Policy Review no. 159 (February 1, 2010)
The Limits of Bioethics
Sally Satel
Where the profession ends and politics begins
On valentine’s day two years ago, Paul Wagner, a 40-year-old Philadelphia purchasing
manager, gave Gail Tomas, a total stranger, his left kidney. Wagner met Tomas, a 65year-old former opera singer, on the internet, at MatchingDonors.com. Her daughter had
posted an ad asking some magnificent stranger to save her mother. “It was there that I
read about a lady in my city, Philadelphia, who was desperate for help,” Wagner said. “It
has been one of the best decisions I have ever made.” This story had a happy ending. Yet
it unfolded amid controversy over whether ethical norms were violated.
Exasperated by the efforts of sick and needy patients to find donors for themselves, Dr.
Douglas Hanto, a transplant surgeon at the Beth Israel Deaconess Hospital in Boston,
complained “it will undermine trust in the whole system.” By “system,” Hanto was
referring to the national transplant list. Today, there are over 83,000 people in line for a
kidney in the United States. In places such as New York and California, the wait can be
up to eight years. Unless a friend or a relative offers a kidney, people such as Tomas
languish on dialysis, awaiting an organ from a deceased donor. They die at the rate of 13
per day because an organ did not arrive in time — hence the frantic plea of Tomas’s
daughter to anyone who would consider donating to her mother.
A few years ago, Hanto, a former head of the ethics committee of the American Society
of Transplant Surgeons, had his hospital turn away a fragile patient named Lisa
Cunningham, a 40-year-old former social worker with a young son, whose prospective
donor read about her plight in a local newspaper. Arthur Caplan, a prominent bioethicist
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at the University of Pennsylvania, condemned donor solicitation online as “an outbreak of
impatience combined with a me-first attitude,” he told a reporter.
Unless a friend or a relative offers a kidney, people such as Tomas languish on dialysis,
awaiting an organ from a deceased donor.
Me first? Cunningham was not snatching a kidney away from someone else. Except for
the story about her, there would have been no offer in the first place. Moreover, every socalled Good Samaritan donor who gives to someone like Cunningham or Tomas removes
them from the queue, and so others move up a slot. No one is harmed while someone is
saved.
Caplan is a bioethicist; his titles imply an expertise in ethics. Hanto served as the chair of
the Ethics Committee at the American Society of Transplant Surgeons. Yet what are we
to make of their willingness to issue life-and-death pronouncements involving other
people? Well, we know a few things about them. First, that they share an absolutist
approach to egalitarianism: If all cannot benefit, then none should benefit. Second, as
ethicists they presume to know how despairing patients should conduct their private
affairs. And third, they appear to have few qualms about conveying to desperately ill
people a message of hopelessness: Be passive, dying patients — wait your turn and take
no initiative to save your own life.
Does being a bioethicist entitle one to any such moral authority, edifying the rest of us
about right and wrong? Is this what society should expect of its “ethics experts”?
The proper relationship between experts and citizens is a question of longstanding
interest to sociologists and social critics. In the case of bioethicists, the nature of the
subject about which they claim authority is up for debate. Traditionally, they have
focused on the controversies surrounding biomedical technology, such as cloning, sex
selection, in vitro fertilization, nanotechnology, research ethics, organ allocation, and so
on. Now experts are calling for involvement in policy. Renee Fox and Judith P. Swazey,
senior scholars who have studied the sociology and history of bioethics, urge a focus on
“inequalities in health and in access to health care in America.” The field is too “narrowly
American-ocentric,” they write in their 2008 book Observing Bioethics; it should become
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“more centrally and deeply involved with [global] suffering and issues of social justice.”
In his new book The Future of Bioethics, Howard Brody, a physician and philosopher at
the University of Texas Medical Branch, instructs bioethicists to gauge success by asking
themselves if they are “speaking truth to power.” These prescriptions presume a moral
authority that bioethicists cannot properly claim.
