can successfully argue that the living will is invalid.

Alice Pinette's attorney, William E. Ruffier, could not be reached for comment Wednesday.


Malley, the Aging With Dignity president, said the case may help others avoid this situation by talking about living wills and the responsibilities of the surrogate before it's too late.


The best person to be someone's surrogate, for instance, might not be his or her spouse, Malley said.


"It's a difficult situation," Malley said. "But it can be avoided with other families."

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The FDA's Darkest Days Are Here

FDA Is Flexing Less Muscle, write Marc Kaufman and Brooke Masters in this major page one story on the FDA. The gist:
In the past four years, the Food and Drug Administration has taken a noticeably less aggressive approach toward policing drugs that cause harmful side effects, records show, leading some lawmakers, academics and consumer advocates to complain that the agency is focusing more on bolstering the pharmaceutical industry than protecting public health.
Today the New York Times joins in the page one coverage
:Federal drug regulators are "virtually incapable of protecting America" from unsafe drugs, a federal drug safety reviewer told a Congressional panel on Thursday, and he named five drugs now on the market whose safety needs "to be seriously looked at."

In testimony before the Senate Finance Committee, Dr. David
Graham, the reviewer in the Food and Drug Administration's
office of safety research, used fiery language to denounce
his agency as feckless and far too likely to surrender to
demands of drug makers.

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Illinois' Stem Cell Aspirations Take a Dive

Illinois Senate has moments ago canned its amendment promoting stem cell work in the state. The story is still developing but Wesley Smith posted it on MCW. More:
The defeat of the amended version of HB 3859, which opponents argued would allow "laboratory cloning" as part of stem cell research, depended upon the votes of Downstate Democrats.


Republican senators Kirk Dillard, Christine Radogno and Adeleine Geo-Karis broke ranks with the Republican caucus and voted to support the measure.

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Cockroach Ethics

Wondering why the cockroaches will kill us once they take over the world?
Garnet Hertz will be showing his most recent prototype: a cockroach-controlled mobile robot system. The system uses a living Madagascan hissing cockroach atop a modified trackball to control a three-wheeled robot. Infrared sensors also provide navigation feedback to create a semi-intelligent system, with the cockroach as the CPU. This work will be framed within the contexts of intelligence, embodiment, artificial life, the history robotics, and Michael Jackson.

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RU-486 Suspension

Is it coming?

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Where I Want to Be Ill

The Medical Center of North Texas has wireless internet in its facilities. All the better to bug your doctor about that favorite alternative medicine website. Just take your laptop right into the doc's office and you can show her your sites live. Anyone want to bet on how long this lasts? On the other hand waiting times won't be such an issue anymore for wireless mavens...

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Guest Blogger Dominic Sisti

Welcome to Dominic Sisti, our Guest blogger for the next few months. Those of you with interest in bioethics for high school students know him, and we think he's great.
Here's a biosketch: Dominic A. Sisti is a researcher at the University of Pennsylvania Center for Bioethics, an ethicist at Holy Redeemer Health System in Philadelphia, and an adjunct instructor at Villanova University. Dominic received his master's degree from the University of Pennsylvania (Bioethics, 2000) and his Bachelor of Science degree from Villanova University (Biology, 1996). He serves on several ethics committees and is currently working to develop the Center's High School Bioethics Project (PI- Prof. McGee) (see highschoolbioethics.org). Dominic is a co-editor of Health, Disease, and Illness: Concepts in Medicine (with Profs. Caplan & McCartney, Georgetown University Press, June 2004).
Welcome, Dom!

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Surprise: Consumers are Scared of Medical Errors & Increasingly Dissatisfied with U.S. Healthcare

More than half of the 2,000 adults surveyed "said they are dissatisfied with the quality of health care, up from 44% in 2000." Not dissatisfied enough to elect Kerry, though, apparently... The Kaiser poll did support one clear Bush mandate, namely a decreasing use of/emphasis on the courts and malpractice remedies for error:
Despite enormous frustration, few people indicated a desire to use the courts as recourse, calling into question policymakers' renewed interest in malpractice legislation, said Harvard pollster Robert Blendon.


"They do not view the malpractice system as the way to resolve these problems," Blendon said. "They would like the medical errors reported by a public agency, have the agency release it and then have it printed in some kind of Consumer Reports, and then they can go somewhere else" for care, he said.


