Bioethics and the Worst Case Scenario

BioEdge has an interview with George J. Annas, author of the new Worst Case Bioethics: Death, Disaster and Public Health. Here's a clip:

BioEdge: Worst case scenarios aren’t exclusively bioethical – the Y2K bug springs to mind – so is there something in our culture which encourages us to frame the future as Doomsday? Is it the legacy of the Cold War and mutually assured destruction, or something deeper?

GJA: It has to do with our deep fear of death. The first sentence of the book is, “Death is almost everyone’s personal worst case scenario.” This, in turn, makes “saving lives” a universal justification for action—both in medicine and in government. Mostly, we deal with our mortality by denial, by not dealing with it. We simply put our faith in modern medicine and scientific progress that somehow we will be provided with new technologies that will permit us to postpone death indefinitely—or at least for a long time. In effect, we fight worst case scenarios by imagining best case scenarios.

BioEdge: What are the effects of US health policy moving away from public health to public security?

GJA: US health policy has never been based on public health and population-based prevention—but rather on individuals and treatment of their illnesses and injuries, at least those who can afford to pay. To the extent that concerns over bioterrorist attacks and pandemic flu and SARS have commanded attention and at least some resources on public health, we have been responding by adopting a military national security model – complete with public health officials in military uniforms. This has encouraged our government to predictably concentrate on 19th century interventions like mandatory vaccinations and quarantine when an epidemic threatens, rather than scientific information, and at least some public health officials still expect Americans to simply “follow orders” in a public health emergency rather than make informed decisions. This is delusional.

Bioethics Panel Appointees.

Also from Michael Cook at BioEdge, a bit on the new appointees to the Presidential Commission for the Study of Bioethical Issues:

US President Barack Obama has appointed 10 more bioethics advisors, bringing membership of the Presidential Commission for the Study of Bioethical Issues up to 12. The appointees join the current chair, Amy Gutman, and vice-chair, James Wagner.

They are a diverse group. Lonnie Ali is the wife of Muhammed Ali; Anita L. Allen is a law professor at the University of Pennsylvania; Barbara Atkinson, a pathologist, is executive dean of the University of Kansas School of Medicine; Nita A. Farahany, of Vanderbilt University, is an expert in the legal and ethical consequences of neuroscience; Alexander Garza is the Assistant Secretary for Health Affairs and Chief Medical Officer for the Department of Homeland Security; Christine Grady is head of the Department of Bioethics at the National Institutes of Health Clinical Center; Stephen L. Hauser is a neuro-immunologist at the University of California San Francisco; Raju Kucherlapati is a professor of genetics at Harvard; Nelson Michael is the head of the US Military HIV Research program; Daniel Sulmasy is a Franciscan priest who works at the MacLean Center for Clinical Medical Ethics at the University of Chicago.

News of the appointments was not an item which attracted much attention in the media. However Summer Johnson, of the American Journal of Bioethics, was disappointed by a distinguished, but unimaginative, selection:

“…if nothing revolutionary happens in the world of scientific research over the next 3 years, then this commission will do fine. But history tells us this is unlikely to be the case. Moreover, this list of members really lacks creativity in terms of what a bioethics commission COULD have done. What about a systems biologist or nanomedicine researcher (in any one of the many disciplines of nanomedicine)?”

Have We Learned Anything for the Case of Terri Schiavo?

What has the case of Terri Schiavo taught us?

That's the question asked of Glenn McGee, the John B. Francis Chair at the Center for Practical Bioethics in a podcast, moderated by Lorell LaBoube at Practical Bioethics.

It's a quick 20 minute listen which raises some of the following points:

PVS is not curable; what does it mean to wait for a miracle?

Why was Schiavo's eating disorder largely ignored in the discussion? and isn't it ironic that the fight was for forced feeding?

There are 30,000 PVS patients in the US. Why did this case come to the fore?

We've learned little from the Schiavo case because the primary issues regarding ethics of indefinite artificial sustainment were largely skipped over.

Who pays for indefinite care?

Was the Family Guy episode that used humor to address Schiavo's condition too soon?