Origins
Where did bioethicists come from? Ethical conundrums in medicine long predated the
creation of the field now known as bioethics. In his respected book The Birth of
Bioethics, Albert R. Jonsen, a moral theologian and bioethicist, dates the origin of
bioethics as a distinct discipline to 1947, the year that 23 physicians were convicted of
war crimes during the Nuremberg tribunal. Others believe the field grew out of postwar
technological capabilities that intensified the already vexing dilemmas about human
control over life and death. Medical controversies over care for the terminally ill,
reproductive technology, genetic manipulation, and organ transplantation drew the
attention of Catholic theologians and other religious scholars in the 1950s and 1960s. In
concert with philosophically inclined physicians and scientists, they began to apply moral
theory to modern medical controversies. The exploration of these issues soon became
more secularized as historians, philosophers, anthropologists, legal scholars, and others
joined in.
At the same time it became clear that as technology enhanced physicians’ therapeutic
powers, it increased the range of interventions that patients could undergo and the
vulnerability that came from not understanding the risks of those interventions. This
recognition brought questions about doctors’ duty to inform patients about the treatments
prescribed, the alternatives available, the patient’s prognosis, and the right to refuse care.
A backlash against medical paternalism that was already underway in the 1960s began to
attract academics who were engaged in the civil rights and antiwar movements and
harbored a keen distrust of institutions; they trained their sights on resetting the balance
of power between physicians and patients.
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As ethical quandaries multiplied and demanded attention, it was perhaps inevitable that a
specialized group of professionals — the bioethicists — would emerge to meet the task.
In an impressive burst of institution-building that was funded by both the federal
government and private philanthropies, three bioethics think tanks sprang up between
1969 and 1971: the Hastings Center, in upstate New York; the now defunct Society for
Health and Human Values, in Philadelphia; and the Kennedy Institute of Ethics at
Georgetown University, a Jesuit institute, in Washington. Populated by physicians, legal
scholars, philosophers, historians, and humanists, their agendas coalesced around cuttingedge issues such as genetic testing, organ transplants, in vitro fertilization, neonatal
intensive care units, euthanasia, and other conundrums surrounding death and dying. And
when, in the 1970s, research scandals at Willowbrook and Tuskegee erupted, research
ethics and regulatory oversight were added to the bioethics portfolio.
Inhabitants of the ivory tower were eager to make themselves relevant by applying theory
to real-world problems. According to Daniel Callahan, one of the founders of the
Hastings Center, he and his colleagues wanted to give philosophy “some social bite, some
‘relevance.’” In 1982, in an article called “How Medicine Saved the Life of Ethics,” the
philosopher and historian Stephen Toulmin argued that the imperatives of medicine
enabled moral philosophy to avoid the academic sidelines. And there is no question that,
in some cases, physicians themselves turned to theologians and moral philosophers for
help.
Today, bioethics has an impressive institutional footprint. Major universities house
bioethics centers that offer a plethora of programs: intensive immersion courses,
certificate programs, master’s and doctoral degree programs. The field has several peerreviewed journals and a major professional organization. Bioethicists teach medical
students and undergraduates; they serve on hospital ethics committees and on research
review boards. In many hospitals bioethicists are “on call” to offer guidance on issues
such as the mental competence of patients and whether certain life-prolonging treatments
should be initiated or withdrawn. Some are regularly sought out by the media, others
consult for pharmaceutical companies, and a few even serve as expert witnesses in courts
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of law. In the public policy arena, bioethicists are appointed to presidential commissions
and state and federal task forces that formulate guidelines and advise politicians.
Since 1970, the year in which the term “bioethics” was coined by Sargent Shriver, the
institutional base of bioethics has flourished. The swift rate of growth alone makes the
field itself perhaps as interesting as the problems it addresses. As the bioethicist Carl
Elliot has pointed out, every sector of society has its moral dimensions, “yet in no other
sphere of our lives [but medicine] has ethics been so thoroughly professionalized . . . it is
worth stepping back and noting just how unusual this really is.” No wonder bioethics has
become a subject of study in its own right.
