The Bioethics Mess
Crisis Magazine, May 2001
“Bioethics” — the word sounds like old–fashioned medical ethics applied to new medical technology. It's the application of traditional philosophical or theological principles to the moral dilemmas created by, say, cloning or experimenting with new AIDS drugs, right?
Not really. Like the word “Bioethics” itself, which formally dates only from the early 1970's, the philosophical underpinnings of bioethics are completely different from those that underlie traditional medical ethics. Traditional medical ethics focuses on the physician's duty to the individual patient, whose life and welfare are always sacrosanct. The focus of bioethics is fundamentally utilitarian, centered, like other utilitarian disciplines, around maximizing total human happiness.
Such factors as the feelings and preferences of other people — the parents of a child with severe birth defects, the husband whose wife seems permanently comatose, or even the doctor who decides that an elderly Alzheimer's patient would be better off dead — along with the possible cost of treatment to society, can weigh in against and ultimately outbalance the afflicted person's needs. Good–bye, Hippocrates; hello, Peter Singer. And good–bye, especially to the Catholic understanding of the sacredness of the life of each individual human being.
Bioethics as understood and practiced today was created by a congressional mandate in 1974. During the late 1960's and early 1970's, there was an explosion of exposes of research abuses in medicine, and also of ethical dilemmas created by new life–prolonging technologies. There were reports of patients enduring agonizing deaths, spending their last days — or even last weeks or months — hooked up to mazes of tubes and impersonal machines. Nursing homes and hospitals seemed to be overflowing with the hopelessly ill apparently consuming scarce medical resources.
There were also revelations that entire non-consenting populations — orphans in institutions, poor black men recruited by the Tuskegee Institute, prisoners, the mentally ill, residents of inner cities — had been used as human guinea pigs in government-sponsored medical experiments. Aborted fetuses were rapidly becoming prized biological materials for medical investigation, raising serious moral questions. And so, bioethics was formally “born“.
In the late 1960's and early 1970's, Senator Edward Kennedy, the Massachusetts Democrat, and then–Senator Walter Mondale, later to become vice president under President Jimmy Carter, conducted hearings on many of these abuses. The result was a piece of federal legislation called the 1974 National Research Act. It required the secretary of the Department of Health, Education and Welfare (now Health and Human Services, or HHS) to appoint a commission to “identify the basic ethical principles” that the federal government should use in resolving these extraordinary dilemmas. Those “ethical principles” were to be translated into practice as the basis of federal regulations concerning the use of human subjects in research.
In 1974, Casper Weinberger, President Gerald Ford's health, education, and welfare secretary, appointed an eleven–member commission that in 1978 issued a document called the Belmont Report, which identified and defined three ethical principles: respect for persons, justice, and beneficence. To this day, those principles are called “the Belmont principles.” “principlism” for short, or simply “bioethics.”
The Belmont principles became the foundation for the guidelines that the Office for Protection from Research Risks uses when assessing the ethics of using human subjects in research. They also underlie a host of other federal regulations and guidelines for medical research, and they have worked their way into the private sector as well. Universities and hospitals routinely use — or try to use — the three principles when approving research projects, deciding who qualifies for certain medical treatments, and even who lives, who dies, and who makes those decisions.
Thus, bioethics is really a brand–new ethical theory, a brand–new way of determining right and wrong. How did we get there? How did it come about that our government and its non–elected experts, rather than religious leaders or even traditional philosophers, acquired the power to define what is normatively ethical for all Americans facing complex medical or scientific issues?
A SHORT HISTORY OF MEDICAL ETHICS
The discipline of medical ethics goes back to ancient times, to the Greek physician Hippocrates (about 460–380 B.C.), who was concerned about the qualities of “the good physician,” and the decorum and deportment that a physician should display toward patients. The good physician was, in Hippocrates' view, a “virtuous physician,” whose duties included helping rather than harming the sick, keeping patients' confidences, and refraining from exploiting them monetarily or sexually. Hippocrates' code of conduct strictly forbade abortion and euthanasia. The paradigm of those duties was the Hippocratic oath, which most medical schools routinely administered to their graduates until relatively recent times.
During the Middle Ages, a more Christian and communal view of Hippocratic medical ethics prevailed that required physicians to present themselves to the public as “professionals” and to show themselves as worthy of trust and authority. Medicine became more than a physician–patient relationship. Its practitioners now had the sole privilege of education, examining, licensing, and disciplining other physicians, who pledged themselves to use their skills to benefit society at large as well as their own patients.
