July 2006
Want to Wean Pro-Assisted Suicide Advocates from their Views?
Dope Them with Coffee
Tim Murphy sent us this juicy bit from the Chronicle of Higher Education:The Chronicle of Higher Education reports the results of a study in the current issue of European Journal of Social Psychology.["Coffee for Persuasion, "The Chronicle of Higher Education, July 7, 2006, A17; thanks Timothy Murphy UIC]Researchers identified 72 female students who said they favored voluntary
euthanasia. Researchers then gave orange juice to these subjects, but half
of them got juice spiked with caffeine. The students then read a series of
arguments against voluntary euthanasia. An after study showed that the
subjects receiving the caffeinated juice remembered more of the arguments
AND were more likely to shift towards anti-voluntary euthanasia views. Similar
results obtained in a study of 76 males.
More CMS Funding for Medicare Clinical Trials?
In 2000, the Medicare program changed its long-term policy of declining to pay for "experimental treatments" and implemented a policy of paying for the "routine" elements of care in clinical trials on Medicare patients. The policy was riddled with ambiguities, and it's never been clear what the limits of coverage were. This month, CMS has made two moves that seem to indicate a much greater willingness to fund clinical trials. On July 10, the agency announced its intention to revisit the 2000 Clinical Trials Policy, in order to clarify those ambiguities and make the policy more useful and intelligible to researchers. On July 12, CMS announced a revision of its "Guidance for National Coverage Determinations with Evidence Development."This revision, in part, makes it easier to obtain Medicare coverage for trials that are gathering data about new treatments. The law firm of McDermott, Will & Emery has a nice summary of what's at stake in the re-opening of the Clinical Trials Policy here. The CMS Clinical Trials Policy page, with links to the policy and related documents, is here. A CMS press release dealing with (and linking to) the Guidance revision--and mentioning the re-opening of the Clinical Trials Policy--is here.
- Stephen Latham
The Best Stem Cell Debate Ever
The Sleaziest Scientist Ever Stole Money from His Research and "Tried to Clone a Mammoth"
CNN.com keeps us up to speed as much as I can stomach, anyway, having watched as the scandal that we helped unfold has turned into precisely what we said it would not turn out to be: the incredible fraud of one person. Hwang turned donations and grants into cash. He tried to do all sorts of things that weren't in the applications he'd made, including a number of things that were clearly just plays for publicity, like the attempt to clone a tiger or Mammoth. The latter, clearly dangerous as well as stupid, just fits right in to what is becoming increasingly clear is the psychopathy of Hwang.Hwang though, who again blames all his woes on his junior colleagues, insists he has done nothing wrong with regard to deceiving donors, "I am also a victim who was deceived. I am the biggest victim," he said.
His lawyers say he will open a new lab. He has been banned from doing the research, but hey, Dr. Zavos may be hiring in Kentucky.
thanks Art
Bioethics Invades Colorado
Chanting "nothing about us without us," the bioethicists from the American Society for Bioethics and the Humanities will first invade a monthly meeting of Denver's main disability rights group, when it converges on Denver this October 26-29, and then put away its signs and go on about the business of being long-winded in large hotels with expensive Internet. Denver is a nice choice for ASBH, I'm told, and the rooms are El Cheapo, but tickets aren't, so buy now, friends and neighbors.For a peek at the program, download this Annual Meeting Brochure.
The Court Rules a 16 Year Old Must Undergo Treatment
This is a tough case but I can live with that decisions. The more interesting question is whether the court's ruling is enforceable. Trying to do chemotherapy on a non-cooperative six foot one 16 year-old will prove to be something of a challenge.-Art Caplan
The Bush Decision Didn't Matter Anyway
Caplan & McGee on Bioethics has become McGee on Bioethics, as Art takes up writing responsibilities for the Philadelphia Inquirer. This Sunday then is the first installment of the new straight-up edition of the Times-Union/Hearst/New York Times News Service column, in which McGee argues that the Bush veto of stem cell legislation favored by the vast majority of Americans and a many in his own party in Washington is, well, irrelevant:The Washington imbroglio over stem cell research is history, as is any hope that the federal government will devote any real funding to the research during the next three years. The annals of scientific history, no matter which party is writing them, will not smile upon President Bush's callous disregard toward those who entrusted his office to put science policy ahead of religious dogma.
Surrounded by "snowflakes," children made from embryos that were never destined to be used for the derivation of stem cells, Mr. Bush used nothing less than his first presidential veto to suppress legislation by his own party to expand by only a tiny amount the stem cell research funded by the National Institutes of Health. The President might seem oblivious to the overwhelming majority of Americans who favor embryonic stem cell research, including millions who suffer from diseases that it will likely be used one day to treat. But the truth is that he isn't.