Advanced directives largely don't work because they are largely still unused.

Is indefinite (futile) care in line with our pragmatic, Judeo-Christian heritage?

Folk Biology: The Yuck Factor and the Wisdom of Repugnance.

Also from BioEdge, a fantastic little piece on what makes us squirm about things like cloning, homosexuality, incest....

Unfairly, perhaps, but the most enduring legacy of bioethicist Leon Kass to his colleagues may be a phrase he used in 1997 to argue against human cloning, “the wisdom of repugnance”. That’s the Saks Fifth Avenue coinage; its CostCo cousin is “the yuck factor”. Both have been ridiculed as a backward and unintellectual attempt to slow technological progress by appealing to irrational feelings of disgust. Public policy should be based on rationality, not evolved responses to the dangers of spiders and copraphilia. More than a decade later the former head of Council on Bioethics under President George W. Bush is still being attacked over the concept’s validity.

In the journal Bioethics, the Finnish scholar Jussi Niemela fires another salvo at Kass and his supporters. Kass argued that “repugnance is the emotional expression of deep wisdom, beyond reason’s power fully to articulate it”. Niemela counters that it is no such thing. Visceral reactions to IVF, cloning, incest, or even homosexuality are merely “cognitive violations” of “folk biology”. We feel disgusted because we have instinctive, biologically-evolved responses to dangerous foods and pathogens, not because an option is morally wrong. Furthermore, to make sense of the world, human beings use “folk biology” which projects onto living beings conventional structures of behaviour. Because the mechanical and asexual aspects of cloning clearly violate these, it is strange and unfamiliar, ie, a cognitive violation.

What politicians and the public need to grasp, argues Niemela, is that “the yuck factor” is basically the rationalization of superstitions. “If something is not easy to grasp by folk-theoretical reasoning, that doesn’t necessarily mean it is bad or even dangerous: it’s just something that contradicts natural intuitions. It appears that things that are not easily understood by utilizing folk-theoretical thought create a fertile soil for argumentation that strives to cause fear and disgust.”

Niemela’s is merely the latest instalment in the battle of emotivism in bioethics – whether moral judgements are just emotional reactions or acknowledgements of universal laws of human nature. It is a debate as old as the 18th century philosopher David Hume. Stay tuned for further controversy.

Repugnance and the Formation of a Society's Ethics and Morality.

From Bryan Caplan at Library of Economics and Liberty. This post may at first seem off my beat but what causes me to post it is not only the contention of the article itself - that repugnance is often conditioned and should not be used, as Leon Kass argues, as a justification for establishing ethics or morality - but because it gets at ideas of changing morality and medical ethics. Remember way back when a heart transplant was roundly criticized as "playing god?"

Don't miss the comments. I think they get at much of what I follow in medical ethics, changes in acceptable moral views, and attempts by religious individuals and entities to stop the clock in a period (of time) that they, without memory or historical context, assume represents moral clarity. The "hell in a handbasket" argument made by those who oppose legalization of certain medical treatments (read, for the sake of my issues, "pro-life" groups who oppose sterilization, fertilization, abortion, or aid in dying) can be said to represent an area of morality established on "repugnance."

I finally read that instant classic of bioethics, Leon Kass' "The Wisdom of Repugnance." While its proximate goal is to urge a ban on human cloning, Kass advances a much more general ethical position:

[R]epugnance is the emotional expression of deep wisdom, beyond reason's power fully to articulate it. Can anyone really give an argument fully adequate to the horror which is father-daughter incest (even with consent), or having sex with animals, or mutilating a corpse, or eating human flesh, or even just (just!) raping or murdering another human being? Would anybody's failure to give full rational justification for his or her revulsion at these practices make that revulsion ethically suspect?