A wide-open field
Bioethics today is a field with widely divergent understandings of itself. In meetings of
the American Society for Bioethics and Humanities (asbh), which is the major
professional organization for bioethicists, and in journal symposia, participants try to
come to terms with the question of what kind of enterprise bioethics is. Is it a field of
scholarly inquiry, a learned profession, a consultancy, a form of policymaking or
activism, an oversight apparatus that monitors researchers and physicians, a discourse, a
project, or a collection of questions or issues? What training should a bioethicist receive?
Should the field take stands on mainstream political issues, such as the war in Iraq, the
crisis in Darfur, Abu Ghraib? Are bioethicists excessively beholden to the institutions that
they serve?
When I spoke in 2006 at the annual meeting of the asbh on the assigned topic of whether
the organization should take political positions — I said no — the reception I received
was chilly indeed. This was a question that the society itself had been debating for years.
During the q and a, almost all the bioethicists who asked questions contested my view
that professional groups damage their credibility when they pronounce on issues outside
of their expertise. Au contraire, they said; as experts in ethical matters, who better than us
to opine? I remember feeling sympathy for the leadership of the asbh, which has to
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accommodate these competing views, and I admired the officers for inviting me in the
first place and for airing the society’s internal disagreements openly.
Finding the “right” moral answer — assuming for a moment one exists — is not the
business of applied ethics.
Is it politically desirable for society to credit a designated group called “bioethicists” with
expertise in resolving the most difficult moral questions? If so, what is it that gives
ethicists a more legitimate claim to wisdom about right and wrong than the rest of us?
The matter of ethical expertise — what it looks like, who can claim it — is a profound
one. The place of bioethics in the academy, in the clinical realm, and in society turns on
it. For most of us, the very idea of the “right” answer to a complex moral dilemma seems
absurd on its face. After all, its derivation depends upon which moral theory one favors:
deontological, consequentialist, natural law, situational, and so on.
By no means does this negate the possibility, let alone the importance, of serious moral
reflection, but such analyses may be too lost in the foundational questions to be of much
everyday use. And, of course, many bioethicists rely on their own philosophical biases.
So, for example, when bioethicists condemn organ donor solicitation with the argument
that it gives unfair advantage to some or violates human dignity, we must ask what makes
them sufficiently sure of their view to impose it on others? Finding the “right” moral
answer — assuming for a moment one exists — is not the business of applied ethics. So
what can bioethics offer? What is its technical expertise?
The answer comes into focus when we think of applied ethics as a deliberative process,
one that concerns itself with how to determine what ought to be done rather than to make
a concrete determination per se. For example, when an expert in bioethics approaches a
problem, such as an end-of-life decision, he brings a deep knowledge of the cultural
history of that controversy, including the conceptual schemes that have been used to
resolve it and relevant legal decisions. This allows him to draw analogies to current
situations. While hovering above the fray the bioethicist objectively delineates value
conflicts, lays out the assumptions behind different positions, evaluates the soundness of
arguments according to standard rules of logic, and reflects upon the potential
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consequences of various courses of action. Mostly, he imparts this analysis to the doctors
or administrators who enlisted his advice. However, when working directly with patients,
the task is typically one of helping them or their loved ones reach consensus about endof-life decisions or course of treatment.
Ultimately, the bioethicist presents his analysis to the designated decision-maker —
typically a physician or an administrator — who is accountable to his patients and his
employer. Bioethicists should not advocate for patients or physicians or hospitals; they
should advocate for disinterested moral deliberation. Nor should they mistake consensus,
which is required in order to take action, for the discovery of moral truth. The role of the
bioethicist, then, should be to illuminate debates, not to settle them. In the parlance of
medicine, they do not have prescribing privileges.
Though many bioethicists disavow the mantle of moral authority that the
professionalization of ethics implies, many others, alas, do not. Ask almost any hospital
physician about this and you will get, in reliable sequence, an eye roll, a sigh, and then an
earful of anecdotes about swaggering bioethicists posing as arbiters of right and wrong
(“Wizards of Oughts,” as the critic Giles Scofield put it). In the media, the coverage of
almost any biomedical controversy is sure to contain a quotation from a bioethicist with
oracular pretensions. The message is clear: Anyone who disagrees with me is thoughtless
or unethical.
