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William Saletan, chief political correspondent for the on-line magazine Slate and well-known essayist, contrasts an undergraduate bioethics conference at Penn with a somber bioethics gathering in Rome, and makes various observations about the bankruptcy of "liberal bioethics" he saw in the former gathering, in a two-part [One,Two] commentary. The essays are odd, not particularly rigorous, and hilariously well written. Wayne Shelton points out that they read in fact very much like Hunter S. Thompson. On bioethics.

New Guest Blogger Sean Philpott Ph.D., Ph.D., MSBioethics, from Wadsworth institute in sunny Albany, rants thusly:

I won't say I enjoyed these articles. Saletan describes himself as a biotech liberal, but the tone of the two articles suggests that he is a self-loathing liberal at best. For example, he states that we liberals of bioethics (of which I am unabashedly proud to consider myself a junior member) believe that "[we] are the future". Well, we're not. Nor are we all utilitarians driven by doubt rather than faith.

There are clear distinctions between the two liberal and conservative camps of American bioethics. But for Saletan to suggest that all liberal bioethicists are for unfettered research and biomechanical or pharmacological enhancement is wrong. We're not all industry shills afraid to challenge the research and marketing practices of pharmaceutical companies like Merck. Anjan Chatterjee's presentation clearly refutes that assertion. I also doubt that a neo-conservative like Francis Fukuyama would consider himself a Luddite or absolutist, his book Our Posthuman Future notwithstanding.

What I find particularly interesting about these articles is the curious way that a self-described liberal like Saletan outlines his arguments. He chastises Amy Gutmann, President of the University of Pennsylvania, for her sound-bite laden speech, but he might want seriously consider her message about mass media and public discourse. I would go so far as to blame the media for "polluting" public discourse, but the media certainly helps frame bioethical debates (a tip of the hat to Susan Lederer). Consider Saletan's use of the phrase "embryo-destructive" instead of the more common "embryonic stem cell" research - a linguistic manipulation worthy of Karl Rove.

No matter what the problems with Saletan's commentary, I still cannot get the images in his piece out of my mind. It reads like People Magazine on acid, including ridiculous but amusing sketches of the persona of Greg Pence, Art Caplan, and particularly Paul Root Wolpe - our own - whom Saletan loves. Read these.

The Terri Schiavo National Health Care Plan

A guest blog from Alan Meisel at Pitt, who has found one, really twisted positive spin on the Congressional effort to keep Terri Schiavo alive:

If states begin to enact statutes that make a written advance directive necessary to forgo artificial nutrition and hydration (or any other form of life support), it could lead to a system of universal health care!

If we have 10-15,000 people in a PVS now (all being kept alive by artificial nutrition and hydration), we will have a lot more if a written advance directive is required. If 1/3 of our nursing home population is now on feeding tubes, we will have a lot more on feed tubes if an written advance difrective is required. The costs will skyrocket. This will put further strain on Medicare and Medicaid -- perhaps to the breaking point. We will then be forced to confront head on whether it makes sense to be expending even huger amounts of resources on medical care than we are now for people who will never benefit from it when we have 40-50 million uninsured, skyrocketing costs for the rest of us, and a seriously medically underserved Medicaid population. This could put so much stress on the system that we will finally get meaningful reform -- a single payer system available to all.

This won't happen soon. But hope springs eternal.

Five Wishes

Just in case you haven't done your living will or advance directive yet, the Washington Post tells us about a comprehensive document called "Five Wishes," distributed by the nonprofit agency Aging With Dignity. -- Linda Glenn

Dying for Food

Theresa Schiavo spent more than a decade fighting an eating disorder. As millions recoil in horror at the fact that she died from the removal of a feeding tube, the irony that a woman who was plagued by food should die in that way has been lost. Ms. Schiavo entered her persistent vegetative state, in all likelihood, as a result of a heart attack brought on by her struggle with weight.

But when beautiful people, dressed in clothes too tiny to fit most Americans, host one program after another in which Terri Schiavo is fashioned as a vulnerable symbol of death by starvation, it is all too easy to miss the fact that Terri Schiavo did her 'starving' twenty years ago.

Ms. Schiavo made no secret of the fact that she wanted to weigh 85 pounds. Ironically, the photos of her as a svelte, tanned young woman, paraded as pictures of 'Terri as a healthy woman' - or as 'Terri as she might be again' - were taken in the throes of her battle with food and with bulimia. The pictures and the association with dying "from lack of food" should be familiar to anyone who is familiar with eating disorders. At least seven million Americans suffer from eating disorders like anorexia and bulimia, and 61% of cases last a decade or more.

If you are wondering whether or not the Terry Schiavo who had a heart attack would have said that she would want to forego nutrition and hydration, you don't know bulimia. She had already undergone a decade of refusing food at a basic, fundamental level, in the most resolute way imaginable.

At the time that Terri Schiavo went into persistent vegetative state, she had undergone some treatment for her eating disorder, but not much. Today, treatment for bulimia is even more expensive, and the images that torture young women about weight are more obvious and ubiquitous. Terri Schiavo's heart attack was, ultimately, a result of the lack of resources for the treatment of several of the known side effects of eating disorders. There was a lack of support, a lack of comprehensive health care, and a lack of awareness. What society was ready to offer her is food, and images of 'thin'. And indeed, that is all anyone outside her hospice offered her at the end of her life: food, pictures of vitality, and an entreaty to endure.

It would have cost society a fortune to do more for the young Ms. Schiavo - and millions like her - than to offer up the paradoxes of American weight consciousness. Treating eating disorders costs a fortune - tens of thousands of dollars a month on average for intensive treatment. Many, many women in particular receive no treatment, and many more are treated too little or for too short a time. Terri Schiavo was not alone in her struggle - but her struggle was not the one embraced by those who venerated life at all costs.

There are dozens of issues about Schiavo that will linger in bioethics for decades, and most of them are much more important, I suppose, than the role of eating disorders in medical and end of life decisions. It is incredibly troubling that patients linger in a vegetative state for decades while we try to figure out how to work together to match the goals of medicine to the importance of compassion. Ultimately, we all seem to know now that it is going to be hard to find a way for even like-minded communities to agree on how to balance life and liberty under circumstances like those of Terri Schiavo.

But it ought to be possible to get the hundreds of millions of Americans who have been watching the battle over Terry Schiavo and food to agree on one thing: people should not be allowed to linger for years in a fully-conscious, suffering-riddled persistent state of self-starvation. More than half the nation struggles with weight, and we are fatter than at any time in our history. And simultaneously, Americans worship beauty in unforgiving ways that provoke as much masochism about weight gain and weight loss as one could imagine.

It is no surprise that Terri Schiavo died when her nutrition and hydration were discontinued. But it should come as a shock that those who fight over nutrition at the end of life are so tolerant of a paternalism about weight and food - an attitude that killed Terri in the first place. - Glenn McGee

Romney Concedes Defeat on Stem Cells

Legislators in Massachusetts are gearing up to propose big spending bills for embryonic stem cell research, after clear defeat for Mitt Romney in his efforts to limit such research in Massachusetts.

Tony Auth on Terri Schiavo

Philadelphia Inquirer editorial cartoonist Tony Auth drew this today, and joined 17 other major editorial cartoonists in identifying one or another painful, difficult, paradoxical or pointed aspect of the Schiavo ordeal. - Paul Root Wolpe

Caplan on What We Can Learn from the Schiavo Case

Art wrote this MSNBC editorial on some of the lessons of the Schiavo case.

The Gilead Saga: A New Installment

Our man in Chapel Hill blogs:
In a previous post, I described how an effective anti-retroviral drug Viread, or tenofovir) developed by Gilead Sciences is currently being tested for safety and effectiveness as an HIV ‘prevention pill’. The trials are being held in various sites around the world, and are funded by the NIH, CDC and the Bill and Melinda Gates Foundation. The benefits of such a pill, if proven safe and sufficiently effective, would be substantial, particularly in low-income countries where HIV continues to be transmitted and women are often powerless to negotiate male condom use. But such HIV prevention studies must also wind their way through an ethical minefield, considering that the research participants must be both HIV-negative and exposed to the HIV virus if the studies are to be meaningful. As I put it last time:

All ethical hands on deck: do the trial participants really know they are not being guaranteed immunity from getting HIV? Are participants given sufficient resources and education about the use of condoms and other preventative means? Are the women, even if educated about prevention, really in a position to negotiate condom use? And what will be provided to those who become HIV-infected during the trial? If weaving an acceptable path through these issues is not difficult enough, keep in mind that the participants are often from non-Western cultures where the understanding of biomedical research may be less than ideal. And note that from a strictly scientific point of view, it is in the researcher’s interest that (at least some) participants fail to take the recommended precautions and expose themselves to HIV transmission. The study design is an ethical tinderbox waiting for a flame.

