The Ethics of Bioethics

At dinner after a recent meeting about ethics and genetics, a guest told me that he had never been to a conference of bioethicists before. The person next to him sat up straight, as if insulted, and said: ‘But I’m not a bioethicist.’ They turned to me. ‘Don’t look at me,’ I said. ‘I’m no bioethicist.’ We asked the other guests at the table, and while the verdict was not unanimous, many said no, they didn’t really consider themselves bioethicists either. To an outsider, it must have seemed an odd response. Most of those present work in bioethics centres, publish in bioethics journals, belong to bioethics associations and write books with the word ‘bioethics’ prominently displayed on the covers. I do many of those things myself.

Bioethicists have an expanding role in American public life. They are on the staff of government organisations such as Nasa, the Veterans’ Administrations and the National Institutes of Health, as well as professional bodies such as the American Medical Association. They help oversee the ethics of biomedical research by serving on local Institutional Review Boards and they write most of the regulations and guidelines that determine what research is approved. Thanks to the clinical ethics movement, white-coated bioethicists work in hospitals and medical schools – advising doctors and nurses, writing notes on patients’ charts. Bioethicists serve as consultants to managed care organisations, advisers to non-profit medical foundations, and expert witnesses in court. Online news outlets such as CNN.com and MSNBC.com feature regular columns written by academic bioethicists, and it is a rare newspaper or television story about a medical issue of moral concern that is not accompanied by expert bioethics commentary. In 1995, Clinton created a National Bioethics Advisory Commission, which Bush replaced with a President’s Council on Bioethics. Bioethics (or medical ethics) has been established in the UK for about as long as it has been in the US. The Journal of Medical Ethics was founded in 1975; ethics is now routinely taught in British medical schools; the UK is home to a number of bioethics institutions, such as the Nuffield Council and the Institute of Medical Ethics. But bioethics centres and chairs are far fewer in number, and there are no professional associations specifically for bioethics. In the US there are two: the American Society for Bioethics and Humanities (ASBH) and the American Society for Law, Medicine and Ethics (ASLME), each of which has about fifteen hundred members.

But bioethics is taking a beating these days. The assault began a few years ago with a blistering profile by Ruth Shalit in the New Republic. Shalit’s article, entitled ‘When We Were Philosopher Kings’, portrayed bioethicists as pompous blowhards who are widely ignored even as they insist on their own importance. One, remarking on the reception of his ethics lectures in a hospital, told Shalit: ‘People were literally putting their heads down on the desk. It was very humiliating.’ The piece cut pretty deeply, and struck the two themes that have run through many subsequent crit-iques of bioethics: intellectual arrogance and moral weakness. In Our Posthuman Future, Francis Fukuyama, though a member of the President’s Council on Bioethics, accuses bioethicists of pandering to scientists, remarking that in any discussion of controversial ethical issues, ‘it is usually the professional bioethicist who can be relied on to take the most permissive position of anyone in the room.’ Wesley Smith, author of The Culture of Death, offers a more sinister vision of the ethics business, depicting bioethicists as a self-appointed corps of elite liberals plotting to take control of the American medical and judicial systems. Critical essays and editorials have recently appeared in magazines such as Wired, the Scientist, Commentary, the Weekly Standard and First Things accusing bioethicists of hypocrisy, corruption or vanity. One of the cruellest insults was unintentional. Commenting on the testimony of a bioethics expert witness in Florida, a district judge wrote: ‘His testimony was often very abstract, describing such things as the “metaphysical” and “epistemological” issues associated with the “post-Kantian world”.’ The judge went on to classify the bioethicist’s remarks as ‘harmless error’, noting: ‘It is not surprising that all of the lawyers essentially ignored this testimony during closing arguments.’

American bioethicists have not taken this kind of criticism with good humour, especially when they themselves are not singled out. In a review of The Culture of Death in the American Journal of Bioethics, Richard Zaner complains that he was ‘utterly missing’ from Wesley Smith’s ‘rants’, that he was ‘not only not interviewed and not cited, but not even mentioned in passing’. Albert Jonsen reacted with similar indignation. In a review of Smith’s book and of Bioethics in America by Tina Stevens, Jonsen writes that he felt ‘personally slighted’ by both authors: ‘They do not even bother to refute me.’ It’s all a little too like the exchange in Casablanca when Peter Lorre’s character says to Humphrey Bogart’s: ‘You despise me, don’t you?’ To which Bogart replies: ‘If I gave you any thought, I probably would.’

Last year there was a series of more distressing revelations, about the ties of North American bioethics to the biotechnology and pharmaceutical industries. Concerns about the influence of industry on academic medicine have been mounting steadily for years, fuelled in part by enormous industry profits – the pharmaceutical business has had the highest profit margins (18 per cent) of any industry in America for the past ten years, while prescription drug spending has been growing at a rate of 10 per cent annually – and heightened by reports that drug-makers are using lawsuits and harassment to suppress research results that might damage sales. Newspapers have published stories of research data being manipulated, researchers being forced to sign confidentiality agreements, enormous finders’ fees being offered to doctors who recruit research subjects, and scientists being paid to put their names to ghost-written editorials. Three years ago, when an 18-year-old patient died in a gene therapy experiment at the University of Pennsylvania, it was revealed that the doctors involved had equity stakes in a biotech firm with a financial interest in the research. A number of prominent physicians have sharply criticised the pharmaceutical industry’s growing influence; but, with a few exceptions, the response of the bioethics community has been surprisingly subdued.