About one-third of those surveyed said either they or a family member had experienced a medical error, but only 11 percent of them said they had sued for malpractice. By much larger margins, respondents favored remedies such as suspending the license of a doctor or nurse who makes medical errors.

Belmont Report Now Officially Too Old to Live With Mom

From PR Newswire: "HHS today marked the 25th anniversary of the Belmont Report that articulated the founding principles for federal human research subject protections, with the release of an oral-history video about the report and a ceremony to honor the report's authors. The ceremony honored the members of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, 1974-1979, which produced the Belmont Report and related seminal documents in bioethics and human subject protections." Among those honored for their role in the report were more than a dozen who literally helped organize the framework for research ethics in the United States.

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Medicinal Marijuana in Tennessee

The poll on the sidebar of this piece about legalization of marijuana for medicinal use in Tennessee suggests that Nashville's online readers are in favor of medicinal use of marijuana. The proposal is intriging, going both further than other states and using smart and novel criteria. But maybe it isn't the most practical proposal, since Tennessee - thoroughly red - is enjoying its first republican-led legislature in more than a century. ''The important ethical issue here is that it may be that our preconceptions are blinding us to the possible medical help the substance could provide,'' said [Stuart] Finder, director of Vanderbilt's Center for Clinical and Research Ethics. ''There are some indications it could be helpful, but the only way to find out is to study it. Do we risk giving up our preconceptions to look at it?" Marijuana of regulated quality, Vanderbilt, compassion and good folk music. Maybe we should move there?

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Sue Me? You'll Die Before You Win

Our friend Stephen Latham blogs:
Here’s a letter (CLICK FOR PDF)I got sent by a Kentucky reporter today. Outrageous.


The underlying suit alleges failure to read radiological and other images, or failure to read them properly, with resultant undetected illnesses, cancers, etc. The affected folks apparently live in rural areas and will have to do some serious driving to find alternative medical services.


One thing that strikes me is this: It’s one thing for a physician to say, “I really can’t treat you while you’re suing me.” It’s quite another for an entire health system to say, “None of our physicians can treat you while you’re suing any of us.”

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Dying to Live

Major new series on organ tranplant issues. Not to be missed. - Art Caplan

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Illinois is Coming for the Stem Cell Pot, Too

While the national press continues to speculate on what President Bush will do if anything with respect to modifying his 'ban' on Federal funds for embryonic stem cell research the reality is that the battle is for all intents and purposes over. The only issue remaining is which states will follow California and either permit or fund stem cell research. Illinois looks like it is very close to being the next state to work around the Federal ban. - Art Caplan

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Democrats Grow Spine From Stem Cell

Speaks for itself.

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Australia Protects Patient Privacy

or not.

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Next: The Philip Morris Center for Neuroethics

A Yale psychiatrist reports that nicotine receptors are also targets for anti-depressants, resulting in one study in faster action by antidepressants in people who also smoke.

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Shell Shock

Who needs cloned pets? turtle

Euthanasia = Kevorkian?

Wesley Smith thinks so.

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What's Up Roundup

Not enough organs in Scotland, and fewer are going to be available.

More about how the world will end, or at least it will feel like that in Wisconsin, if the state doesn't kick up its stem cell spending.

Wisconsin should be more worried about New Jersey, whose new acting governor is going to be asking voters to approve borrowing "hundreds of millions of dollars" to fund embryonic stem cell research.New Jersey's last governor, in early retirement, is being eulogized all over the place for his role in advancing stem cell research there.

A new novel from Jodi Picoult examines purposeful birth for organ donation and Courtney Devores likes it. AJOB will have a review; anybody want to do it?

Seattle PI discusses moral surprise in the election.

Go figure that fewer people want hormone replacement therapy after a study showed that they might harm women. Who would have guessed?

I love this piece in OregonLive about the Seventh-day Adventists' role in Operation Whitecoat, the long-running biologic research program between 1954 and 1973. The courage of these who were exposed to all sorts of horrific germs is interesting. Moreno is quoted.

I love university fluff about professorial accomplishments, because it means that the university recognizes that it actually has a faculty. Here's a nice piece about Bob Levine's appointment to the CDC vaccine task force.

Speaking of university press, this short one by a Princeton undergrad looks at Peter Singers' class' visit to a NICU. Singer visits a NICU. What does he say in his ethics consults??