This President has made a decision to leave controversial matters of science and medicine to the states. It was clear from the moment he offered up his odd logic, in August 2001, that there was no need for the federal government to fund or regulate the creation of embryonic stem cells for research because there were 62 "ethical" lines of embryonic stem cells already on ice.
Only much fewer of the cell lines were viable, and the ethics of the policy made no ethical sense to anyone. It was enough to send some American stem cell researchers into orbit, or at least to Britain, Israel, Canada, and -- California. There, just as the President was elected by the narrowest of margins, a bankrupt state voted by a handy margin to devote almost 10 times more money for stem cell research than has been proposed for the federal government.
These days, the none-too-united states have taken on roles that would have been unthinkable three years ago. The governor of Illinois ensures the passage of stem cell funding legislation in that state, then launches a letter-writing campaign to lure Missouri's top scientists across the Mississippi River. Nor is Illinois alone. Connecticut, Maryland and New Jersey could watch the federal debate and mutter to themselves how nice it is not to suffer under the Bush stem cell policy.
New York's stem cell researchers, along with those in 26 states that have laws banning or restricting the research, can be forgiven for checking on real estate and schools in New Jersey and California. Unable to fund research, forced to work with cells that arrive in plain brown wrappers or to employ technicians in other states to do much of their research, our researchers keep company not with snowflakes, but with patients who have juvenile diabetes, parents who have spinal cord injuries and grandparents who endure Alzheimer's and Parkinson's.
The battle for stem cell research in the states is getting stranger by the minute. Massachusetts Republican Gov. Mitt Romney vetoed legislation promoting the research, but was overridden and the state now has an even more ambitious program of research under way than was originally proposed. Wisconsin Gov. Jim Doyle, a Democrat, supports funding for the research in that state, where the cells were discovered, but is at risk for doing so.
And in New York, the state with more potential candidates for stem cell therapies than any other, and a huge majority in favor of embryonic stem cell research, two gubernatorial candidates have announced opposite positions on the research, with one -- Eliot Spitzer -- strongly embracing it.
But for now, the state of the research, the state of the science and the state of our state's scientific standing are all at risk, thanks to the final chapter of the Bush science novella.
Stem Cell Suburbs
An excellent piece by Jackie Calmes in today’s Wall Street Journal [subscription req'd]points to the importance of embryonic stem cell research as a political issue in a number of suburban races for the US House of Representatives. As the Republican Party has become more socially conservative, many suburban areas have become more socially diverse, politically independent, and less reliably Republican. Most polls indicate that a majority of Republicans support expanded stem cell research, which may make some conservative Republican legislators in suburban seats politically vulnerable. Democrats are trying hard to capitalize on this potential vulnerability by appealing to moderate Republicans and independents, who may not be comfortable with the Republican Party’s cultural conservatism.Calmes’ story points to Illinois’ 6th Congressional District as an example of this conflict. This wealthy suburban Chicago district has been represented for over 30 years by Henry Hyde, a staunch foe of abortion and embryonic stem cell research. The race to replace Hyde pits Republican state senator Peter Roskam against Tammy Duckworth, an Army helicopter pilot who lost parts of both legs in combat in Iraq. Rostam has been a leader against state financing of embryonic stem cell research in the state legislature, while Duckworth is a strong stem cell research supporter. Republican margins in both Presidential and House campaigns have declined over the years in the district, and the race is now rated as among the closest in the country by several national political gurus, as seen here and here . Other suburban Republican politicians, including the local county Republican chair and the Republican party leader in the Illinois House of Representatives, have become embryonic stem cell research supporters, suggesting that being pro-stem cell isn’t politically hazardous in some Republican circles. Calmes also points to suburban districts in other states such as New York, Pennsylvania, Missouri, New Jersey, Colorado, and Washington where similar forces are at play. At least one Republican (in a suburban St Louis district) is running in a party primary on a platform that stresses public support for stem cell research.
Congressional elections are rarely about just one issue, and Rostam and other similarly situated Republicans may be able to win their elections by focusing on other issues besides stem cell research. The split in the Republican party over stem cells shows no signs of going away, however, and in some Congressional districts it may prove to be decisive.
Jim Fossett
"Attempt to Clone a Child"
Gareth Stop. Stop Now. Please No More Clone Hype.
Gareth Cook is so smart. But, seriously, this Zavos guy is a fraud. F R A U D. It's called "background research." There will BE no cloned child in Kentucky.[Update. As usual we've been called on our not funny enough joking manner; to be clear we really do think Gareth is smart. The complaint is that Zavos is utterly disreputable and that this was not a difficult thing to prove with background research, and it is growing annoying to have to deal with these stories every time someone bites one of Zavos' lures. Gareth points out that we didn't link to the full story in the Boston Globe, which we have now, and asks "how [we] are so sure that Zavos is not in fact making these attempts? (Presumably it would be in Cyprus, not Kentucky, as you say.)" To which the answer is, because Zavos has neither the skill nor resources nor training, nor intelligence to do so. How's that. Clear enough? He may have been smart enough to call before the NAS with the Raelians, but the bar was pretty low that day.]
