Thursday, October 22, 2009

An Open Letter to Future Bioethicists

I couldn't attend the ASBH meeting in DC this year, but apparently, Ezekiel "Zeke" Emanuel gave quite a controversial speech. While I don't have the text of the original speech, my guess is that it will be posted on the ASBH website at some point. But what I do have is Art Caplan's response, from which you can glean certain aspects of Zeke's speech -- I'll be interested to see/hear what kind of reaction this gets:

Facts alone won’t suffice for the field of bioethics

When you get old enough as a practitioner in any field young people seek your advice about what they should do if they want to do what you do. Given that my age seems to be increasing exponentially this has been happening to me with increasing frequency. Undergraduates, high school students, medical students, those pursuing degrees in law and nursing and even those interested in a mid-career change have been asking me what they need to do if they want to pursue a career in bioethics.

I have thought about their question quite a bit. I have come to realize that the answer is not the same for everyone who presents the questions. But, the core of the answer is pretty much the same; pursue masters level training in bioethics, acquire familiarity with key social science methods and tools, learn something about a particular sub-area of the health sciences or life sciences and, seek out every opportunity to fine tune your analytical and rhetorical skills by working with others on projects, research, consulting, or teaching activities. At its heart bioethics is an interdisciplinary activity and knowing how to work with others who do empirical, historical, legal and normative work is a must.

I had thought that advice to be sound until I heard Zeke Emanuel’s plenary address to open the most recent annual meeting of the American Society of Bioethics and the Humanities. Zeke espoused a vision for future bioethicists that I think is narrow, misguided and wrong. Now I say that in the spirit that Zeke himself enjoys—vigorous debate about a matter that both of us consider of the gravest importance.

Zeke Emanuel, a physician with a degree in political science as well, is one of the best and brightest scholars in the field of bioethics. His writings are solid and exemplify how best to integrate empirical inquiry with normative analysis. And the ‘shop’ he has run at the NIH Clinical Center for many years prior to moving into the Office of Budget and Management to work on health reform has done an outstanding job training younger scholars in the ins and outs of bioethical inquiry. These facts are precisely why Zeke’s recent plenary address to the American Society of Bioethics and the Humanities was so disappointing.

Zeke began his speech by joking that he knew much of what he had to say would annoy his audience. He then proceeded to argue that the future of bioethics and of bioethicists depended upon the field moving away from its high public profile in political, media and policy debate. What bioethics needs, he argued, is a beefing up of the shabby empirical foundation it now relies upon for its normative and policy claims.

The only way for bioethics to flourish, to paraphrase Zeke’s key contention, is if bioethicists spend less time in public places, more time mastering quantitative methods and publishing empirically grounded research on topics such as informed consent and surrogate decision-making at the end-of-life in peer-reviewed journals. He also went on to add that he did not find any merit in masters programs or PhDs in bioethics since without a more robust empirical foundation there could be little value in such training.

A young, wanna-be bioethicist, Zeke contended, would be best served seeking training in behavioral economics, psychology, decision theory or perhaps, he grudgingly conceded, sociology. Those armed with these tools could be expected to create the rigorous empirical foundation that bioethics now sorely lacks. Moreover, Zeke predicted, those willing to enter bioethics by heading down his prescribed path can expect generous financial support in the form of a pot of gold provided by a National Institutes of Health poised and eager to provide funding for rigorous research.

Before any prospective bioethicists answer Zeke’s clarion call for rigor by dusting off their applications to departments of economics and the behavioral sciences let me try to point out why Zeke’s vision about what bioethics should be is severely myopic as well as inadequate.

Zeke’s call for bioethics to take a sharp empirical turn has power because it is embedded in his talk of the importance of data and rigor. Both are indeed important for bioethics for a variety of reasons. But, neither will get bioethics where it needs to be if it is to serve health care providers, patients, policy makers or the public.

Bioethics, in my view, has a duty to engage the public with bioethical questions. The topics that bioethics grapples with—how to manage dying, the use of reproductive technologies, what to do to maximize the supply of transplantable organs and tissues, how best to promote clinical and animal research, what information you should expect to receive as a patient about your diagnosis and treatment—are of keen importance and legitimate interest to everyone, rich and poor; young and old around the globe. Part, albeit part, but nonetheless a crucial part of the bioethicists role is to alert, engage and help to illuminate ethical problems and challenges both old and new in the health and life sciences. Note I do not say to solve them nor to be seen as an authoritative source to whom bioethical issues ought be assigned. Rather bioethics’ role is both Socratic and prophetic—challenge, probe, question, warn, chastise, alert, and, as Zeke appreciates, irritate the powers that be when necessary.

