December 2004
Newsday: Pregnancy as we Age
Smart, thoughtful bioethics scholar Susan Wolf contributes her own personal bit to this quick Newsday review of the year's stories about those women who are choosing to have children very late in life, and what their experience means for others:"For a woman in her 50s or older, 'It can be hard to get down and up off the floor a million times a day or be sleep-deprived,' said Wolf, who became a first-time mother five years ago at age 45.With the number of older mothers growing, the American Society for Reproductive Medicine recently began a campaign to make women more aware of the health and social consequences of delaying motherhood."
Labels: delaying motherhood, pregnancy, Susan Wolf
A Sleepy Look to 2005
Religion & Ethics NewsWeekly isn't one of my favorite PBS efforts; all too often PBS eschews new bioethics programming because it is "covered already" by this budget discussion and debate program. R&E often has skimpier ethics reports than the major news networks, and that is truly saying something; its approach to bioethics has the feel of a star-struck church member. The program takes this look to what will happen in 2005 with an eye toward religion.Labels: media and bioethics, PBS, religion, Religion and Ethics
Asia Is Stem Cell Central
This piece elaborates on the role of some major Asian cities and nations in effectively beginning a drive to dominate stem cell research. Not much new here but it is comprehensive and there are some interesting examples of scientists who went east for the gold instead of west for the rush. [From Business Week]Labels: Asia, stem cell research
Preservation in a Tsunami
BBC reports that there have been no recorded animal deaths due to the Tsunami:Debbie Marter, who works on a wild tiger conservation programme on the Indonesian island of Sumatra, one of the worst-hit areas in Sunday's disaster, said she was not surprised to hear there were no dead animals.Wild animals in particular are extremely sensitive...They've got extremely good hearing and they will probably have heard this flood coming in the distance.
Debbie Marter
Conservationist
"Wild animals in particular are extremely sensitive," she said."They've got extremely good hearing and they will probably have heard this flood coming in the distance.
Labels: BBC, conservation, disaster, tsunami, wild animals
Gene Music
Nigel Helyer in Australia is making music out of DNA sequences, through a project "designed to establish a functional relationship between conventional Western musical scales and DNA sequences and produce a system for mixing and mutating musical form within a biological context." It's the method that is unique: "Rather than taking given DNA structures and rendering them as musical code, GeneMusik takes fragments of conventional Western melody and sequences them as DNA that is subsequently ‘bred’ and ‘mixed’ within bacterial cultures."The Year in Review
At the suggestion of Mark Kuczewski, who comes up with lots of the most interesting "what we can do better" ideas in bioethics, we're thinking seriously about a "what happened in bioethics" review for the year. But what should we include? We would like very much to hear from you. The "what happened this year" newspaper pieces out so far are, well, unhelpful. Perhaps you can suggest reviews you would like us to attend to. Or better, tell us what you think about how we should format and publish it. We could run it in the Journal, or run it in InFocus on bioethics.net, where many more people would read it, or blog it one item at a time. We could blast it with the news update email, which has something like 80,000 readers. Or we could just not do it. But a lot happened this year, so much in fact that I can't think of a comparable year. You can leave your suggestions here as comments. Hurry up, ok?Labels: ideas in bioethics, Mark Kuczewski, what can we do better
Rapid Brain Expansion Propelled Human Intelligence
Chicago Trib reports on a Chicago study on human brain expansion and intelligence:The first study of genes that build and operate the brain shows that humans underwent a unique period of rapi brain expansion that endowed them with a special form of intelligence not shared by any other animal, according to University of Chicago researchers.The colossal leap forward grew the human brain to three or four times the size of that of a chimpanzee -- man's closest genetic relative -- when body sizes are equalized. That vast computing power pushed human intelligence over the threshold of basic instincts and into an unparalleled realm of cognition, self-awareness and consciousness.
Labels: Chicago Tribune, human development, human intelligence, why we're not chimpanzees
Pharma Discusses How to be Ethical
Pharmaceutical Executive prints a transcript of the proceedings of a high-power discussion of how to be ethical in the pharmaceutical business. "The conversation was moderated by Joseph Cohen, a partner at the law firm. The participants were Raul Perea-Henze, MD, senior director/team leader, science and medical advocacy, for Pfizer; Roger Louis, chief compliance officer for Genzyme; Nicholas Capaldi, PhD, Legendre-Soule chair in business ethics at Loyola University New Orleans; Kevin Soden, MD, worldwide medical director for Texas Instruments and Celanese, and medical reporter for NBC and MSNBC; and Patrick Clinton, editor-in-chief of Pharm Exec." Trust me, you want to read this. But go get a good strong drink first, then re-open your laptop.Labels: being ethical, Celanese, Genzyme, Pfizer, Pharm Exec, pharmaceutical industry, stiff drinks, Texas Instruments
AIDS Fatigue: Celia Farber on "the AIDS Spin Machine"
From New York Press, a lengthy and thorough argument, right or wrong, from Celia Farber, with particular attention to Uganda and to Jonathan Fishbein:After 20 years of hysteria, alarmism, misplaced recrimination and guilt, AIDS fatigue has beaten the newspaper-reading mind into a kind of blank. Citizens can't be faulted for not knowing how exactly to respond to last week's eruption of scandal from an NIH whistle-blower named Jonathan Fishbein, an AIDS researcher charged with overseeing clinical trials here and abroad. A reverberating language of bureaucracy and euphemism surrounds AIDS stories, making it impossible to know what has actually transpired. When people die from AIDS drugs, for instance, the word "death" is studiously avoided. I have seen medical articles documenting the fact that more people now die of toxicities from AIDS drugs than from the vanishingly opaque syndrome we once called AIDS. Death was referred to as a "grade four event," thus placing it eerily within the acceptable parameters of predictable phenomena in AIDS research—not as a failure, a crisis or even something to lament.
Labels: AIDS, AIDS fatigue, AIDS research, clinical trials, death, NIH, whistle-blower
Indigenous Tribes at Risk of Extinction After Tsunami
The remote cluster of more than 550 islands, of which only about three dozen are inhabited, is home to six tribes of Mongoloid and African origin who have lived there for thousands of years. Many of these tribal people are semi-nomadic and subsist on hunting with spears, bows and arrows, and by fishing and gathering fruit and roots. They still cover themselves with tree bark or leaves.
"They are a vital link to our prehistoric past. If they are lost, India and the world lose a bit of their glorious heterogeneity," said Ajoy Bagchi, executive director of the People's Commission on Environment and Development, India, which has worked with tribal groups in the region for years.
"Even a small loss in any of these groups, barring the more numerous Nicobarese, could seriously endanger their survival. We need to immediately do a count on how many of them are alive."
[link; from BoingBoing]
Labels: disaster ethics, extinction, tsunami
All In The Family
A 55 year old woman gave birth to her three grandchildren, the Washington Post reports today. The woman had offered to be a surrogate for her grandchildren when her own daughter had tried unsuccessfully for several years to become pregnant through in vitro fertilization. Ethicists' opinions on the surrogacy arrangement were varied. For more info, read on: [link] -- Linda GlennLabels: IVF, Linda MacDonald Glenn, pregnancy, surrogate, unconventional families
Wesley Smith has Lots of Nerve
Wesley Smith has made a serious bid for the 2004 chutzpah award. in a new column he complains that proponents of embryonic stem cell research using cloned embryos are playing word games in how they describe cloned embryos. This coming in the context of a year's worth of conniving on the part of proponents of a ban on cloning for research to say they are not opposed to 'stem' cell research when what they mean is adult stem cell research and intentionally confusing reproductive cloning with cloning for research. Wesley--stones, glass houses, c'mon now! - Art CaplanLabels: Art Caplan, hESC, intentional obfuscation, neocon bioethics, stem cell research, stiff drinks, Wesley Smith
The Transplant Idea that Will not Die
Are pigs the future of transplants? Byron Spice of Pittsburgh Post-Gazette is impressed. - Art CaplanLabels: Art Caplan, pigs, transplants, xenotransplantation
Perfect People: the Grudge Match
Perfect people: is it a good aim? Art Caplan and Carl Elliott debate in Public Library of Science. It is fun to read but the argument is pretty much what you expect. Caplan discharges the debate as somewhat silly:Beating up on the pursuit of perfection is silly. As Salvadore Dali famously pointed out, “Have no fear of perfection—you'll never reach it.” Critics of those who allegedly seek to perfect human beings know this. While often couching their critiques in language that assails the pursuit of perfection, what they really are attacking is the far more oft-expressed—albeit far less lofty—desire to improve or enhance a particular behavior or trait by the application of emerging biomedical knowledge in genetics, neuroscience, pharmacology, and physiology.And Elliott responds that it isn't a conservative defense of human nature that motivates him, rather he is concerned about misplaced energies devoted to enhancement instead of more important aims; in particular Elliott is as always primarily fighting against big pharma's promotion of enhancement:
Caplan does not defend medical enhancement so much as attack its critics. Or rather, he attacks a small group of conservative critics who want to preserve “human nature.” He dispatches those critics with admirable precision, but I am not sure why he believes that group of critics includes me. My worry about enhancement technologies has little to do with human nature. My worry is that we will ignore important human needs at the expense of frivolous human desires; that dominant social norms will crowd out those of the minority; that the self-improvement agenda will be set not by individuals, but by powerful corporate interests; and that in the pursuit of betterment, we will actually make ourselves worse off.Still, it is a fun read. And maybe it will get a few more copies of Better than Well and The Perfect Baby into circulation. Come to think of it, maybe we could stage a series of these wrestling matches ... yeah ... that's the ticket ...
Labels: Art Caplan, big pharma, Carl Elliot, enhancement, GATTACA, genomics, human nature, novel funding methods, pharmaceutical industry, public intellectuals
Patenting Genes and Stem Cells
Danish Council of Ethics released this report on patenting of genes from humans and of hES cells.All Sorts of NY Times Stuff: Autism, Clinical Trials, Tsunami
The NY Times reported this week that many with autism have essentially adopted the argument of those with Downs who make the claim that theirs is a different form of human life and experience, rather than a disability, syndrome or disease. Now they cover the absence of real evidence on what cures autism, if anything, and the meaning of that absence for patients and the health professions. Getting treatment for autism is increasingly difficult, because insurers do not want to pay, and the burden on siblings is more profound that has been realized. Each of these articles will be helpful for anyone dealing either with autism or with the more general issues in the ethics of just distribution of health care.One piece on the Celebrex, Vioxx, Aleve problems and their implications for public perception of the FDA.
