blog.bioethics.net

Ronald Cranford Passes Away

Ronald Cranford died last night in a hospice near Minneapolis. He was a good man and a good sport. We are all in his debt for his work in fighting to improve dying in america. Ron got in the trenches and helped people. We should learn from his example. - Arthur Caplan

Ethics & Pediatrics Special Issue

I'm forever finding jewels that Rosamond Rhodes strings together in her various projects, from the APA philosophy of medicine newsletter to more complex collections like this special issue of the Mount Sinai Journal of Medicine on ethics in pediatrics, which contains at least four (that's as far as I've gotten) of the best articles on ethical issues in pediatrics I've read in years.

Bill Frist is Backed All the Way Up Against the Wall

Jim Fossett pointed me to this Rick Weiss piece that makes it clear that Bill Frist has never been under more pressure than he is right now. Stem cells will be the only key test of where his mind and guts are, and his opponents could not have picked a better issue to put him in a box. Here's one of the best transplant physicians of his time asked to push the U.S. government as a whole forward toward the future of transplantation - cell transplantation - without ruining his relationship with the conservatives he believes might support him in a presidential run.

Kentucky Fried Medicaid: Punish the Patient (Oh and West Virginia Too!)

West Virginia and Kentucky have decided that families must sign contracts promising to show up for doctor's appointments and not to abuse the emergency room by showing up when they don't really have an emergency. Don't want to sign? You'll get less benefits. It's all part of the Republican's version of state innovation in Medicaid: don't cut people from insurance, give them choices!
[thanks PFS]

Living Forever as Leon Kass

Time again for the biannual screed by Leon Kass that anything humans do to lengthen their lives is at best a Faustian bargian; soon we'll let our pursuit of long life make us Dorian Gray. Doubtless you've read one of these pieces before, even if by accident, but as usual this one leads the reader to conclude that indeed, Leon Kass is right that he would not enjoy living forever, or that he might be less tolerable human if he were to live an artificially long life. But as always, Kass begs all the important questions about why being human is challenged by technologies that would let one be human longer. As Dan Callahan puts it,

"His view is that the fact that we're going to die makes us think more seriously about our life," Callahan said. "I don't know if that's necessarily true. I'm 75 now, and that certainly hasn't been my experience."

Callahan also questions the idea that our humanity is somehow tied to our sense of finitude.

"I don't think one can make our humanity dependent on the length of our life," Callahan told LiveScience. "Even if we live to be 500, we'll still be human beings."

A Book that Actually Helps in Making Decisions with the Mentally Disabled

New England Journal really likes Making Medical Decisions for the Profoundly Mentally Disabled, a book by Norman Cantor that we published in our book series:

When was the last time you opened a book and realized that what you were reading could actually help you to improve the lives of persons to whom you owe special care? Norman Cantor, a professor of law at Rutgers University, has written such a book.

Surrogate decision making for profoundly mentally disabled persons is central to the conceptual organization of this book. Cantor precisely addresses the concerns of people - family caregivers, guardians, health care professionals, lawyers, and bioethicists - who must make carefully considered choices about medical care and other substantive matters that can affect the most personal and intimate interests of persons who are profoundly mentally disabled. The population of concern in this book is specified as those "people whose cognitive functioning places them in the bottom of the ranges applicable to the mentally retarded." How best to make medical decisions for persons who are profoundly mentally disabled has long been perceived as something of an intractable problem. In part, this problem has been intensified because in the United States today, respect for a patient's autonomy has become the paramount value; we live in a culture where we give the highest priority to personal choice. Yet Cantor has developed a framework - a road map - that, in effect, serves to liberate even those who are so mentally impaired that they may not be able to make any medical decisions for themselves. Cantor's carefully crafted framework is based on critically reasoned moral arguments, examination of established policies and procedures, and a discerning appraisal of U.S. constitutional law.

Cantor does not shy away from examining sensitive issues relevant to sterilization, abortion, organ and tissue donation, and participation in research protocols that will not benefit the research subject. He recounts the historical context of these issues and reexamines and clarifies their contemporary meaning for the purposes of improving the lives of profoundly mentally disabled persons. This book is both sensible and compassionate.
A few months ago, I heard the American philosopher Martha Nussbaum on National Public Radio responding to the question "What is ethics?" with the following words: "Ethics is about what matters, and how we should behave." In this book, Cantor has elucidated what matters and has developed a carefully reasoned methodology that serves to guide us as to how we should behave.

More about our Basic Bioethics book series at The MIT Press available here.

Can Ambien Wake Up PVS Patients?

The Guardian gives credence to a case report concerning three patients purportedly diagnosed in PVS for more than three years who were "aroused transiently every morning after zolpidem," a sleeping pill. That would be Ambien.

The report, by Clauss and Nel, of Royal Surrey County Hospital and of Family Practice of Pollack Park South Africa, was published in this month's issue of Neurorehabilitation.

There are 26 million annual prescriptions for Ambien, most of which are probably not to patients in a persistent vegetative state.

Recall that Ambien is oft reported to cause odd behavior like sleepcooking, and, as summarized on this page of the ever-helpful Yourlawyer.com, sleepdriving. The hypothesis that this set of side effects, which according to Aventis spokesmen occur in less than 1 in 1,000 cases - might be really really common in treating people who are basically dead strains credibility. But what a cool idea for a study. And imagine the informed consent process: give the med, wait until they wake up and (as the study reports) throw a baseball, then consent them to another day's dose.

At best this is the weirdest anecdotal report in the history of neurology - even for a journal that publishes case studies, and one wonders why on earth a larger group of subjects would not be studied before moving to this level of publication (the plural of anecdote is data?) about the most controversial area of end of life care on Earth.

But really the question is what this little report will do to the wide world of Schiavo.

Paul Root Wolpe comments on the most likely response from the right wing: "You see? They really are alive in there, their personalities are just trapped, and if we had given this to Terri she would be talking with us today. Killing them is murder."

So it really matters what is up with this study. Who are the authors? Clauss, a neuro has published a number of case reports about the effect of Ambien on various conditions, e.g., this letter in New England Journal in 2004 on its effect on Spinocerebellar Ataxia. He and Nel co-authored "Effects of zolpidem on brain injury and diaschisis as detected by 99mTc HMPAO brain SPECT in humans"" last year in a low-impact German journal. In both 2000 and separately in 2001 they claimed that Ambien aroused patients from a semi-comatose state, in a letter to the editor and in a case report, in the South African Journal of Medicine. Claus is a "Consultant Nuclear Medicine Physician" at Surrey, not exactly working in neuropharmacology, but has been active in publishing lots of these little case studies about a wide variety of uses of Ambien. Yet the Guardian writes:

Ralf Clauss of the nuclear medicine department of the Royal Surrey County hospital, one of the authors, said that clinical trials were now needed. He said the drug could have uses in all kinds of brain damage, including Parkinson's disease and Alzheimer's.

So is this the biggest story in the long history of debate about persistent vegetative state, plural anecdotal evidence of something extraordinary, or something else. We're digging.