In this role of moral diagnostician bioethicists must be responsible and strive for clarity in provoking public attention and debate. However, in this role data is often absent, in dispute or woefully poor. In addition questions loom large and pressing, passions run deep and fear and ignorance are omnipresent companions to doing bioethics with an eye toward helping the public understand issues and options. To engage in the public role that bioethics has and should enthusiastically continue to play in the media, policy, education, legislation and the law more tools are needed then empirical data no matter how rigorous or precise that data and the means used to generate it may be.

One must be able to present a cogent argument, know the areas of consensus that have been established about ethical issues over the history of medical ethics and bioethics, have a familiarity with health law, the infrastructure of policy and a grasp of political, cultural, literary, historical and social dimensions of what makes morality tick in various cultures. In the absence of these skills and knowledge data is completely and utterly blind, even useless. That is why it is precisely this skill set that the aspiring bioethicist should expect a masters program or a PhD program in bioethics to provide in order to gain the analytical and argumentative skills to competently and responsibly carry out the crucial public role bioethics has.

At the end of the day bioethics is a public activity which uses empirical inquiry and information as a tool. Admittedly empirical data are the most important of the tools in the bioethicists toolbox but still they are only one of the types of tools that are used.

Zeke’s vision of bioethics completely confuses the instrument—compiling reliable empirical information relating to normative issues—with the job—informing the public about problems, options and suggesting possible avenues for their resolution.

Zeke’s vision makes a bit more sense if one focuses on the role that bioethics plays within health care for professionals and institutions. There bioethicists often act as consultants or help formulate policy in ethically contentious areas working with providers and administrators and sometimes even payers. But even in this setting, while data is often essential it is never sufficient. Much of what occurs in doing an ethics consultation, for example, has as much to do with knowing how to mediate a dispute as it does a recitation of the facts of a case or having at hand well-supported information about the consequences of various courses of action. In many other situations the ‘facts’ are not known and won’t be known—ever because the human interactions are too complex. Bioethics at the bedside is very much an ethical, social and personal activity and while data has a part to play it has about as much a part to play as it does in our everyday lives and decisions which is to say—sometimes it matters, often it does not.

Before the young bioethicist is told to follow Zeke’s path of empirical positivism consider one other fact. We will not in our lifetime or that of our children ever achieve the kind of empirical certitude about much of anything of the sort that Zeke suggests will help future generations of bioethicists do their work. For every ethical problem for which sufficient data exists to point toward an answer a hundred blossom for which the data don’t. For every ethical problem for which sufficient data have been assembled to make an answer rational, sensible, or even self-evident there are many where behavior, policy and practice do not and cannot be made to conform to that data. Sometimes data alone can point toward an answer. Almost always, however, it is a prior moral argument that points toward the use to which data will, could and ought be put whether that be in medical practice or in medical ethics. And more often then not moral and value arguments simply moot data and that situation cannot be rectified by appeals to more data.

Zeke ended his remarks that day by acknowledging he was not really trying to end the public role or policy dimension of bioethics. Rather he was just trying to reorient the field’s priorities. I would suggest Zeke be heeded but only half-heartedly.

More data is needed in bioethics. More scholars with empirical quantitative skills are needed. That said, if the goal of bioethics is not simply to produce every-increasing amounts of NIH funded empirical data but rather to make a difference for the better in the lives of patients, their health care providers, scientists, and the general public then what we need and will continue to need are bioethicists who know their history, understand the power of cases, stories and analogical reasoning, can mount cogent, coherent arguments based on the best information at hand, who are comfortable talking with a state legislator, an NIH institute director, a TV talking-head, an athletic coach, a small town family doctor and a minister. Aspiring bioethicists would be well served to develop that full skill set and to seek out bioethics programs that can teach them to meet all of those needs.

Arthur Caplan, PhD
Sidney D. Caplan Professor of Bioethics
Emanuel & Robert Hart Director
Center for Bioethics
University of Pennsylvania

Monday, October 19, 2009

When Does Life Begin and End? -- the Debate Continues

Frederick Grinnell of Oxford University press in his blog post, Redefining Death — Again responds to the recent Nature editorial, “Delimiting death.” Grinnell’s post contributes to the ongoing public policy debate regarding the relationship between biological and spiritual life.