Are physicians boring? Like this needed an article.
NY Times covers medical relief efforts in the aftermath of the incredible tsunami devastation. This piece itemizes the hurdles that physicians and other health relief forces will face. Among the most significant distribution issues is one that involves the general inability of international and national groups in healthcare to work together or to do their own logistics:
The aim is to avoid much of the competition and lack of coordination that have hampered the response of governments and private organizations to earlier catastrophes, Robert Holden, a member of the command center team, said in a telephone interview.In responding to the tsunami in South and Southeast Asia, he said: "The biggest problem is ensuring that those who survived continue to survive and provide the materials they need. We must avoid creating a secondary disaster because we can't get the necessary materials through."
Denise Grady writes about the lives of five people enrolled in different clinical trials. This piece should be used by anyone teaching research ethics to clinicians.
Labels: autism, clinical trials, hodge-podge, medical relief efforts, miscellany, New York Times, round-up, tsunami
Major Islamic Bioethics Program
UVA has trained Dr. Farhat Moazam, a pediatric surgeon, has completed training at University of Virginia in bioethics through UVA's incredibly influential religious studies-based doctoral program. Farhat returns to Pakistan to direct the Centre of Biomedical Ethics and Culture at the Sindh Institute of Urology and Transplantation in Karachi. The Center will be creating a new Masters program and will continue to work with faculty at UVA including Paul Lombardo and Jonathan Moreno, and will be sponsoring a major week-long Islamic Bioethics meeting in April. [thanks Jon Moreno]Labels: Centre of Biomedical Ethics and Culture, Islamic Bioethics, Jonathan Moreno, Pakistan, Paul Lombardo, UVA
Bread and Circuses
Physicians like to sleep in scientific meetings, but when and why? Kenneth Rockwood, David B. Hogan and Christopher J. Patterson for The Nodding at Presentations (NAP) Investigators publish a crucial piece in the online Canadian Medical Association Journal, entitled "Incidence of and risk factors for nodding off at scientific sessions," in which they:conducted a surreptitious, prospective, cohort study to explore how often physicians nod off during scientific meetings and to examine risk factors for nodding off. After counting the number of heads falling forward during 2 days of lectures, we calculated the incidence density curves for nodding-off episodes per lecture (NOELs) and assessed risk factors using logistic regression analysis. In this article we report our eye-opening results and suggest ways speakers can try to avoid losing their audience.[thanks Paul Wolpe]
Despite their known inefficiency, lectures ("a means of transferring notes from the pages of the speaker to the pages of the audience, without going through the mind of either") continue to predominate as a means of helping physicians learn their trade. At a recent 2-day lecture series, we noticed that many of the attendees around us were nodding off, including one of our coauthors (C.J.P.). After awakening him, we decided to study the boredom itself by measuring how often physicians nodded off during the lectures and assessing risk factors for this behaviour.
Labels: boredom, Canadian Medical Association Journal, medical oddities, the noble pursuit of fun
Transhumanism: Has Fukuyama Made it a Bad Word?
Bio•IT World describes the role of Presidential Bioethics Commission member and recent adventurer in bioethics Francis Fukuyama's pronouncement that human enhancement - in its aggregate, transhumanism - is awful, evil stuff. It has become clear that Fukuyama has done more to bring transhumanism into the public debate than any of its proponents, giving lots of space for public discussion of the ways in which human enhancement might make sense, and of ways in which that process can be understood and managed. No doubt this was not Fukuyama's plan, but the result has been great articles like this one, "More than Human."Labels: human enhancement, media and bioethics, President's Council on Bioethics, transhumanism
Pfizer and Merck: Different Strokes
Business Week discusses the difference between the two drugmakers reactions to safety issues surrounding Celebrex and Vioxx.The Enemy of My Enemy is ... My Enemy
Panos Zavos is on everyone's list of the top five, um, eccentrics in the human cloning race. He's fooled millions - twice - with promises that the first human clone's birth is imminent, and with preposterous claims about his own skills at cloning. He would be funny, if he weren't so dangerous. The emergence of Zavos has done more than anyone to convince the world that scientists who work with nuclear transfer are crazy. For example, today's British papers are all reporting that "cloning pioneer" Zavos is accusing Britain of "promoting infanticide." You'll love this:[Zavos] branded UK rules governing reproduction as “super-conservative” and warned they were forcing many adults into having multiple abortions because it was illegal for them to choose the sex of their baby.You just know sex selection advocates want to stuff this guy into a small, dark closet ...He said British couples were visiting his clinic for “family balancing” treatments, having terminated a number of pregnancies because the gender of their unborn baby was not what they wanted.
At the Kentucky Centre for Reproductive Medicine and IVF, where Zavos is associate director, treatments offered include pre-implantation genetic diagnosis, where the sex of embryos can be screened to ensure couples have a child of the desired sex.
Labels: crazy scientists, human cloning, IVF, Panos Zavos, pre-implantation genetic diagnosis, sex selection
Neuroethics Profile
Martha Farah of Penn is profiled in Science Daily.Labels: biography, Martha Farah, Penn, public intellectuals
The Agony and the Ecstasy
Rick Weiss of the Washington Post reports today that the FDA has approved a proposal to test the illegal street drug "Ecstasy" for treatment of severe anxiety in terminally ill patients. Ecstasy, also known as MDMA or 3,4-methylenedioxymethamphetamine, is currently being tested for its ability to reduce symptoms of post-traumatic stress disorder. Psychiatrists refer to the drug as an "empathogen" helping to put people in touch with their emotions. Researchers at Harvard, who obtained permission from ethics review boards at Harvard and Lahey Clinic, to submit this proposal, believe that this drug could contribute significantly to the range of palliative care strategies available to patients who must face the emotional challenge of the end of their lives.[Link] - Linda Glenn.Labels: ecstacy, empathogen, FDA, Linda MacDonald Glenn, MDMA, Rick Weiss, Washington Post
Well, NIH Doesn't Pay a Lot
So P. Trey Sunderland III, leading NIH psychiatric researcher, earned $508,050 from Pfizer while working for NIH.Labels: Conflict of Interest, NIH, Pfizer
NIH Department of Transfusion Medicine Director Harvey G. Klein
This is the LA Times major story about what, if it is true, constitutes a significant conflict of interest for an NIH administrator, namely Harvey Klein:Confidential income disclosure documents that the NIH recently surrendered to the House Energy and Commerce Committee and other records examined by the Los Angeles Times show that from 1999 to this year Klein received $240,200 in consulting fees and 76,000 stock options from five blood products companies. Klein acknowledged in written responses for this article that several other firms also had paid him fees; he said that he properly reported the compensation to the NIH.Editorial ethics groups including the Council of Science Editors' and the World Association of Medical Editors (on both of which I serve) have just ramped up deliberations on this sort of conflicts of interest, but never did any of us imagine that the disclosure of information regarding conflict of interest within the NIH would reach this far or go this high. It seems likely an audit of publications by NIH scientists will be forthcoming. - GMWhile taking industry's money and also working for the government, Klein helped shape policies and practices that directly affected his industry clients and patients. He participated as an expert at dozens of federal meetings that focused on uses of new blood- related products but did not publicly acknowledge his role as a paid consultant to any company, records show. Other experts did so voluntarily.
Klein also wrote an article for a major medical journal whose editors now say they would not have published if they had known about his company ties.
Labels: audit, blood products, Conflict of Interest, Council of Science Editors, NIH, World Association of Medical Editors
Living on, with Heartbreak
This is an incredibly touching part of a great series by the Baltimore Sun on the effect of the death of a child. The series is inspired by an Institute of Medicine report on the failure of the U.S. healthcare system to respond to issues in terminal illness and death of children more generally:Too many sick children endure aggressive procedures and treatments. Too many won't get the pain medicine they need. Many go months and years, cycling in and out of hospitals, without emotional and other support, concluded the Institute of Medicine in its report "When Children Die." In calling for more research and better training, the institute urged organized medicine and others to look at what has been a hidden issue.
"It is a painful thing to sit and dwell upon, that there is undue suffering happening to and with our babies and children," said Lizabeth Sumner, a member of the IOM committee who pioneered hospice programs for children in San Diego. "There will always be kids who die of something. As a society, how are we going to choose to respond to that situation?"
Labels: aggressive treatment, death, healthcare costs, hospice, Institute of Medicine, quality of life, suffering, terminal illness, when children die
Bioethics' New Media: Online Streaming Video
Just in - a perfect little distraction for a bit of non-work-like-bioethics-surfing during the holiday break. It is called 'Yahoo! Video', and according to MIT's Daily Recycler, which tracks the most cited links among all three million english language blogs, it is literally everywhere. Why is it such a big deal? Because Yahoo! Video allows you to search from millions, yes MILLIONS, of video clips all over the internet in order to turn up clips in your area of interest. Beyond "ego searching" for clips in which you appear, the teaching and research uses for Yahoo! Video - and those engines that follow it - are expansive and interesting. Just think about all of the ways in which you might use a tool like this and you'll begin to see why, like Google Scholar, which in my opinion will revolutionize scholarly information, this is a major technological breakthrough for our field. For example, here is a search for video with stem cells in it. - GM
Labels: ahead of the curve, media and bioethics, technology, video
Wired News: Stem-Cell Method May Cheat Death
"Stem-Cell Method May Cheat Death" reports on the potential derivation of stem cells from a single cell removed from a morula, which we mentioned a week or two ago on this list. Note, though, that they think it will solve the problem of killing embryos, because the embryo it was removed from would persist.The philosophical conundrum is that, if you believe any totipotent
cell is human life, when you remove that blastomere from the morula
all you have really done is twinned the morula. To someone believing
in the sanctity of embryonic life, it might not be enough that the
parent morula is not destroyed. The blastomere itself can be
considered life worthy of protection.