Such arrogance discomfits ethical bioethicists as well. Erik Parens of the Hastings Center,
located just outside of New York City, regrets the popular view of ethicist as “priggish or
foolish enough to lay claim to how other people should lead their lives.” Fed up with
Homo bioethicus, Carl Elliott of the University of Minnesota has remarked that “Many
people working in and around bioethics wince if someone called them a ‘bioethicist’ . . .
Some resist the aura of professionalism and moral expertise that the term bioethics seems
to imply. Others are just embarrassed by the incivility and glibness of our public
spokespeople. Others just don’t want to be viewed as the ethics police.”
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Bioethics and social justice
Bioethicists like ruth macklin of the Albert Einstein College of Medicine would have
bioethics adopt an aggressive pursuit of social justice. “As a liberal, humanitarian
bioethicist,” she told interviewers, “I acknowledge that my chief concern is in striving for
greater social justice within and among societies, and reducing disparities in health,
wealth, and other resources among populations in the world.” Howard Brody opines that
the future agenda of bioethics “ought to be concerned with power disparities.” These may
be noble aspirations, but one must ask what particular authority or skill bioethicists
possess that qualifies them to solve global health problems, let alone economic ones.
Achieving social justice in health is a complex task that requires the forging of a
meaningful universal agreement on what health care should be like and what kind of
scheme should dictate the national and transnational allocation of medical resources. Lest
Americans be accused of bioethical imperialism, they will need to be part of a consensus
involving countries whose fundamental views of justice, fairness, and basic human rights
may differ dramatically from our own and from one another.
The origin of the current crisis of purpose, identity, and expertise in bioethics stems in
large part from its being a derivative enterprise.
It is unclear what the field of bioethics can add in the way of unique scholarship, practical
wisdom, or ethical reflection that is not already being applied today, for better or worse,
by experts in international development, global health economics, and political theory.
Granted, there might be a role for the dispassionate articulation of moral options, but as
Fox and Swazey portray them, bioethicists who seek a global stage sound more like
activists intent on changing the world. Moreover, so many of the world’s tragic
circumstances do not need subtle moral clarification. They result from unjust institutions
and corrupt leaders, and they require state and international action in the political and in
some cases even the military realms. Displacing oppressive regimes and establishing the
rule of law are no jobs for a bioethicist. The question for bioethics, then, is whether such
a moral crusade is an appropriate mission for the field. Or, as the philosopher and
bioethicist Jonathan Moreno has rightly asked, “Can a scholarly field retain its
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intellectual legitimacy, both internally and in the eyes of the public, when some of its
core topics seem to be matters of ideology, rather than, or at least as much as, expertise?”
The origin of the current crisis of purpose, identity, and expertise in bioethics stems in
large part from its being a derivative enterprise. During the 1960s and early 1970s,
bioethics was less a distinct field than a collegial network of scholars and learned
professionals who shared a mutual interest in applying moral theory to medical
quandaries. These physicians, legal theorists, philosophers, historians, anthropologists,
and sociologists were members of established academic disciplines with distinct bodies of
knowledge, with time-honored theories and methods of inquiry. They brought those
intellectual traditions to bear on questions of value-conflict within medicine. But when
the zone of intersecting interests promoted itself into a primary, semi-autonomous field of
its own, in much the same way that women’s studies or black studies did, it became more
and more estranged from the rigorous scholarly disciplines that spawned it. Now many
students aspire to become “bioethicists” without any other disciplinary background.
“Conservative” bioethics
Though professional bioethicists may not agree, they tend to close ranks when outsiders
presume to make ethical claims. Fox and Swazey describe how mainstream bioethics —
which they consider to be “essentially synonymous [with] liberal bioethics” — reacted
with tribal animus to the ascendancy of conservative bioethics during the Bush
administration.
A defining moment of the bioethics culture wars was August 9, 2001. On that day
President Bush announced federal funding, with restrictions, for human embryonic stem
cell research and named Leon Kass, a vocal critic of embryonic stem cell cloning, as
director of a new President’s Council on Bioethics.