In August 2004, the tenofovir trials in Cambodia were halted by the Minister of Health following concern by sex worker unionists about adequate compensation to sex workers infected during the study. The tenofovir trials in Cameroon were suspended in February 2005 after months of heated rumors about ethical violations, culminating in a demonstration against the study by ACT UP Paris in front of the Cameroonian embassy in Paris.

Now it seems to be Thailand’s turn. And this time it is before the trial even starts.

The study population in Thailand, unlike the case with Cambodia and Cameroon, are 1600 intravenous drug users. According to Thai Drug Users’ Network (TDN) and other AIDS organizations in Thailand, the main ethical issues are (a) failure to provide clean injecting equipment (b) potential coercion involved in recruiting participants from methadone clinics (c) post-trial access to costly tenofovir if the drug proves safe and effective (d) lack of guarantees about treatment and care for those who are found HIV positive during pre-trial screening or who become infected during the trial.

This last concern is especially sensitive, considering the, well, unhappy relationship between intravenous drug users and the Thai government. Since 2003, the Thai government has waged a war on human rights drugs that has allegedly involved the killing of more than 3000 drug users. (For the gruesome Human Rights Watch report, see this.) So the prospective participants probably shouldn’t expect their government to lose much sleep over their welfare. But then you wonder – if the researchers and research funders knew just how vulnerable Thai intravenous drug users are to abuse and neglect, why did they decide to hang their shingle over there in the first place? - Stuart Rennie, UNC

Deconstructing the Genome

Yet another surprise about Derrida, the recently deceased, best-known and most difficult to comprehend philosopher of postmodernism. Jacques Derrida might be the only person who could add complexity to genomics, already the most intricate and sweeping scientific field in history. So he did. He's bequeathed $10 million to fund Yale Systems Biology Institute. I would pay money to listen to the spin that is given to this turn of events by the thousands of Derridian scholars, many of whom have been deeply skeptical of the entire field of genomics and in particular of its inherent (and obvious) commitment to naturalism. But I don't have to, because the spin has begun:

"Who says no one but scientists and engineers can contribute to the progress of systems biology?" said Carlos Jacobin, professor of comparative literature and the new director of the Derrida Center. "This privileges their role in the academy and suppresses diversity. We think linguists, critics, and philosophers deserve equal status with molecular biologists and software programmers in this grand collaboration."

Exactly. Want more? Genomics "... as everyone knows, has failed to progress because of its hidebound traditions, myopic vision, and obsession with empirical data." Yup, exactly. That's it.

I can't help hearkening back to a time when a physicist revealed in the now-defunct literary mag Lingua Franca that he had persuaded a post modern journal to publish his fake article criticizing physics in the "language of postmodernism."

The guy with the most illuminating perspective on this incredible turn of events in postmodernism was Yale's president C. Richard Levine, whose sole comment on the donation was "I had no idea Derrida had this kind of money, but we're happy to take it."

UPDATE: Put that under erasure: our comment reveals that this is actually an April fools joke. Well, I bought it.

It was only a matter of time...

Ian Sample of the Guardian Unlimited reports that the technology is now here to help paralyzed individuals control artificial limbs by thought alone. Just imagine how much further we might be able to go... Linda Glenn

Kidney For Sale: Ethicist Says, Ok Why Not

Look, if Georgetown University Press really wants us to blog this book, we will. Mark Cherry has written it and it is a bold title to say the least: Kidney for Sale by Owner.

  (WASHINGTON) — More than 4,600 Americans die each year while waiting for organ transplants. In 2003, only 20,000 of 83,000 patients waiting for organs in the United States received them. Despite widespread consensus that organ shortage is a national tragedy, bold initiatives to address the problem—such as creating a fee-based and regulated market for organ transplantation—have been fiercely rejected by the federal government, the medical community, and many religious faithful. But why? If most Americans accept the notion that the market is the most efficient means to distribute resources, why should body parts be exempt? 

  In Kidney for Sale by Owner, bioethicist Mark Cherry contends that the market is a legitimate means to procure and distribute human organs. Cherry carefully examines arguments against a market for body parts, made by such figures as John Locke and Immanuel Kant and Thomas Aquinas, and shows these claims to be steeped in myth, oversimplification, and bad logic. He contends that equality, liberty, altruism, social solidarity, human dignity, and, ultimately, improved health care are more successfully supported by an organ market rather than through its prohibition.

  Rather than focus on the purported human exploitation and "moral repugnance" of selling organs, Cherry says we should focus on saving lives. Many deaths could have been prevented, and many more lives saved, were it not for the moral hand-wringing over the concept of selling human organs. Cherry boldly deconstructs the roadblocks that are standing in the way of restoring health to thousands of people.

  "Mark Cherry's book is the definitive treatment of the bioethical and business ethics questions that have been raised about a market in organs,” says Nicholas Capaldi, Legendre-Soule Distinguished Chair in Business Ethics at Loyola University. “It is must reading for anyone interested in these issues, and it will be the basis for all future discussion of this topic."

  Mark J. Cherry is associate professor in the Department of Philosophy at Saint Edward's University in Austin, Texas; and is coeditor with H. Tristram Engelhardt, Jr., of Allocating Scarce Medical Resources, senior associate editor of The Journal of Medicine and Philosophy, senior associate editor of Christian Bioethics, and editor-in-chief of HealthCare Ethics Committee Forum (HEC Forum).

Also due out - we found out from our comments - is James Stacey Taylor's treatment of the same problem, Stakes and Kidneys: Why markets in human body parts are morally imperative. His book garnered pretty amazing reviews too:

'James Stacey Taylor has written the most comprehensive treatment of the problem of markets in kidneys. It is probably also the best treatment of the subject. His arguments that a legal trade in human organs would best solve the organ shortage are more sophisticated and compelling than any I have seen.'
Tom L. Beauchamp, Professor of Philosophy and Senior Research Scholar, Georgetown University, Washington DC

Dave Undis of lifesharers reports some donation statistics today:

The number of organ transplants in the United States increased 6% in 2004. That's over 27,000 lives saved. Organs from deceased donors were up 11%, and organs from live donors were up 2%. That's the good news.

Here's the bad news:
- Last year 43,128 people were added to the national transplant waiting list.
- Last year 6,228 people were removed from the waiting list because they had died. Another 1,594 were removed from the list because they had become too sick to undergo transplant surgery.
- At the end of 2004, over 87,300 people were on the national transplant waiting list. That's up from abou 83,900 at the end of 2003.

- updated 4/2/5

Living Will? I'm Writing A Living Threat

Robert Friedman in St. Petersburg has written a living will with teeth, in the seething satire that the Schiavo debacle demands.

Hilary Bok: Hurray for the Judges in the Schiavo Case

Over at Obsidian Wings, Hilary Bok closes the case against conservative critics of the judges who have ruled in umpteen Schiavo decisions. Bill Kristol, Ann Coulter, Thomas Sowell, Alan Keyes, and on and on: they are all complaining about "judicial activism" in the Schiavo case - by which they mean not only that the judges have ruled outside the scope of their decisionmaking authority, but also that "this entire case is the result of renegade judges." And she points out that the critics of the courts are basically advocating that everyone and anyone rise up against the court system right now:

William Kristol, already quoted: "Perhaps it is time, in mature reaction to this latest installment of what Hugh Hewitt has called a "robed charade," to rise up against our robed masters, and choose to govern ourselves. Call it Terri's revolution."

John Gibson, Fox News: "So Jeb, call out the troops, storm the Bastille and tell 'em I sent you."

Bill Bennett: "It is a mistake to believe that the courts have the ultimate say as to what a constitution means. (...) It is time, therefore, for Governor Bush to execute the law and protect her rights, and, in turn, he should take responsibility for his actions. Using the state police powers, Governor Bush can order the feeding tube reinserted. His defense will be that he and a majority of the Florida legislature believe the Florida Constitution requires nothing less."

Ann Coulter: "As a practical matter, courts will generally have the last word in interpreting the law because courts decide cases. But that's a pragmatic point. There is nothing in the law, the Constitution or the concept of "federalism" that mandates giving courts the last word. Other public officials, including governors and presidents, are sworn to uphold the law, too. (...) Just once, we need an elected official to stand up to a clearly incorrect ruling by a court. Any incorrect ruling will do, but my vote is for a state court that has ordered a disabled woman to be starved to death at the request of her adulterous husband."

Alan Keyes: "When time is of the essence, necessity authorizes the executive to safeguard the security of the constitution before citizens and the polity suffer irreversible damage. Terri Schiavo's survival depends on Gov. Bush's faithful execution of this responsibility, and the survival of American self-government on the willingness of all those in a like position to faithfully execute the duties of their high office."