There is a point at which the cells cease to be totipotent as the
morula transforms into a blastocyst. If someone could culture stem
cells from a blastomere taken from a morula/blastocyst that has
ceased to be totipotent -- then we will have really solved the stem
cell problem to everyone's satisfaction, I believe.
I think the ultimate point is that the stem cell problem may go away
soon, leaving us only with enhancement, abortion, and PVS to distract
us from health care reform.
Labels: embryos, hESC, logical conundrum, sanctity of life, stem cell research, twinning
Think You Could Postpone Death to See a Relative? Think Again
From a JAMA embargo release:Many of us think that the terminally ill can postpone their deaths so that they can see a relative, experience their last birthday or enjoy a special holiday - sadly, this is a myth, according to a new study.The study looked at the records of 300,000 cancer patients who died in
Ohio, USA, between 1989-2000. The study found that they did not have the
ability, or the desire, to wait till after Christmas, their birthdays or
Thanksgiving before they died."For Christmas, Thanksgiving, or the individual's birthday, during the
12-year period there was no significant difference in the proportion of
patients dying in the week after the event compared with the proportion
dying in the week before the event," the researchers write. "Although
overall birthday data showed no effect, women dying of cancer were more
likely to die during the week before their birthday compared with the
following week. Men showed no significant differences. In no subgroup was a
statistically significant decrease of deaths observed in the week before the
event.""Although we cannot eliminate the possibility that a small number of dying
cancer patients have the ability to control the timing of their death, the
proportion would have to be much smaller than that previously reported," the
authors write. " Š analysis of thousands of cancer deaths shows no pattern
to support the concept that 'death takes a holiday.'"
-Dominic Sisti [from MCW]
Labels: death, JAMA, myths, terminal illness
Magnus Takes on Kitty Cloning
The Detroit Free Press reported that the first cloned-to-order pet, a kitten named Little Nicky, was delivered to a Texas woman about 2 weeks ago. The kitten, was cloned by a Sausolito company called Genetic Savings and Clone, for a mere $50,000. Little Nicky's owner had banked her deceased 17-year-old cat's DNA, which was used to create the clone. David Magnus was quoted: "It's morally problematic and a little reprehensible...For $50,000, she could have provided homes for a lot of strays." - Linda GlennLabels: clone-to-order, cloning, David Magnus, Genetic Savings and Clone, Linda MacDonald Glenn, Little Nicky
But did the Celebrex Guys Train There?
The Yale Herald reports on the completion of the Pfizer building in New Haven, where it is setting up shop to do an incredible amount of clinical research. Bob Levine and Samuel Gorovitz are quoted.
The relationship with Yale promises to be, um, interesting:THE CONSTRUCTION SITE OVERLOOKS the Yale Medical School, a neighbor which Pfizer is glad to have. In fact, the Medical School proved a tipping point in Pfizer's decision to build its new unit in New Haven.And also, well, there are lots of really poor people in New Haven with not much to do, which prompts all sorts of interesting criticism
Dr. Robert Alpern, Dean of the Medical School, expressed enthusiasm over collaborations between the institutions. "We're extremely excited about the opening of the unit in New Haven," he said. "Pfizer has a lot of talent, skills, and resources that Yale doesn't have, and vice versa, so we think we're actually in a position to help each other a lot" ...
When Pfizer announced its plans in 2003, the initial reaction from the people of New Haven was mixed. The New Haven Advocate featured an article on its front cover, headlined, "Guinea Pig City." Written by Paul Bass, the article accused Pfizer of exploiting the inner city population of New Haven by offering volunteers high prices to take experimental drugs. Bass proposes that Pfizer allow community input on its ethical review boards.Levine is point-blank about the risks of this cozy relationship: "'What if Pfizer says we want certain sorts of research done here? Are the review committees at Yale going to be intimidated? These people have already given us a $35 million building plus the funding, so we better do what they want,' said Levine. 'Even to a university with Yale's endowment, that's a pretty attractive thing.'"
Labels: clinical research, collaborations, deals with the devil, human guinea pigs, Pfizer, vulnerable subject populations, Yale
Dying to Get Rid of a Headache
In the latest spate of nonsteroidal anti-inflammatories linked to heart problems, the Washington Post reports that Aleve, which has been available over the counter for more than a decade, may increase people's risk of having a heart attack or stroke by as much as fifty percent. [link]Meanwhile, last week, various news organizations and the National Cancer Institute reported that Celebrex could help prevent and even fight breast cancer. But, in the last few days, Celebrex has been implicated in increasing heart disease risks.Read more here and here. Obviously, more research needs to be conducted to balance the possible benefits against the possible risks.
Labels: Aleve, Celebrex, heart disease, NCI, NSAID, Washington Post
Guest Blogger Linda Glenn
New to the bioethics.net blogosphere is Linda MacDonald Glenn. She's great and an old friend. Here's some info on her:LINDA MACDONALD GLENN, JD, LLM (Biomedical Ethics, McGill) is a bioethicist, attorney, educator and consultant. Formerly a fellow with the Institute of Ethics with the American Medical Association, her research encompasses the legal, ethical, and social impact of emerging technologies and evolving notions of personhood. Prior to returning to an academic setting, she consulted and practiced as a trial attorney with an emphasis in patient advocacy, bioethical and biotechnology issues, end of life decision-making, reproductive rights, genetics, parental/biological "nature vs. nurture", and animal rights issues; she was the lead attorney in several "cutting edge" bioethics legal cases. She has advised governmental leaders and agencies, and published numerous articles in professional journals. She has taught at the University Of Vermont School Of Nursing, the Medical College of Wisconsin, the University of Illinois at Chicago Medical School and the University of Health Sciences Antigua, and has addressed public and professional groups internationally. Her extensive experience and passion for the issues facing the legal, nursing, and healthcare professions make her a compelling and thought-provoking lecturer. More about her background can be seen here.
Labels: biography, blogging, Linda MacDonald Glenn
In Honor of the Holidays...
And utterly outside the domain of bioethics, a link to the Scared of Santa photo gallery, which gives vivid testimony of the vulnerable subjects exposed to greater than minimal risk during the last part of December.Labels: boredom, holidays, humor, scared of santa, the noble pursuit of fun, vulnerable subject populations
The Best Euthanasia Movie?
I vote for The Sea Inside, reviewed here by Time Magazine.Labels: euthanasia, media and bioethics, movies
Dear Geron. Please, Please Stay in Maryland. California is ... Well ... They Don't Have Annapolis!
The Herald-Mail ONLINE reports that Maryland is going to try to scrape together some money to compete with California. Will Geron move to California? You've got to wonder just how much more complicated state stem cell politics can get.Labels: California, Geron, Maryland, state stem cell politics
Geron: Behemoth of the Stem Cell Race
Sacremento Bee reports on the importance of Geron and its patents for the race to acquire and license stem cell research technologies. It is a field in which there is a great deal of patent protection, as I wrote in a survey of the existing patents for a book Magnus, Caplan and I co-edited: Who Owns Life?. And now there are three billion dollars available for research that will in many cases produce licensing arrangements that filter automatically through Geron. This will be an interesting time for those who invest in biotechnology, but more interesting still for those who follow patent law in the life sciences, where the patent and trade offices in the US and European Union seem to have lost their minds. GMLabels: biotechnology, books, Geron, patents, stem cell research
Organ Transplants - a 50 Year Look Back
From the New York Times.Labels: New York Times, organ transplants
Bioethics in Japan: a History
The Center for Global Partnership of the Japan Foundation publishes Dr. Yoshio Nukaga's account of the history of bioethics in Japan.The Plan is Much too Complicated for Lobstermen
The Commonwealth Fund reports on the new health system proposal in Maine:In June 2003, Maine Governor John Baldacci signed into law the Dirigo Health Reform Act to create a sustainable health care system for the state. Maine is seeking to contain costs and ensure health care access for all its residents, while improving quality at the same time.[thanks Art Caplan]
Labels: healthcare costs, Maine, sustainable state health care
Sankar and Cho on Race and Genes
"Too often, the mere availability of data and technology, rather than ethical considerations of social needs, drives its use in unintended ways," says Mildred K. Cho of the Stanford Center for Biomedical Ethics, writing in a special issue of the journal Nature Genetics with Pamela Sankar of the University of Pennsylvania Center for Bioethics.[link]
Labels: Center for Bioethics, genes, Stanford Center for Biomedical Ethics
NPR Story on matchingdonors.com
Mark Fox, chair of UNOS' ethics committee, is featured in this excellent All Things Considered piece.Labels: NPR, organ transplants, UNOS
OK, What Do I Have to Do Wrong to End Up in Fiji?
Many, many researchers and physicians these days are finding that their bad behavior results in a particularly awful sentence: ethics training. Boy, you know that is going to solve the problem. It sounds like one of those B-movies about teaching in a high school in gang-ridden east LA: nasty physician glares at tweed-clad ethicist and thinks about how unfair it is that he should have to sit in an ethics class. All he did was disclose somebody's HIV status to everyone. I mean, who cares, right? There is a way to make being sentenced to ethics more tolerable. Get your boss to let you pick the school. Think Fiji. It looks like their Ministry of Health has it all set so that refresher courses on medical ethics - arranged to punish someone named Waqatakirewa - will be readily available. Wait - can I teach those?Labels: are there mermaids in fiji?, ethics as punishment, ethics training, rewarding bad behavior
"A Number" - A Preview
We blogged the NY premier of this great new play about cloning. Now Religion and News Weekly reports on it, including an interview with Caplan and others who had a chance to see the press-night preview. [Link]Labels: Art Caplan, bioethics on broadway, cloning, theater
Broken Health Care System --> Charity Care Mess
In an incredibly biased piece, Jonathan Cohn writes about the problems some non-profit hospitals have in fulfilling their charity care obligations. He cites one case in particular and highlights that there are sometimes insurmountable obstacles for patients accessing charity care funds. Yes, it looks pretty bad when a hospital sues a grieving widow for an enormous amount of cash.
But Cohn's account is more cynical than accurate. For every case like the
example he describes, there are thousands others that get done right. (Go
check out the IRS's database of Form 990.) Non profit hospitals eat
millions and millions of dollars of medical bills every year. In combination
with shortfalls in reimbursements from medical assistance (Medicaid
programs), and astronomical liability insurance premiums, charity care costs
are often far more than the tax break non profits enjoy.