Athletic Overseers Are Skating on Thin Ice with Tent Objection

Art writes in the San Jose Mercury News:

Should the bureaucrats who set the rules for the use of performance-enhancing drugs in sports extend their critical eye to where athletes are allowed to sleep? This past weekend in Montreal, the bureaucrats, otherwise known as the World Anti-Doping Association, indicated that they are going to try to do exactly that. Bad idea.

WADA has done a good job in setting the rules and overseeing compliance concerning what drugs athletes can and cannot take. They are the drug police for all 28 summer and seven winter Olympic sports federations. Their efforts have led to much safer athletic competitions as the steroids and the growth hormone users have been bounced out of competition. WADA's reach is extending into professional sports as well, with WADA drug prohibitions likely to be imposed on all athletes in the upcoming soccer World Cup. So why is an organization skilled at finding illegal drugs trying to get into the bedrooms of athletes?

When it comes to sports, altitude matters. Many athletes in amateur endurance sports such as skiing, running and cycling use altitude tents. These tents simulate thin mountain air. By sleeping in them, athletes who live at sea-level can get the benefits enjoyed by those who live in mountainous areas. Mountain air has less oxygen, so the body makes more red blood cells to compensate. Those extra red blood cells can provide a slight boost if you are running a marathon or skiing cross-country for 15 miles. That is one of the reasons the U.S. Olympic training facility is located in the Rocky Mountains at Colorado Springs, Colo.

So why is WADA worried about tents? There seems to be one main reason -- sleeping in a tent is a passive activity producing benefits that athletes do not ``earn'' or ``merit.'' The idea that athletes ought to train to gain improvements in performance, not just lie snoozing in an artificial environment while their bodies make more red blood cells, is at the core of WADA's concern. WADA is worrying about tents not for reasons of safety or even fairness but on ethical grounds -- athletes should strive, not snooze, to succeed.

[Read the Rest at the San Jose Mercury News]

Caplan & McGee: HIV Testing Must Be the Routine

In today's Times-Union we argue that the CDC guidelines recommending that physicians offer HIV testing to all patients does not go far enough:

Centers for Disease Control and Prevention in Atlanta has let it be known that it is going to change its guidelines regarding testing Americans for HIV. It is going to recommend that doctors offer HIV testing to all of their patients as part of routine medical care. The change is long overdue. In fact, it does not go far enough.

The change toward routine testing for HIV -- the human immunodeficiency virus that causes AIDS -- is raising some ethical eyebrows. Some are worried that the government will know exactly who is HIV positive. This fear is understandable, given the current administration's obsession with snooping on all of us without warrants and its well-known antipathy toward homosexuals, as evidenced by its use of anti-gay rhetoric as a wedge issue in the 2004 presidential campaign against John Kerry.

Others fret that busy doctors will harass poor patients into consenting to testing. As Catherine Christeller of the Chicago Women's AIDS Project told The Wall Street Journal, "Women -- particularly minority women -- have a concern about abuses." What starts as an offer might quickly become an expectation.

And still others worry that when you have routine testing offered, it may not be long before your boss knows the results. At companies that run their own health clinics, the promise of privacy is not especially credible.

Testing for HIV has provoked worries like these for more than two decades. That is why there has been no required or routine testing for HIV except in a few states, such as New York, which test newborn babies.

HIV testing has certainly been encouraged for people in high risk groups -- gay men, those who utilize intravenous drugs and heterosexuals who have multiple sexual partners or sex with people who do such as prostitutes -- but encouragement is all there has been.

In some states, including New York, a special informed consent form must be used before testing for HIV. One consent to test was not deemed enough. And special counseling has always been recommended for all HIV testing.

So why change the policy? Because things are not at all the same when it comes to AIDS and HIV.

There has been a rapid increase in the occurrence of HIV in younger people who may not be as willing to practice safe sex or for whom those messages sound unnecessary. HIV is also occurring at greater rates in women who do not know about their husbands' various activities -- visiting prostitutes, engaging in gay sex or using intravenous drugs.

These women don't think they are in a high risk group and thus don't get tested.

There are now drugs that really work against HIV, and the sooner they are used the better. Twenty years ago, a diagnosis of HIV meant almost certain death. Today, a diagnosis of HIV is hardly good news, but there is a very good chance that people who are infected can live many years with good medical care.

And we have far more legal protections than we had at the start of the AIDS epidemic. You are not likely to get fired or told you cannot rent an apartment because you are HIV positive. The dire social and economic consequences that once awaited anyone unfortunate enough to have HIV have greatly abated.

What we need is aggressive testing. People who don't know they are at risk need to get tested. People who might benefit from the latest drugs need to get diagnosed. People who might infect others need to know that they could do so and do something about it.

Having doctors routinely offer HIV testing to all patients is a nice first step. Just by taking it, some of the last vestiges of stigma will evaporate from a diagnosis of HIV. But we ought be moving toward requiring HIV testing before surgery, admission to college or giving birth.

It is unlikely that people would be scared away from getting health care by such a requirement, and there is every chance that a few more lives might well be saved as a result.

Old public health policies die hard. Our policy about HIV testing is getting very old and out of date. We ought to let it die.

[All "On Bioethics" columns are archived here]

Psychologists' and Psychiatrists' Groups Take Broad Stand Against Participation in Torture

Speaking against torture, Dr. Gerald P. Koocher, sitting President of the American Psychological Association makes a long statement concerning abuses of medicine and psychology that might occur at the hands of mental health professionals in this lengthy letter accompanying the reports and other official statements on the matter of this past week. Summary: torture is awful, psychologists who participate are unethical, and, oh yeah, it probably didn't happen:

A number of opportunistic commentators masquerading as scholars have continued to report on alleged abuses by mental health professionals. However, when solicited in person to provide APA with names and circumstances in support of such claims, no data have been forthcoming from these same critics and no APA members have been linked to unprofessional behaviors. The traditional journalistic dictum of reporting who, what, where and when seems notably absent.

Read the full APA report here.

"Ok, Ok, So Hwang is Guilty.
But Please Don't Let American Jews Take Our Patents."

Laurie Zoloth sent us a stunner. With thousands of women suing because they fell ill from donating eggs to Hwang, Hwang under indictment and easily the best bet for a cell in Seoul, and the entire government of South Korea still reeling from the implications of the fact that a government official was paid off as an ethicist for the Hwang team, and clear evidence now that government officials bribed Hwang staffers to remain silent, and published data suggesting that fewer than 20% of South Korean scientists have heard of the Helsinki accord on human subjects research, you'd thing - really - this would not be the moment for supporters of Hwang to launch a new volley of attacks against collaborators. But you'd be wrong.

International Korea (ohmy News) Pete Shanks writes that The Hwang Saga Continues - OhmyNews Internationalleading Hwang supporters have done just that:

The other key point for Hwang's fans is their demand to "protect the patents," which they generally aim at Gerald Schatten, the University of Pittsburgh scientist who collaborated closely with Hwang. Schatten is said to be stealing the cloning technology developed in Hwang's lab; some bystanders hinted at a Jewish-American conspiracy.

[Update: see Shanks take on our mention of the role of anti-semitism in the matter in the comments to this post; he doesn't see it as a prevailing theme]

Make Your Own Damn Tamiflu

Sean points you to the solution for your fears of imminent demise at the hands of Chicken flu: "how to make Tamiflu."