Elizabeth Farah: "Gov. Bush, you have the right to exercise your authority to save this woman's life. You have the authority to reject a corrupt judge's corrupt decision. Remember when the pharoah issued the order that all Hebrew male infants should be killed? What did Moses' mother do? She broke the law of the civil authority. She saved the life of her son. (...) Jesus says that yes, you will have many detractors – people who will revile you for doing the right thing, but you will be rewarded greatly by God."

It really is pretty incredible to read such venomous attacks on officers of the court, although of course not so much so as Congress taking on a single medical decision in late-night session. Hilary "hilzoy" Bok shreds the stupid conservative arguments, of course, but that will be small comfort to Michael Schiavo and 280 million other Americans who have fought so hard to allow Terry Sciavo some peace.

Positive Feedback for pcemakrRUS04!!Would *definitely* Buy From Again.Delivery Was Just in Time.

Arizona Republic is grumpy about the recent implant of a pacemaker purchased on eBay. We say "why?" eBay offers patients more than 17,000 medical devices - many at low, low discount prices. And you know what - it's just good business. Just think - the physicians at Arizona's Advanced Cardiac Specialists can make up a lot of the money that they'd been losing from cutbacks in insurance reimbursement - especially since $411.99 (their winning bid) let them sell the pacemaker for a $5500 profit. Cardiac surgeons have to eat too.

Come to think of it, why was it that eBay stopped allowing the sale of organs?

Congress Can Heal You, Too

The only thing funnier than Jon Stewart hosting a bioethics Q&A;, if anything could be funnier than that, is Michael Bassik's suggestion that people send Congress their medical problems for diagnosis:

Take a digital picture or video of your medical problem – tennis elbow, acne, runny nose, hemorrhoids, or whatever ails you - and send it to the doctor in charge of the US Senate and your health care.
Everyone, take two minutes and upload your photos to Flickr.com. "Tag" the photo "Frist." If we get critical mass, we'll send everyone's photos to Dean Rosen, the good doctor's Health Care policy director!

More lessons from Schiavo

Posted in the Op Ed section of Good Friday's Globe and Mail:

Death is the veil that those who live call life

By Linda MacDonald Glenn
End-of-life issues brought me into the field of bioethics. I lost my first husband, Jack MacDonald, to cancer in 1984. He died after a long struggle that led ultimately to the question of whether to insert a feeding tube to prolong his life. Jack's chemotherapy had caused nausea, mouth sores, and esophageal ulcers and his oncologist had ordered a feeding tube. As I sat by Jack's bedside while the surgeon discussed the procedure, my husband start to cry. "Please no more . . . let me go," he pleaded.
Stunned, I didn't know what to say. Jack took my hand, grasped it and repeatedly said, "Please no feeding tubes, no more tubes . . . no more." He paused, rested a moment, then smiled (as if he knew what I was thinking) and said, "And if you wait until I'm unconscious to put one in, I swear I will come back after I've died and haunt you for doing that." I cried and laughed at the same time and promised I would never do that to him.
I loved Jack and I did not want to let him go, but I did not want to see him suffer any more. Jack had realized the fight was over long before I did; he tried to reassure me that he wasn't frightened and that he wasn't in any pain, and I shouldn't worry. Ultimately, I honoured his wishes; but it was, without a doubt, one of the most difficult decisions of my life. A few weeks later, Jack slipped into unconsciousness and died quietly, peacefully, on Feb. 8, 1984, at 6:33 p.m.
Of course, I sympathize with Michael Schiavo and his decision to remove the feeding tube of his wife Terri, who has been in a persistent vegetative state for 15 years. Maybe, because I'm approaching the half-century mark, I seem be to facing increasingly more end-of-life issues.
At my age, I know that no one escapes this life alive. But that does not ease the grief of losing so many loved ones. What brings me comfort is the belief that the people I have loved and lost are still with us, if not in body, then in spirit. These individuals have been my teachers and have helped me learn that what we experience on Earth is part of a natural and continual evolution of our individual souls.
I believe we are born so that we can learn life's lessons and help one another to grow. When we have learned all we can on this Earth, and served our purpose, we return to God (or, if you prefer, to the Cosmos, Eternity, the Universe, the Multi-verse, Everything-ness). One of my favourite authors, Buddhist monk Thich Nhat Hanh, writes that we are afraid to die because we are afraid we will become nothing when we die. But rather than seeing death as an end to life, we should see our lives as a temporary manifestation, like a parentheses in a sentence that is eternity, or a wave that's part of the larger ocean. Death can teach us valuable lessons about impermanence and the interconnectedness of all things.
This may not provide a lot of comfort to Terri Schiavo's parents, Bob and Mary Schindler, who this week appealed to the U.S. Supreme Court to have their daughter's feeding tube reinserted. This life-and-death case has gripped us and prompted debate about end-of-life care and what the "sanctity of life" means. It has created schisms in religious communities and been the topic of heated conversation at many a dinner table. Watching the Schindlers publicly plead for intervention is heart-wrenching. I have no doubt that they love Terri, and are doing this for her sake. I am reminded, though, that in the bestseller The Road Less Traveled, M. Scott Peck defines love as "the will or willingness to extend one's self for the purpose of nurturing one's own or another's spiritual growth."
The question now is: Whose spiritual growth is being nurtured here? Traditionally, the Catholic Church, of which Terri Schiavo is a member, employs a burden-versus-benefit analysis in determining whether or not to use extraordinary measures to sustain life. Part of the reasoning behind this is the recognition that death is not the ultimate evil, but eternal damnation is. And that our purpose here on Earth is to serve God, and once we have done that, we no longer need to cling to these earthly bonds.
It is ironic that all of this is taking place during Holy Week, a time when the Christian community celebrates the triumph of eternal life over death, through the resurrection of Christ. To the devout Christian, to allow Terri to die would be to allow her to return to God. Her death does not diminish the fact the she and all of her loved ones were created as gifts from God and should be cherished as such. Regardless of her fate, the debate over whether or not Terri's wishes should be honoured has helped us realize that it is our responsibility to exercise our free will to make choices to nurture our own or another's spiritual growth. In searching for meaning and purpose in our lives, we reconnect with others and remind ourselves that ultimately, we are not alone.
Terri's case is heart-wrenching because it touches everyone, and its outcome further shapes our relationship with others and the governments to which we delegate authority.
The fundamental lesson seems clear: Decide for yourself how to manage the end of your life, and make it clear to others. Without this guidance, you are the victim or beneficiary of conflicting interests and beliefs -- or of an ad hoc consensus that may, or may not, coincide with your own wishes.

- Linda Glenn

John Paris, Jesuit Bioethicist - My Religion Has This One Wrong

John Paris does one of his typical clearheaded Q & A sessions, this time on Schiavo and with MSNBC. If you are looking for a clearheaded Catholic perspective on Schiavo, this is it. John is amazing.

Good Thing There Are Amazing Neurologist Superstars Working On Behalf of the Schindlers

Or not.

The New Living Will Form

I'm thinking that Bill Allen's proposal for a living will is maybe a good idea for me, you and everybody else with fear of the Bush administration a sense of humor.

I received this today from a member of our hospital staff with whom i have not spoken about my idea the other day.

Florida - Living Will
I, _________________________ (fill in the blank), being of sound mind and body, unequivocally declare that in the event of a catastrophic injury, I do not wish to be kept alive indefinitely by artificial means. I hereby instruct my loved ones and relatives to remove all life-support systems, once it has been determined that my brain is longer functioning in a cognizant realm. However, that judgment should be made only after thorough consultation with medical experts; i.e., individuals who actually have been trained, educated and certified as doctors.

Under no circumstances -- and I can't state this too strongly -- should my fate be put in the hands of peckerwood politicians who couldn't pass ninth-grade biology if their lives depended on it. Furthermore, it is my firm hope that, when the time comes, any discussion about terminating my medical treatment should remain private and confidential.

Living in Florida, however, I am acutely aware that the legislative and executive branches of state government are fond of meddling in family matters, and have little concern for the privacy and dignity of individuals.