There is a distinction between indigent care- services provided to those who
don't pay- and charity care- services provided to those who can't pay.
Often the two groups are the same, but it takes some finesse in figuring out
who's who at patient intake- a process riddled with problems indeed. Sick
patients or their families don't want to fill out a stack of forms and
disclose they are broke because they fear they will be denied care. No fault
of their own, these folks often don't realize providing accurate financial
information will make them eligible for charity care.
Really, the lesson here is our health system is broken. Providing medical
care for the uninsured or underinsured should not fall to nonprofits only.
A basic, universal and just health care system is the only way to fix this
mess. - Dominic Sisti
Labels: charity care, Dominic Sisti, fine distinctions, non-profit, universal health care, wearing your bias on your sleeve
What's Up Roundup
Ten myths about assisted suicide from Spiked Liberties.Ethics of compulsory drug screening.
Amusing "please call our expert" release on Pfizer Celebrex heart risks, from Saint Louis University
Knight Ridder piece by April Lynch on hiding genetic testing results from insurance companies
Another PR piece fed to the media on an ethicist, this time Penn's Martha Farah and neuroethics.
Labels: assisted suicide, Celebrex, hodge-podge, Martha Farah, miscellany, myths, Penn, Pfizer, round-up
Professor Hurlbut, Your 15 Minutes are Up
LifeSite is a sort of barometer for the day to day pulse of the anti-abortion community, and from the very moment that William Hurlbut floated his dramatic new plan to save us all from the terror of destroying frozen embryos it was clear that, as we foretold, the clock had started on his poorly thought-out "work-around" for stem cells: intentionally producing disabled embryos. True, for a bit it looked like Leon Kass would push Hurlbut's idea into the fore, with his announcement that the President's bioethics commission would be discussing it (and other ideas), and with his subsequent claim that Hurlbut's idea could save us all from having to debate stem cell ethics any longer. Catholic and protestant fundamentalist leaders jumped for joy. But it was only a matter of time before even the 'pro-life' community would wake up to realize that embracing Hurlbut's half-baked neoscientific plan meant doing all sorts of things that amount to what they typically term "playing God."And so, exactly eight days after it showered Hurlbut with adoration for saving the tiny people, the pro-life lobby has officially turned on Professor Hurlbut for crimes against the little embryos. One biologist interviewed for the "hang hurlbut" piece in LifeSite today puts their indictment of him squarely: "...the process would not create an unknown 'new entity,' but a severely disabled, cloned human being." The anti-abortion people even have an excuse for embracing Hurlbut: they were too dizzied by all that complicated science stuff: "Possibly due to the extremely rarified nature of the technical language, few reservations were raised at the meeting, even by the pro-life Catholics present."
Labels: anti-abortion, crazy scientists, Hurlbut, Leon Kass, LifeSite, running clocks
What Do Ethicists Say, Dude?
California newspapers haven't usually quoted California ethicists, and their understanding of bioethics is somewhat hampered by the fact that there aren't so many bioethics programs in California that there is a big impact on policy. Until now. UCSD's research ethics program director Michael Kalichman is profiled as part of this big piece on "what an ethicist is."Labels: California, policy, research ethics, UCSD
When You Don't Really Need an Ethicist: Doctor Tries to Set Patients on Fire
Washington Times quotes George Annas and Bob Veatch on this lovely phenomenon:"I still can't imagine how someone could justify intentionally trying to set patients on fire," said Robert M. Veatch, professor of medical ethics at Georgetown University and former director of the Kennedy Institute of Ethics at Georgetown. "I can't imagine any possible defense. I suppose he could claim he had reason to believe that he couldn't hurt people by trying this and was trying to prove his point," Mr. Veatch said. "I saw nothing in the transcript of the deposition that could justify attempts to intentionally cause a fire," he said.They struggled really hard to analyze this one.George Annas, a medical ethicist and chairman of the Department of Health Law, Bioethics and Human Rights at Boston University, said no patients would agree to participate in such an experiment. "I don't know what was on this guy's mind," Mr. Annas said. "There is no patient who would say, 'Sure, you can light me on fire.' "
Labels: common sense, dangers of colloquialisms, expert witness, light my fire
First Islamic Code for Medical Ethics Gets WHO Backing
Story here. There is not much information there about the code itself, but this paper by Hossam Arafa, and this one by Ahmed Dirie are recommended by IslamOnline as resources to describe the code's origins.Labels: code of medical ethics, Islam, WHO
Enhancement Comes from Insecurity
University of Minnesota's Carl Elliott wins the "best title" award hands down for "This is Your Country on Drugs" in Yesterday's New York Times. The platform is steroids, but his article is about the evils of enhancement technology more generally. He writes:Jacques Barzun famously said that to understand America, one must first understand baseball. Never has his remark been more accurate. Professional baseball players may be the most vilified Americans using performance-enhancing drugs, but they are by no means alone. Performance-enhancing drugs have become a part of ordinary American life.Sounds interesting, right? But this prominent op-ed about the dangers of enhancement is full of fear and trembling, in the key of 'repugnance', toting the line that enhancement is self-denial. Elliott uses the clever anti-enhancement language he has popularized, and that is now trumpeted by Leon Kass (e.g., to attempt to deal with a faltering memory is to try to be "better than well"), and commits all Kass' fallacies, most importantly failing to define what "well" means.
The upshot of Elliott's argument is thus pretty puritanical, substituting luddite condemnation of an enhancement 'industry' for an appraisal of changing ideas about the meaning of disease. It is easy to describe steroid use by baseball players as non-medical, and clearly the physicians who prescribe those medications using libido as a diagnosis are not acting responsibly. But steroids for baseball players are a far cry from Viagra for help with sex. Elliott does not bother to argue for the incredibly implausible link he draws from such behavior to performance enhancements that more properly fit within a medical sphere. So it is no surprise that he is able to conclude that enhancement is a pitiful band aid for the soul: "America's appetite for stimulants, antidepressants and Botox injections looks less like enthusiasm and more like fear." But the connection between baseball and make up doesn't really lead where Carl thinks it does.
People improve themselves all the time, and there is no more human struggle than that to improve one's own, and others', quality of life. That struggle defines much of parenthood, for example, as I argued in a book called The Perfect Baby.
You have to ignore a lot of human experience to demonize all enhancement technologies as a "desire to avoid shame and humiliation," rather than a desire to succeed. Exercise is based on a desire to succeed but a facelift is based on shame? Not always. Plenty of people exercise out of shame, to the point even that they reduce their lives to a thin gruel. Many people take showers, put on powder, and buy clothes because they want to look 'better', but not because they are ashamed and miserable and humiliated.
When you shake out Elliott's (and Kass') arguments about enhancement, they boil down to repugnance, not as much at technology as at habits that offend Kass' and Elliott's sensibilities. This will come as no surprise to those who have read Kass' incredibly conservative writing about food and sex. The danger is that this kind of argument will be viewed as nothing more than patronizing claptrap by most of those who want to use enhancement technology, and thus does nothing whatever to help institutions and individuals put enhancement in context. Abject loathing of any "weird new technologies" for the desire to improve ourselves actually hurts the effort to discern between enhancements that should be slowed, or banned, and those that make a lot of sense. - GM [link]. Updated 12/27.
Labels: books, Carl Elliot, defining disease, enhancement, fear and trembling in bioethics, great titles, steroids
Negative Results in Evidence Based Medicine: Huh?
Tim Christie writes in the Eugene Register-Guard that Evidence Based Medicine (EBM) has taken full root. Once personal experience, medical authority, or anecdotal evidence were the physicians' bases for a medical decision. With the latest data from randomized controled trials and meta-analyses streaming to their palm pilots, EBM is used by clinicians to make treatment decisions. EBM standards are also used by journals to pick publishable papers and by continuing education programs to teach docs.
And
lets not forget about a payers interest in paying for interventions
that
actually work. Really, isn't this just common sense? Dr. Norman Kahn,
of
the American Academy of Family Physicians: "Physicians yearn to
deliver what
works," "So when they learn there is evidence for this vs. no evidence
for
that, they are rapid adopters."
The missing piece in this account is that sometimes, as we've seen
lately,
"no evidence" really means "suppressed negative results." - Dominic Sisti
Labels: common sense, Dominic Sisti, evidence-based medicine, rapid adopters
Mel Gibson, Stem Cell Advocate
By popular demand - ten people have asked us for this link - here's the link to Mel Gibson the adult stem cell True Believer, in his Good Morning America appearance that drew so much attention before the election. [RealVideo]Labels: adult stem cell research, Mel Gibson, video
Erectile Dysfunction Broadens the Market Even More
Who's next in the Viagra marketing campaign? Kids? Maybe. The Viagra and Levitra ads are targeting mid-20s men. While there is much controversy about ads portraying 40 year-old men as devils to sell the notion that Viagra makes you, well, more aggressive, the big story (in Miami anyway) is the shift to this younger population. No doubt the same group of young men will want to have a three-day sex pass as well, so look for ads for Cialis soon! Ken Goodman is quoted.Labels: Cialis, erectile dysfunction, Levitra, marketing, recreational drug use, Viagra
Judy Illes Blows Lid on Inaccurate Marketing of "Body Scans"
Judy Illes of Stanford has authored a piece from an analysis of the content of company brochures selling body scans, sometimes called "full-body preventative scans" and conducted with CT or MRI. In their review they found that there were all sorts of horrific exaggerations and some awfully intense sales tactics. Illes and colleagues had argued in 2003 that there are insufficient standards and guidelines for scanning, and that the industry has grown very rapidly. The piece is in the 12/13 issue of Annals (thanks for the correction!).Labels: body scans, exaggerating claims, Judy Illes, marketing
Much Greater Scrutiny of Judicial Nominees' Ethics Positions
Pittsburgh Trib-Review writes that candidates in Pennsylvania in particular and in 38 other states to some degree there will be much greater scrutiny of the ethical positions that they hold, now that the Supreme Court has stricken a Minnesota rule that barred judicial candidates from expressing opinions on issues.Opines Duquesne law professor Joseph Sabino Mistick:
"It's a different ballgame now. You can no longer hide behind the ethical requirements that judges and judicial candidates not comment. Prior to this, voters were expected to base their decisions on a sense of a candidate's character," he said. "Now they are able to find out how the candidates actually stand, keeping in mind that once sworn in as a judge, it's still your duty to uphold the law as it exists."