Jim Fossett on the Bush Veto: A Bump Not a Barrier
Advocates for expanded stem cell research should not overstate the consequences of President Bush’s veto of a bill to expand the number of stem cell lines eligible for federal funding. While the current policy that the veto sustains can be fairly accused of slowing up the pace of stem cell research to an unknown extent and making it more expensive, it’s important to remember that this policy does not prevent funding of stem cell research from non-federal sources, outlaw or limit expanded research financed with other sources, make it illegal or even more difficult for couples to donate frozen embryos for research purposes, or have any affect on such research outside the borders of the United States. The long term effects of this veto, to steal a phrase from David Stockman, may be less than meets the eye.
First, the question of funding. While it’s true that the Bush Administration’s policy has restricted funding of stem cell research from federal sources, it has no effect on research supported from other sources. In the face of federal restrictions, private foundations and states have become increasingly active in supporting this research. If one adds up all the resources that have been committed or approved from private or state sources, it almost certainly exceeds by a large margin what would have been spent by NIH and other federal agencies on embryonic stem cell research had the Bush restrictions not been in place. It is true that it has taken time for these other funding sources to come on line and researchers have been forced to take extraordinary measures to segregate federally supported research from that supported by other sources, but these obstacles have at worst slowed the pace of scientific research, not stopped it. As noted here, some are of the view that claims by the University of Wisconsin, which holds several major patents on stem cell technology, may be a bigger problem over the long run than any federal funding restrictions, Even if President Bush had signed the stem cell bill, it would not have made more federal money available for research, nor would have it removed all restrictions on the use of federal funding in stem cell research. Andrew Pollock of the Times has a good explanation of these issues here.
Second, it’s really hard to tell what the absence of the Bush Administration’s restrictions would have had on the availability of embryos from which new cell lines can be derived. While it’s certainly true that the number of embryos originally collected for assisted reproductive purposes is very large and growing rapidly, it’s hard to see how the supply of those embryos which couples are willing to make available for research would be greatly affected by the availability of federal funds to derive new stem cell lines from them. There are no particular barriers to couples donating unused embryos to research now, but only about three percent of unused embryos are currently donated. If this percentage holds, more embryos may become available as the number of unused embryos grows. As reported here, however, many couples are ambivalent about donating, or frequently “abandon” embryos, leaving fertility clinics with large supplies of unclaimed embryos of uncertain legal, or moral, status.
Third, the stem cell research issue seems to be getting slowly decoupled from the politically toxic abortion issue. Public opinion on this issue, as described here and here, has never been as polarized as many have thought. The popular image of a large, rigid majority of Christian evangelicals confronting a large, rigid majority of latte liberals simply isn’t true—plenty of people appear both to support stem cell research AND accord some kind of special moral status to embryos. Politicians are also beginning to take less rigid positions---the bill which the President vetoed was supported by a number of ardently pro-life Senators---Majority Leader Bill Frist, Gordon Smith of Oregon, Bob Bennett of Utah, Trent Lott of Mississippi, and Orrin Hatch of Utah. Stem cell advocates also owe a big shoutout to Nancy Reagan, who has probably done more than any other individual to make supporting stem cells politically respectable for conservatives. As David Broder also notes here stem cells have become political issues in several close Senate races. Democrats appear optimistic that they can use the issue to their advantage—Missouri and Pennsylvania are mentioned most often, but stem cell positions also separate the parties in Senate campaigns in New Jersey, Maryland and Tennessee.
Finally, it is highly likely that the first stem cell breakthrough, whether it happens here or somewhere else, will effectively end this debate. Not even the most ardent stem cell opponent is likely to be willing to get up in public and tell people that they should forego effective treatment for themselves or a loved one.
Jim Fossett is co-Director of the Program on States and Bioethics of the Rockefeller Institute of Government and AMBI
Is There Anything Left That We Can Eat?
Everything is awful among the aisles of the clean well-lighted spaces.-Art Caplan
Bush to Stem Cell Community: Drop Dead
Art Caplan on George Bush:resident Bush’s embryonic stem cell policy began with lies and has now ended with one.
Bush reserved his first veto as president for one of the only valuable things this do-almost-nothing Congress has managed to actually get done.
With a flourish of a veto pen that has remained dormant no matter how dopey Congress has been, the Senate bill allowing public funding of embryonic stem cell research has been consigned to the legislative trash can.