Therefore, I wish to make my views on this subject as clear and unambiguous as possible. Recognizing that some politicians seem cerebrally challenged themselves (and with no medical excuse), I'll try to keep this simple and to the point:

1. While remaining sensitive to the feelings of loved ones who might cling to hope for my recovery, let me state that if a reasonable amount of time passes -- say, ____ (fill in the blank) months -- and I fail to sit sit up and ask for a cold beer, it should be presumed that I won't ever get better. When such a determination is reached, I hereby instruct my spouse, children and attending physicians to pull the plug, reel in the tubes and call it a day.
2. Under no circumstances shall the members of the Legislature enact a special law to keep me on life-support machinery. It is my wish that these boneheads mind their own damn business, and pay attention instead to the health, education and future of the millions of Floridians who aren't in a permanent coma.
3. Under no circumstances shall the governor of Florida butt into this case and order my doctors to put a feeding tube down my throat. I don't care how many fundamentalist votes he's trying to scrounge for his brother in 2004, it is my wish that he plays politics with someone else's life and leaves me to die in peace.
4. I couldn't care less if a hundred religious zealots send e-mails to legislators in which they pretend to care about me. I don't know these people, and I certainly haven't authorized them to preach and crusade on my behalf. They should mind their own business, too.
5. It is my heartfelt wish to expire quietly and without a public spectacle. This is obviously impossible once elected officials become involved. So, while recognizing the wrenching emotions that attend the prolonged death of a loved one, I hereby instruct my relatives to settle all disagreements about my care in private or in the courts, as provided by law. If any of my family goes against my wishes and turns my case into a political cause, I hereby promise to come back from the grave and make his or her existence a living ____ (fill in the blank)

Terri Schiavo's Brain: A Neuroethicist Clarifies Her Condition

Martha Farah, neuroscientist and neuroethicist at Penn has put together a page on Terri Schiavo at the Penn neuroethics site, which includes many references to neurological literature on PVS, and she wrote this up for us:

Recent discussions of the Terri Schiavo case have focused, understandably enough, on its legal and political dimensions.  But what propelled this case through umpteen courts and into the US Congress are the neuroethical issues it raises, and we’ve heard almost nothing about them lately.  I do not think the lack of attention to the neuroethical issues is simply because they are settled and need not be discussed further.  (Indeed, if someone has solved the mind-body problem and I missed it, email me quick!)  The issues at stake here concern the relations between conscious awareness, brain and behavior, and these are hard problems.  What gives mental life to a brain and how can we tell whether a given damaged brain supports some type of awareness?

Until recently, a patient’s behavior was the one source of evidence we could use to infer their mental state.  Now functional neuroimaging has been brought into the mix.  Both sources of evidence are trickier to interpret than they appear at first.

Some observers of Terri Schiavo find her behavior indicative of conscious awareness and intentionality.  One observer, writing on the website terrisfight.org wrote: “I was pleasantly surprised to observe Terri’s purposeful and varied behaviors... I never imagined Terri would be so active, curious, and purposeful. She watched people intently, obviously was attempting to communicate with each one in various ways and with various facial expressions and sounds.”  For me, watching Terri Schiavo in the website videos, it was difficult not feel I was seeing a person interacting with others and aware of her surroundings.

However, clinical and experimental neuroscience have taught us some surprising things about the range of behaviors that can emerge from a decorticate brain.  Such behaviors include orienting with eye and head movements toward sights and sounds, generating facial expressions, and producing nonverbal vocalizations that have meaning for us, if not the person producing them, such as cries and laughter.  In light of this, we must interpret the behavior seen in the videos cautiously and with a measure of skepticism.

The most natural interpretation for the behaviors we see on the video is not the only interpretation.  For example, when a dozing Terri is loudly ordered to “open your eyes!” and does so, does that mean she understood what was said?  Or would she have done the same thing if roused with an equally loud order to “open your mouth!” or “stand on your head!”

Humans are hardwired to interpret the behavior of others in terms of mental states.  In the psychology literature this tendency is part of a suite of abilities termed “Theory of Mind” (ToM) and in most situations we apply our ToM automatically, without weighing alternative reasons for the behavior.  For a particularly striking demonstration of this fact about ourselves, consider the typical response to the robot Kismet.  Kismet is part of a research effort at the MIT Artificial Intelligence Lab to design machines that interact socially with humans.  Kismet has been programmed to gaze at humans who approach it, orient to salient objects moving within its field of view, pull back avoidantly if an object is thrust forward at it, and so on.  People attribute all manner of cognitive and emotional states to this robot on the basis of a fairly small set of simple behaviors, and have been known to become quite attached to it.  And this is a contraption made of metal and plastic, not a human being!  My point is emphatically not to liken Terry Schiavo to Kismet, but rather to suggest a similarity in our reactions to the woman and the robot.

Recent functional brain imaging results have added a new twist to the debate over Terri Schiavo and the treatment of persistent vegetative state (PVS) more generally.  Brain imaging is potentially helpful in understanding the mental life of neurological patients.  Behavior is an imperfect measure of cognitive state in anyone, but especially in neurological patients whose verbal and motor systems may be damaged or disconnected from cognitive systems. Brain imaging offers seemingly more direct access to the workings of cognitive areas of the brain.  However, at this point in the development of functional brain imaging, the meaning of different patterns of brain activity is not well understood.

A much publicized article in the journal Neurology used fMRI to document cortical responses to speech in patients who were in a minimally conscious state (MCS).  This result, reported on the front page of the New York Times, was seized upon by some as evidence that Terri Schiavo may retain more awareness than her behavior suggests.  There are two problems with this conclusion.

The first problem is that the patients in this study were in a MCS, not a PVS.  What is known about brain activity in PVS?  A few studies have shown that the primary sensory cortices of PVS patients respond to touch and sound but higher-level cortices associated with cognition are not reliably activated.  However, one PVS patient imaged with PET showed more cortical activation in response to a story told by his mother than to nonsense words.

The second problem is that brain activation, even activation that discriminates between meaningful stimulation and nonsense, does not imply awareness.  The cognitive neuroscience literature contains a number of studies in which people’s awareness of stimuli was manipulated while brain activity was measured.  In studies with healthy normal participants, awareness of visual stimuli was eliminated by the use of brief, subliminal presentations.  In studies with neurological patients, a phenomenon called “extinction” was used to control awareness of the stimuli; visual stimuli on one side of space are extinguished (not consciously perceived) when another stimulus is presented simultaneously on the other side of space.  These studies have shown that stimuli can activate relevant regions of cortex even when people are unaware of the stimulus.  This is consistent with the idea that the brain activity underlying perception is graded, ranging from nonexistent to the levels of activity observed in normal conscious perception, and that conscious awareness of external events accompanies only the higher end of that range.

The bottom line is that we have two windows through which to look for an answer to the question of conscious awareness in brain-damaged patients, and while neither is crystal clear, both are useful.  The first is extended behavioral observation (as opposed to snippets of video), undertaken with an awareness of our susceptibility to the “Kismet” phenomenon.  The other is functional neuroimaging, interpreted cautiously and with an awareness of how much remains to be learned about activation-cognition correlations in damaged brains.

Dahlia Lathwick Indicts the Palm Sunday Compromise

An emerging consensus holds that even with New England Journal of Medicine's rush publication of Schiavo articles by George Annas and Tim Quill, the standout commentary on what happened here -- geez, what did happen here? am I dreaming?? -- is by Dahlia Lathwick, senior editor of the online magazine Slate, who offers a scathing indictment of Congress's sudden interest in the Schiavo case. She pointedly questions the motives behind the Palm Sunday Compromise, particularly the rush to trample centuries of federalist traditions in the pursuit of a self-proclaimed "culture of life".

There's also a nice interview of Dahlia Lathwick by Alex Chadwick, discussing many of the legal particulars of the Schiavo case.
- Sean Philpott (senior scientist at New York Wadsworth Institute)[thanks Bob Baker (Union)]

Forget Canada. I'm Moving to California.

L.A. Times reports on the California Medical Association's vote this week in which 449 of 450 physician deligates voted to express "emergency outrage" at Bush administration maneuvering on the Schiavo case - an in particular to condemn the legislation he signed allowing Terri Schiavo's parents to request of a Federal court that Ms. Schiavo's feeding tube be reinserted.

As We Await the Opinions of the 11th Circuit Court on Schiavo...

It is worth remembering Justice Scalia's concurring opinion in the Cruzan case.  I don't think the President or his allies in Congress can expect much sympathy from the highest court.

JUSTICE SCALIA, concurring. The various opinions in this case portray quite clearly the difficult, indeed agonizing, questions that are presented by the constantly increasing power of science to keep the human body alive for longer than any reasonable person would want to inhabit it. The States have begun to grapple with these problems through legislation. I am concerned, from the tenor of today's opinions, that we are poised to confuse that  enterprise as successfully as we have confused the enterprise of legislating concerning abortion -- requiring it to be conducted against a background of federal constitutional imperatives that are unknown because they are being newly crafted from Term to Term. That would be a great misfortune.