Starting in the late 19th century, with the rise of medical schools and teaching hospitals, traditional Hippocratic ethics began to incorporate new rules governing the behavior of physicians toward each other. There developed what was called an “ethics of competence,” especially in the practice of medicine in hospital settings. The emphasis was now on extensive cooperation among physicians and all the other professionals involved in the care of patients. Accurate record–keeping and written patient evaluations became the norm. Physicians were supposed to inform their patients about their diagnoses and courses of treatment and not to exploit them for teaching purposes. Senior doctors were not supposed to exploit junior doctors. “Moral practice” was defined as “competent practice,” including the mastering of advances in medical science.
After World War II, new medical research and technologies began to complicate patient care, thanks to massive federal funding of the health sciences. The crucial bonds of the physician–patient relationship were beginning to fray. Traditional Hippocratic medicine was breaking down rapidly, seemingly impotent in the face of pressing new questions: Could one experiment on dying patients to “benefit” other “patients” How should the growing intertwining of medical practice and government, commerce, and technology be handled? How should the benefits and burdens of medical research be justly distributed, or scarce medical resources allocated? Who should make these decisions? Patients? Their families? Physicians? Clergy? Experts?
Starting in the 1960's, there were a series of conferences around the country on such issues as population control, thought control, sterilization, cloning, artificial insemination, and sperm banks. One of the first, the “Great Issues of Conscience in Modern Medicine” conference at Dartmouth College in 1960, hosted an array of scientific and medical savants, including the microbiologist Rene Dubos of the Rockefeller Institute, the physician Sir George Pickering of Oxford University, and Brock Chrisholm, a leading medical light of the World Health Organization, together with such famous humanists as C. P. Snow and Aldous Huxley.
The hottest topics were genetics and eugenics. Dubos declared that the “prolongation of the life of aged and ailing persons” and the saving of lives of children with genetic defects — two benefits of post-World War II advances in medicine — had created “the most difficult problem of medical ethics we are likely to encounter within the next decade.” Geneticists worried that the gene pool was becoming polluted because the early deaths of people with serious abnormalities were now preventable. The Nobel Prize–winning geneticist Hermann Muller offered his own solution to that problem: a bank of healthy sperm that, together with “new techniques of reproduction,” could prevent the otherwise inevitable “degeneration of the race” that might ensue thanks to medical advances that allowed the defective to reproduce.
At another conference, “Man and His Future,” sponsored by the Ciba Foundation in London in 1962, the luminaries included Muller; Joshua Lederberg, winner of the Nobel Prize in medicine; the geneticists J. B. S. Haldane and Francis Crick; and the scientific ethicist Jacob Bronowski. As at Dartmouth, concerns about human evolution, eugenics, and population control were primary. The biologist Sir Julian Huxley declared, “Eventually, the prospect of radical eugenic improvement could become one of the mainsprings of man's evolutionary advance.” Huxley proposed a genetic utopia that would include strict government controls over physiological and psychological process, achieved largely by pharmacological and genetic techniques. They would include cloning and the deliberate provocation of genetic mutations “to suit the human product for special purposes as the world of the future.”
Other conferences of the 1960's delved further into the implications of science for the modern world. One was a series of Gustavus Adolphus Nobel meetings in Minnesota in which many Nobel winners participated. At the first of them, in 1965, whose theme was “genetics and the Future of Man,” the Nobel physicist William Shockley presented his maverick views on eugenics. He suggested that, since human intelligence was largely genetically determined, scientists would embark on serious efforts to raise the human race's collective brainpower by various means, including sterilization, cloning, and artificial insemination.
Also evolving during this time were new concepts of scientific and medical ethics and the possible roles that professional ethicists and theologians should play in the critical debates over the new standards of right and wrong. Most of the savants of the 1960's espoused a then–fashionable ethical relativism, which raised concerns among some theologians and philosophers about the wisdom of allowing the scientific elite to develop policies outside the constraints of traditional ethical principles.
Some theologians, such as the Christian ethicist Paul Ramsey, persisted in proposing distinctly theological principles and values to guide such deliberations. Others, philosophers, especially those of the reigning “analytic” school in America and Britain, proposed that secular philosophical principles should serve as the sole guidelines for public policy. Some in that group, such as James Gustafson of Emory University, argued for trying to reach a “consensus” of society on medical ethics, rather than looking to traditional norms.
The result was the secularization of both theology and philosophy for public policy purposes. For example, Reed College in Portland, Oregon, sponsored a conference in 1966 titled, “The Sanctity of Life.” It included a lecture by the sociologist Edward Shils titled, “The Secular Meaning of Sanctity of Life.” Daniel Callahan, later to found The Hastings Center, a leading bioethics think tank, pressed for formulation of a new normative medical ethic that would be influenced solely by secular moral philosophy. Most agreed with Gustafson's proposal that “consensus” would be the method of achieving that formulation. This sort of thinking would become a major characteristic of the new field of bioethics yet to come.