An administration that has shown itself over and over again to have trouble telling the truth is now telling Americans in wheelchairs, those with damaged hearts, babies who are diabetic and those left immobile by Parkinsonism not to worry. The president, whose grasp of science left him unable to identify creationism as a fundamentally religious idea, and his trusty sidekick Karl Rove, rarely seen in a white lab coat but who knows something about rats, having been in Washington for some time now, claim to know best which medical research is most likely to benefit diseased Americans in the future.
When Bush uttered his first confused words on the subject of embryonic stem cell research five years ago in August 2001, he said that he was opposed to embryonic stem cell research since it involved the destruction of human life.
He noted that there were embryos, and many of them, already in existence in infertility clinics and left unwanted by those who created them. But he held it was wrong to use those in research. Instead, he told us, he had found a way out of the dilemma of how to do embryonic stem cell research without destroying any embryos.
What had Bush figured out that no one in the scientific community could see then and remains unable to see now?
There were, he said, 60 stem cell lines that had been made from embryos which held “great promise that could lead to breakthrough therapies and cures.” If he gave federal money to support research on those lines and funded research on adult stem cells, such as bone marrow, fetal blood cells taken from umbilical cords and other adult stem cells found in skin, muscle and the intestine, then all would be well.
Wrong science, flawed ethics
The president’s supporters, a much larger set then than now, blessed his insight and his wisdom in producing a marvelous "compromise" and pronounced the quandary over stem cell research resolved.Except, as even the president must have known and some of his most vocal supporters knew, the president was talking through his hat.
There were never 60 embryonic stem cell lines available for research. Not even close. Even if there had been, that number would never have been enough to support serious research on diseases and disorders for very long, as experts in embryonic stem cell research found out in less than a year.Not only was Bush’s science wrong, the ethics behind his so-called compromise were deeply flawed, too.
If the president deemed it moral to use cell lines made from human embryos that had already been destroyed, then why would he argue that other embryos headed inevitably for destruction couldn’t be the source of new stem cell lines?
In fact, if the president was so concerned about the fate of embryos, why did he not speak out to close infertility programs around the country that destroy embryos? Why did he not try to shut down privately funded embryonic stem cell research? And, if the president was so worried about destructive embryo research, why did he not propose a ban on bringing across our borders any cure or therapy that might be discovered overseas if it was based on embryonic stem cell research?
If adult stem cell research were really an alternative to embryonic, then why have nearly all but the tiniest handful of the experts who work on stem cells maintained that this is false? And why has the president failed to secure the agreement of a single medical or scientific society of any standing with his position that a combination of funding a small number of existing stem cell lines made from human embryos and a push behind adult stem cell research is the best strategy to mend damaged brains and heal broken spinal cords?
Evidence that the president’s views rest firmly on a foundation of deception layered with a rich mix of confusion and inconsistency is to be found in the enthusiasm with which Britain, China, India, Israel, Australia, Russia, Sweden, Germany, Canada, the Netherlands, Singapore, Korea, South Africa, France and many other nations have launched embryonic stem cell research programs.
The only people who continue to put faith in the policy of promoting government funding for only adult stem cell research that the president is still babbling on about are the president, his close advisors, some conservative groups motivated by deeply-held religious views concerning embryos and a few neoconservative polemicists who seem desperate to find an issue that might bring them redemption after doing such a fine job contributing to the design of American foreign policy under Bush.
Sending a clear message
With his veto of the bill creating federal funding and regulation over embryonic stem cell research, the president continues to ask us and, more notably, those who are sick and ailing amongst us, to swallow a false, morally incoherent policy.Not too long after the president’s first speech on the subject, the sick and ailing recognized the president was not wise, but rather wacky, and decided to do something about it. With the help of high-profile efforts involving Nancy Reagan, Christopher Reeve, Mary Tyler Moore, Michael J. Fox and a less visible but incredibly committed and hugely influential phalanx of disease advocacy organizations a sound policy about embryonic stem cell research was articulated.
The policy to permit closely monitored federal funding swung hearts and minds in both houses of Congress. Governors and state legislators and, yes, even those in the media began to understand that the only sensible strategy in the battle against disease, infirmity, disability and death is to put the chips of public funding behind all forms of stem cell research — embryonic and adult.
With his veto the president has now reaffirmed a policy that never made any sense, garnered no scientific support to speak of, was abandoned by both houses of Congress and the leaders of his own party and, most importantly, got no traction with those most in need of the benefits of the research — patients and their families.
The president has now told doctors, researchers and patients to drop dead. Science policy in the Bush administration is best made in the White House, not by scientists and not by Congress.