In addition to this post, there are several other articles that are of significance: Dr. James Bernat, neurologist at Dartmouth, wrote an article entitled Chronic Consciousness Disorders, Annu. Rev. Med. 2009. 60:381–92. The article notes that new functional neuroimaging techniques using PET and fMRI provide a new and complementary way to assess consciousness; that fMRI technologies are showing that 'persistent vegetative state' is not always clear cut -- that there is more of a continuum and that some 'PVS' patients are in fact closer to 'minimally conscious.' The author cites recent provocative studies suggesting that fMRI in unresponsive patients may detect evidence of conscious awareness when a careful neurological examination cannot.

Second, while doing research for my chapter on regenerative Nanomedicine, I came across this very interesting article, available at , entitled Shorting Neurons with Nanotubes by Gabriel Silva, a professor of bioengineering at UC San Diego. The abstract explains that new insights are emerging about the interactions between brain cells and carbon nanotubes, which could eventually lead to the development of nanoengineered neural devices, i.e., possible neural prostheses.

Finally, there are excerpts on CNN of Dr. Sanjay Gupta’s Cheating Death, available at, which explores novel applications of therapeutic hypothermia to prevent injury to the brain, along with other stories of life-saving medical discoveries.

These articles and recent findings all have profound implications for end-of-life decisionmaking. While recently, an editorial in Nature magazine called for expansion of the definition of death in order to increase organ donation ( ), it seems that between the new diagnostics, the potential for neuro-prosthetics, and what we are finding out about 'cheating death’, that we should not necessarily be expanding the definition of death, but realizing that we that are expanding the boundaries of life. In doing so, we need to consider the implications for an aging population, as well as the societal and environmental impacts.

Sunday, October 18, 2009

Progress in Bioethics - MIT Press

Bioethics has become increasingly politicized over the past decade. Conservative voices dominated the debate at first, but the recent resurgence of progressivism and the application of its core values (social justice, critical optimism, practical problem solving) to bioethical issues have helped correct this ideological imbalance. Progress in Bioethics is the first book to debate the meaning of progressive bioethics and to offer perspectives on the topic both from bioethicists who consider themselves progressive and from bioethicists who do not. Its aim is to begin a dialogue and to provide a foothold for readers interested in understanding the field.

The chapter authors, leading scholars in the field, discuss the meaning of progressive bioethics, the rise of conservative bioethics, the progressive stance toward biotechnology, the interplay of progressive bioethics and religion, and progressive approaches to such specific policy issues as bioethics commissions, stem-cell research, and health care reform.

The arrival of a new administration in 2009—one that is open to progressive ideas and rejects ideological interventions in science—makes this book and its new approach to bioethics relevant and timely.

Contributors: Sam Berger, Daniel Callahan, Arthur L. Caplan, R. Alta Charo, Marcy Darnovsky, John H. Evans, Kathryn Hinsch, James Hughes, Richard Lempert, William F. May, Eric M. Meslin, Jonathan D. Moreno, Michael Rugnetta, Paul Root Wolpe, Laurie Zoloth


Friday, October 16, 2009

Kudos to Susan M. Wolf for her election to the IOM

You may have noticed that we have been on hiatus, while we revamp and reorganize our blog, but I wanted to take this opportunity to give credit where credit is due: One of my heroes, Susan M. Wolf, has been elected to the prestigious Institute of Medicine. She is the McKnight Presidential Professor of Law, Medicine & Public Policy and the Faegre & Benson Professor of Law at U of MN, the founding Director of the Joint Degree Program in Law, Health & the Life Sciences and the founding Chair of the Consortium on Law and Values in Health, Environment & the Life Sciences. She is also a professor of medicine in the University's Medical School and a faculty member in the University's Center for Bioethics. She is also the author of Feminism and Bioethics: Beyond Reproduction, which was one of the first books that I read when I went back to school to get my degree in Biomedical Ethics. She has served as an inspiration to many in the field and she richly deserves this recognition and honor.

A Heartfelt Congratulations and Kudos, Susan!

Saturday, October 10, 2009

The French health care system

Many countries envy the French health care system. The difficult reformation that is involved itself to the United States reminds me the fight of the French workers to obtain an equitable system. Nevertheless, the reformation of the United States is wished by the President Barack Obama and this decision seems to divide the American people, even beyond the borders.

Interesting it seem to we to retrieve the big points that do the force of the French system but equally not to conceal the problems.

The French health care system works on the basis of the solidarity between the active persons. Every month, the employees see a part of their salary versed to the State to finance the retirements and the social security besides the state ordinary taxes.