Given my ethical intuitionism and my view that moral theories should begin with simple concrete cases, you would think that I would have to grant his point. I do not. Our two positions are actually quite different. I think people should calm down and think rationally about ethical questions. Kass almost seems to think that people do their best moralizing when they're overcome with emotion. Listen to him try to angry up his readers' blood:

People are repelled by many aspects of human cloning. They recoil from the prospect of mass production of human beings, with large clones of look-alikes, compromised in their individuality; the idea of father-son or mother-daughter twins; the bizarre prospects of a woman giving birth to and rearing a genetic copy of herself, her spouse or even her deceased father or mother; the grotesqueness of conceiving a child as an exact replacement for another who has died; the utilitarian creation of embryonic genetic duplicates of oneself, to be frozen away or created when necessary, in case of need for homologous tissues or organs for transplantation; the narcissism of those who would clone themselves and the arrogance of others who think they know who deserves to be cloned or which genotype any child-to-be should be thrilled to receive; the Frankensteinian hubris to create human life and increasingly to control its destiny; man playing God.

But the most amazing sentence in Kass' whole piece almost flies under radar:

Revulsion is not an argument; and some of yesterday's repugnances are today calmly accepted -- though, one must add, not always for the better.

It's quite an admission. Even if his last clause is dramatic understatement, Kass still acknowledges that calm acceptance of yesterday's repugnances is sometimesfor the better. And on reflection, that list is very long: vaccination, girls, dissection, religious toleration, kissing, C-sections, inter-racial marriage, paying for parking, colonoscopies, amputation of gangrenous tissue (double yuck), sex, Indian food, male nurses... Some of these continue to disgust me - I feel faint if I even look at a syringe. Still, if I think I need a shot, I try to calm down and do what I think - not feel - is the right thing.

My point is not that repugnance is less than 100% reliable. 100% reliability is a silly standard. My point is that repugnance is habitually unreliable. In any case, there are several useful ways to test the wisdom of repugnance. Under what conditions do we justifiably discount repugnance? For starters:

1. When the repugnant thing is unfamiliar. In retrospect, new things often seem repugnant merely because we haven't experienced them before. When a hero kisses a heroine in a movie, my sons flee in horror. Once they have personal experience, I predict their views will change.

2. When a repugnant thing involves bodily fluids and the inner workings of the human body. There's no way around it - dissection is gross. Fortunately, some people are rational enough to overcome their natural disgust, secure in the knowledge that (a) the dead feel no pain, and (b) they might learn how to help the living.

3. When other people encourage our repugnance. If a classroom full of kids see you eat a chocolate-covered bug, they'll all go, "Eeew!" in unison. They'd probably be less judgmental one-on-one.

4. When we easily get used to it. While deliberate exposure tends to reduce our negative emotions about almost anything, we get used to some things much more quickly than others. Why? Because we often learn that, all things considered, it isn't nearly as bad as we imagined. Think about how completely we've adjusted to widespread in vitro fertilization. It's a repugnant procedure to describe, but when you see happy parents holding their "test-tube baby," the folly our initial repugnance is plain. Compared to the great good of life, a little yuckiness is nothing.

Frankly, I don't see how Kass could deny my points. He almost surely agrees that mankind has repeatedly done the right thing by putting repugnance aside. I'm equally sure, though, that he'd insist that we should stick with our gut reaction to human cloning.

Yet notice: Human cloning fits all four criteria for when we should discount our repugnance! It's totally unfamiliar; it involves bodily fluids and the inner workings of the human body; other people (like Kass himself) encourage our repugnance; and it's pretty obvious that if clones walked among us, we would get used to them lickety-split. If Kass himself met a clone, I doubt he'd tell him, "You should never have come into existence." And before long, he probably wouldn't even say such things to himself.

Wesley J. Smith Predicts Bioethics News for 2010; I Summarize.

You can catch the noisy predictions here. But let me summarize it for you:

The US is going to hell in a handbasket. Abortion will be required! Human stem cells will be murdered! Aliens will be cared for! Montana (aid in dying case) will be upheld! Connecticut (similar case) will fail. The horrors of Obamacare will not yet show themselves but we will all fear for our lives! Rationing is coming! Hippocratic medicine is dying! Pharmacists and others in the medical profession will lose their conscience protections! Related court cases will sky-rocket and "activist judges" will inadvertently damn providers to hell for killing people (with the pill)! Fortunately, he says, the Freedom of Choice Act won't pass but don't think the "culture of death" won't work double time to kill every last one of "us!"