Urgent Safety Review of Strattera

Some of your friends may start to seem more distracted soon. One after another ADHD medication has been subjected to new scrutiny concerning possible major side effects, and now Strattera, the drug of choice for those attempting to avoid, e.g., the amphetamine-like effects of other ADD meds, or their effect on growth in children, is under fire in Sweden.

25% of the UMDNJ Dental School Admits to Cheating

Students faked procedures, others aided and abetted that process, and now as many as 20 are in jeopardy of expulsion. On the other hand, the guilty ones can always ask the Dean to compare their misdeeds with those of more than a handful who presided over the near demise of UMDNJ's medical school in Newark this year...

Search Me Not

In this month's The Scientist I take up the question of developing technologies to allow "users" to search their brains. It's a response to Jack Woodall's article Google Your Brain, which seems like a bad idea to me, just on philosophical grounds:

... remembering is everything in the New World. Everything you have ever written can be stored: every E-mail, grant, paper, Power Point presentation, syllabus, recommendation letter, list of plans, and perhaps even your bad poetry and divorce decree. And if it can be stored, it can be accessed, filtered, and searched.

John Dewey, the philosopher most responsible for the development of the social sciences, wrote a large amount - by one estimation more than 13,000 pages of manuscript and perhaps a gigabyte of searchable correspondence. Historians of science in 20 years will find that even 'B-list' scholars of 2006 produce ten times that volume of information in the course of a decade, not including the vault of other people's data we store in case we need it.

My most disorganized friends, or at least the smart ones, are steadily working their way toward scanning all the paper in their offices onto hard drives, turning piles of nomenclature and unfinished projects into a different kind of pile. Desks get cleaned, computers get filled. But the clutter is still there, it's just hidden more effectively. Those who scan their worlds without clearing out the junk and learning to sort information just make their messes more intimate. I don't need to remember a lot of what is stored around my office or in the corners of my mind.

There is something to be said for forgetting. Nietzsche argued that those who cannot forget are quickly driven to madness. The ultimate stoic, Epictetus, implored Roman soldiers to kiss everyone in their lives goodbye every time they walked out the door, pointing to the importance of focusing on the present. Beta-blockers such as Inderal can literally disconnect memories from their emotional impact; predictably, many victims of trauma are eager to kill the pain that data stored in the brain can cause.

[Read the rest of the essay here]

Great Grandmother Tattoos "Do Not Resuscitate" on her Chest

She was going to tatoo "really, must you bang on my chest?" or "Warning, I sue paramedics!" but there were too many letters. Now if only we can persuade the demographic who really need living wills to do something like this. Instead of that little bullseye that has become so popular in the small of the back, how about a little circular advance directive? Guys, instead of that barbed wire around your arms, how about a few words concerning feeding tubes. In fact just weave a little tube around that arm. That's the ticket.
Thanks Jon Mandle.

Da Vinci Code is Colorless

Religious conservatives aren't the only ones ticked off by the Da Vinci Code movie - albinos are as well:

Critics cite a long list of albinos cast as heavies by Hollywood: The dreadlocked twins in "The Matrix Reloaded," a powder-haired hit man in the Chevy Chase-Goldie Hawn crime romp "Foul Play," the pasty zombies in "The Omega Man," a sadistic killer in "Cold Mountain," even the wicked executioner in the fairy-tale comedy "The Princess Bride."

Michael McGowan, an albino who heads the National Organization for Albinism and Hypopigmentation, said "The Da Vinci Code" will be the 68th movie since 1960 to feature an evil albino. "Silas is just the latest in a long string," McGowan said. "The problem is there has been no balance. There are no realistic, sympathetic or heroic characters with albinism that you can find in movies or popular culture."

Gandhi Finally Gets Some Notice: Does Anybody Out There Wonder When India Will Rise Up Against Clinical Trials Abuse?

The The Sunday Times (London) picked up not only on the blog coverage here of the contrast between a few guys getting injured in a British voluntary drug trial and the horror that is unfolding in clinical research in India. This is our first citation in the Times London and they are the only paper to notice the column in The Scientist on Gandhi. Here's their coverage:

If you ever thought that taking part in drug trials seemed an easy route to modest riches, the preliminary experiments on human beings involving compound TGN1412 should have disabused you of that notion. This was the drug, made by TeGenero and trialed by the drug-testing firm Paraxel, that left six healthy men seriously ill, two of them close to death.

Although it was a public relations disaster for both companies, public enthusiasm for trials has long been dwindling, and not just among the healthy, who are first in the experimental firing line (before being used to make sick people better, scientists must ensure that potential therapies do not make healthy people sick). Even the ill are reluctant to entrust what little health they have to pharmaceutical companies. One study found that 71 per cent of cancer patients deemed eligible for clinical trials decline the opportunity.

That contrasts with a growing preference by the drug firms for larger trials, which tend to show up rare side-effects earlier. Bigger trials are seen as a way of preventing another Vioxx — an arthritis drug that was found, after licensing, to cause heart attacks and stroke. Forbes.com reports that compensating affected patients could cost the makers, Merck, $38 billion (£24.4 billion).

And so Big Pharma has begun outsourcing its trials to India, a move that, according to bioethicists, could create a “new imperialism”. India has huge numbers of sick people glad to test drugs in return for minimal, if any, recompense. The patients rarely mind — to them, experimental healthcare is better than none at all — and they rarely complain. India also has a homegrown supply of highly educated, English-speaking doctors, who cost a fraction of their Western counterparts.

AstraZeneca has opened a drug-testing facility in Bangalore; Pfizer has done the same in Bombay. At the moment one in a hundred global clinical trials is conducted in India, but Oxygen Healthcare, a British consultancy, estimates that in five years’ time that figure will have risen to one in ten.

This makes financial sense but others are clearly worried that poor, illiterate patients are being exploited. There is certainly doubt over whether they are giving informed consent. The Indian Journal of Medical Ethics reports that patients are often unable to distinguish between trials that might benefit them and those that won’t. Another study pointed out that, of the country’s 14,000 general hospitals, fewer than 200 are equipped to carry out drug trials adequately.

Indian patients are often used to test medicines that, once marketed, they will not be able to afford.

The editors of the American Journal of Bioethics say in their blog that “pharma trials in India should be the focus of a huge amount of attention in the world of research ethics”. Even more forthright was a recent opinion piece in The Scientist. “If Gandhi were alive today, he would lead protesters to the doors of a clinical research trials facility, where the oppression of the Indian poor dwarfs that of the 1930s.” This is a reference to Gandhi’s march against the British salt tax, which made it illegal to obtain salt from anyone other than the British Government, even though it could be collected along the coast. Gandhi and his supporters marched 240 miles from western India to coastal Gujarat, gathering the mineral on the way. The march ended in a bloody confrontation at a salt factory.

The Indian Government now stands accused of colluding in this new oppression. In 2004 it stipulated that drugs tested in India should first be proved safe in their country of origin; in 2005 the law was revoked.

This issue deserves close inspection but we should beware a knee-jerk cry of “exploitation”. The most rational thing to do is to look at the equation of exploitation: does the drug company benefit unfairly from its interaction with the patient? If so, then perhaps The Scientist is justified in asking: “How long before the people of the nation of Gandhi rise up to reject a new imperialism?”