Labels: judicial nominees, politics, scrutiny
Cognitive Liberty in the Age of Memory Management Drugs
Thanks Richard Glen Boire for the heads up on his new piece at Betterhumans, a site that is increasingly producing content of its own.Labels: Betterhumans, memory management, new blogs
Real Estate Investor to Run California Stem Cell Program
Just out from the official Governor's Office press release:Governor Arnold Schwarzenegger today announced his selections for leadership of the Independent Citizens Oversight Committee (ICOC) which oversees the California Institute for Regenerative Medicine created by the passage of Proposition 71. The proposition, supported by the Governor, was approved by voters in November and will fund stem cell research that may offer cures for ailments ranging from Alzheimer’s disease to diabetes and cancer.The Governor announced his nomination of Robert Klein for chairman and
Edward Penhoet for vice chairman of the ICOC.
Labels: California, funding, Independent Citizens Oversight Committee, Proposition 71, stem cell research
NIH's Jonathan Fishbein Takes Whistleblower Protection
MSNBC:Dr. Jonathan Fishbein, a 10-year expert on safe drug research practices in the private sector before joining NIH in summer 2003, has met with congressional investigators and provided extensive information about problems in NIH research.
NIH officials declined to discuss Fishbein, citing personnel privacy, except to say the move to fire him is based on his performance.
Fishbein, who is represented by the National Whistleblower Center, was told earlier this year he is being fired before he completes his two-year employment probation after a series of disputes with NIH managers over safety concerns in various AIDS research projects, according to his lawyer.
Labels: AIDS research, NIH, whistle-blower
German Biopatent Law Rejects the EU
Unlike their EU peers,Germany appears ready to reject broad patent protection for gene sequences.Joseph Straus, managing director of the Max Planck Institute for Intellectual Property, Competition, and Tax Law, told The Scientist that a biotechnology amendment approved last Friday (December 3) by Germany's Bundestag, or lower house of Parliament, would limit patent protection on human gene sequences to "disclosed functions" at the time of the patent application.
Labels: biopatents, EU, laws, Max Planck Institute, The Scientist
Will Neuroscience Destroy Our Conception of Free Will?
Wired magazine very briefly discusses the implications of recent advances in neuroscience for the issue of insanity pleas. Previous legal attempts to blame our genes for bad behavior have failed to persuade juries, but the new challenges from neuroscience may well succeed where those earlier attempts fell short. Will we see a role for philosophers as expert witnesses attempting to explain compatibilist approaches to free will?Labels: bad behavior, expert witness, free will, neuroscience, Wired
Extra Traits, No Charge
This article in the San Jose Mercury news reveals that a physician whose fertility clinic transfered the wrong embryos (leading to an unanticipated custody battle) and then lied to the patients involved continues to practice medicine and was even listed as a recommended provider by RESOLVE until the reporters contacted them asking for comment. Many of us have criticized the infertility industry for failure to self regulate in the face of insufficient oversight, but this story really brings it home. Several years after investigators concluded there was serious wrong doing and that the physician is a risk to public health, he continues to offer his services.Labels: custody battle, failure to self-regulate, IVF, risk to public health, what does it take?, wrong embryos
The Stem Cell Debate is Dead
In this editorial in the San Jose Mercury News, David Magnus and Art Caplan argue that with the passing of California's prop. 71, it is long past time to stop worrying about the President's policies or the tired issue of whether ex vivo embryos are people. The new stem cell debate is going to be about when the science justifies moving to clinical trials, worries about the therapeutic misconception and conflicts of interest. I know I am not the only one who feels like i've gone back in time--substitute enthusiasm for stem cell research for gene therapy. We argue in this piece that we should learn some lessons from that experience.Labels: Art Caplan, California, David Magnus, Proposition 71, stem cell research, therapeutic misconceptions
In Brief
I'm at a grant meeting this week in New York so comments will be limited to news analysis this week.A few interesting things out today:
A followup inquiry in Britain on its military's tests on service members during the 20th century is revealing:
The hearing was told how at 10.17 a.m. on the morning of May 6, 1953, Porton Down scientists had applied the liquid nerve gas on to the arms of Maddison and five others in a sealed gas chamber. After 20 minutes, Maddison complained that he was feeling ill. Soon after he slumped over the table and was carried out of the chamber and taken to Porton’s hospital, where he died at 11.00 a.m.
The inquest examined what steps Porton took to ensure the safety of the human “guinea pigs”, but was supposed to take into account the differing “ethical climate” of the early 1950s and the “paranoid pressure” generated by the Cold War.
Another chronicle of Hurlbut's tempest in a teapot solution to stem cell ethics debates, this time from Religion News Service.
Baroness Warnock, described in Times online as Britain's leading medical ethics expert, spoke in defense of the proposed 'mental capacity bill', which would simplify euthanasia in Britain (or so many say). Warnock: "I don't see what is so horrible about the motive of not wanting to be an increasing nuisance." Needless to say, lots of people didn't like her comments.
Who will lead the California stem cell program? San Francisco Chronicle reports that it might be a real estate tycoon, Robert Kline. Also in the pool: Michael Friedman, CEO of City of Hope, and former UC president Richard Atkinson, a cognitive scientist. Weren't any actors available?
You knew that Ob-Gyns are sued quite frequently. But in Maryland, 70% have been sued at some point in their practice, bringing average insurance premiums to $150,000 per year. Maryland is typical for the U.S..
A profile of Vanderbilt's Pediatric Advanced Comfort Team is interesting. Mark Bliton of Vanderbilt is quoted.
Boston Globe does a great job on the sports steroids issue.
Labels: Britain, euthanasia, human subjects, Hurlbut, malpractice premiums, military tests, steroids
Cuba's Biotech Revolution
Cuba is broke. So it is investing in biotechnology, specifically in the development of a pharmaceutical industry in Cuba to make and sell generic versions of patented pharmaceuticals (and, naturally, they do not hold the patents). It is an interesting strategy:Faced with economic calamity, Castro did something remarkable: He poured hundreds of millions of dollars into pharmaceuticals. No one knows how - Cuba's economy, with its secrecy and centralized structure, defies market analysis. One beneficiary was Concepcion Campa Huergo, president and director general of the Finlay Institute, a vaccine lab in Havana. She developed the world's first meningitis B vaccine, testing it by injecting herself and her children before giving it to volunteers. "I remember one day telling Fidel that we needed a new ultracentrifuge, which costs about $70,000," Campa says. "After five minutes of listening he said, 'No. You'll need 10.'"...[Link] Cuba has long had discussions about bioethics with faculty teams led by Stuart Youngner of Case Western Reserve University. It will be interesting to hear how that group reacts to this development; they have done a great deal for bioethics in that small nation.
It's like Castro said: They don't really like patents. They like medicine. Cuba's drug pipeline is most interesting for what it lacks: grand-slam moneymakers, cures for baldness or impotence or wrinkles. It's all cancer therapies, AIDS medications, and vaccines against tropical diseases.
Labels: biotechnology, Case Western Reserve University, Cuba, Finlay Institute, patents, pharmaceutical industry, vaccines
Whoa Thar Little Stem Cells.
Stop Tryin' to Leave the Dang State!
Texas needs stem cell policy, and Sen. Kay Bailey Hutchison, likely candidate for governor of Texas, is pushing to save Texas from stem cell obscurity. It is difficult to imagine that the state - dominated by conservative protestants and Catholics - would ever embrace any serious stem cell research plan that includes embryonic cells. Hey ... they execute lots of disabled people in Texas. If that passes must with the Texas pro-life constituency, maybe they'll go for Hurlbut's "kill a disabled embryo" approach! Or maybe not, pardner. Not in Crawford. [thanks Arthur Caplan]Labels: brain drain, policy, stem cell research, Texas
WANTED: Czar for California Stem Cell Research Agency ... Must Be Rested & Ready to Be Most Powerful Person in Biotech
LA Times reports:With less than a week before the debut of California's new $3 billion stem cell institute, intense behind-the-scenes debate is growing over who should head the agency and whether a Friday deadline for filling the post will allow the best candidates to be considered. The debate is expected to crest Monday when Gov. Arnold Schwarzenegger and three other state elected officials must, under the tight deadlines set by the state's embryonic stem cell initiative, put forward their nominee to chair the new agency.Bernard Lo is quoted.The chairperson will immediately become among the most influential officials in the field of biological research, running much of the day-to-day operations of an institute that will dole out some $300 million a year in grants, more than 10 times what the federal government now spends yearly in the stem cell field.
Labels: California, Proposition 71, stem cell research
If You Want Tenure at Berkeley, Do Not Criticize Agribusiness
Berkeley Daily Planet reports on an incredible case of tenure denial, one that should be telling for any junior scholar in bioethics who is thinking about being really critical of corporations that work with his or her institution - but who still wants tenure.Labels: agribusiness, Berkeley, tenure
Close the Human Fertilisation and Embryo Authority?
Lord Robert Winston is arguably Britain's most distinguished and certainly most outspoken participant in the IVF debates. Today, he proposed something that will be seen as absolutely outrageous in the rest of the developed world, which admires Britain's HFEA. The HFEA is responsible for all sorts of regulations, research and policymaking in reproductive technology, ranging from the storage of embryos to the selection of sex to the cloning of embryos for stem cell research. Winston says shut them down.And he has recruited some unlikely allies. The big problem in the critics' eyes is that HFEA believes its own publicity, thinking it cannot really improve much. Because of this, say Winston and others (including Josephine Quintavalle, spokesperson for Comment on Reproductive Ethics), they miss the need for big reforms. What's needed? A great big bioethics committee for HFEA. Hard to see why the HFEA would benefit from that, given that ethics committees of that sort very, very rarely work as intended. But perhaps the British critics of HFEA are as sharp as those who brought that 'brilliant' institution to life.