What the purpose of this exercise is, I'd be loathe to surmise. But it does rile the troops. Which is exactly what WJS is good at. Scaring the bejesus out of the lesser informed. If he can appeal to one's self-righteous desire to impose their beliefs on the whole of society, expect him to take the chance.

Obama's Bioethics Under Fire for Not Imposing Ideologically Driven Science.

From Catholic News Agency:

Fr. Thomas J. Euteneuer, President of Human Life International has called for Americans to be watchful of President Obama's appointments to the new Presidential Commission for the Study of Bioethical Issues, claiming the unlikelihood of the advisors to share the pro-life sentiment of the majority of Americans.

On November 24, President Obama signed an Executive Order creating the new Presidential Commission for the Study of Bioethical Issues, whose purpose is to advise the President on concerns emerging from advances in biomedicine and related areas of science and technology.

"As our nation invests in science and innovation and pursues advances in biomedical research and health care, it’s imperative that we do so in a responsible manner," said President Obama. "I am confident that Amy and Jim will use their decades of experience in both ethics and science to guide the new Commission in this work, and I look forward to listening to their recommendations in the coming months and years."

Obama is referring to Amy Gutmann, president of the University of Pennsylvania to and James W. Wagner, president of Emory University, who will serve as chair and vice-chair of the new commission, respectively. Research on the two found that many of Gutmann's publications regard democratic theory, while Wagner studied engineering and materials science before becoming involved in academic administration.

The other 11 appointments to the commission have yet to be announced.

"Does anyone think that even one person on this commission will strongly represent the majority of Americans' pro-life views?" said Fr. Euteneuer. "We saw what the president thinks of bioethicists who disagree with him when he fired the previous presidential bioethics commission the day after they lodged a complaint about his policies."

Last June, Obama suddenly and without warning disbanded Bush's bioethics commission, who's charter was set to expire in September, without allowing the scheduled final meeting of the council. In March, the council had released a statement disagreeing with Obama's position on stem cell research.

Last Wednesday, Obama authorized embryonic stem cell research for 13 lines of stem cells obtained from the destruction of fetuses "left over" from IVF treatments.

"We already know what the president is going to do. He is going to find eleven utilitarians who will carefully furrow their scholarly brows as they tell us that we just have to get used to the idea that some lives aren't worth as much as others," said Rev. Euteneuer. "Then he is going to find two 'pro-life Christians' or other religious types who provide religious-sounding rationalizations for this assault on life."

Euteneuer noted that every one of Obama's current advisors who has written on bioethical issues "is pro-abortion, pro-embryonic stem cell research, pro-euthanasia, pro-assisted suicide. Bioethicists like this strive to create a ‘Brave New World’ for the weakest and most vulnerable of those created in God’s image: those who doctors used to swear an oath to protect."

Oh Margaret Somerville, It's Not About Your Dignity, It's About My Suffering!

For three decades women argued that abortion should be legal because a woman should have a choice over her body and reproduction. Because of this stance on abortion, the "pro-life" camp was able to steal the moral thunder of the argument.

Now we've got a culture where women are afraid to admit they've had abortions, where the church is ceded the moral high ground on the issue even through their policies subjugate women, particularly the poor. The framing of abortion has become such that Hillary Clinton has said we should work to decrease the number of abortions, missing the point that there is no moral ground for those who argue for it's illegalization.

When I hear arguments for aid in dying being based on dignity, I get a little nervous, afraid that the same framing we have seen around the abortion issue (and what has perpetually kept us on the brink of losing abortion rights) could be applied - is being applied! - to end of life rights.

In the below excerpt from an article in Canada's The Gazette, hyper-conservative bioethicist Margaret Somerville (no same-sex marriage, no reproductive rights for women, no patients' rights...) takes apart the idea of dignity in her defense of imposing religious ideology on patients.

Despite the oral arguments in the recent Baxter v. Montana case, I would say that framing aid in dying as an issue of dignity is going to get us nowhere in this global discussion. We all define dignity in very subjective ways.