During its tenure, which ended in June 2009, the Council elicited full-throated
denunciations by many in the academy. Among the most vocal was Alta Charo, a legal
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scholar and bioethicist from the University of Wisconsin (recently named by the Obama
Administration to serve as a senior advisor at the Food and Drug Administration) who
has referred to Kass’s reign as “the Endarkenment.” More dramatically, when Kass
presented the keynote at the asbh in 2004, the atmosphere in the lecture room crackled
with hostility and some in the audience stood with their backs to him as he spoke.
The implication is clear: The conservative agenda is essentially inhospitable to scientific
progress and, by extension, to the patients who could benefit from its fruits. Recall when
Dolly, the cloned Scottish ewe, stepped daintily into the public square in 1997. For the
most part, mainstream bioethicists were exhilarated by the therapeutic promise she
represented, whereas their right-leaning colleagues saw Dolly’s creation as a threat to the
sanctity of life and the beginning of a program that could well end in cloning designer
children. The right and the left have a profoundly different understanding of what is at
stake; and the rift between them, it is safe to say, is unbridgeable.
So deft are some conservative bioethicists at conjuring apocalyptic visions of a posthuman future that the journalist Will Saletan has characterized them as “standing athwart
history, sighing ‘Oy.’” He has a point. To be sure, they sigh with erudition and with
eloquence. Should conservative bioethicists — or any bioethicist, for that matter —
counsel us on reasons for vigilance? Yes, but too often they warn us not to make any
progress at all. There is an irony here. For all the deference that conservative bioethics
pays to the implicit wisdom of the ages, it rarely mines the recent past for lessons. Instead
of concentrating on the ancients, why not also study the history of in vitro fertilization,
paid egg donation, and surrogate motherhood to learn about cultural resistance and
adaptation to such practices?
Even better, why not consider earlier practices that were deemed repugnant in their day
but are now unexceptionable? The list of these moral apocalypses that never were is a
distinguished one: vaccination, anesthesia, blood transfusions, life insurance, artificial
insemination. Perhaps the systematic analysis of these practices holds little interest for
conservative bioethicists because most of society now regards them as nonissues. Or
more likely, they regard an objective assessment as irrelevant given their convictions that
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certain practices pose such an affront to human dignity that they should not be pursued at
all, no matter how much good can come of them.
And what about politics? To be fair, mainstream bioethicists are correct when they say
that conservative bioethicists often have a political agenda. But so do they, making their
assertion that President Bush’s Council on Bioethics was too partisan and homogeneous
— “a council of clones,” as Arthur Caplan remarked — amusing indeed. Having attended
several council meetings myself, I can attest to its diversity of views and its careful
deliberation. In the end, yes, the “Oys” had it but, no surprise, other bioethics
commissions have displayed their own slant. They were “chaired by liberals, staffed by
liberals, [with] overwhelmingly liberal members,” according to Daniel Callahan of the
Hastings Center. Yet, as Callahan says, “they received hardly any criticism at all.” When
bioethicists swim in the same ideological waters as the administrations they serve, their
likeminded colleagues find little to complain about — but a bias may still lurk.
The human subject
No discussion of bioethics is complete without a discussion of human subject research. It
is through the regulatory reach of ethics oversight that we see how deeply
institutionalized bioethics has penetrated medicine. In 1974, in response to the revelations
surrounding the Tuskegee Syphilis Study, Congress passed the National Research Act. It
mandated the creation of institutional review boards, or irbs, to ensure that the benefits of
research outweighed the risks and that individuals know those risks before consenting to
become a subject. All human subject research conducted in medical schools, universities,
and federal agencies must be approved by irbs.
Today many irbs are hidebound bureaucracies. The informed consent documents that
subjects must read and sign can run to dozens of pages. To spare themselves suffocation
by red tape, researchers sometimes abandon studies altogether. Changing a single word in
a consent form at the request of an irb can entail a months-long wait for approval after
resubmission. Out of zealous concern for subjects’ privacy, some irbs require that raw
data, including tapes and transcripts, be destroyed a few years after collection. For
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investigators who wish to replicate or to extend the original work, this is an irretrievable
loss of information. Amid burdensome paperwork requirements and nitpicky objections
to even the most innocuous interventions, projects are often held up for months. This
costs medical schools considerable amounts of money and, as in the case of cancer drug
trials, it surely costs actual lives.