Registering Research
Slowly but surely clinical research is inching toward doing the right thing in clinical research, and that may be what will happen in the registration of all human research by the WHO. There is no excuse for not making every trial conducted with human subjects publicly, easily and usefully available in a timely manner. If subject are recruited with the promise that they will contribute to knowledge then the results of every trial must be made public either in print or on the web in a standardized format.The Reporters' Guide to the Stem Cell Vote
With a vote on stem cell research funding imminent in the Senate, terrified reporters from papers everywhere areBioethics and Politics Conference Roundup
Some comments about the bioethics and politics conference in Albany that have appeared so far:A post from James Hughes
One from Wesley Smith
Life Ethics posted this and more
Life Studies posted this recount of the blogger's experience speaking
Chris Mooney sought advice and got it on how to debate Richard Doerflinger, and this is his report on his "cage death match" with Richard
Alison McCook at The Scientist wrote about Alt's paper on stem cell research in Maryland
Most comprehensive, the Women's Bioethics Project has commentary from Kathryn Hinsch here
And there is a really cool page of podcast interviews and lectures already up from Linda Glenn
Only two stories focused on the bizzare, short-lived (no pun intended) protest by Not Dead Yet, in The Scientist, and the Albany Times Union
FDA on Artificial Blood: Um, This Time, We're Going to Think First
From the "FDA Statement on Blood Product Advisory Committee Meeting on Proposed Clinical Trial for Blood Substitute Product":thanks Al YarinskyIn view of significant public interest in the proposed study and the benefit of public discussion, FDA has cancelled tomorrow's meeting of the Blood Products Advisory Committee. We will work toward a future meeting where information can be shared with the public.
FDA had planned to devote the July 14th portion of the Blood Products Advisory Committee meeting to consider a proposed clinical trial by the U.S. Naval Medical Research Center of an investigational blood substitute product manufactured by Biopure.
The complexities involved in the development and evaluation of the safety and effectiveness of such products can raise many unique scientific issues. This meeting was scheduled to provide the Advisory Committee an opportunity to discuss development plans for this product, and to provide the FDA with additional independent expert input. Advisory committee meetings that involve early development issues are frequently closed to public participation because confidential commercial information is central to the discussions.
The development of safe and effective treatments that could substitute for blood holds significant public health promise and could potentially save many lives. Given the level of public interest in this matter, the parties will work toward greater public involvement at this early stage.
Medical Neglect? The Abraham Cherrix Case
This is an especially tough case since the child involved is older and seems very mature. Still it is hard to deny an efficacious treatment based on the views of a sixteen year old who is still strongly under his parents influence when it comes to attitudes about standard medical care.- Art Caplan
BMJ comes down hard on New England Journa for Vioxx Missteps
Matters concering conflict of interest and outside influence and what to do about them continue to bore away at biomedical science. In the recent JRSM a former editor of the BMJ takes the NEJM editor and board to task for dereliction of duty with respect to the Vigor study of Vioxx. It is not a pretty story.- Arthur Caplan
Time Out
Ok. No blogging. Not for a week. The conference is done and everybody around here needs a little break. Back soon!Jim Fossett on States & Bioethics: Wisconsin
A recent piece in the Washington Post by David Broder, on the Wisconsin gubernatorial campaign illustrates both the continued importance of states for the immediate future of stem cell research in this country and the differences between the politics of embryonic stem cell research in state campaigns and national ones. As Broder describes, Governor Jim Doyle is running very hard on a platform which stresses the potential economic development benefits of stem cell research. The state, the University of Wisconsin’s alumni foundation (which holds important stem cell related patents) and private companies have already spent lots of money on building facilities and recruiting scientists, and Doyle wants to spend more. Doyle’s Republican opponent, U.S. Representative Mark Green, has supported the Bush Administration’s policy of limiting federal funding to pre-existing stem cell lines. Doyle has accused Green of being anti-science and opposed to progress.As a political issue, stem cell research has divided the Republican Party in many states between pro-business elements interested in improving state economies and religious conservatives opposed to stem cell research on moral grounds. Broder’s article, however, illustrates some of the political problems stem cell research may pose for Democrats. Doyle’s support for stem cell research is part of his posture as a pro-business moderate. Even in a state with a strong progressive tradition such as Wisconsin, however, stem cell research isn’t emerging as a issue around which Democrats can easily rally. Doyle’s position has failed to gain much traction among traditional Democratic constituencies, such as teachers’ unions, minorities, and liberals, many of whom have priorities other than economic development and object to state subsidies for private businesses. The coalition supporting stem cell research in Wisconsin, as in most states, is largely composed of private companies interested in stem cells as a potential line of business, other pro-business groups, disease advocates, and medical schools and other research facilities interested in maintaining or expanding a stem cell research program. While this coalition carries greater weight in many state capitals than in Washington, it doesn’t fit comfortably with either party’s electoral “base”.
There are other issues in the Wisconsin campaign, and it would probably be a mistake to read the election’s outcome as a referendum on stem cell research. It should provide useful clues, however, to how stem cell research is likely to fare in the political process in the vast majority of states where California-style initiatives and referenda are not seriously used.