The States are the Future

The AMBI view that bioethics had better pay attention to the states in a serious way is gaining momentum, as Jim Fossett yet again finds in an Op Ed in Washington Post about the degree to which liberals and conservatives are embracing federalism "for the right ideas."

Warmed Over Excuses for a Slow Down in Blogdom

The blogs have slowed a bit over the past month. There's a reason. And it isn't that Glenn got a life, or that David, Paul, Sean, Art or the guest submissions haven't had anything to rant about. In fact we have (collectively) at least 1,900 messages to review about how hellish medicine has become, plenty to whine about, and everyone knows that the apocalypse is coming in terms of wacko reproductive cases (the oldest mom ever has given birth and she is a child psychologist - I love that - why not, right? perhaps the first person to clone will be a paleontologist?) No the problem is something else. My laptop melted. Three times. Why? Because I am an early adopter. I elected to upgrade to the white hot new MacBook Pro, the Apple that runs on Intel (curses!) and can run Windows XP as well as Mac OSX. It is great. Except that it basically melted. And the replacement too. And the third, while it worked fine until I installed data analysis software in XP, ate the mac software, requiring me to ship my computer to an incredibly nice guy at Alsoft in Houston, where they are working tirelessly to try to keep up with Apple so that there can be a single program to repair disk damage to these awesome machines.

Anyway I have to edit all the stuff that passes through so that means a big slowdown in bloggerland. Thanks for coming by anyway and I cannot explain why our traffic is so high now but thanks for telling friends to waste time too.

He fixed my computer for free and fedexed it back to me, because he knows that without blog entries on bioethics you'd have to read something else, whatever that is. And heaven forbid. Not during finals weeks, when you are writing or grading those awful papers. No, it must be fixed. So he did. And so we're back, or at least as much as we can be during the June and July grant cycles.

So props to Alsoft, to Marc Moorash there, and to Apple for creating a computer that, once it is fixed, is the fastest laptop in the world, whether running XP or Mac, even if it in fact has a black box warning about burning off your skin.

If all this talk about props, Macs, warriors, and Houston has you grumpy, please don't write silly comments about how you hate Macs (because we'd hate to respond and give your PC a virus. No, we beg you, just bear with us. We promise to attempt at least for a few minutes to follow the maxim of the last episode of The West Wing: do not antagonize the customer.

The First Designer Baby? Love that British Media!

The Times is spinning the first use of cancer genetic testing to screen IVF embryos in Britain as the quest for (plug coming in 3 2 1...) The Perfect Baby. Hmm. Not quite. But is it appropriate? I don't have time to link to the billion places where you can explore that question, but suffice it to say that this is among the most debated questions in reproductive ethics.

A Bitter Pill for Journal Editors

John Travis at AAAS pointed out to me Monday's amazing story in Wall Street Journal [humungously expensive registration required to even think about reading this article, think "if you have to ask, you can't afford the download] about New England Journal of Medicine and the Vioxx paper. The ethics of editors under corporate sway (or pressure, anyway) is the next frontier not just for books and articles by Marcia and other but for business people and lawyers. His favorite and the most galling quote from the piece is from Dr. Drazen:

Dr. Drazen says journal editors are "just the middleman in picking what goes out there" and "when there are problems the onus lies with" authors to sound the alert. "If you ask me, it is none of our concern about whether [Vioxx] is a cardiovascular risk in the patients that are on trial," he says. The concern was making sure what was published was correct, he says, and "people could have set the record straight."

Uh, no.

New York Daily News on "Albany 101"

When you live here, this kind of "no, you will not pass important laws, not until you serve our bidding on some numskull rider" story requires no real comment, and it so confused me (the facts of the story, not the story), that I couldn't even read it straight before I blogged it.

ALBANY - In a classic case of Albany gridlock, lawmakers fixated on abortion and gay rights are blocking a bill that would rescue thousands of elderly and disabled New Yorkers from legal limbo. Legislation first proposed 13 years ago would give family members and close friends the right to make medical decisions for patients who are too sick to speak for themselves. Today, in many cases, family members have no such control, leaving the fate of their loved ones in the hands of strangers with medical degrees.

Fixing this glitch should be a no-brainer. Forty-eight other states managed to do it with little fuss.

But Albany is where no-brainers go to die, because lawmakers here are all too willing to put their narrow agendas ahead of the greater good.

In this case, a measure that's vitally important to patients and families across the state is being held hostage by pro-choice and gay rights purists in the Assembly.

The bill says nothing about abortion or gay relationships. But it includes a line saying family members of an incapacitated pregnant woman should, in thinking about her best interests, "consider the impact of treatment decisions on the fetus." And - unpardonable sin No. 2 - it fails to specify that same-sex partners should have the same rights as husbands and wives.

Abortion-rights groups themselves aren't upset. They studied the innocuous reference to fetuses and decided it was no threat. But critics in the Assembly's Democratic majority act as if it's tantamount to overturning Roe vs. Wade.

"I'm not comfortable voting for it," Assemblywoman Deborah Glick said of the fetus reference, saying she's worried about how it would be interpreted by the courts.

The bill doesn't mention spouses of any kind, gay or straight. Instead, it says decision-making rights should go to the "close friend or relative" who is most familiar with the patient's wishes. The bill's sponsor, Assemblyman Richard Gottfried of Manhattan, said the effect is to put domestic partners on the same plane as husbands and wives. But Assemblyman Daniel O'Donnell, who is gay and suing to marry his partner, begs to differ.

"It's not a small issue to me," O'Donnell said. "To garner my support [the bill] has to remove the language about the fetus and treat gay and lesbian people with equality and fairness."

This nit-picking would be comical if it didn't have such tragic consequences. Every day, at hospitals and nursing homes across the state, doctors and family members struggle with gaps in the current law. Doctors often find a way to consult a patient's loved ones, but they're on shaky legal ground when they do - especially when it comes to pulling the plug to end someone's suffering. And, when Terry Schiavo-like disputes arise, facilities can shut family members out entirely and do what they think is best.

Since 1993, supporters of the bill have been trying to craft the perfect compromise without success. They inserted the fetus clause last year to answer objections from the Catholic Church, which had blocked action in the Senate.

The Catholics did the right thing, accepting a compromise for the greater good. Now, with a month remaining in the legislative session, it's high time for Glick, O'Donnell and their like-minded colleagues to quit the petty, paralyzing politics and let the bill go through.

High Noon on Stem Cells for Bill Frist

The patient advocacy groups that have played such a key role in fighting for embryonic stem cell research are now calling on the Senate to vote up or down on the issue. This is a vote Bill Frist has been dreading and avoiding fo some time. Despite a lot of political contortions such as the recent Santorum-Specter alternative bill looks like this poker game is drawing to a close:

WASHINGTON, D.C.; May 16, 2006 - The Coalition for the Advancement of Medical Research (CAMR) announced today poll results revealing that nearly three-quarters of Americans support embryonic stem cell research and want the Senate to vote on federal funding for stem cell research.