THE THINK TANKS
As the 1970's approached, the debates and their participants moved from conferences at universities to permanent think thanks. Callahan and William Gaylin set up The Hastings Center outside New York City in 1969. There, such pioneers of bioethics as Dubos, Ramsey, Gustafson, Renee Fox, Arthur Caplan, Robert Veatch, and even Mondale and the liberal Catholic journalist Peter Steinfels held forth.
The first “research groups” at The Hastings Center addressed such issues as death and dying, behavior control, genetic engineering, genetic counseling, population control, and the conjunction of ethics and public policy. In 1971, the first volume of the Hastings Center Report appeared, a publication that was to become a bible of secular bioethics, which was just then acquiring its name. As Albert Jonsen, a pioneer of bioethics who taught at the University of Washington, noted in a 1998 book, The Birth of Bioethics (Oxford), “The index of the Hastings Center Report over the next years defined the range of topics that were becoming bioethics and constituted a roll call of the authors who would become its proponents.”
Under the leadership of the Dutch fetal–development researcher Andre Hellegers, the Kennedy Institute of Ethics (originally named the Kennedy Center for the Study of Human Reproduction and Development) opened at Georgetown University in 1971. Its mission was to study the ethical issues involved in reproductive research in a Catholic context, if a generally liberal Catholic one. Such scholars as the Rev. Richard McCormick, S. J., a Catholic bioethicist of decidedly liberal views, and later, Edmond Pellegrino, a more traditionalist Catholic bioethicist, worked out of the Kennedy Institute at various times. Also in the 1970's, a Protestant counterpart to the Kennedy Institute opened, the Institute on Human Values, sponsored by the United Ministries in Education, a partnership of the Methodist and Presbyterian churches.
Many of the conference participants of the 1960's and the think–tank scholars of the 1970's were among those testifying before the Mondale and Kennedy congressional hearings that led to the passage of the National Research Act of 1974. Many in this army of secular scholars also sat on the committee that later issued the Belmont Report with its three principles. Those scholars were the midwives at the formal “birth of bioethics” that the 1974 act mandated. They were also the first formally designated "bioethicists."
The three Belmont Principles — respect for persons, justice , and beneficence — were supposedly derived from the works of leading secular moral philosophers of the 18th, 19th and 20th centuries, chiefly Kant, John Stuart Mill, and John Rawls, a highly influential Harvard University philosopher whose 1971 book, A Theory of Justice, was a blueprint for certain radically egalitarian legal and social theories of the 1970's, such as affirmative action and wealth redistribution.
Predictably, the new bioethics was anything but systematic. The commission selectively took bits and pieces from different and contradictory ethical theories and rolled them up into one ball. Furthermore, each of the three principles of the new bioethics was prima facie: no one principle could overrule any of the other two. In dealing with real–life medical and scientific problems, the bioethicist was supposed to simultaneously reconcile the values of all three principles.
Inevitably, theoretical cracks began to form in the very foundation of this new bioethics theory. In fact, because the Belmont principles were derived from bits and pieces of fundamentally contradictory philosophical systems, the result was theoretical chaos. More problematically, when people tried to apply the new theory to real patients in medical and research settings, it didn't work because, practically speaking, there was no way to resolve the inherent conflicts among the three principles.
Furthermore, while the Belmont Report gave a nod to the traditional Hippocratic understanding of beneficence as doing good for the patient, it also included a second definition of beneficence that was essentially utilitarian: doing “good for society at large.” The report even declared that citizens have a “strong moral obligation” to take part in experimental research for the greater good of society. This obviously contradicts the Hippocratic interpretation of beneficence, and it also violates time–honored international guidelines, such as the Nuremberg Code and the Declaration of Helsinki, which bar physicians from experimenting on their patients unless it is for the patient's benefit.
The second Belmont principle, justice, was also defined along utilitarian lines, in terms of “fairness”: allocating the benefits and burdens of research fairly across the social spectrum. This Rawls–influenced definition is very different from the classic Aristotelian definition of justice as treating people fairly as individuals.