- Jim Fossett
Learning from Schiavo
Art and Paul Root Wolpe reflect on some lessons learned in the Penn Schiavo conference:"The most startling impression to emerge from the [Penn] Center's conference was that the people who were painted by one side or the other as extremists - Michael Schiavo, Judge Greer, Father O'Rourke - come across as thoughtful advocates, see end-of-life care decisions as complicated and fraught with moral difficulty, and deserve none of the venom heaped on them by their opponents.
Julia Quinlan, the mother of Karen Anne Quinlan, spoke movingly of her long struggle to gain the legal right to control her daughter's care in the landmark case that established a person's right to refuse life-supporting medical care. Michael Schiavo recounted his 15-year ordeal seeking the best care for his wife, during which he became an emergency medical technician and a nurse in order to better help her, and the painful decision he made after being told by Terri's physicians that her status would never improve. Calmly, but with obvious pain, he described the websites, protests, and letters and emails that portray him as a wife-abuser, a money-grubber, a philanderer, and a murderer. Dr. David Casarett described the struggles of the families of the geriatric patients he cares for as they try to make difficult decisions about the care of those they love.
Everyone got in his or her shots at the media coverage. The willingness of 'experts' to come forward and pronounce on Terri Schiavo's medical condition, or even offer to 'cure' her, and the indulgence of television in particular to give them airtime drew especially critical comment. Bob Bazell of NBC noted that there are all manner of media, and if one finds the journalism of the cable channels too overwrought, there are many other outlets available that covered cases like Schiavo with much care and balance.
So what can be done to make dying less burdensome in America for those who cannot make their wishes and feelings about end-of-life care known? A few important points emerged from the presentations and discussions. Hospice care needs to be readily available to all Americans. Physicians need to continue to struggle to improve palliative care and to communicate honest and accurate information to families and loved ones about those who are terminally ill or severely neurologically compromised. Every one of us must discuss our wishes and our choice of a spokesperson with those closest to us, and these wishes must be put in writing in the form of an advance directive or durable medical power of attorney. Our written document needs to be updated every few years to reconfirm our choices.
Single Payer System: It's Time
John Balint is making waves in New York with a proposal that is, to put it mildly, an unlikely sell to the state's Republican senate: that the uninsured should be covered through radical change in the state's public health care system. Balint of course is the founder of the bioethics operation at Albany and namesake of the John Balint Lectureship, to be given by Edmund Pellegrino, Chairman of the President's Council on Bioethics, this Thursday, as well as the namesake of the John A. Balint endowed chair in medical ethics, funded largely by grateful patients in his 40 year plus practice as a gastroenterologist.The American Values Agenda
Ah, summer in the House of Representatives. Time to require women who seek abortion to be told that the procedure can cause fetal pain, to ban human cloning, and to "work to protect the faith of our people" (House Speaker Dennis Hastert 6/27).The Scientist: The Chief of Bioethics
When I was being recruited to come to Albany Med to form AMBI, the director of New York State's public health labs and I agreed that it would be outstanding to build a bioethics research component for the Wadsworth Center.
Before I could do that, though, I had to come up with a title for what it was, exactly, that I would do, so that I could explain it both to those who pay my salary and to anyone from whom we needed to raise money for the research. The title we agreed on was "the Chief of Bioethics," a moniker taken from Paul Root Wolpe, who used a similar title to describe to people in NASA what a bioethicist does there. At Wadsworth titles matter, and this one was to distinguish the specific components of my role, as the head of Wadsworth had articulated it to me, from that of, e.g., an IRB member or any other regulatory group. What's in a name? Well, maybe not much, but in the early days of "benchside bioethics," the one we chose made it clear that bioethics is one among several critical new areas of research interest for the director of the Wadsworth Center.
What I didn't count on was politics: within weeks, the director told me that pro-life advocates and those who staff New York's once prominent Task Force on Life and the Law were complaining to the Department of Health - perhaps correctly - that there was no way for a bioethics scholar to write and talk in the ordinary way (in journals, talks and in the media) while under the umbrella of a state title about something as controversial as bioethics. The executive director of the task force - a group one of whose reports was actually temporarily embargoed for political reasons by the state - went so far as to say to me that she was the real "chief" of bioethics. At that point I didn't know what to do; should there be rank in state bioethics, and if so should it be given on the basis of party affiliation or publication record?