Labels: bioethics committees, Britain, HFEA, reform
The Ethics of Bioethics
The American Society for Bioethics and the Humanities, and Albany Medical College, of Union University, and Union's Graduate College and Union College are jointly sponsoring this conference that deals with the issue that comes up over and over in this blog: What is the difference between ethical and unethical bioethics? Are bioethicists (whatever that means) supposed to be ethical people, and if so what does that mean? For example, bioethicists support their work with funds from all sorts of sources: universities built with tobacco money, federal grant money and foundation money that is heavily laden with government philosophy, and, yes, from companies, including pharmaceutical companies. If you believe some critics of bioethics, most notably Carl Elliott of Minnesota, being remotely close to at least one of these sources, big pharma, is an unforgivable sin. If you believe the most aggressive defenders of working with and for companies, it is thickheaded to turn down corporate research in bioethics out of repugnance while you seek a tenured guarantee of a salary (from a health system) funded largely by corporations. And then there is the matter of bioethicists and politics: Howard Dean has a bioethicist, and some (including me) say that the President's Council was used as a political tool in the last election. Bioethicists campaigned for Proposition 71.
Bioethicists have been sniping, arguing, and posturing about these issues, and there has been some real struggle to figure them out.
Finally there will be a big pow-wow - a major conference about bioethics' "big sins," including the worst mistakes made by bioethicists and some of the strategic errors made by bioethics centers. But the big goal for this meeting isn't to identify those mistakes, but to avoid new ones - it is maybe the most important issue in bioethics' recent history. The conference will attract a whole lot of scrutiny by the media and by bioethics' critics - will be setting standards for ethical conduct by bioethicists. There will be fireworks and there will be good intentions, and with any luck there will be progress. Save the dates: April 7-9. If you want to speak, there is an [PDF] invitation to you to make a 250 word proposal. Hope to see you in the NY capital in the spring! - gm (soon to be of AMC myself)
Labels: AMC, ASBH, bioethics centers, conferences, ethics of bioethics, learning from mistakes, politics, strategic errors, Union
No Comment from the Plaintiff, Who is Still a Tiny Frozen Glob
KRT newservice reports on the dismissal by a federal appeals court of a 1999 lawsuit that alleged that all U.S. frozen embryos (400,000) are threatened by stem cell research, which required that they be destroyed. The suit, by Hagerstown, Minnesota based National Association for the Advancement of Preborn Children ("an embryo is a terrible thing to waste") - NAAPC - "sued the federal government on behalf of "Mary Doe," a name it chose for the nation's estimated 400,000 frozen embryos."You see, Mary Doe is coming into court and she says, 'I'm alive, and I'm a human being. Stem cell research is killing my brothers and sisters, and I may be next in line,'" said Rudolph M. Palmer, who founded the Hagerstown organization about 15 years ago.In its appeal, NAAPC argued that present policies threaten the embryo every bit as much as the Clinton policies. "But a three-judge panel of the 4th U.S. Circuit Court of Appeals declined to address the ethics of stem-cell research, agreeing Tuesday with a lower court that the issue was moot since it hinged on outdated Clinton administration policies."
Labels: frozen embyros, lawsuits, stem cell research, US Circuit Court of Appeals
African Cloning and African Bioethics
Mathaba.Net News publishes the African Union News treatise on the "issue of human cloning within the overall context of a bioethics program: priorities and perspectives for africa," a piece contributed to the Africa-Europe Troika Meeting in November of this year. It is a very interesting description of foundations for an African bioethics and puts many of the current debates elsewhere about cloning into context.Prescription: Take Some of This, and Die
In an LA Times piece entitled 'Doctor, Reread Your Oath', Arthur Zitrin of NYU describes the situation in Kentucky, where Governor Ernest Fletcher signed a death warrant for a likely insane convicted murderer named Thomas Clyde Bowling. He writes:Fletcher, by signing the death warrant, violated not only the AMA code but Kentucky law as well (KRS 431.220), which echoes the code: No physician shall be involved in the conduct of an execution except to certify cause of death provided that the condemned is declared dead by another person.The state - and the Governor of Kentucky's own lawyers - argue that the Governor is not acting as a physician, and thus does not have the obligation to comply with his profession's mandates in that capacity. Writes Zitrin: "If Fletcher wanted to forgo that obligation, he should have surrendered his license when he was elected."In March 1994, the American College of Physicians, the AMA, the American Nursing Assn. and the American Public Health Assn. issued a joint statement calling for state licensure and discipline boards to treat participation in executions as grounds for disciplinary proceedings. The organizations wrote that participation in state executions contradicted the fundamental role of the healthcare professional as a healer and comforter.
Labels: American Medical Association, death penalty, execution, medical participation in executions, physician oaths, politics
The Voice of Bioethics at Berkeley
This profile of Guy Micco is really touching and gives a sense of what bioethics is like in the San Francisco bay area. Micco is a recently retired internist who for some time chaired the ethics committee at Alta Bates. Today he teaches students in the UC Berkeley/UCSF Joint Medical Program, who take basic science and electives at Berkeley and get clinical practice at UCSF. He heads the UC-B School of Public Health’s Center on Aging and its Center for Medicine, the Humanities, and Law (CMHL). One anecdote from the profile:A former patient of Micco, Laqueur tells the story of the renowned ethicist Bernard Williams, who often went head to head with Micco, during the years he taught at Berkeley, over philosophical questions. “I can’t bear Micco and all his nonsense!” Williams was known to say of Micco’s belief in the capacity of the arts and humanities to “humanize.” But then Williams got sick, and none of the doctors at Oxford University, where he was then teaching, could diagnose his ailment. He asked to be seen by Micco — “who figured it out in 30 minutes,” Laqueur says. “He’s a brilliant diagnostician.”And what is he like in his role?
Laqueur views him as an “unsung hero of campus” — a faculty member whose contributions don’t lie in the realm of publication, scholarship, or administrative acumen, but who nonetheless has made an “enormous impact on students and the ethical environment. In another age he would have been a religious leader or one of these doctors who would have had a cultish following.”
In this age, however, in Micco’s more modest estimation, he’s one man doing his bit in the interval between birth and death. “Every so often, when medicine gets too biomedical, too heavy into the technological,” he says, “someone calls for a corrective: ‘we need to turn back to the human element, the doctor-patient relationship.’ That’s happening now around the country, and the humanities play a key role…. I feel I’m a small part of that movement.”
Labels: being human, biography, diagnostician, doctor-patient relationships, humanities, public intellectuals
Nerds Eliminate Selves from Gene Pool
Danger, Will Robinson. Laptops destroy sperm. Apparently, "As well as being capable of producing direct local heat, [which decreases sperm concentration dramatically, laptops] require the user to sit with his thighs close together to balance the machine, which traps the scrotum between the thighs." Birth control for those whose religion opposes more direct methods? At a minimum, this should end the blogging revolution ... by attrition. [thanks Art Caplan]Labels: birth control, humor, laptops destroy sperm
A Man in Search of an Audience
Updated 12/5, 12/9 (We just can't slow this story down!): The Culture of Life people reported 12/1 on the news that the stem cell debate will soon be 'solved':A member of the President's Council on Bioethics believes he may have found a way to obtain stem cells with the same potential as embryonic stem cells without creating or destroying a human embryo.At last, a brilliant idea for getting around the big problem with embryonic stem cell research. It comes from President's Council on Bioethics member William Hurlbut, who constantly complains that those who favor embryonic stem cell research are - his term - "not morally serious" enough (take a listen). But he's had his idea vetted by "prominent Catholic clerics and other ethicists," to see if the technology he proposes is morally acceptable. The idea? Gushes the prolife newsletter:
in Hurlbut's method the gene responsible for creating the placenta is turned off. Hurlbut contends that this prevents an embryo from ever being created. But like traditional cloning, the egg still generates inner cell mass, or the "blank" cells, that some scientist believe have the greatest research potential. The [Boston] Globe reports that parts of the technique are currently being performed on mice.
Sounds great, right? It even sounds oddly familiar, probably. That is because it has been proposed in several forms by at least a dozen scientists who actually work in the area, and published in (among other places) Nature, although not by Hurlbut. Some of the papers are catching on to the idea that maybe the suggestion isn't so novel. But Hurlbut thinks his solution is important and scientifically significant, and conservatives are everywhere trumpeting the significant scientific breakthrough.
There's just one problem with taking him at face value: He has no publications in stem cell biology, ethics, theology or any part of clinical IVF. Nor is he, an MD, in clinical practice in that or any other area. Stanford faculty who have asked the president of that institution to release him point out that he has allowed and personally encouraged the description of him as a "Stanford scientist."
Hurlbut bases the moral utility of his claim on the fact that he vetted it with priests
The Boston Globe covered his theory, and right to lifers are beside themselves with joy at the morally serious solution. (UPDATE: Actually, some of the pro-life leaders are beginning to see the fix Hurlbut's idea puts them in) But there are many, many problems with Hurlbut's claims that even a visit to the Pope won't fix: 1) he makes assumptions about what counts as an embryo, a matter on which no ten embryo researchers agree, 2) he thus makes assumptions about when the destruction of embryonic material would count as destruction of an embryo, a person, or a human life for either scientists or clerics, 3) he makes no effort whatever to describe why his proposal is somehow less objectionable than other nuclear transfer technologies that he has campaigned against so vigerously.