While I agree with the Court's analysis today, and therefore join in its opinion, I would have preferred that we announce, clearly and promptly, that the federal courts have no business in this field; that American law has always accorded the State the power to prevent, by force if necessary, suicide -- including suicide by refusing to take appropriate measures necessary to preserve one's life; that the point at which life becomes "worthless," and the point at which the means necessary to preserve it become "extraordinary" or "inappropriate," are neither set forth in the Constitution nor known to the nine Justices of this Court any better than they are known to nine people picked at random from the Kansas City telephone directory; and hence, that even when it is demonstrated by clear and convincing evidence that a patient no longer wishes certain measures to be taken to preserve his or her life, it is up to the citizens of Missouri to decide, through their elected representatives, whether that wish will be honored. It is quite impossible (because the Constitution says nothing about the matter) that those citizens will decide upon a line less lawful than the one we would choose; and it is unlikely (because we know no more about "life and death" than they do) that they will decide upon a line less reasonable.

- Art Caplan

Plus, We Hear that You Have Friends in High Places Down Here

St. Petersburg Times had an interview with Michael Schiavo, who put his request to President Bush point blank:

"Come down, President Bush," Schiavo said in a telephone interview. "Come talk to me. Meet my wife. Talk to my wife and see if you get an answer. Ask her to lift her arm to shake your hand. She won't do it."

Schiavo Decision: Read It

Read the order direct from the U Pitt law center as PDF here.

Federal Judge Denies TRO in Schiavo

U.S. District Judge James Whittemore denied a request by Schiavo's parents to re-insert the feeding tube that had been withdrawn Friday. The judge stated in his ruling that the "plaintiffs have not established a substantial likelihood of the success of the merits of their case." Next stop: 11th Circuit Court of Appeals in Georgia -- Linda Glenn

Schiavo Means?

A few thoughts about what, other than reform of laws about euthanasia, might come from this incredible climax to the Schiavo case:

Living Wills May Not Work, but I'm Getting One - There couldn't be a more salient test of the question as to what it might mean if I do not write down "I prefer not to be held hostage by fears about a feeding tube for more than a decade, please." I've argued in several papers that living wills are a mistake and are unlikely to work, and others have found enough empirical evidence to cast doubt on the idea that advance directives make much difference in the care that patients receive. But tell that to Michael Schiavo. Today it is awfully clear that no matter what I and other critics of living wills might have believed about how well they work, they do at least make it easier to avoid the Schiavo level of confusion and wrangling. I have opined over and over again that living wills are too litigious. Um, ok, I was wrong. All around the country people will now begin thinking very seriously about writing down their wishes about feeding tubes and respirators. It is as John Danforth said when he pushed for the Patient Self-determination Act in the first place: young people "should get a Miranda warning" about what can happen if they do not talk to others about health care preferences.

In the Future, it Will Be Tough to Get a Majority of Legislators to Agree to Support Choices by Individuals About Health Care - The scene on the House floor as the debate persisted about Schiavo is staggering. Those who fought for the sanctity of marriage now fight against the importance of a husband's choice. Those who fought for the importance of the 10th amendment and states rights more generally are suddenly desperately fighting against a state's rule of law. The body that made it possible for Cruzan's case to become the Patient Self Determination Act is now deciding that expressed views about dying just don't matter. Why? Because Democrats do not want to run for office against campaign commercials that feature Terri Schiavo dying.

Systemic End of Life Care Is Now Officially Less Important than Jack Kevorkian and Terri Schiavo and Tom DeLay's Own Ethics Problems - Ask yourself when was the last time that President Bush and the Congress undertook anything like a midnight effort - including a flight to get the President from Texas to D.C. during a vacation - on behalf of healthcare. Give up? Never. Just think what could happen if Congress worked this hard or spent this much of our tax money to discuss and vote quickly on reform of managed care. It could never happen - but why? Because the battle over Terri Schiavo is illuminated by a single, vulnerable woman. If Democrats could manage to make a symbol out of a young woman dying of a curable chronic disease because she has no insurance, we might have 40 million fewer uninsured people in the nation today. And the lesson doesn't end there: this case is sucking the life out of the end of life care debate. Just as Kevorkian turned the nation's attention away from the problems that made his services seem desirable, the Schiavo case turns our attention away from dozens of critical questions about the funding of hospice and a dozen other issues.

Compassion for the Dying Schiavo and Her Family Ought Not Be Lost - There is no question in my mind that the Schiavo case illustrates wanton, callous political maneuvering on the part of some. It is equally clear to me that Congress has no business working on this case in this way - interfering in the lives of those who are touched by such tragedy as they make private decisions. But it should not be lost that many who have begun to fight in this matter as it has been quickly escalated have deep compassion for the Schiavos, and that such compassion comes from a vital sense that death and suffering must be understood and respected - and that love for life is important and beautiful. Somewhere in the middle is the opportunity to take this case and use it to move quickly to reform of national policies. I hope that happens. That will of course come as no comfort to the mother of baby Sun in Houston.

People Struggle Most Against the Worst Odds - There is no question about Terri Schiavo's condition. She is never ever going to awaken, no, to be more blunt, her brain is utterly destroyed and there is nothing of what was Terri Schiavo remaining in her but the simple functioning stem that causes her other organs to continue to function at the most basic level. That much is clear. All that remains of Terri Schiavo is her dignity and the symbolic meaning of her body. So why does anyone fight to keep her in this condition rather than discontinuing a treatment that everyone agrees is not therapeutic? What does it mean to fight against the impossible in this case? Republicans fighting against this measure have tried desperately to avoid discussion of what might re-grow Ms. Schiavo's brain, because God forbid they say what the man who offered Mr. Schiavo $1 million to keep Terri Schiavo said: stem cells. No, there is nothing here for them to point to but miracle. And it should be noted that pushing for a miracle against impossible scientific odds is a critical part of the American culture in an era in which physicians often feel that they must offer treatments that they do not believe are therapeutic. The idea that patients and others have a right to request things whether or not they work is being reinforced right now.
- Glenn McGee

You Need a Living Will

This is the location to find information about a living will - which after the Schiavo case you may really want to consider having. An advance directive aimed at ensuring that your doctors and significant others know what treatments you would, or would not, want has suddenly become the most important tool one could have in the event that there is any difference between your views and your family's views about end of life care. Country simple: if you would want a feeding tube removed were you in persistent vegetative state, and you think that it is enough that you told your family as much, think again and get a living will. Your state's information is above.

Warning: not guaranteed to protect you against the combined legislative force of a majority of congress.

Schiavo: A Constitutional law perspective

Kathy Cerminara, law professor at Nova Southeastern University, has been analyzing much of the legislation coming out on the Schiavo case; I look forward to hearing what she has to say about the Congressional legislation. Interesting enough, at least two "right to die" cases have been decided by the federal courts: Gray v. Romeo, 697 F. Supp. 580, ; 1988 U.S. Dist. LEXIS 11580, where the court held upheld Marcia Gray's right to self-determination and her right to refuse medical treatment, as expressed through her husband, as surrogate and Tune v. Walter Reed Army Medical Hosp., 602 F. Supp. 1452, 1454 (D.D.C. 1985). In Tune, the court ordered, in accordance with the patient's wishes, the removal of her life-support system, although such an action would likely result in her immediate death. So, being in Federal Court certainly doesn't automatically equal a victory for the Schindlers. The federal district judge has three issues to decide initially: First, the request for a temporary restraining order (TRO) to reinstate the feeding tube; second, the constitutionality of the bill approved by Congress, and third, whether on not any of Terri Schiavos's constitutional rights have been violated. For the judge to grant a TRO, he has to weigh and balance four criteria: (1) an ascertainable claim for relief (that is, a right of the Plaintiff which is in need of protection), (2) a likelihood of success on the merits of the claim, (3) irreparable harm and damage which will occur if the TRO is not granted, and (4) No adequate remedy at law (that is, no way of calculating money damages). The Court may also balance the hardships to the parties if the TRO is granted, and at any public policy or public interest involved in the controversy. A hearing has been scheduled for 3pm today, we'll see what the federal judge does with this. -- Linda MacDonald Glenn

The Fate of Terri SchiavoHas Already Been Decided

What Congress and the President are trying to do has already been done--by the Florida legislature and by the President's brother Jeb who is the governor there. The Supreme Court of Florida quickly rejected Bush's and the legislature's attempt to intervene with what was known as "Terri's Law". There is every reason to predict that the same fate awaits Tom Delay, Bill Frist, James Sensenbrenner and George Bush.