When asked if they support embryonic stem cell research, seventy-two (72)
percent of respondents favor it, up from sixty-eight (68) percent in 2005.
Only twenty-four (24) percent opposed embryonic stem cell research, down
from twenty-eight (28) percent a year ago.

When asked given what they know about stem cell research, should the Senate
vote on H.R. 810, seventy (70) percent of those surveyed said "yes," while
only eighteen (18) percent said "no" and twelve (12) percent were unsure.

At an event on Capitol Hill today, CAMR representatives, as well as Senator
Dianne Feinstein (D-CA), Senator Tom Harkin (D-IA), Senator Orrin Hatch
(R-UT), Senator Edward Kennedy (D-MA), Senator Gordon Smith (R-OR) and
Senator Arlen Specter (R-PA) called on Senate Majority Leader Bill Frist
(R-TN) to schedule a vote on The Stem Cell Research Enhancement Act (H.R.
810).

"America is ready for the Senate to vote 'yea' on H.R. 810 and for the
federal funding of embryonic stem cell research," said Sean Tipton,
president of CAMR. "Just as it does with other kinds of promising
technological and medical research, the federal government must fund human
embryonic stem cell research. Senate Majority Leader Frist needs to
understand that if this bill does not get scheduled for a vote, we not only
risk the lives and well-being of millions of Americans and their families,
we also risk losing America's leadership position in the fields of science
and medicine," added Tipton.

On May 24, 2005, the U.S. House of Representatives passed H.R. 810 -- The
Stem Cell Research Enhancement Act -- with strong, bipartisan support. If
this bill passes the Senate, this bill will override President Bush's August
9, 2001 executive order limiting federal funding of embryonic stem cell
research. Thousands of scientists, including 80 Nobel laureates, recognize
that current federal restrictions on stem cell research seriously hamper
research in the United States.

"We believe that this legislation will pass the Senate, just as it did in
the House, with strong bipartisan support," added Tipton. "We call on
Senator Frist to schedule a vote on this important legislation before the
one-year anniversary of hours passage next week. If you are one of the
millions waiting for a cure or new treatment, a year is too long to wait for
action. We need a vote and we need it now."

The poll was conducted by the Opinion Research Corporation with a nationwide
random sample of 1,000 people the week of May 5, 2006, and carries a margin
of error of +/- three (3) percent. More information about the poll and its
results can be found at www.camradvocacy.org.

- Art Caplan

Ethical Issues Related to Vaccination of Children | Treuman Katz Center for Pediatric Bioethics

The brand new Treuman Katz Center for Pediatric Bioethics, soon to be directed by Benjamin Wilfond, who is certain to rise to that occasion and create an entirely new kind of research and service institution, is holding a great conference on vaccines and kids, with a broad focus on all of the questions related to the ethics of the use and distribution and scarcity and side effects of vaccines. This is the program and the cost isn't awful, though good luck with cheap airfare to Seattle in July.

All Those Surprised, Please Raise Your Hands

The Hwang group, despite reports to the contrary in AJOB by the team working directly with Hwang and its group to design a comprehensive egg procurement program, not only appears not to have followed the ethics protocol it supported and embraced but also now to have used many many more eggs - illegally - than it reported, procuring htem from all sorts of places it had not documented carefully.

The program is so massive and so collusive that it strains credibility that anyone in the Hwang group could possibly have been unaware of the activities. Investigations of that are ongoing at many levels.

Korea Times notes:

Prosecutors said last Friday that Hwang received 2,236 ova extracted from 136 donors between November 2002 and December 2005 through four medical institutions collaborating with Hwang's research team.

The institutions that cooperated with Hwang include Hanyang University Medical Center, fertility clinic MizMedi Hospital, Jeil General Hospital and Hanna Women's Clinic.

In January, a fact-finding committee at Seoul National University (SNU) said Hwang's team amassed up to 2,061 eggs from 129 donors, far more than the 427 eggs Hwang's team had claimed to have used.

A month later, the National Bioethics Committee revealed Hwang gathered 2,221 eggs from 119 donors for his stem cell research from 2002 until last December, 160 more than reported by the SNU investigative panel.

The committee also concluded his research team ran into serious ethical problems with its ova procurement.

Last Friday, the prosecution indicted without detention Hwang on charges of fraud, embezzlement and breaches of the bioethics law, ending a five-month probe into the research fabrication scandal.

Prosecutors said he embezzled 2.8 billion won ($3 million) out of some 40 billion won in research funds for personal purposes and the illegal purchase of ova used in his experiments.

They also accused him of illegally paying some 38 million won to 25 women who provided ova for his research through Hanna Women's Clinic in the first eight months of 2005.

Meanwhile, Hanyang University Medical Center was found to have provided ova from its patients to Hwang's team without the consent of donors, violating the Korean bioethics law.

The center, which sent its researchers to collaborate on the experiments, provided a total of 121 human eggs to Hwang's team between April and November of last year.

Investigators discovered that 113 ova extracted from 72 patients between 2002 and 2003 were sent to Hwang's team without the consent of the donors.

Last month, two women who donated their eggs to Hwang's laboratory filed a lawsuit against the state and two medical centers, claiming they had not been informed about potential risks posed by the egg retrieval processes.

In the suit filed with the Seoul Central District Court, the donors are seeking 32 million won medical compensation each from the government, the Hanyang Medical Center and MizMedi Hospital.

Wake Forest to Offer Masters in Bioethics

gWake Forest continues to gear up what should at some point become a major program in bioethics, most recently making today's announcement that Wake will be offering the only bioethics masters program in the state of North Carolina, a state with plenty of eligible students from graduate programs not only at Wake but the research triangle universities and from the huge biotech and pharma world in that state. And they have doughnuts. The good kind. The school is home to easily the world's most advanced tissue engineering program led by Anthony Atala, stolen from Harvard, whose Institute for Regenerative Medicine has already attached artificial organs to all sorts of folks.

Bernadine Healy on the Ask Me Campaign to Store Up Morning After Pills

Someone named Cindy at US News emailed me, for whatever reason, a link to this editorial by Bernadine Healy, in which she discusses

the ACOG campaign, called "Ask me," [which] effectively creates an over-the-counter option that subverts the FDA ruling. Doctors will offer information on the drug and prescriptions to women who, well, just ask. Patients can either keep the paper as Rx-in-waiting or have the prescription filled and ready in their medicine cabinets--which allows them to use the pills at their own discretion. Helping to spread the word are "Ask me" buttons, national ads, and posters for doctors' offices reminding women that "accidents happen" and "morning afters can be tough."

Her concern is that pharmacists who ridiculously believe that they can refuse to provide the morning-after pill on moral grounds and still be pharmacists won't provide the pill will put women in a precarious position:

Those pharmacies unwilling to dispense the morning-after pill should be mandated to post some version of the "accidents happen" poster, with the caveat "but some other pharmacy will have to help you if you want Plan B." And individual pharmacists who refuse to fill such prescriptions should wear buttons that say simply, "Don't ask."

Ok, but really, wouldn't it just be easier to make it clear that pharmacists ought not have the power to refuse to provide medications that are FDA approved and for which a physician has written a prescription?