Efforts to assure informed consent and subject autonomy often veer into smothering
paternalism. Consider the complaints of mental health researchers in the wake of
September 11<. Their timely access to victims was thwarted by irbs concerned that
subjects would be “re-traumatized” by filling out a questionnaire or undergoing an
interview. Along these lines, many irbs spend hours deliberating over whether subjects
will be “coerced” into participating in a study if offered a token gratuity of, say, $25.
More serious cases have involved the refusal to allow parents to enroll their terminally ill
children in studies. In the pioneering days of liver transplants, for example, some
bioethicists said that parents of dying infants should not be allowed to give them a lifesaving segment of their own liver. The reason? No parent would refuse the opportunity to
save his own child’s life — thus, he would effectively be “coerced” into doing so — and
so the option should not exist at all.
Based on this dubious logic, the power of decision would have been taken from the
parents. Someone else knew better. What’s more, as doctors have long observed, some
parents do indeed refuse, especially if they have other children for whom they must
remain healthy and not risk major surgery. The scenario echoes the time in the mid-1990s
when ethicists urged physicians to withhold genetic test results from women with a high
risk of breast cancer. The knowledge, they believed, was just too dangerous for the
women to handle.
And yet, the field of bioethics considers the institutionalization of research ethics to be
among its greatest accomplishments. Having attended anniversary conferences
commemorating the Belmont Report, a document that in 1979 set forth the basic
principles of human research, Fox and Swazey portray themselves as bemused to hear
bioethicists praising Belmont as “near-canonical,” having “changed the world,” and
having been “consecrated” by its impact. To be sure, nobody denies the need for research
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oversight. But at many institutions the pendulum surely has swung too far in the direction
of vigilance. Relentless scrutiny and seemingly capricious restriction have fostered
mutual distrust between reviewers and researchers, making legitimate regulation more
difficult and encouraging gaming by investigators.
Priorities for bioethicists
When bioethicists speak, who listens? When geologists weigh in on global warming,
attention must be paid. After all, they are experts in climate science. When bioethicists
put a full-page ad in the New York Times urging the passage of universal health care, as
they did in 1994, what kind of expertise do they bring to bear? Citizens interested in the
debate are sufficiently versed in its moral dimensions; “experts” are not required to tell
them what is and is not ethical. Nor does the repudiation of Matchingdonors.com hold
sway with vulnerable patients, the people who love them, or most of the doctors who
want to save them. They embrace their own moral imperative: to minimize suffering
through the unparalleled kindness of strangers.
At their best, bioethicists are scholars who study the intellectual and social history of
value controversies in medicine and biotechnology. They can teach us about the technical
and cultural antecedents of modern debates and show us how to engage in disciplined
moral inquiry. They are skilled at drawing conceptual maps of the dilemma at hand while
enumerating various ways to resolve it. In these ways, bioethicists have much to offer.
But beyond this, their value is mainly cosmetic or bureaucratic. When called upon by
politicians, their main task is to neutralize explosive issues or to provide ethical cover for
decisions that have already been made. When physicians summon them, it is mostly to
mediate disputes between patients, staff, and family members regarding end-of-life
decisions. The media tap bioethicists for high-minded sound bites. In hospitals and in
governmental agencies, they man the regulatory ramparts.
It is hard to gauge how much impact organized bioethics has had on society. If the
activist wing closed up shop and the pundits went home, it is doubtful they would be
missed. But one hopes that at least its scholarly and didactic entities will live on. With
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our growing technical capacity to manipulate our biology and thus our destiny,
biomedical dilemmas will certainly increase in number and in difficulty, and they will
require as much thoughtful attention as they can get. But social justice should be left to
others — to the rest of us. The more bioethics promotes an agenda of social or economic
reform, the more it betrays itself to be politics by other means.
Sally Satel, a practicing psychiatrist, is a resident scholar at the American
Enterprise Institute. She is the editor, most recently, of When Altruism Isn’t
Enough: The Case for Compensating Kidney Donors (AEI Press, 2009).