The social security is the strong point of the French health care system. The affiliated employees inform the social security of their health problems (benign diseases, engrave, disability, work accident). The social security is a cashdesk that will transfer the money of the contributions of salary to its affiliated employees according to the disease that they meet.

The cares opening right to repayment:
Medical consultations with a nonspecialized doctor or specialist
consultations and dental cares
purchases of medicines
As a whole of these medical practices, the cares will be refunded for a party. If the employee wishes to be more refunded, it is necessary for him to be affiliated with a mutual insurance company health.

Besides the cares, the social security towards a daily compensation to the employees on vacation diseases, in stop of work and to the women on vacation maternity.

The affiliation to a mutual insurance company health is not obligatory. On the other hand, to be affiliated with the social security is obligatory. Certain jobs have their special insurance cashdesk but it works as the social security.

The social security offers a cover health to the body of the employees and retired. Working thanks to the salaries of the active persons, the social security is today in deficit. More the unemployment in France is important, more the social security and the French health care system can be put in difficulty and to rediscover itself in a precarious position.

The social security is an equitable system that the employees want absolutely preserved.

The French health care system resting on the social loads, it did not take in load the persons in precarious position, without job and sometimes without residence. With the emergence of the precariousness, it was set up the universal healthcare coverage. It takes account of the inexistence or weakness of income and allows the free access to the medical cares.

It is certain that even if the French healthcare system is equitable, it knows malfunctions. But it stretches to respect the constitutional texts requiring the care access to all.

The system of American health seems to cost very dear. Can a common cash, like french social security, be a solution?

In French:
De nombreux pays envient le système de santé français. La réforme difficile qui s’engage aux Etats-Unis me rappelle la lutte des ouvriers français pour obtenir un système équitable. Toutefois, la réforme des Etats-Unis est souhaitée par le Président Barack Obama et cette décision semble diviser le peuple américain, même au delà des frontières.

Il nous semble intéressant de rapporter les grands points qui font la force du système français mais également ne pas occulter les problèmes.

Le système de santé français fonctionne sur la base de la solidarité entre les personnes actives. Chaque mois, les salariés voient une partie de leur salaire versée à l’Etat pour financer les retraites et la sécurité sociale outre les taxes étatiques usuelles.

La sécurité sociale est le point fort du système de santé français. Les salariés affiliés informent la sécurité sociale de l’ensemble de leurs problèmes de santé (maladies bénignes, graves, invalidité, accident du travail). La sécurité sociale est une caisse qui va reverser l’argent des cotisations de salaire à l’ensemble de ses salariés affiliés en fonction de la maladie qu’ils rencontrent.
Les soins ouvrant droit à remboursement:
consultations médicales chez un médecin généraliste ou spécialiste
consultations et soins dentaires
achat de médicaments
Dans l’ensemble de ces pratiques médicales, les soins sont remboursés pour une partie. Si le salarié souhaite être remboursé en totalité, il lui faut être affilié à une mutuelle santé qui versera la somme restante à hauteur des plafonds imposés.

Outre les soins, la sécurité sociale verse une indemnité journalière aux salariés en congés maladies, en arrêt de travail et aux femmes en congé maternité.

L’affiliation à une mutuelle santé n’est pas obligatoire. En revanche, être affilié à la sécurité sociale est obligatoire. Certains emplois ont leur caisse spéciale mais elle fonctionne comme la sécurité sociale.

La sécurité sociale offre une couverture santé à l’ensemble des salariés et retraités.
Fonctionnant grâce aux salaires des personnes actives, la sécurité sociale est aujourd’hui en déficit. Plus le chômage en France est important, plus la sécurité sociale et le système de santé français peut être mis en difficulté et se retrouver dans une situation précaire.

La sécurité sociale est un système équitable que les salariés veulent absolument conservés.

Le système de santé français reposant sur les charges sociales, il ne prenait pas en charge les personnes en situation précaire, sans emploi et parfois même sans domicile. Avec l’émergence de la précarité, il a été mis en place la couverture maladie universelle. Elle tient compte de l’inexistence ou de la faiblesse des revenus et permet aux bénéficiaires d’accéder à l’ensemble des soins gratuitement.

Il est certain que même si le système de santé français est équitable, il connaît des dysfonctionnements.
Mais il tend à respecter les textes constitutionnels exigeant l’accès des soins à tous.

Le système de santé américain semble coûter très cher. Une caisse commune comme la caisse de sécurité sociale lui permettrait-elle de faire des économies?