A Genome Sequencer the Size of a Grapefruit

GenomeWeb Daily News announced today that:

The Gordon and Betty Moore Foundation made the award to the researcher, who will share a portion of it with the firm, to develop a portable device to identify samples of animals and plants in the field by sequencing short stretches of DNA, so-called DNA barcodes. But the instrument, which will be the size of a grapefruit and cost less then $25,000, might have wider applications, including those in biodefense and forensics, according to its inventors.

"A lot of funding is going into DNA sequencing but none of it seems likely to lead to a portable DNA barcode reader," said a spokesman for the Moore Foundation, which plans to announce the award in a few weeks on its website.

Anyone want to bet on how long it will be before a Treo, Blackberry or Palm can do DNA sequencing?

Hwang Woo-suk Indicted

Nothing new here in terms of the transition of the Korea scandal from scientific to criminal misconduct, but it does open the floodgates to a whole new kind of investigation of the dozens of people who worked in one way or another with Hwang. Everyone is covering the story.

The Not So Incredibly Conservative HFEA

Britain's regulatory authority has granted permission to physicians in IVF clinics to test embryos for cancer genes. The HFEA chairwoman said:

"This decision will be significant for the small number of females that suffer from these rare but very serious inherited cancers, such as breast cancer and ovarian cancer."

Whatever you think about cancer screening in embryos - and I've written that it seems problematic to me for a whole host of reasons, there is some irony in the fact that no matter what the British government decrees, the decision about who gets a test for ovarian or breast cancer susceptibility will be made by the company that owns all the patents on all of the breast cancer genes (see more of our rambling about that problem here), Myriad, who preside unabashedly over such choices from their Utah offices, and who have decreed in the past that they would not allow such testing. So now the High Ministry of Reproduction can appeal to the guys who own the genes.

American Catholic

mIt never ceases to amaze how few American Catholics, in polls, agree with the Catholic church's views on birth control and in vitro fertilization. You'd thing that it would be obvious that if you take all the Catholic oaths etc. and rush off to teach, qua Catholic, at a Catholic school in Milwaukee of all places, you might expect that there would be some concern if you deliberately engaged in what, for the Catholic Church, is a kind of systematic Russian roulette with babies. But no. Kelly Romenesko, who is alleging discrimination by Appleton Catholic Educational System, Inc./Xavier.

Her claim is pretty implausible - that "school officials knew for a month before the firing that she had undergone the procedure, terminating her only after she became pregnant." Yes,that would certainly be discriminatory. But you can't help but wonder why it matters, given that it is well within the Catholic church's authority to enforce rules of the church among its staff in its schools. If you don't agree with the church on the ethics of procreation, perhaps you don't really want to teach in a doctrinal school?

It's All in the Family

So DNA fingerprinting isn't especially effective at identifying criminals. There's that whole "no such thing as race" problem. And the "we don't really have a database of people of asian descent" thing. Oh yes and the problem of getting a good sample. Anybody who has ever seen CSI - every bit as educational as biology class - knows that forensic genetics is, um, still pretty medieval in terms of identifying subjects. It can rule them out. But plenty of folks have been falsely convicted because juries have ridiculously exaggerated faith in DNA based evidence. What to do?

Our pal Jed Gross at Yale points us to this brilliant solution:

Cops would solve more crimes if they expanded their use of the nation's DNA fingerprinting system to test close relatives of known criminals, according to a research report that raises novel and difficult civil liberties issues.

The proposed crime-control strategy, already in growing use in England, is based on two central facts: Close relatives of criminals are more likely than others to break the law, research has shown, and, because those individuals are related, their DNA "fingerprints" will be similar. That suggests that if police find a crime-scene specimen with a DNA pattern close to -- but not exactly the same as -- that of a known lawbreaker, a relative of that known criminal may be the culprit.

And the thing is, in America, lots and lots of people who commit crimes are related to others who also have done so:

In the United States, those odds are rather high: A 1999 Justice Department survey found that 46 percent of jail inmates had at least one sibling, parent or child who had been incarcerated at some point.

All states take DNA from all convicted felons, and many get specimens from a wide range of others.

Using conservative assumptions, Bieber and his colleagues calculated that U.S. law enforcement authorities could increase their "cold hit" rate (the percentage of DNA searches that result in perfect matches) by 40 percent if they were to check the DNA patterns of criminals' family members when searches generate near misses.

Cold-hit rates vary widely today. Assuming they average about 10 percent, Bieber said, a 40 percent increase would bump that rate up to 14 percent.

"This is proof of concept that existing methods of kin analysis could be used in forensic analyses with an expectation of success in a fair proportion of cases," said Bieber, who is to present the findings tomorrow at a meeting of the American Society of Law, Medicine & Ethics in Boston.

Surround Cell

They just can't seem to get the money flowing in California, where $3 billion, which has to seem like a bigger tab with every passing day, continues to essentially be held up by the lingering nuisance suits. So schools are dealing with the problem in different ways. Some are building buildings anyway, a few are actually getting money from the California Institute for Reproductive Medicine through some kind of arrangement I cannot figure out, but most are shaking trees to find ways to move ahead.

And what makes that so amusing to watch is the sort of folks with billions of dollars who live in the parts of California where stem cell research will be concentrated. Take, for example, Ray Dolby, the surround sound guy, who has just given UCSF $16 million to start a stem cell center.

Science Anxiety

Art Caplan writes in the Philadelphia Inquirer:

Many recent scientific advances in medicine and the life sciences involving genetic engineering leave many people concerned. Our new and increasing power to control heredity is based on a growing knowledge of our own genetic makeup as well as that of other living things. Scientists are also rapidly expanding their knowledge of how particular genes lead to the creation of different traits, characteristics and diseases.

The moral standoff that will quickly come to characterize the 21st century is becoming clear. It is not the teaching of intelligent design vs. evolution in American schools. Almost no one but biblical literalists takes the ID position with any seriousness as science. Nor will it be the heated squabble over embryonic stem-cell research. That scrum is actually over as well: Many nations around the world are doing this type of research, so the question is only where not whether.

The real battle - the battle that will come to occupy the moral center stage of American politics, morality, law, public policy, editorial pages, and water-cooler discussions - will be waged over where genetic engineering ought to take us and whether we are satisfied to leave it to scientists to guide us there.

Our present moment is seeing a host of scientific breakthroughs by which we are changing, modifying, inserting, altering or tweaking plant, animal and human genes.

Not everyone is thrilled.

Recently, a student from Temple University visited my office. We were talking about different courses and career options when he looked straight at me and said, "Aren't you worried about where science and medicine are taking us?" He did not mention any specific form of genetic engineering or a particular experiment, but he was clearly worried about all this genetic meddling.

He is hardly alone.

Polls in the United States, Brazil and other nations show that significant numbers of people, as many as 25 percent in some polls, are worried either about the speed of advances in science or the chance that scientists will lose control over their inventions.

Even those in the highest places of moral leadership are worried. His comments went unnoticed amid the Good Friday and Easter celebrations at the Vatican, but Pope Benedict XVI recently issued some stern warnings about genetic engineering.

The pope condemned efforts to "modify the very grammar of life as planned and willed by God... a risky and dangerous venture." He did not stop there. He also inveighed against "insane, risky and dangerous" biomedical meddling that attempts "to take God's place without being God."