Leave it to an evangelical to coin a new bioethics term: the bioethics porkfest.

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Canadian Research Ethics ...

It could not get much worse at the University of British Columbia, where ethics review of research experiments borders on non-existent and the internal oversight seems to have been utterly ignored. The only question is how widespread the research ethics problems are across Canada. The Scientist suggests that the problem is national.

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Female Foeticide: An Indian Response to the Sex Selection Debate

Not to rehash a point but this week's news around the entire globe has included one headline story after another out of the World Congress on Bioethics in Sydney, Australia. There have been seven major stories and five radio interviews since I first mentioned the new international visibility of these meetings. I'm betting that much of the debate among bioethics pros is going to move in the direction of IAB. Today's big story is the reaction in Calcutta to the repeated arguments by scholars from other countries that Indian sex selection must be disallowed.

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Papal Statement on Euthanasia

Pope John Paul spoke today of the evils of euthanasia, using interesting new language. He described what he termed as distortion of ethics, namely the conversion of compassion into a "suppression of human life" through the desire to support it. It is not clear to me what the Pope meant, but his words were provocative:
Euthanasia is among the dramas of an ethic that presumes to establish who can live and who must die
.

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What Happens When Your State Allocates $3 Billion for Stem Cell Research

Answer? Everyone wants to do stem cell research. Berkeley, though, is at a disadvantage, and it is interesting to watch as they deliberate about how to make up for the lack of a medical school.

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Austalian Cloning Restrictions

They are more restrictive than you think. Julian Savulescu on ABC.

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The Coldest War

Detroit Free Press reporter David Zeman discusses the matter of cold war testing on soldiers, and the more expansive tests on others, with Moreno and Rothman.

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The New Moral Majority (UPDATED)

This frightening piece on the plans of conservative protestants to "prepare demands for the White House is grounded in interviews with figures including Richard Land. Note the part about changing the rules governing filibuster so that anti-abortion judges will be certain to get confirmed. From the Orlando Sentinal UPDATE: Wall Street Journal piece on evangelists' thought-out agenda.

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Merck and Ethics

Raymond Gilmartin, CEO of Merck, spoke at Michigan. Gilmartin took the occasion to defend the timing of his company's decisions about Vioxx.
He said that although some Merck insiders urged him to inform the FDA of the findings and keep Vioxx on the market, he acted decisively, withdrawing the drug within a week.
The Merck CEO reserved his most enthusiastic comments for his corporate bioethics efforts:
After taking the reins in 1994, Gilmartin said within a year he had established the company’s first ethics office. He said Merck had established numerous ethics systems during his tenure — including a confidential phone number employees can call for advice concerning their ethical dilemmas.

Merck’s commitment to ethical behavior goes beyond complying with U.S. and international laws, he said. “As Plato put it, good people do not need laws to tell them how to behave responsibly; bad people always find a way around the laws.”

Gilmartin said Merck’s code of ethics is displayed in 25 different languages at company headquarters in Trenton, New Jersey. “Over time, ethical behavior turns into a competitive advantage,” he said.

Merck's CEO did well by Michigan business students: "The capacity audience, mostly Business School students, treated Gilmartin to a loud and spirited ovation after he concluded remarks."

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Pigs Need Never Die Again

Hopkins reported Tuesday that its cardiology department and stem cell group successfully achieved full or near full recovery in pigs who had had heart attacks, using transplants of stem cells from the bone marrow. Cells had not been redifferentiated to colonies of heart muscle cells, but rather differentiated themselves in the pig heart. No word on how they recruited pigs with heart problems to the study.

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Would You Like a Camcorder with that Pesticide, Son?

The EPA is conducting experiments using pesticide that have raised great concern.
In exchange for participating for two years in the Children's Environmental Exposure Research Study, which involves infants and children up to age 3, the EPA will give each family using pesticides in their home $970, some children's clothing and a camcorder that parents can keep.
UPDATE: The Washington Post reports that the study has been suspended.

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Now Come the Days of the Evil Clones of Death (UPDATED)

Cardinal Ratzinger, prefect of the Vatican Congregation for the Doctrine of the Faith, revealed from Rome today that human cloning is "more dangerous than weapons of mass destruction." UPDATED: the Cardinal might soon become pope.

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