UPDATE: Washington Post reports that Hurlbut's idea was mocked by a visiting scientist at the council, but that nonetheless the council is trading on the prominence afforded to it by Hurlbut's "big ticket idea," and as a direct result Leon Kass did in fact hold hearings on "solutions" to the stem cell problem, which (surprisingly to me, anyway) were hailed by Kass himself (chair) as important stuff. One might have guessed that Professor Kass would be a bit embarrassed that his handpicked council would advance ideas as potentially repugnant (following his analysis in his own writing) as Hurlbut's, designed to sidestep rather than engage a debate. And Kass does try his best to make the ideas sound thoughtful:
Kass said the ideas raise the possibility that "the partisans of scientific progress and the defenders of the dignity of nascent human life can go forward in partnership without anyone having to violate things they hold dear."But the idea is neither an artful dodge nor a successful one. - GM
Labels: bad science, confused journalists, Hurlbut, pro-life, science and policy wars, stem cell research
On the Way to Regulating Stem Cells in California
News from the National Academies conference in Irvine, California this week. Moreno, Charo, Lo are quoted. "R. Alta Charo, a bioethics professor at the University of Wisconsin at Madison, told the audience that, for anyone who believes embryonic stem-cell research is unregulated and has slipped through the cracks, she had brought 35 slides dedicated solely to the field's current regulations."Labels: California, regulations, stem cell research
President's Council Dignifies Stem Cell "Solutions"
Chris Mooney noticed this careful dissection of the ideas for "getting around" the ethical problems associated with using embryonic stem cells in research. It is a nice, thorough review of these ideas and how problematic they are. We're, frankly, much less impressed with the entire discussion than are either Chris or other critics. But we've already made that argument ad nauseum. It is an open question why the council has pursued the questions it has chosen to pursue.Labels: ad nauseum, Hurlbut, pesky definitions, President's Council on Bioethics, stem cell research
Tommy Thompson's Parting Words
Chris Mooney blogs Thompson's last comments on stem cell research before he is to depart his Bush administration role. MSNBC/Newsweek covered the final conference by Thompson.Labels: blogging, HHS, politics, stem cell research
Lose Reputation Now, Ask Me How
Nobel Prize winner Louis Ignarro, who won the prize in medicine, "endorsed a diet supplement for the heart sold by Herbalife International Inc. in exchange for royalties and then touted the ingredients in a scientific journal, without disclosing his financial interest to the publication,"according to Bloomberg.The supplement company, based in the Cayman Islands, which rakes in so much money (2003 revenue of $1.16 billion) that it could afford to pay the small company Ignarro formed to consult Herbalife on a supplement (comprised of ingredients that Ignarro discussed in his article) roughly $500,000. Herbalife is in the midst of a public offering, in which it is attempting to raise $193 million, so the publication was well-timed indeed for its efforts. The supplement is supposedly capable of significantly reducing the risk of heart disease even without exercise.
"Ignarro, 63, is the featured speaker in a one-hour Los Angeles based-Herbalife promotional video in which he claims Niteworks protects against heart disease, strokes, Alzheimer's and other diseases." You have to wonder if they watch Herbalife infomercials in Sweden?
Labels: Conflict of Interest, deals with the devil, Herbalife, Nobel Prizes, reputations, supplements
Breast Augmentation in Florida Families
Miami Herald chronicles what must seem in Florida as a natural next step for their nation-leading plastic surgery industry: teens who assert that cosmetic enhancement is a rite of passage, or perhaps even a right.Labels: breast augmentation, ideals of beauty, nipping and tucking, plastic surgery, rites of passage, teenagers
Nurses Don't Lie
Nurses top the list in Gallup's annual honesty and ethics poll, out today. 79% gave nurses a high or very high ranking for honesty, which is in keeping with previous years' results. "Medical doctors come in next on the list at 67%, followed by policemen (60%), clergy (56%), judges (53%), and daycare providers (49%). Lowest on the list are car salesmen (9%) and advertising practitioners (10%). Lawyers (18%) and congressmen (20%) are only a little higher in rank."Labels: honesty, nurses, public conceptions of integrity
Toronto Bioethics: Developing Countries in Biotechnology
At first glance, Peter Singer's new article in Nature Biotechnology (a special supplement) on the role of biotechnology in the developing world (and vise versa) might appear to be a strange kind of bioethics paper. The paper is complex enough as a business report to have been published in any major biotech business journal, and contains a full-on economic analysis of the development of new specific drugs and techniques in smaller and poorer nations, tools that both help indigenous populations deal with problems that would likely have been missed by developed world pharmaceutical companies, and that contribute themselves to exactly those companies.Personally, I think it is great that a bioethics group did this, and it is all-too-obvious that only this kind of analysis can really jump-start a major discussion of the ethics of promoting developing world biotechnology.
Singer et al conclude:
The key findings underline the importance in developing countries of 1) focusing on local health needs ("necessity becomes opportunity"), 2) the role of the private sector in commercialization, 3) widespread collaboration, 4) specializing in a niche, and 5) long-term government support.
"The study offers a variety of 'lessons learned' that can help other countries build a local biotech sector that brings local health benefits. They may also be of relevance to industrially advanced nations," says Dr. Singer.
Development of biotech industries in developing countries is essential, he added. Because markets for drugs in industrialized countries are much more lucrative, the creation of health products for people in the poorer parts of the world has lagged badly behind. Of 1,393 new drugs marketed between 1975 and 1999, only 16 were for tropical and other diseases predominantly affecting developing countries -- and three of the 16, were for tuberculosis, which affects countries worldwide. More than 175 new drugs were developed for cardiovascular disease in the same period.
Labels: bioetechnology, developing world, economic analysis, Nature, overseas drug trials, profiting from righ while ignoring poor, Singer
Bioethics and the New York Mets
Dan Brock of Harvard is in the New York Times discussing the NY Mets. Seriously.Labels: baseball, expectations, hospitals paying to treat players, New York Times, odd bedfellows, strange mixes
Lies, Damn Lies, and Ghostwritten Medical Articles
No one knows how long pharmaceutical companies will get away with this increasingly common practice of researching and writing articles that they want published, then finding some hapless, desperate young professor willing to trade his or her name recognition for a "free" publication. But who is doing the writing? There has been almost no discussion of the collusion and planning that goes in to the new tide of ghostwritten medical journal articles handed out to academic physicians in return for the objectivity that a seemingly unbiased author provides. The exposure of those who run these "paper mills" will happen eventually, and it will make for terrifying reading. Editors and consumer safety advocates will team up to figure out a way to go back and investigate any author's claim to have done research in any particular paper, or even to identify patterns among papers that have been ghostwritten - heuristics for a "fraud finder." But the danger of the growth of this practice in the long run is that authorship can eventually become a kind of consulting practice for smart, expert docs who need to corner the knowledge market in their specialty, and at the same time the publication of highly positive data under the authorship of Dr. Knowsalot will sell drugs for The Big Company. Obviously no one really knows just how many pieces a year are submitted to journals with fraudulent authorship, but editors are beginning to pioneer ways of identifying it. As the awareness of this practice increases, it will become more and more obvious that it is not rogue activity by people in isolated divisions of companies, but in fact a concerted push to change the way in which information is disseminated in health science, and in a way that benefits only the companies doing the changing.
Labels: collusion and planning, fraud, ghost writing, information dissemination, lies, no such thing as a free lunch
At Last the Cloning Play: A Number
The New York Times discusses the soon-to-open-in-New-York play A Number, in which cloning is a critical thread. In focus is the playright and her fascinating and somewhat apolitical approach to the subject matter. We cannot wait to see this play. Tickets are not on sale at the New York Theater Worshop, which doesn't appear though to sell them online.Labels: bioethics on broadway, cloning, New York City, theater
How to Get Depressed
Have and abortion, or delay putting your loved one into hospice. [Healthorbit]Labels: abortion, anxiety, bioethics is so damned cheery, difficult decisions, hospice
Cleveland Clinic's Top Heart Surgeon Profits from Criticizing Vioxx?
The Cleveland Plain Dealer follows a trail set out by David Blumenthal, director of Mass General's Institute for Health Policy. Eric Topol, one of the best heart docs in the world, if not the best, and long the face of innovation (and the most significant backer of bioethics) at Cleveland Clinic, has been researching Vioxx for three years:Dr. Eric Topol, the Clinic's top heart doctor, published studies as early as 2001 warning that Vioxx and a similar drug, Celebrex, now made by Pfizer Inc., posed potential risks to some patients. The drugs, called cox-2 inhibitors, were instant hits when they came on the market in the late 1990s because they are easier on the stomach than aspirin and other painkillers.The Plain Dealer - following details published in this week's Fortune magazing - describes Topol's subsequent hiring as biomedical advisor by a risky hedge fund called Great Point Partners LLC. (What is a hedge fund? It is what it does, which is "sell shares on the belief that they will lose value, then buy them back when they are cheaper.") What happened while Topol advised the hedge fund?
Fortune magazine reports in its Dec. 13 issue that Great Point bragged in a recent letter to investors that the hedge fund made a killing by "shorting" Merck stock -- that is, selling shares on the belief that they would lose value, then buying them back when they were cheaper.
Since Merck pulled Vioxx off the market, the company's shares have dropped 37 percent.
Great Point said Topol's warnings about Vioxx were one reason the fund was on "the right side of that situation."
But Topol took issue with the Fortune report, saying in a written statement that his views on Vioxx were well known long before he signed on with the hedge fund, that he did not know the fund was trading Merck stock, and that he had no personal investment in the fund.
Topol wrote to Fortune refuting this and other accusations of conflict of interest made the magazine:
Topol took issue with the Fortune report, saying in a written statement that his views on Vioxx were well known long before he signed on with the hedge fund, that he did not know the fund was trading Merck stock, and that he had no personal investment in the fund.Blumenthal stops short of describing Topol's activities as conflicted, and predicts more expert-as-investment-advisor behavior in the future. There's no indication in the stories that Merck revealed Topol's role, and Certainly Fortune could have dredged it up from the fund's press release, but you have to wonder how many people are going to step up to advise companies on matters of profits when the backlash can be this strong.
Topol said he quit the advisory board in October "because of the concern about an appearance of a conflict of interest, even though there was none." He said Great Point was paying him $12,000 a year to evaluate new technologies for treating heart disease.