In reflecting on the pope's pronouncements, I could not help thinking of an experiment, in the scientific pipeline right now, which has not gotten much media attention: creating life itself.

Scientific teams at universities here and overseas think they can create a living microbe. The idea is to assemble bits of DNA into an entirely new genetic message, build a crude sort of cell out of fat molecules and other ingredients, feed it the right chemicals and - voila! - a new, never-before-seen, living organism!

One of the scientists pursuing the creation of synthetic life is reported in a recent interview as saying: "For me, life is just like a machine - a machine with a computer program. There's no more to it than that. But not everyone shares this point of view."

I suspect Pope Benedict, my visitor from Temple, and many of those worried about where biology and genetics are headed are in that latter camp. Worse still, this scientist sounds like the kind of materialistic, morally tone-deaf egghead that provoked the papal Easter condemnation.

So is there reason for extreme concern? Should we be shutting the genetic revolution down in its tracks? My own view is that the pope's position - that meddling with God's genetic creations is morally wrong and even insane - while genuine and sincerely held, is not the guidance to follow. His fear and the fear of many others about where genetics is leading us is based on the notion - a very false notion - that scientists lack values and moral character.

There are plenty of reasons to worry about the misapplication and misuse of genetics. The greatest mass murder in the Western world in the 20th century was undertaken by Nazi Germany against Jews, gypsies, Slavs, gays, and those of "mixed race" in the name of genetics. But it was the government of Germany - supported by its people, including scientists - that created the genetically inspired, scientifically supervised mass murder of the Holocaust.

Still it is a grave, grave mistake to argue that we must put all forms of genetic engineering off limits. Too much good will be lost. Our only hope of combating some of the worst pests and plagues that beset us and will torment our grandchildren is through genetic manipulation and engineering. The genetic revolution you and I are witnessing is humankind's last, best hope since it offers the prospect of more and safer food; the repair and elimination of genetic maladies like Tay-Sachs, juvenile diabetes, sickle cell disease, and hemophilia; the conquest of TB, malaria, avian flu, SARS, HIV, and many other plagues. And it will allow us to rebuild broken, worn out, or injured body parts.

Any of these alone would be enough reason to pursue genetic research. Together, they all but obligate us to do it. They are an all but unanswerable reply to those who say "No" to genetic research and engineering. Our society would be foolish and cruel to forbid or ban genetic research given the needs of the sick, starving, impaired and those of future generations for solutions and treatments. Will we really turn away from those who literally are dying before our eyes, or who will die before our children's eyes, simply out of fear of scientists guiding public policy?

That said, many people of deeply held moral principles worry about the abuse of genetic science. So where is the assurance, the guarantee against the tiniest of chances that genetic science will go off the ethical rails?

I do not believe we have much to fear from the actions of any individual scientist. Few, contrary to the pope's concern, aspire to play God. Science has no tolerance for such fantasies.

Geneticists know how little they know individually and how hard it is to manipulate nature. Moreover, none of them, not even the best and brightest, is capable of transforming a discovery from the lab into the real world by himself or herself. That sort of power is reserved for the deity, governments or the market.

What the deity does is beyond our control. But what government or the market does or is allowed to do is very much a matter of politics, regulation and oversight. When theologians or members of the public point the finger of moral worry at scientists, they need to redirect it. It is governments and the marketplace that we need to shape and hold accountable for how genetic knowledge is or is not applied.

Still, there are some things scientists can and must do better. The scientific community, its leaders, and its brightest lights must make sure people know they are aware of popular concerns and doubts. Sometimes it seems scientists are trying to do shady stuff without caring what anybody thinks. It is easy to let the love of the laboratory blind one to the need to engage one's fellow citizens in the adventure and drama that is genetics. Few scientists do so. All ought to.

The traditional high standards of science - transparency, information-sharing, openness to falsification, strict adherence to the best methods, no tolerance of fraud and fabrication - must continue. They are not enough. Scientists also need to stay in touch with the rest of us: to strive to be good communicators, to be engaged citizens. In a nutshell, they need to show the world that they're human. Science is one of the most human of all our endeavors. Scientists need to remind all of us that this is so by eagerly participating in the democratic debate over where we're going and how we're getting there.

I realize many people believe that allowing the genetic revolution to proceed is risking our future at the hands of "atheist" science. This belief is the big driver of the current unease and the future culture war to come. Scientists are rarely openly religious. And many worry that those who are not God-fearing and avowedly guided by God's will cannot be permitted to use their power over heredity to take us places we should not go.

It is true that there are many materialist nonbelievers among the ranks of genetic researchers. But this is not "godless science" at all.

The scientists I know are full of reverence for life, for people, and for our future possibilities together. They are in awe of nature. They are humble in the presence of the simplest cell, bacteria, virus or bit of mold in a lab dish. There is a spirituality about pursuing science as deep and as sincere as any to be found in religion.

There are indeed important moral and ethical questions to be debated about the "humanness" of the genetic research being carried out in labs, behind closed corporate doors, and in distant lands whose cultures and traditions make us edgy.

That said, I do not know a single genetic scientist, not one, who thinks that moral, ethical and even public reflection about the morality of genetic engineering is silly, pointless or unnecessary. In the halls I am lucky enough to travel in universities, companies and research institutes, these subjects are debated and discussed as hotly and as with as much passion as they are at the Vatican; in your church, synagogue or mosque; or at your dinner table. Scientists do care, and they care deeply what their peers think and what you and I think.

What we need is what C.P. Snow once called for: a bridge between the two cultures. For him, the bridge was between the sciences and the humanities. Today we need a bridge between those who do science and those who do values. Scientists do "do values" - it is just that few outsiders get to see them do so. And many of us are fascinated by genetic science but quickly give up trying to follow it because there are so very few to teach us.

What we need today is a dialogue, a conversation, some old-fashioned jawing. We do not need demagoguery, fear-mongering or stereotyping. We certainly do not need bans and fiats and Do Not Pass Go restrictions.

What scientists need to do - and quickly - is come out of their laboratory lairs and be seen in public. You need to know about their aspirations, dreams, hopes, and values. You need to know they stand shoulder to shoulder with all of us in wanting a better world. They see a better future and a way to get there.

Genetic research in the hands of those who practice is not aimed at power, fame, ambition, or transforming oneself into a god. If it is about anything, it is about love: the love of life, the love of people, the drive to make a better life for the sick and those at risk of becoming so.

To ensure the future of this century, we must ensure sufficient education, dialogue, oversight, accountability and control over the industrialization, commercialization and financing of genetic science. In the hands of its practitioners, that science is very, very unlikely to take us anywhere we do not want to go. But ignorance, inattention or indifference to what governments, business and the military do with genetics could land us in places no one wanted to reach.

The process starts with education. It is up to each one of us to know enough about genetics to understand the possibilities, risks, opportunities and dangers. It is also up to each of us to insist that our educators make genetics a central part of the curriculum in our secondary schools and Sunday schools including the ethical issues genetics raise. Really. Starting now.

Hold your politicians accountable. Ask them to explain how funding for genetics is allocated and accounted for. Insist that they ensure that commercial interests do not succeed in keeping private genetic applications and products that might offend the moral sense of the community or, worse, our health and well-being.