What people are contesting in the fight for aid in dying is: Who Has Jurisdiction Over Suffering? Of course suffering comes in many forms. But no one but the patient can tell you what is suffering and what is not. And no one but the patient can tell you what suffering they can handle and what they can not. The problem with Somerville's argument is that she wants to defend the state's or the church's or the medical professions jurisdiction over suffering. These institutions have a vested interest in telling patients what they will and won't suffer for reasons that include: punishment, religious redemption, and professional pride and profit.

Don't miss me here, I'm talking about institutions, not individuals. If someone tells you they will decide how much you're going to suffer, no number of claims for human dignity are going to stop them. Suffering is sacred and powerful.

Let's make certain that the aid in dying movement doesn't lose site of the role suffering must play in this discussion; not just dignity, personal rights, autonomy, and choice. I would hate for those with other purposes to frame the argument in a way that sets back the movement thirty years.

Euthanasia advocates argue respect for human dignity requires that euthanasia be legalized and opponents of euthanasia argue exactly the opposite, that respect for human dignity requires it remain prohibited. In short, the concept of human dignity and what is required to respect it is at the centre of the euthanasia debate, but there is no consensus on what we mean by human dignity, its proper use, or its basis.

American political scientist Diana Schaub says "we no longer agree about the content of dignity, because we no longer share ... a 'vision of what it means to be human'." She's correct. So what are the various interpretations of dignity and what can they tell us about "what it means to be human"?

Intrinsic dignity means one has dignity simply because one is human. This is a status model - dignity comes simply with being a human being. It's an example of "recognition respect" - respect is contingent on what one is, a human being.

Extrinsic dignity means that whether one has dignity depends on the circumstances in which one finds oneself and whether others see one as having dignity. Dignity is conferred and can be taken away. Dignity depends on what one can or cannot do. Extrinsic dignity is a functional or achievement model - dignity comes with being able to perform in a certain way and not to perform in other ways. It comes with being a human doing. This is an example of "appraisal respect" - respect is contingent on what one does.

These two definitions provide very different answers as to what respect for human dignity requires in relation to disabled or dying people, and that matters in relation to euthanasia.

Under an inherent dignity approach, dying people are still human beings, therefore they have dignity. Opponents of euthanasia believe respect for human dignity requires, above all, respect for human life and that while suffering must be relieved, life must not be intentionally ended. Taking life, except where that is the only way to save life as in justified self-defence, offends human dignity. That is why capital punishment is wrong and why euthanasia is wrong.

In fact, the original primary purpose of the concept of dignity was to ensure respect for life. It's ironic that it has been turned on its head by pro-euthanasia advocates to promote exactly the opposite outcome.

Under an extrinsic dignity approach, dying people are no longer human doings - that is, they are seen as having lost their dignity - and eliminating them through euthanasia is perceived as remedying their undignified state.

Pro-euthanasia advocates argue that below a certain quality of life a person loses all dignity. They believe that respect for dignity requires the absence of suffering, whether from disability or terminal illness, and, as well, respect for autonomy and self-determination. Consequently, they argue that respect for the dignity of suffering people who request euthanasia requires it to be an option.

WJS Warned of Gloom and Doom; We Got Doom.

Wesley J. Smith, the prolific conservative who writes about the sweep of the "culture of death" across the country, summarizes the wins and losses for "pro-life" groups.

What he says about the Obama administration is telling:

Indeed, I worried that "the people now in power have views that are inimical to the sanctity and equality of human life."

I still believe that is true. But I underestimated the resiliency and determination of those who oppose the development of what is sometimes called a culture of death. Thus, the year didn't go nearly as badly as I feared.

Brawling Bioethicists? How Health Care Reform is Creating a Schism in the Field of Bioethics.

From MercatorNet, an article on a developing schism among bioethicists. (I refer to this in my latest article for AlterNet on rationing of health care.) According to Michael Cook, the field is in crisis.