In this month's column for The Scientist, I explore the increasingly popular idea that bioethics is at best an activity that does not particularly admit of expertise, and at worst is a political football. There are dozens of people who work in bioethics in companies, government, consultancy, law firms, even lobbying. But when it becomes impossible to talk - when holding a title in one arena means you cannot do your job as a scholar - the recent effect has been to scare many of the best people in the field away from even using the label bioethics anymore, so that they will not find themselves unable to do their research:
At a time, however, when political columnists, fundamentalist zealots, and untrained aficionados not only call themselves bioethicists but also are eligible to work on a presidential commission on the subject, many of those who should be calling themselves bioethicists repudiate that label instead. Though tempting, it would be a mistake to recoil in horror as bioethics becomes politicized. A good sign of the health of bioethics in fact is the healthy debate and political action elicited by bioethics scholarship. It would be bad news indeed for the future of debate about ethics in medicine and science if no one cared about the controversial conclusions reached by those who study and write in the area.It will be some time before anyone in bioethics takes on the role of "chief" of bioethics in a state - of that I am sure, based on my own conversations with others in various states - but the issues are still very much alive. In fact one of our primary areas of interest is the role of the states in bioethics debate. But for the states to really sponsor bioethics scholarship that is meaningful, there will have to be a carve-out for academic freedom. And that is asking an awful lot of state government, private corporations or even non-governmental organizations. Instead of Chiefs, perhaps there will be new badges: for Meter Maids.
I'll admit, there's a certain allure to the idea of a job that my child can understand. But while I hang on to my "chief of bioethics" badge, really it is an artifact of a time when bioethics had to be explained not only to children but also to everyone. Today most leaders in science and medicine know that bioethics, properly understood, isn't a police force, a task force, or the product of a president's commission. All appearances to the contrary, the explosion of interest in bioethics and even the groping to be called a bioethicist represents a recognition that the field of bioethics is coming of age.
Morally Serious Use of Hwang to Hammer Embryonic Stem Cell Research
In the Washington Post, Eric Cohen and Robert George hail the Santorum/Specter bill to "fund any creative proposal for advancing stem cell research without destroying nascent human life."Whether or not you agree with their conclusion, or that of Specter and Santorum (whose proposal Cohen and George do not seem to understand entirely), the argument Cohen and George make is frightfully effective exactly because it demonstrates that at moments like these - when stem cell funding is hotly debated on the hill - opponents of embryonic stem cell research will say almost anything. So they do. Cohen and George argue that all embryonic stem cell research is tied, fundamentally, to the moral horrors of Hwang.
This would be a plausible argument, were it not so obviously false. Everyone knows that Hwang would never have become a leader in the stem cell race had the federal government begun funding and regulating stem cell research early on. But that will not do. So Cohen and George turn the facts on their head, claiming instead that awful Hwangs will pop up any time embryonic stem cell research is attempted.
And, again, the argument they advance would fall away unnoticed (and indeed may) but for the Rove-esque language they use:
In the end, the lesson of the cloning scandal is not simply that specific research guidelines were violated; it is that human cloning, even for research, is so morally problematic that its practitioners will always be covering their tracks, especially as they try to meet the false expectations of miraculous progress that they have helped create.Right. It sounds so, um, plausible. Except for that part about how nuclear transfer is so evil that it turns everyone who does it into a liar.
It is hard to read the essay as more than silly trickery, aimed once again at using "Hurlbutism" (seriousness + pseudoscience) to fool the DC Post-reading crowd into believing that there is a cadre of stem cell scientists out there who believe that the next step - the next big priority - in stem cell research should be the search for alternatives to embryonic cell research, rather than continuing such research with the hope that it will one day no longer be necessary.
But there is a kernel of truth in the piece, if you can stand to read it all: we should reward scientific imagination, and nobody really wants to destroy an embryo. If we could just support imagination in earnest, rather than using it as yet another political tool in the futile stem cell battle in Washington...
The Top 5 Science Blogs ... And Everybody Else
When Declan Butler wrote us to tell us this week that we'd made the list of top science blogs in Nature we were, like, you know, thrilled. But uh the top five, which includes some real powerhouse blogs you ought to be reading, does decidedly not include us. However he wasn't entirely teasing because we were named among Nature's list of the 50 popular science blogs, a list they explain in some detail on one of the several pages linked from the Top 5 site. Anyway thanks to Nature and to Declan for the heads up.We Interrupt[ed] this Blog for OBX
Where has the blogging gone?
We figured it would be ok to slow down just a smidgeny bit for vacation, so McGees and Caplans vacated on one coast and Magnuses on the other one and that left Wolpe and Philpott in charge of holding down forts in respective cities, and that left, well, nobody to blog. 
We know lots of you subscribe to news categories from bioethics.net, or just read it, because we see the tags pop up everywhere, but dopey us for taking a vacation both from blogging and from work at the same time. As one reader noted, "finally we have time to read the blog and you stop blogging!" 
This next week won't be a huge one because all of us have to converge on Albany for the Bioethics & Politics conference, which is beyond capacity - at this point even media have to come bearing gifts if they want entry - but we're back. And having had a little bit too much sun in the Outer Banks, the Caplans and McGees are back at fighting weight and Magnus is no doubt at full steam too.