The genetic genie is out of the bottle. There is not much anyone can do to put it back nor, once we understand its potential for good, ought we to do so. This genie will, however, do the bidding of those who control it. To enjoy the benefits genetics offers, it will be up to you and me and our children to build a politics, media, marketplace and educational system strong enough to show the genie who is the boss. We must all - scientist and nonscientist alike - play god when it comes to genetics.

[source: Philly Inquirer]

The Legacy of the Schiavo Case: The Penn Conference is Now Online

Streaming video from the 10th Anniversary Symposium of the Center for Bioethics at Penn is now up and is of very high quality; usable in a class even. This is good stuff, streams well and is free of charge from the Symposium site.

Nobody Knows What You'll Want--Not Even You

The findings aren't new to the bioethics literature, but it's quite striking to read these two recent articles from Archives of Internal Medicine side-by-side. The first shows that patient-designated and next-of-kin surrogate decision makers incorrectly predict patients' end-of-life treatment preferences in one-third of cases. Neither patient designation of the surrogate nor prior discussion of treatment preferences improved the surrogates' accuracy. The second study shows patients' treatment preferences changing as their health states change. Over time, patients who experience reductions in their abiltiy to perform activities of daily living are increasingly apt to rate treatments that result in disability as acceptable. Also, patients with pain were more apt to rate treatments resulting in pain as acceptable. This, as the abstract laconically puts it, "poses a challenge to advance care planning."
-Stephen Latham

What we are reading today...

• For Science's Gatekeepers, a Credibility Gap
  
• Draft of Pandemic Flu Plan Predicts Huge Impact
  
• The Voice of a Lost Generation
  
• A Painless Donation, an Enduring Lifeline
  
• Stem Cell Firm Uses Ferry to Evade Block on Controversial Treatment
  
• One Drug, Two Takes
  
• Mixed Result in Treating Schizophrenia Pre-Diagnosis
  
• Loss of Competition Is Seen in U.S. Health Insurance Industry
  
• Cruel Cost of the Human Egg Trade
  
• Film on Bird Flu May Spread Confusion
  
• Why College Women Sell Their Eggs
  

Benchside Ethics Superheroes at Stanford

Nature has the best writeup ever on a benchside ethics consultation program, which is in full swing at several of the "big bucks" genome money funded bioethics programs, most notably Stanford:

... the Stanford service aims to go beyond ethical troubleshooting, say co-founders David Magnus and Mildred Cho. "A lot of scientists don't really see ethics as a part of their job," says Cho. By making the usually academic field of bioethics more accessible, Magnus and Cho hope to promote a culture of ethical thinking within the laboratory...

Bench-side consultations are a way of integrating ethical thinking into a scientist's everyday life," says Magnus, director of the Stanford centre. Like most of his colleagues he doesn't think bioethicists should be expected to prevent misconduct. But he believes his bench-side service can foster integrity in trainee scientists and so indirectly prevent research going off the ethical rails...

What would the Stanford ethicists do if they discovered research that was illegal or breached public health and safety? Although they sign confidentiality agreements with Stanford researchers, Magnus and Cho say they have an obligation to report misconduct if they come across it. But what about less serious transgressions? "I don't think bioethicists should be policing research," says Magnus.

To avoid potential criticisms, the Stanford team is financially independent thanks to federal funding. The service is now being offered to all biomedical researchers at Stanford; other institutions, including Case Western Reserve University and Duke University in North Carolina, are setting up similar bench-side consultations. Hyun is not involved in the Case Western service at present, although he has not ruled that out. The hope is that such a service will promote ethical awareness in the lab. It's not a watchdog, but it must avoid looking like a show dog. It might not prevent deliberate misconduct, but it should help researchers who want to do the right thing.

Wolpe on Schiavo

In a column in the Philadelphia Inquirer AJOB's Paul Root Wolpe writes this:

Theresa Schiavo's body was kept alive for 15 years in a condition that simply did not exist before the mid-20th century. Her brain was badly damaged, and all higher function had been lost, yet her body functioned, she breathed without mechanical aid, her body responded to some stimuli, and she vocalized and moved. When Michael Schiavo looked upon his wife, he saw a body devoid of the mind and personality that made Terri a person, and he felt an obligation to end an existence he was sure she would not want. When the Schindlers looked upon their daughter, they saw a suffering child, warm-blooded and moving, whom they wanted to protect and safeguard as parents.

The real truth - the one hidden in the invective and hostility that infected so much of the debate over the case - is that both sides were right. Terri Schiavo found herself in a medical limbo that left her person and nonperson, severely damaged yet not really suffering, awake and moving yet not perceiving or feeling. That is precisely what makes these cases so tragic.

I once heard an antiabortion spokesman say that the struggle over abortion was a fight for the soul of America. And so it is, but not in the way she meant. The health of America's soul depends not on the specific outcome of these debates, but on how we conduct them. Medical science is going to keep throwing these dilemmas our way, and none of them will have simple answers. If we conduct them without bitterness, assuming our opponents' good faith, and in a spirit of working toward solutions, perhaps it won't be quite so hard to die in America.

Day two of the conference, and the small protest, are being covered basically everywhere, which is fitting - after all this is the anniversary conference for a Center that expanded bioethics' reach into public discussion tenfold.

Face Transplant Recipient Speaks

Independent reports that Isabelle Dinoire, whose entire face, basically, was replaced with a donor face in November 2005, is talking about how she feels, or rather has indicated that she has total feeling in her face:

Asked if she had accepted her new face, she replied, "It's too difficult to explain." ... She says she still only leaves her apartment if accompanied and has not replaced the mirrors she removed from her home after the accident.

Ms Dinoire still receives an anti-rejection treatment every week and takes 10 pills every day. Several times a day she must also examine a small patch of skin from the donor on her stomach, that would alert her if the tissue was being rejected.

Speaking of rejection, no word from anyone on whether or not she has ceased smoking, which put her at obvious additional risk for rejection.

Washington Post's version of the same AP story reports that Dinoire " tells herself that she simply has aged" when she looks at old photos.

Nature on The Body Snatchers

Nature Medicine this week discusses the market in human body parts and its more nefarious underbelly. I note that "the materials for scientists depend on a supply chain that begins with guys in dark suits expressing strong sympathies." It is a point we put more gingerly in our January column:

When it comes to the body, they say you can't take it with you when you die. But they didn't say it should be sold from the back of a truck. Or that you should not have the right to give a fully informed consent for whatever it is that medical science wants to do with your remains.

The history of the illegal body trade is fascinating, something my colleague Bob Baker has spent time thinking about. Of the 1800s, Emily Waltz of Nature says,

Illegal body trade has long been a lucrative proposition. In the 1800s, the UK and the US saw a sharp rise in the number of medical schools that needed cadavers for their students to dissect. But at the time, dissection was an option only for the poor, who couldn't afford a proper burial, and not for the middle and upper classes.

With the rising demand, medical schools began collecting unclaimed bodies from poorhouses. When there was a shortage, the schools would hire body snatchers to rob graves. In the 1820s, two Irishmen, William Burke and William Hare, reportedly murdered 16 people and delivered the corpses to a doctor for payment.