Maybe it’s not such a surprise after all. The past year has made it all too clear just how heavily North American bioethics itself relies on industry support. Bioethics and health-law centres at Toronto, Pennsylvania, Stanford and Arizona State, among other universities, accept funding from the pharmaceutical or biotechnology industries, as do non-profit bioethics institutes such as the Hastings Center and the Midwest Bioethics Center. Even the American Medical Association’s ethics institute draws on industry funds. This may not be all that remarkable in an era when academic medical centres increasingly depend on corporate ‘partnerships’. But many individual bioethicists are embarking on private, for-profit consulting ventures with industry to supplement their university pay cheques. Bioethicists moonlight as corporate consultants, advisory board members, expert witnesses in industry lawsuits, and members of for-profit research review boards. Corporations reported to have employed bioethics consultants include GlaxoSmithKline, Eli Lilly, Pfizer, Celera, DNA Sciences, Geron, Advanced Cell Technology, Genzyme, Affymetrix, Myriad Genetics, Millennium Pharmaceuticals and the Pall Corporation. Some bioethicists and ethics centres have revealed their corporate links, but most prefer to keep them quiet, especially now that the media have latched onto the issue.

‘Bioethicists are to ethics what whores are to sex,’ Richard John Neuhaus wrote in the conservative periodical First Things. Dan Callahan, a founder of the Hastings Center, told the New York Times: ‘This is a semi-scandalous situation for my field.’ The Center for Science in the Public Interest issued a press release calling on bioethics centres to disclose their corporate ties, and on bioethics journals to develop conflict-of-interest policies. But many bioethicists are unrepentant. One told the press that a biotech firm pays him in stock options. Privately, many seem insulted by the idea that their integrity can be corrupted by money.

Sensing a public relations disaster, the ABSH and ASLME last year assembled a task force to examine the issue of private bioethics consultation. The task force, led by Baruch Brody of Baylor University, published its consultation guidelines without the endorsement of their sponsoring organisations in the June issue of the Hastings Center Report. If anything, the guidelines are likely to make matters even worse. Given the fact that the (then) presidents of the ASBH and the ASLME were working for Geron and DNA Sciences respectively, it is not all that surprising that the task force report endorses, without qualification, for-profit bioethics consultation to industry. More surprising is the report’s unsolicited endorsement of bioethics advertisements. Most surprising of all is the refusal by the authors to comply with the Hastings Center Report’s conflict-of-interest policy. They explain that they ‘felt no need’ to disclose which corporations they have worked for or how much money they have received. What they do reveal is that eight of them (out of ten) have performed the kinds of ethically controversial corporate consultation the report addresses.

No wonder so many of us are looking around for the exit doors. If this is where American bioethics is heading, it’s time to get off the train. ‘Harmless error’ is one thing, but my ticket said nothing about bribery or influence-peddling. It has not helped that the ASBH/ASLME task force chose to defend the virtues of for-profit corporate consultation in a year when so many American corporate executives and their consultants are facing lengthy jail sentences.

Bioethicists are not supposed to be mere agents for their employers: they are expected to be moral critics as well. They are sometimes given a vague sort of regulatory power, but it is usually not legally formalised. Most are academics, but they aspire to something more than teaching and scholarship: bioethics has always been about changing the world, not just studying it. The variety of roles that bioethicists inhabit – clinicians, scholars, policymakers, regulators, activists, consultants – complicates the question of corruption, because it is not clear what duties and loyalties are expected of them. If bioethicists were merely hired guns, the question of corruption would not arise: it would be clear that they were paid to advise and protect their clients. But many people – perhaps mistakenly – expect them to have higher loyalties. Until recently, students studying the ethics of stem cell research would not have suspected that their teacher was a consultant for Geron; scholars criticising industry-sponsored clinical trials would not have imagined that the editor evaluating their manuscript was working for Eli Lilly; and newspaper readers would not have thought that the ethicist commenting on genetic engineering was drawing a pay cheque from Celera.

Implicit in the ASBH/ASLME report is a distinctive (though not altogether unexpected) view of what bioethics is, according to which bioethicists are not primarily scholars, teachers or clinicians but professional service providers in a market economy, advertising and selling ethics to paying consumers. Because of their extensive experience and education, they allegedly have moral expertise unavailable to ordinary people. This is the reason they are so valuable to the drug industry, and the reason they deserve to be paid so handsomely. Pharmaceutical and biotech corporations need to become more ‘ethically conscious’, the report says, but they lack the ‘internal resources’ necessary to deal with ethical issues. (The same could be said of the Mafia.)