First, state courts control the handling of end of life care issues not the Federal courts. Second, the facts in this case have been litigated forever and there is no reason to think any Federal judge will find any flaws with the due process according Terri's parents and siblings as they have fought against her husband. Third, Congress is trying to pass a law for 'one' and that is unlikely to be seen as constitutional. Fourth, the Schiavo case is essential a domestic dispute. Federal courts hate to get involved in these. Fifth, and perhaps most importantly, the trial court judge shows no inclination to be bullied. He has already told Congress to pound sand when it issued subpoenas requiring Terri Schiavo to testify in Washington. He may well do the same in response to any Congressional legislation.
- Arthur Caplan

The Ethics of Sucking Blood from Private Parts

Forward Newspaper reports on the "harassment campaign" against prominent Orthodox rabbi and medical ethicist Rabbi Moshe Tendler, a bioethics expert and Talmud instructor at Yeshiva University, who

was criticized by ultra-Orthodox leaders and newspapers after he was quoted in the press as saying that the practice of metzitzah b'peh, or oral suction of the circumcision wound, should be conducted with a sterile tube. In many ultra-Orthodox circles, especially within certain Hasidic sects, the ritual is performed by having the mohel suck blood from the wound with his lips directly on the baby's penis.

Tendler spoke out against the practice following reports last month that a Jewish infant had died of herpes and that several other babies had contracted the virus after being circumcised by mohel Rabbi Yitzchok Fischer, who practiced direct oral suction. Tendler co-authored an article in the August 2004 issue of the medical journal Pediatrics, which asserted that the risks of herpes infection should outweigh any ritual benefits of using direct oral suction.

In recent weeks, ultra-Orthodox newspapers have condemned Tendler and accused him of reporting Fisher to health officials — a claim that Tendler vehemently denies.

Syndiated Columnist Kate Scannell on Lying to Insurance Companies

Kate Scannell is a great columnist - she does her homework and writes with verve about social issues. And she reads AJOB; that alone makes her cool. So we were incredibly proud to read her most recent column, based entirely on the new articles in our journal about lying to insurance companies. She even did her own little "mini-study" to confirm the findings of the authors:

In an article published in the current issue of The American Journal of Bioethics, researchers examined the willingness of the public and physicians to support deception of insurance companies for the purpose of obtaining health care services. The researchers asked over 1,600 physicians and 700 public members (drawn from a pool of prospective jurors) what the doctor should do in similar scenarios.

The researchers found that 26 percent of the public sample and 11 percent of surveyed physicians chose deception of the insurance company as the proper response.

Mine is an informal and unscientific poll, but I had the opportunity to ask 22 physicians about their response to the study's findings. No one was surprised that some physicians and public citizens supported deception of insurance companies in the service of obtaining necessary patient care, but all were surprised that the reported percentages were so low. Nearly everyone believed that the majority of physicians at some time or   other had "stretched the truth"or "coaxed a patient" or "caved in to a patient's demands" to misrepresent facts in order to satisfy the insurance company's pre-qualification criteria for obtaining costly drugs or tests.

In both circumstances, health care costs may be driven upwards if patients are inadequately treated or diagnosed, and if doctors and patients spend too much time making requests and appeals to insurance companies. Additionally, the medical profession may find its reputation undermined when an insurance company administrator   can trump doctors' medical decision-making and determine what constitutes necessary medical care.

Information Under the Skin: the European Union Worries

EUROPA reports on the EU European Union Ethics in Science and New Technologies (EGE) opinion on the ethics of implanting information and communication technologies (ICT):

"The idea of placing ICT devices “under our skin” in order not just to repair but even to enhance human capabilities gives rise to science fiction visions with threat and/or benefit characteristics. However, in some cases, the implantation of microchips with the potential for individual and social forms of control is already taking place.

The intimate relation between bodily and psychic functions is basic to our personal identity. Neurosciences are developing very quickly. The brain implants developed to alleviate tremors in Parkinson’s disease are only one example. They show that ICT implants may influence the nervous system and particularly the brain and thus human identity as a species as well as individual subjectivity and autonomy.

These are the essential reasons why ICT implants in the human body have large and important ethical consequences. Not surprisingly, the respect for human dignity has been the fundamental basis of EGE discussions of where the limits should be drawn for different applications of ICT implants."

Elizabeth Blackburn, Fired by President Bush from Bioethics Commission, Awarded Franklin Medal

Elizabeth Blackburn is a great scientist, the only stem cell biologist who served on the Presidents Council on Bioethics under Leon Kass, and those who watched as she was dismissed from the Council were appalled - particularly at the assertion by Kass in newspapers that Blackburn was dismissed not for her politics but because she did not participate in the panel's discussions. If you followed the scandal you know that Blackburn was in fact very active in the discussions, by email, but that at the heart of the matter was the question of how to cast her contributions as a scientist to the public debate.

Benjamin Franklin would have loved Elizabeth Blackburn, and no doubt it is that fact - as well as her basic science acumen - that insipred the judges at the Franklin Institute in Philadelphia to award her the Benjamin Franklin medal, which has been awarded to truly outstanding scientists since 1824.

Blackburn, an Australian who is now a U.S. citizen and a professor at the University of California, San Francisco, was one of 18 people chosen in 2001 to serve on the President's Council on Bioethics. She researched developments in embryonic stem cells and told her fellow council members that the field held great promise in the health-care field.

The use of such cells from human embryos is opposed by abortion opponents. Blackburn and another scientist were replaced in 2004 with three people who held more conservative views.

The panel chairman said her removal was not related to politics, but Blackburn disagrees. She wrote of her experience in a two-page column in the New England Journal of Medicine, and said she received positive calls and letters from around the world.

'People don't like the idea that science policy is not being based on evidence,' she said yesterday."

Jersey Loves Stem Cell Research

A Hart Research survey pegs support for a $250 million state bond initiative for stem cell research at 83%. Unless New York steps up to the plate with the huge Silver proposal, adoption of the New Jersey proposal would make New Jersey the second most generous place in the world to locate stem cell research programs.

RIP: Brown University Bioethics

Brown University was never really known as a place to learn bioethics as a profession.

But what Brown was known for in bioethics was its great research and writing, and a kind of leadership in bioethics that allowed it to create the very first "bioethics major" for those who are not yet ready to learn a profession - undergraduates. It was a brilliant concept - teach undergraduates about medicine, philosophy, the social sciences, and so many other things through the filter of ethical issues in biomedical science. And it worked. It was started by Dan Brock, a philosopher and bioethics pioneer who retired from Brown several years ago, taking positions first at NIH, then Harvard.

Brown couldn't get its act together to hire Brock's replacement. It had, instead, a very public implosion in bioethics, in fact, as the Brown philosophy department displayed the nearsightedness that has become typical of philosophy departments, declining to hire any among a pool of strong applicants for Brock's job because none of them were "good enough philosophers." It was the sort of decision that has characterized the past decade in philosophy, a ten year period that has seen the more-or-less total demise of the public role of academic philosophy.

So bioethics at Brown - easily one of the school's best-known areas of accomplishment - essentially died, and with it that incredible bioethics major, which Brown has announced will now die. The bioethics major wasn't just a precedent that a number of other schools would eventually follow, although it did establish that an interdisciplinary undergraduate program in bioethics might make educational sense. What it really represented was the pinnacle of Brown's greatness as an undergraduate institution - back when Brown was a top-10 school in the late 80s. It was a fabulous example of how the Brown "design your own major" program both attracted good students with good motivations and also taught them to combine science and humanities.

So, just like that, Brown disappears from bioethics. R.I.P.

Now Here's a Foundation for Bioethics: I Saw it on Star Trek!

From the Baltimore Sun, a story you have to read to believe: Loyola College (MD) professor Diana Schaub, advisor to President Bush, argues that cloning and stem cell research are bad because she saw it on Star Trek.

The show has "left me receptive to the view that mortality is, if not precisely a good thing, then at least the necessary foundation of other very good things," she wrote in an article last year. "There is something misguided about the attempt to overcome mortality."

Her interest in mortality and Star Trek could be regarded as the quirks of an academic if not for her position on the President's Council on Bioethics, a 18-member panel that advises Bush on some of the most polarizing subjects in society.