Even the third Belmont principle, respect for persons, ended up serving utilitarian goals. Respect for persons is supposed to be a Kantian notion, in which respect for the individual is absolute. But the Belmont Report blurred that idea with Mill's utilitarian views of personal autonomy. In Mills' view, only “persons” — that is, fully conscious, rational adults capable of acting autonomously — are defined as moral agents with moral responsibilities. However, those incapable of acting autonomously — infants, the comatose, those with Alzheimer's — became defined in bioethics theory as non-moral agents and thus “non–persons” with no rights. It is only a short step from this kind of reasoning to that underlying Princeton ethicist Peter Singer's “preference” utilitarianism, in which animals have more rights than young children.
Eventually, discontent began to smolder within the brave new discipline. Even the founders of bioethics have recently admitted that the Belmont principles present grave problems as guidelines for physicians and researchers. The Hastings Center's Callahan has baldly conceded that after 25 years, bioethics simply has not worked. The University of Washington's Jonsen recently wrote that principlism should now be regarded as “a sick patient in need of a thorough diagnosis and prognosis.” Gilbert Meilaender, a Christian medical ethicist at Valparaiso University, has noted “how easily the [reality and worth of the individual human] soul can be lost in bioethics.”
Another reason for the theoretical and practical chaos surrounding bioethics these days is that almost anyone can be a bioethicist. Few “professional” bioethics experts, the doctors, researchers, and lawyers who sit on hospital and government bioethics committees, have academic degrees in the discipline, and even for those few who do, there is no uniform or standardized curriculum. Most professors of bioethics don't know the historical and philosophical roots of the subject they teach; the courses vary from institution to institution; there are no local, state, or national boards of examination; and there are no real professional standards. There is not even a professional code of ethics for bioethicists.
Because of these criticisms, many bioethicists now prefer to say that their field is more a form of “public discourse” than an academic discipline, a kind of “consensus ethics” arrived at by democratic discussion rather than formal principles. The problem with this line of reasoning is that the ethical principles used in the 'discourse" are still the same–defined bioethics principles, and those who typically reach the “consensus” are the bioethicists themselves, not the patients, their families, or society at large, so the process is not exactly neutral or democratic. And if bioethics is just a “discourse,” then why are its practitioners regarded as “ethics experts”?
Furthermore, the three principles of bioethics — respect for persons (now almost always referred to as autonomy), justice, and beneficence — still pop up everywhere in the literature of a myriad of public policymaking bodies with jurisdiction over medical, social, and political decisions.
The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, created by Congress in 1978, has cited the three principles in presumably definitive reports on such wide–ranging medical–moral issues as the definition of death; informed consent; genetic screening and counseling; regional and class differences in the availability of health care; the use of life–sustaining treatment; privacy and confidentiality; genetic engineering; compensation for injured subjects; whistle–blowing in research; and guidelines for the institutional review boards set up by universities for research on human subjects.
The National Institutes of Health's 1988 Human Fetal Tissue Transplant Conference, its 1994 Human Embryo Research Panel, and the National Bioethics Advisory Commission set up by President Bill Clinton in 1995 also cite the Belmont principles as norms in their determinations of what is “ethical.” The list of bioethics-based government regulations and policies is endless.
The principles of bioethics now also pervade the “ethics” of other academic disciplines, such as engineering and business. Many colleges, universities, and medical schools require a course in bioethics in order to graduate. Bioethics has also heavily influenced legal and media ethics and is even taught in high schools.
Furthermore, the principles of bioethics themselves have led to radical consequences. Peter Singer is teaching undergraduates at Princeton that the killing of even healthy human infants can be “ethical.” Or ponder the thought of Tristram Engelhardt, a bioethicist on the faculty of the Baylor College of Medicine: “Persons in the strict sense are moral agents who are self–conscious, rational, and cable of free choice and of having interests. This includes not only normal adult humans, but possibly extraterrestrials with similar powers.” Bioethicist Dan Wikler of the World Health Organization has declared, “The state of a nation's gene pool should be subject to governmental policies rather than left to the whim of individuals.”
As bioethics supplants traditional ethics before our very eyes, few seem to question its underlying premises. But we should know it for what it is: a form of extreme utilitarianism in both its theoretical and practical forms.
It bears no relation to the patient–centered Hippocratic ethics that for nearly 2,500 years required physicians to treat every human being in their care as worthy of respect, no matter how sick or small or weak or disabled. It certainly bears no relation to Catholic medical ethics, which continue the Hippocratic tradition in light of church teachings on moral law. And bioethics offers little concrete guidance to physicians and scientists even on its own terms.
Perhaps one of these days, society will come to grips with the moral and practical mess that bioethics has created and come up with something to replace it. This time society will perhaps not rely so heavily on the self–proclaimed scientific and moral experts.
Copyright © 2001 Dianne Irving, PhD