It is possible to describe bioethics as a commodity in a market economy, and if the right social and institutional structures are developed, that is exactly what it will become. But would that development be good for anyone other than bioethics entrepreneurs? Medieval Christians attached great importance to the sin of simony: the sacred does not have the same hold on us anymore, but we still feel an impulse to insulate certain things from market exchange. To put up advertising billboards in a cemetery feels not so much wrong as obscene. The initial shock that many outsiders have expressed at the idea of ethics-for-hire comes partly from the sense that words like ‘honour’ or ‘duty’ stand on a different plane from phrases like ‘advertising revenue’, ‘profit margins’ and ‘consulting contract’.

The point here is not to deplore the wickedness of the market, only to keep the market in its proper place. In Silent Theft, David Bollier shows how isolated ‘gift economies’ can flourish within a larger market economy. One example is the subculture of people who have developed software and distributed it for free on the Internet. Another example is the community gardens that social activists have built on abandoned property in New York City. Science is (or was) another: it used to be thought wrong for a scientist to expect to profit financially from a scientific discovery. We try to insulate different things from the market for different reasons, but one important reason is the worry that the market may transform the meaning of a practice: you could pay a person to be your friend, for example, but a hired friend would not be the same as the genuine article.

Critics of corporate-funded bioethics have suggested that the solution is a full-disclosure policy. But the underlying problem is not secrecy so much as influence-peddling. One of the most striking revelations of the past year has been the national prominence of the bioethicists working for industry. The pharmaceutical industry, unsurprisingly, prefers to finance insiders with clout: directors of major centres, editors of bioethics journals, members of national policy committees, presidents of bioethics associations and authors of standard bioethics texts. Disclosure forms would simply ritualise these financial exchanges, disinfect their unpleasant smell, and make them seem like business as usual.

Even if the financial conflicts could be managed, how well would we be served by a cadre of bioethicists working in corporate boardrooms? Political scientists have written about the phenomenon of ‘regulatory capture’, in which bureaucrats become tools for the industry they are supposed to be regulating, because they are dependent on industry representatives for funding, career advancement or professional respect. Bioethicists are often in the same position – not just in corporate boardrooms but also in hospitals, medical schools and research institutes. As Fukuyama points out, they are expected to put the brakes on questionable biomedical activities, but the people they are supposed to be watching are often richer, more powerful and more widely respected than they are. If being consulted by Nobel laureates, Nasa scientists and corporate CEOs becomes a mark of prestige in the bioethics community and a step on the career ladder, bioethicists will be little more than eunuchs in the corporate harem.

Perhaps the new breed of corporate bioethicist will be able to whisper an occasional bit of prudent advice in the sultan’s ear. But anyone with a financial interest in being an adviser to the rich and powerful also has an interest in avoiding anything more serious than the occasional whisper. My friends who do this sort of corporate work assure me that they could give me many examples of the unethical practices their wise advice has eliminated or thwarted if only their confidentiality agreements with industry would permit it. Perhaps. I only know that I have never read an industry-funded ethics article that is critical of the industry that funded it.

It is possible to spend your days with like-minded colleagues from all manner of academic and clinical backgrounds, trying to make sense of some of the most intractable human problems, from illness and mortality to injustice and insanity. At its best, the work can be intellectually thrilling, and many of the people doing it are generous and welcoming. Yet in some quarters the field seems to be gradually transforming itself into a professional class of moral experts whose primary job is to advise others how to behave: a medically knowledgeable, media-savvy, academic-corporate wing of the advice industry. The problem is that professional expertise is granted not only by what the expert knows, but by what institutional position the expert holds. The growth of other new professional experts in the late 19th and early 20th centuries – psychiatrists, clinical psychologists, social workers, guidance counsellors, probation officers – was marked not merely by (often modest) developments in scholarly knowledge, but by institutional positions that formalised such expertise and gave the experts a measure of bureaucratic authority. What is new about the rise of professional bioethics is not what bioethicists claim to know (regulations, law, a scholarly literature, a medical vocabulary) but the bureaucratic authority they are being given in the larger social system – as hospital ethicists, expert witnesses, private consultants, research review board administrators, policy analysts and government advisers. And it is precisely because of this wider public authority that bioethicists are being financially tempted by industry.

Americans distrust authority, as foreign observers from Tocqueville onwards have observed, but we admire money and expertise. When public authority collapses, paid experts emerge to fill the gaps. The decline of the family has been countered by the rise of child-care experts, the decline of the clergy with the rise of counsellors and self-help authors. New experts flourish in the marketplace, others fade away. Perhaps bioethics, like medicine, will be able to sustain some measure of public credibility despite market forces, but it has far less history to draw on. Bioethics rests on a thin layer of public trust that can easily be shattered. Full-disclosure policies may help that process along. Once bioethics becomes publicly identified as a tool for industry, its practitioners may face a choice between going back to their old jobs in the philosophy department or signing up for new corporate positions as risk managers and compliance officers.