Yes, the President digs deep for ethical advice.
- Art Caplan

Linda Glenn: Why the Schiavo Case is Personal

End of life issues are what brought me into the field of bioethics. I lost my first husband, Jack MacDonald, to cancer in 1984. He died after a long struggle with leukemia. I’ve written about his life and his death in an article in the journal Healing Ministry: Three Lives, Three Deaths, Three Journeys: Explorations on Dying Well, September/October 2001. What I didn’t write in that article was our discussion about a feeding tube. Jack’s chemotherapy had caused nausea, mouth sores, and esophageal ulcers. His oncologist had ordered a feeding tube (a jpeg) and the surgeon was discussing the procedure with him and I at the bedside and my husband start to cry. He pleaded, “please no more…let me go.” The surgeon, a kindly old gentleman, left the room for us to talk. Stunned, I didn’t know what to say. Jack took my hand, grasped it and repeatedly said, “Please no feeding tubes, no more tubes… no more.” He paused, rested a moment, then smiled (as if he knew what I was thinking) and said, “And if you wait until I’m unconscious to put one in, I swear I will come back after I‘ve died and haunt you for doing that.” I cried and laughed at the same time and promised that I would never do that to him. After a while, I stepped into the hallway, where the kindly old surgeon was waiting for me. This was the same surgeon who had put in Jack’s Hickman catheter months earlier and he wanted to tell me that he understood and supported Jack’s decision, and that at this point, death was a friend to be welcomed. I loved Jack, I did not want to let him go; but I did not want to see him suffer anymore. Jack had realized the fight was over long before I did; he tried to reassure me that he wasn’t frightened and that he wasn’t in any pain, that I shouldn't worry. Ultimately, I honored his wishes; but it was, without a doubt, one of the most difficult decisions of my life. A few weeks later, Jack slipped into unconsciousness and died quietly, peacefully, without struggle on February 8, 1984, at 6:33 p.m. So, as you can imagine, I sympathize with Michael Schiavo. One of the more disturbing aspects of the political rhetoric is the hyperbole of the politicians and the Schindlers (Terri's parents) talking about how Michael is intent on “starving” Terri to death, as if she were a person who was totally healthy and fully functional. Is it possible that none of these persons have ever witnessed a hospice death? And hospice organizations have explained time and time again that someone at the end-of-life doesn’t experience thirst and hunger in the same fashion that healthy individuals do. The language the politicians and the Schindlers are using is intended to provoke and inflame. What also puzzles me is that these devout Christians seem to be ignoring the fact that, according to the Christian doctrine, death is not the ultimate evil, but eternal damnation is; to allow Terri to die would be to allow her to join with God in eternal life. Perhaps the Schindlers and the politicians don’t really believe in an afterlife? But this case is no longer about Terri’s wishes, or her husband attempting to honor her wishes, or a family dispute. It has become a political battle reflecting the torn state of the nation, about "being right and looking good" and who has control. --- Linda MacDonald Glenn

Majikthise : Lies Terri Schiavo's Parents Told Me

Majikthise rants on the Schiavo case, with her usual rigor and clarity - what a great blog. This post by the way did thousands and thousands and thousands of visits today - more than either the MSNBC or CNN top line Schiavo stories. More evidence that the cutting edge in bioethics-related journalism and commentary is quickly transitioning to blogs - people just want better, more incisive, full discussion, no matter their political affiliation.

Nope, the President's Bioethics Council Isn't Lobbying for Policy At All

Word today that Yuval Levin, the smart and very effective Executive Director of the President's Council on Bioethics, will now be Associate Director of the Domestic Policy Council. In the White House.

The neocons' new "bioethics legislative agenda" fell so flat that republicans rebuked it and democrats have now called for a formal congressional inquiry into the conduct of the Chair, Leon Kass. As we predicted, it looks like the neocons are now at least gesturing toward an executive White House bioethics policy agenda.

Peggy Noonan on Schiavo in Wall Street Journal

OpinionJournal columnist Peggy Noonan[thanks Jon Eisenberg] writes:

The supporters of Terri Schiavo's right to continue living have fought for her heroically, through the courts and through the legislatures. They're still fighting. They really mean it. And they have memories.

On the other side of this debate, one would assume there is an equally well organized and passionate group of organizations deeply committed to removing Terri Schiavo's feeding tube. But that's not true. There's just about no one on the other side. Or rather there is one person, a disaffected husband who insists Terri once told him she didn't want to be kept alive by extraordinary measures.

He has fought the battle to kill her with a determination that at this point seems not single-minded or passionate but strange. His former wife's parents and family are eager to care for her and do care for her, every day. He doesn't have to do a thing. His wife is not kept alive by extraordinary measures--she breathes on her own, is not on a respirator. All she needs to continue existing--and to continue being alive so that life can produce whatever miracle it may produce--is a feeding tube.

It doesn't seem a lot.

So politically this is a struggle between many serious people who really mean it and one, just one, strange-o. And the few bearded and depressed-looking academics he's drawn to his side.

Caplan on MSNBC on Schiavo

Writes Art Caplan on MSNBC.com:

We have now reached the endgame in the case of Terri Schiavo. Her husband, Michael, remains unwavering in his view that she would not want to live in the state she is in. Despite the fact that he has been made the target of an incredible organized campaign of vilification, slander and just plain nastiness, he remains unmoved. Even a pathetic effort to bribe him into changing his mind with the offer of $1 million did not budge him.

He says he loves his wife and will do whatever it takes to end an existence that he believes she would not want to endure. He thinks that she would want her feeding tube stopped and that she would wish to die rather than remain bed-bound in a nursing home in a permanent vegetative state for the rest of her days

The Schindler parents and their other children remain equally convinced that Michael is wrong.  They say that Terri would want to live, that she is not as brain-damaged as Michael contends, and that there is still hope for her recovery despite the fact that she has failed to show any real improvement in 16 years. They argue that there are still more treatments to be tried and that as a Catholic Terri would want to honor recent Papal teachings that feeding tubes should not be removed from those in permanent vegetative states.

Congress, or at least the pro-life constituency in the House and Senate, are doing their best to halt Schiavo's death. Last-minute bills invoking habeas corpus, a legal doctrine that has historically only been used for those held in federal custody, along with incredibly zany and inappropriate subpoenas to doctors and nurses requiring that Terri Schiavo be brought to Washington, show a level of grandstanding that is normally reserved for issues such as the use of steroids by major-league baseball players. 

So now that this miserable case is moving toward a resolution, what can be said about who is right and who is wrong? And what is the likely legacy of the battle over the fate of Terri Schiavo?

Ever since the New Jersey Supreme Court allowed a respirator to be removed from Karen Ann Quinlan and the U.S. Supreme Court declared that feeding tubes are medical treatments just like respirators, heart-lung machines, dialysis and antibiotics, it has been crystal clear in U.S. law and medical ethics that those who cannot speak can have their feeding tubes stopped.  The authority to make that decision has fallen to those closest to the person who cannot make their own views known. First come husbands or wives, then adult children, then parents and other relatives.

That is why Michael Schiavo, despite all the hatred that is now directed against him, has the right to decide his wife’s fate. The decision about Terri’s life does not belong to the U.S. Congress, President Bush, Rep. Tom Delay of Texas, Florida Governor Jeb Bush, the Florida Legislature, clerics in Rome, self-proclaimed disability activists, Operation Rescue founder Randall Terry, conservative commentators, bioethicists or Terri’s parents. The decision is Michael’s and Michael’s alone.

Remember the recent debate about gay marriage and the sanctity of the bond between husband and wife? Nearly all of those now trying to push their views forward about what should be done with Terri Schiavo told us that marriage is a sacred trust between a man and a woman. Well, if that is what marriage means then it is very clear who should be making the medical decisions for Terri — her husband.

But, isn’t it true that tough questions have been raised about whether he has her best interests at heart? They have. But, these charges against Michael Schiavo have been heard in court again and again and again. And no court has found them persuasive.

Has there really been careful review of this case? Is Terri really unable to think or feel or sense? Will she never recover? The flurry of activity in Washington and Tallahassee might make you think there has not. But that is not so.

There have been at least 11 applications to the Florida Court of Appeal in this case resulting in four published decisions; four applications to the Florida Supreme Court with one published decision (Bush v. Schiavo); three lawsuits in federal district court; three applications to the U.S. Supreme Court and nearly untold motions in the trial court. This has got to be the most extensively litigated "right-to-die" case in U.S. history. No one looking at what has gone on in the courts in this case could possibly deny that all parties have had ample opportunity for objective and independent review by earnest and prudent judges of the facts and trial court orders.

The time has come So, it is clear that the time has come to let Terri die. Not because everyone who is brain damaged should be allowed to die. Not because her quality of life is too poor for anyone to think it meaningful to go on. Not even because she costs a lot of money to continue to care for. Simply because her husband who loves her and has stuck by her for more than 15 years says she would not want to live the way she is living. If Terri is allowed to starve to death what next? Undoubtedly there will be efforts to pass laws to prohibit feeding tubes from being taken away from others like Terri in the future. And there may even be efforts made to push right-to-die cases out of state courts and into federal courts. These are bad ideas. We have had a consensus in this country that you have a right to refuse any and all medical care that you might not want. Christian Scientists do not have to accept medical care nor do Jehovah’s Witnesses need to accept blood transfusions or fundamentalist Protestants who would rather pray than get chemotherapy. Those who are disabled and cannot communicate have the exact same rights. Their closest family members have the power to speak for them. The state courts of this country have the power to review termination of treatment cases and have done so with compassion, skill and wisdom for many years. Those who would change a system that has worked — and worked well for the millions of Americans who face the most difficult of medical decisions — should think very hard about whether Sen. Bill Frist, DeLay, Sen. Hillary Clinton, Bush, Sen. John Kerry or the governor of your state needs to be consulted before you and your doctor can decide that it is time to stop life-prolonging medical care.