Growing, Growing, Gone...
Brian Alexander is one of my very favorite writers and after a book that really crossed over into the world of bioethics from journalism in a pathbreaking way, he went in a different direction for a while, and others, most recently Chris Mooney and other magazine essayists who make the top bloggers lists in Nature. Anyway he's back with a great essay - a story really - about the nutty attempts to prolong life and return youth with growth hormones:The Life Extension Institute, founded in 1994, is built on a simple theory. Dr. Neal Rouzier, who owns a similar clinic in the same building as Chein's, once explained it this way: "Losing hormones is nature's way of helping us die." If we top them off to the levels of 25-year-olds, we will not only stay buff but extend our life spans.
It is growth hormone, along with testosterone and estrogen, to which the field of modern anti-aging medicine owes its existence. Chein, an early adopter of GH, believes in its magic so strongly that he has staked his living, and possibly his freedom, on promoting it. Inside his clinic, in a drab stucco-and-wood professional building within walking distance of the Palm Springs airport, hang a few photographs that explain why. Intended as visual testimonials, the images show an elderly couple posing like bodybuilders. She wears a bikini. He flexes on a podium, his butt cheeks proudly clenching a disturbingly bright blue thong. I wonder if it was fear of such displays that years ago led Palm Springs Mayor Sonny Bono to ban thong-wearing in public. But I get the message. No matter what my age, I can go back.
A week before my visit to the institute, I had received an e-mail relaying a glitch in my plan to talk with Chein. The California Medical Board had recently put him on five years' probation and, apparently wary of getting in deeper trouble, he would speak to me only if the following notice prefaced this article:
"This is not a paid advertisement. Everything expressed by Dr. Chein is strictly his personal opinion and is not meant to attract patients."
Federalism and Bioethics—the Case of Emergency Contraception
An article by Rebekah Gee in the July 6 issue of the New England Journal of Medicine describes another bioethical issue—in this case emergency contraception—where states are exercising more control over who gets access to these medications and under what conditions than the federal government. The Food and Drug Administration (FDA) has refused to grant over-the-counter status to the so-called “Plan B” emergency contraception. Some states, however, are taking action under their traditional powers to regulate the practice of medicine and pharmacy to make Plan B or other emergency contraceptives more available.Nine states, for example, allow specially trained pharmacists to dispense emergency contraceptives under established protocols, and others have passed or interpreted existing laws to require pharmacists to fill legally sanctioned prescriptions. Others allow pharmacists to refuse to fill a prescription, but require the pharmacy to make alternative arrangements to provide the drug to the patient in a timely fashion. To cite another example, Dr. Gee and two co-plaintiffs brought a successful complaint against Walmart, which initially refused to carry Plan B in its pharmacies, in front of the Massachusetts state pharmacy board. This success, together with a threat to repeat the challenge in other states, appears to have been a major factor in convincing Walmart to begin carrying the drug nationwide.
Conservatives and pro-life groups, some of whom consider Plan B an abortifacient, have been pressing states to enact so-called “refusal clauses” or “conscience clauses” which would allow pharmacists to refuse to dispense Plan B or any other drug that they find morally objectionable without any consequences. Several states have enacted different versions of these provisions, which vary widely in their scope and coverage.
This wide variety of state approaches to emergency contraception has almost certainly produced wide disparities in access to Plan B across the states. While one can applaud or decry this outcome, it’s obvious that anyone wishing to understand—or influence—this debate needs to know something about states.
- Jim Fossett
The Frozen Embryo Dilemma: Souls On Ice
This remarkable article in the current issue of Mother Jones is not only well written, it is quite simply an outstanding, thoughtful article on a subject that rarely elicits such high quality reporting.- Art Caplan
Nip & Tuck Cameroon Style
Women in Cameroon iron their and their daughters breasts - 25% of them do, in fact - to avoid rape. This traditional practice has evolved over years in response to the equal (25%) rate of rape of women in Cameroon. More than 5,000 women, or roughly the number that receive breast augmentation in a good week in Los Angeles, receive the procedure, which sounds just horrific, involving "the use of hard or heated objects or other substances to try to stunt breast growth in girls ... [it] has many side-effects, including severe pain and abscesses, infections, breast cancer, and even the complete disappearance of one or both breasts."At least one anthropologist classes the practice alongside genital mutilation:
"Breast ironing is an age-old practice in Cameroon, as well as in many other countries in West and Central Africa, including Chad, Togo, Benin, Guinea-Conakry, just to name a few," said Flavien Ndonko, an anthropologist and local representative of German development agency GTZ, which sponsored the survey.
"If society has been silent about it up to now it is because, like other harmful practices done to women such as female genital mutilation, it was thought to be good for the girl," said Ndonko.
"Even the victims themselves thought it was good for them."