This was sparked by an address by Dr Emanuel to the annual conference of the ASBH [American Society for Bioethics and Humanities]. He argued that what bioethics needed was more statistics. Without a solid grounding in quantitative methods, bioethicists simply aren't much good. Ideally, aspiring bioethicists should study behavioral economics, psychology, decision theory or sociology. There should be less public discussion and more number-crunching. And, he implied, it is number-crunching bioethicists who will be getting the precious government funding which enables them to stay in business.

America's best-known bioethicist, Arthur Caplan, of the University of Pennsylvania, was so irritated that he almost immediately posted an open reply. He responded that a bioethicist must be a "moral diagnostician". "A crucial part of the bioethicist's role is to alert, engage and help to illuminate ethical problems and challenges both old and new in the health and life sciences." Empirical data are just one tool in the bioethical toolbox.

Emanuel's address has not been published on the internet yet. But this very public dust-up provides more ammunition for those who believe that the field of bioethics is in crisis. When the most quoted US bioethicist says that the philosophy of the most powerful US bioethicist is "narrow, misguided and wrong", what are laymen to think? It certainly gives them no confidence whatsoever that President Obama is getting the right bioethical advice.

And Cook goes on to explain the schism as a loss of philosophical reasoning in what has become a statistics-focused profession. To make his point, he starts with the definition of bioethics:

For so familiar a word, "bioethics" has a short history. It entered our dictionaries as late as the 1970s. The English word cobbles together the Greek words for life, Bios, and for moral character, or custom, Ethos. So huddled under the umbrella of a single term are two related but distinct intellectual disciplines, metaphysics and ethics. Bioethics is inexplicable without them, just as biochemistry is inexplicable without biology and chemistry.

Let's look at metaphysics first. The ancient Greek philosopher Aristotle coined the word. He wanted to investigate whatever underlies or lies beyond (meta) the physical world of what we can see and touch (physica). So metaphysics deals with the most fundamental questions of experience: what is reality? what does it mean to be? what does it mean to be a person? what is life? Bioethics "works" only if its metaphysics is correct, that is, if its understanding of life, humanity and personhood corresponds to reality. An astrophysicist who bases all of his calculations on the equation e=mc³ will ultimately reach the wrong conclusions, no matter how sophisticated his mathematics.

He concludes that the profession has lost credibility because many in it rely on statistical analysis to come to conclusions.

I humbly disagree. How one parses statistics requires an ethics. How many times do "pro-life" groups use skewed statistics to trumpet that approval of abortion has slipped in the US? Or that abortion is linked to cancers in women? Or that abortion has declined in the US because of their efforts? Statistics, of course, can be - and most often are - used for one's own purposes, in this case control of women's reproduction and role in society. (There are so many more examples of the use of skewed statistics but the "pro-lifers" are currently the most egregious.)

Bioethicists are getting push-back from their own for a number of reasons. No one wants to have their profession vilified in the public square. Many are wary of statistical (and ethical) support for "rationing" of health care. As I write in my latest article for AlterNet, "rationing" exists and will always exist because resources are finite. (I conclude that much of the expense of end of life care can be decreased by simply giving the elderly and terminal patient a choice in how they die.) How to best use those resources in an egalitarian and ethical way is what is at issue. Denial that "rationing" exists (or has to exist) is certainly easier than facing the harder questions of how to mitigate its effects.

The greatest detractors from such a discussion often rely on a faith system, a religious code; or a capitalistic assessment of medical resources. Either God or the free market should decide who gets what treatments, medicines and services. The former relies on a moral system that is dominant in our culture, that adhered to by Catholics and Evangelicals, but is not representative of all society. The latter relies on a cultural value held by fiscal conservatives fearful of a regulating government, the profit-motivated medical industry, and Republicans afraid of "the spread of socialism." Let private companies pick and choose what services individual patients get and the free market, this group says, will take care of the ethics.

For the bioethicist charged with finding an egalitarian way to deliver services, neither code works. The first discludes non-believers or other believers. The second favors the wealthy or entitled. Neither answers the over-all cost question.

Saying that neither of these dominant theories works is not popular nor easy. And this is root of the crisis in bioethics; not a loss of philosophy as Cook contends, but a profession trying to save itself from the criticisms it sustains when wading into a contested arena.