Cali legislators' power grab on stem cells

Last November, California voters overwhelmingly approved Prop. 71, which created the California Institute for Regenerative Medicine to fund stem cell research on a large scale. The initiative created an oversight committee that was to be made up of various stakeholders who were to be appointed by elected officials as well as representatives from the leading public academic institutions in the state. The result is a committee that includes representatives for a variety of disease advocacy groups, scientists, and a small representation from the biotech industry. This committee has been charged with creating rules and regulations for many aspects of this research, and many of the members of the Independent Citizens Oversight Committee (ICOC) have established track records of thoughtful deliberation on the topics that must be addressed.

One of the key features of Prop. 71 was the way that it insulated the funding and management of CIRM from external oversight or control by the California state legislature. For obvious reasons, when dealing with the tough issues that must be faced—how do we ensure adequate protection and consent for women who donate their oocytes for research, what kind of intellectual property rules should be developed so that we can create incentives for private funding of the development of therapies, without making treatments unaffordable, and at the same time bring a return on investment to California – these issues are best left to a group like the ICOC with assistance from experts (such as the working group that is to be created under terms of Prop. 71). The last thing we would want is for these issues to become fodder for political gamesmanship in the legislature.

Unsurprisingly, the state legislature is unhappy with the fact that they are not relevant to an important undertaking within the state. State Sen. Deborah Ortiz (possibly motivated by a desire for higher public office) has abandoned her long standing support of stem cell research and is attempting to subvert the expressed will of the people. She is partnering with a conservative opponent of stem cell research to try to enact a constitutional amendment that would allow the state to mandate precisely the sort of oversight that the ICOC is already in the process of developing. This may very well have a large amount of support in the legislature. For the most part, this seems to be simply a desire to be allowed to put their stamp on the efforts of the CIRM. Rather than give the ICOC a chance to see if the actual protections are adequate, Ortiz and her colleagues are trying to rush in so that they can have their fingerprints on the rules and regulations that are likely to be enacted anyway.

The one exception is legislation that is being proposed that would make it illegal for women to voluntarily serve as oocyte donors for the expressed purposes of research (since in practice these women take drugs to superovulate to produce a sufficient number of eggs). It is worth noting that women routinely do this in IVF, and in fact, there is nothing to prohibit women from continuing to produce eggs as surrogates for other people trying to reproduce. Apparently Ortiz believes that assisting reproductively challenged individuals is sufficiently important that women should be allowed to make this decision, but research is not important enough to allow anyone to expose themselves to risk.

This issue highlights the difficulty of turning these matters over to a legislature that fundamentally lacks knowledge or insight into the research process or into the details of the practice of medicine. The citizens of California wisely chose to pass a measure that had built in measures for oversight and public accountability—the fact that the legislature is left out is a poor reason to undo the will the people. - David Magnus

House Passes "Incapacitated Persons Legal Protection Act"

Last night, the House passed HR 1332. The bill undermines a consensus formed over six decades of jurisprudence and ethical reflection establishing the right of individuals or their surrogates to refuse medical treatment, and will erode the power of the States to adjudicate on such decisions where there is conflict. [more] - Dominic Sisti

Jews vs. Catholics on the Stem Cell Debate

'Oy Vitae' is the title for this William Saletan piece about religion and stem cell research. Saletan is doing a series of "I watched the bioethicist" pieces, most recently in the form of a bunch of adoring pieces about the Kass commission, which we blogged some time ago. In the current piece, also in Slate, he takes a travel diary approach to reviewing what he sees at a bioethics conference in Rome.

Tuesday, March 8
It turns out that Catholic faith in reason cuts both ways. It can dispel the yuck factor but can just as easily override our sense of goodness. That's the inadvertent lesson of Pacholczyk's morning presentation on women who "adopt"—i.e., implant and carry to term—IVF embryos. He asserts that such adoptions are intrinsically evil. I stare at him in disbelief, but he makes a case. Procreation is unitary; therefore, just as it's wrong to have sex without openness to pregnancy, it's wrong to get pregnant without sex. What if a woman has hired a clinic to cultivate IVF embryos and is on the table ready to have them implanted? Pacholczyk says she should "stop the train of evil"—get up and leave the clinic. The embryos must be left in limbo because they can't be "licitly" implanted.

Stem Cell Research in Russia:The Wild, Wild, Wild East

Moscow Times and Seattle Times spend some time this week on the surreal efforts in Russia to capitalize on stem cell mania among Russians and countless others around the world - all of whom are rushing to Russia to get 'treatments' from stem cell 'labs'. The Moscow Times piece starts in labs that aim at literal immortality - cryo facilities - and moves to an incredibly popular cosmetic adult stem cell procedure, and then concludes with an evaluation of embryonic stem cell work in Russia:

[Gennady Sukhikh] wears an expensive suit, complete with cuff links. He heads a laboratory where one piece of equipment with an unpronounceable name costs $150,000. He has two of them. When I was in Pushchino, the scientists there suggested I ask Sukhikh where he keeps his homogenizer — something like a meat grinder that minces human embryos. So I ask, where’s the homogenizer. The professor says that those are all lies, and starts talking about the laboratory’s scientific achievements. And there certainly are achievements: the 18-22 week-old embryos that Sukhikh works with have differentiated stem cells, meaning that they come from organs that are already formed. Retina cells can treat eye diseases, heart cells can be used to treat heart diseases, etc. The results are amazing, but not a single foreign magazine is willing to publish them, because, Sukhikh says, there is a strict ban in the West against using any aborted materials for clinical tests. It’s called bioethics. Then again, where Sukhikh gets 18-22 week-old embryos in a country where abortions after 12 weeks are illegal is also unclear.

In the professor’s laboratory, a rejuvenation therapy course using fetal cells costs about $8,000. There are 15 shots all at once: intravenously, into the muscle tissue, and under the skin of the stomach. By the way, if you dial the stem cell hotline, after a couple of questions you will be redirected to Sukhikh’s laboratory.

Any clinic using stem cells [in Russia] is acting illegally. Up to this point, the Health Ministry has not issued a single license to use stem cells, only for storage. Doctors say that thanks to stem cell therapy people can now start living up to 120 — without clinical tests we have to take their word for it.

Schiavo Resources: Timeline

Jeff Spike, Steven Haidar, Kathy Cerminara, Ken Goodman and others in bioethics in Florida put together some outstanding resources on the Sciavo case - including this timeline that is really, really useful - pretty much the best thing out there for nailing down what happened when. Their collection of links on Sciavo isn't half bad either.

Baby Sun to be Taken Off Life Support Today

Shiela Otto at Albany Med let us know that the AP/NYT is reporting that Baby Sun, who has a rare genetic disorder that caused his lungs and chest to be too small "to support life," is the subject of what appears to be a final ruling from a Houston judge. He ruled that the injunction preventing physicians from discontinuing Sun Hudson's life support will stand, and that at 2 P.M. today the life support at Texas Children's Hospital is to be discontinued.

Congressional Call for Inquiry into the Kass Matter

This was released today, again requiring little comment:

Bioethics Leader's Role In Setting Agenda Questioned

A member of Congress yesterday requested that the inspector general of the Department of Health and Human Services investigate Leon R. Kass, chairman of President Bush's Council on Bioethics. At issue is whether Kass acted inappropriately by helping to lead an effort to craft a legislative "agenda" for Congress that would place new restrictions on embryo research and other areas of reproductive science.

In the letter, Rep. Diana DeGette (D-Colo.) expressed concern that Kass may have misrepresented his private views as those of the council and that the council's resources may have been used in the effort. The effort brings "a cloud of suspicion" on the bioethics council, she wrote.

Kass said he has been very clear with people that his work for the new "bioethics agenda" for Congress -- still in its early stages -- is independent of his work for the council. "No council resources or council time was used," he said yesterday.

The inspector general typically takes two weeks to decide whether to take on a congressional request, a spokeswoman said.

Free Sex Sells

The Sun Times reports on a new study out in Fertility and Sterility, in which Tarun Jain and colleagues discuss a survey study that amounts to a poll of patients concerning whether or not they would choose the sex of their baby through preimplantation sex selection - if it were free. 41% said yes, and half of those said that they would use the procedure even if it were not free.