If Eric Topol in fact earned $12,000 for advising a little hedge-fund company about the state of biomedical technology, including his view about Merck, which was already well published, one would be hard-pressed to accuse him of trying to profit. Topol could have made a small fortune hedging Merck himself, in someone else's name to cover his tracks. Would he really be stupid enough to take a tiny fee instead, in full public view? Unless there is much more to this story than is reported, it looks like a fancy way to tar the biggest critic of a certain pharmaceutical company... (Wait, should I have written that? Maybe a Philadelphia Inquirer writer will 'discover' that I own a retirement mutual fund with $14 worth of Merck stock in it...) - GM
Labels: Cleveland Clinic, Conflict of Interest, confused journalists, expert investment advisors, Vioxx
First Pediatric Bioethics Center
Seattle Post-Intelligencer reports that Children's Hospital Seattle is creating a Center for Pediatric Bioethics, with a 1.3 million startup budget, for which one can only assume there will be an imminent recruitment. Norm Fost is quoted. [thanks James Hughes]Labels: Center for Pediatric Bioethics, children's medical ethics, Doug Diekema, issues in treating children, Seattle, U of Washington
Very Small Martians
Martians may want to kill us, perhaps they are huddled deep beneath those supposed ice lakes waiting for the first ride over to the blue planet. But the thing is, they are probably so small that we won't see them coming. You think I'm kidding, but this is exactly the worry, as The Times UK describes it today:Earth must take precautions to avoid contamination from lifeforms that must now be presumed to exist on Mars, leading scientists gave warning yesterday.Potentially deadly microorganisms could be returned to Earth on a probe which is being planned to collect samples from the Martian surface.
The warning comes after a detailed scientific analysis of data sent back by the roving vehicle Opportunity which landed on Mars on January 25.Jeffrey Kargel of the US Geological Survey said that protection of our own planet from alien forms of life requires the assumption that Martian life exists. “Before proceeding with sample returns or human missions to Mars, we must review measures for planetary biological protection.”
[Thanks Art Caplan]
Labels: avoiding contamination, deadly microorganisms, Mars attacks, NASA, sometimes science is funny, space ethics
Replace Me
Penn is posting two senior bioethics professor jobs. Details:The Department of Medical Ethics at the University of Pennsylvania's School of Medicine seeks candidates for two Associate or Full Professor positions in the tenure track. Rank will be commensurate with experience. Responsibilities include extramurally funded research, teaching, mentoring, administrative responsibilities. Theoretical, clinical or empirical interests. National or international stature as a leading scholar in the area of Medical Ethics/Bioethics.Applicants with research expertise in genetics, research ethics, neuroethics and clinical ethics are particularly encouraged to apply.
Applicant should have a M.D., or Ph.D. or JD.
Curriculum vitae, writing samples, letter of interest, and three reference letters to the Chair, Search Committee
B, Dept of Medical Ethics, University of Penna School of Medicine, 3401 Market St, Suite 320, Phila., PA 19104-3308
You can't have my office until March 2nd, though, and I'm taking all the old movie posters. - GM
Labels: jobs
Medical Journal Editors Sin Too
For years the World Association of Medical Editors' Ethics Committee has produced rules about what sort of things editors should and should not do. This week, the Committee on Publication Ethics, a British Medical Journal-run publication ethics group, launched its own code for ethical conduct. British Medical Journal today reviews the new code and what it might mean. The code deals with lots of things but what really matters is its focus on conflict of interest.Labels: codes of ethics, Conflict of Interest, World Association of Medical Editors
Praising with Faint Damnation
William Saletan is Slate's chief political correspondent, and he plays chess with someone on the President's Council for Bioethics, he tells us. This is his new Slate editorial about the Council, and its deliberations about enhancement technologies that aim at extending life. Like those deliberations, Saletan wanders a bit. It isn't entirely clear what he is talking about in his "outsider-looking-in" Op Ed about bioethics, but the aim seems to be identifying why it is that - his words - the "council is a ridiculous paradox: an almost completely ignored and powerless body that happens to be debating the most consequential events of our day."Don't get the idea that this Slate writer is unhappy about the austerity of the council. He loves their academic demeanor, it's clear. He even pauses to list the florid names of the endowed chairs held by several members of the Council. He just wishes his admiration were shared; he is bowled over by the fact that nobody seems to give a darn about the Council's work.
Saletan has a real worry about the deliberations getting lost in the arcane methods of the council, such as the long-standing practice of choosing the least public forums imaginable:
[Human life extension is] an intriguing topic, with enormous—and for many people, possibly fatal—economic and political consequences. But you'd hardly know it from the lifelessness of the proceedings, which achieve a status hitherto unknown in Washington: too boring to televise on C-SPAN. The reason for this is simple: The council consists of, and takes testimony from, the sort of people who have spent enough time probing deep questions to cultivate expertise and esteem. These people used to be called monks. Today we call them nerds.
Why is Pres. Bush's erudite bioethics council irrelevant: that is the question Saletan wants Americans to ask. And it is a good question. Saletan's conclusion is that the President's bioethicists are just too professorial to fit in to this imperfect political world. He points to the fact that during their essentially unattended proceedings, these folks just read papers and seem oddly distant. "Papers can't engage in that debate. Only human beings can. And that's what the council must learn not just to say, but to do." Fair point. The public activity of the council to date has really boiled down to publishing a few anthologies that its chairman himself described as ideal texts for an upper-level undergraduate philosophy class. If there were not already dozens of excellent texts for just that purpose, lots of bioethics people would be happy that the council was helping to educate, even if it only really aimed at those who are already fairly well educated.
But there are dozens of those books. So the question is why can't the council do something for the public? Why isn't half its money and time spent on discussion and actual planning for social debates about the issues of the day in biotechnology? Why can the council not put together at least a half-decent website that anybody who can read will be able to utilize?
The answer is that far too many scholars, when finally given the chance to make a difference in public life, find that they don't like the public very much, or at least not enough to abandon more rigorous conversations with their colleagues. The line is something like this: "our job is to think the deep thoughts about complicated issues; others can figure out how to translate those ideas and engage the public -- why can't the public just come listen to us? We put up a website with links to download our papers!"
It is an interesting editorial and will spark some equally interesting debate about what kind of public commission on bioethics can really be said to make any difference at all. But doubtless the entire debate will be ignored by the council, which is Saletan's point after all. Maybe bioethics doesn't belong on the Presidential seal. Perhaps only things that really do aid and engage the public should be there. - GM
Labels: boring academics, educating the masses, is bioethics irrelevant?, President's Council on Bioethics, Slate, we're monks?, William Saletan
Of Houseboats and Euthanasia
This is the strangest mix I've seen.Labels: euthanasia, literary parody, strange mixes
The Most Influential Philosopher Alive?
Marvin Olasky says it is Peter Singer. Boy does he ask Singer some strange questions.Labels: influence, public intellectuals, Singer
We Are All Mutants
Guadian Newspaper (London) discusses Armand Marie Leroi's book, Mutants, which today won Guardian First Book Award. The book sounds novel, even in a field filled with impressive research from different disciplines. Leroi is thoughtful about the ways in which those with mutations talk about themselves, and about the role of mutation in the description and social meanings of 'normalcy' for a variety of traits. He does actually reach a strange conclusion about one of the more obvious mutants of the past decade, Dolly, and he's no big fan of scientists doing ethics:What Mutants emphatically is not is a disquisition on the ethics of our ability to influence mutation. "I considered the matter, and discovered that I had nothing original to say about Dolly the sheep or stem cells," he says. "I've no particular expertise in this area, and there's a lot of people gassing on about it, and much of the discussion seems to me misguided and beside the point. I'm quite strongly of the view that scientists have no particular ethical authority in these debates."
Labels: books, defining disease, defining normal, mutants, who has ethical authority?
New York HIV Experiments on Children (Updated)
It appears that vulnerable children in some of New York's poorest districts are being forced to take part in HIV drug trials. [thanks Jim Coyne] Paul Root Wolpe pointed out that the story has actually been around for a while. UPDATE: Glaxo Smith Kline responds. [thanks Andrew Rosenthal]Labels: abuse of power, experimental drugs, forced drug trials, GlaxoKlineSmith, human guinea pigs, human subjects, movies, New York City, vulnerable subject populations
Pennsylvania on State Stem Cell Money
"Us too." But perhaps money isn't enough in Pennsylvania, where destruction of an embryo seems to be a class 3 felony. Efforts to change that law (in my [Glenn's] state-based bioethics class at Penn, in cooperation with Pennsylvania State Senator Alison Schwartz) fell flat on their face; she was even threatened with retribution.Labels: felonies, money can't buy everything, Pennsylvania, politics, state stem cell politics
Planned Parenthood Under Seige
Family.org reports that several school districts are piling on the efforts of pro-life groups to remove Planned Parenthood entirely from any role whatever in school districts. It's the old saw, condoms and abortion discussion. If we could just get people to quit learning the words 'condom' and 'abortion', you see, sex would stop entirely.Labels: abortion, education makes people have sex, Planned Parenthood, sex education
Conflicts of Interest Everywhere
The Lancet is engaged in scandalous destruction and obfuscation of data on the relationship between abortion and breast cancer. So goes the story on Businesswire, in which an editorial by Ed Furton in Ethics and Medics journal is credited with making the charge. The story announces the finding by the ethics journal as though Lancet has been caught in a real moral morass. But ... Ethics and Medics, it turns out, is a publication of the National Catholic Bioethics Center, and their editorial was highlighted by the Coalition of Abortion and Breast Cancer. Now who would guess that the charges in the editorial involve the claim that the Lancet and cancer research community in general are deliberately "corrupting scientific research examining the abortion-breast cancer link."JAMA is running a great set of articles on the relationship between ethics and the bioscience business; Psaty and colleagues review "Potential for Conflict of Interest in the Evaluation of Suspected Adverse Drug Reactions: Use of Cerivastatin and Risk of Rhabdomyolysis," and Brian Strom replies. Fontanarosa, Rennie and DeAngelis discuss drug withdrawals in an accompanying article. Jeremy Sugarman reviews Margaret Eaton's book Ethics and the Business of Bioscience. (subscription required).
Labels: bad science, Catholicism, Conflict of Interest, ethics and bioscience, JAMA, wearing your bias on your sleeve
Bioethics Journal Charges Lancet, Scientific Community with Cancer Cover Up
So goes the story on Businesswire, in which an editorial by Ed Furton. Ethics and Medics, it turns out, is a publication of the National Catholic Bioethics Center, and their editorial was highlighted by the Coalition of Abortion and Breast Cancer. Now who would guess that the charges in the editorial involve the claim that the Lancet and cancer research community in general are deliberately "corrupting scientific research examining the abortion-breast cancer link."Labels: bad science, Catholicism, The Lancet, wearing your bias on your sleeve
