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From Bioethics Briefings

Bioethics and Policy—A History

The word “ethics” makes many people nervous. It can connote religious or ideological dogmatism, hard-nosed rules about right and wrong. Or it can mean an endless quest to determine just what is right or wrong, a quest burdened by 2,500 years of disagreement. Yet whatever one perceives ethics to be, it is impossible to escape dealing with it. We have to ask how best to direct our personal lives, how best to live with other people, and how best to organize and manage our society. For Aristotle, ethics was a branch of politics, and politics needs to be rooted in some notion of the common good and to develop assorted laws, policies, and other means to regulate society. How best to live our private lives is a different but not unrelated question: what do I owe my fellow citizen as I try to work out what would be best for me? And what is best for me?

It has sometimes been said that, in stable times, one hardly has to think of ethics at all. Rules for living our private lives and living together with others are settled and taken for granted. A worry about ethics typically emerges when serious political, scientific, and cultural changes are afoot. That was exactly the case with the emergence of bioethics. Prior to the 1960s or so, medical ethics was mainly in the hands of physicians. It had scarcely changed from the ancient Hippocratic tradition and focused almost exclusively on the welfare of patients and medical professionalism.

By the 1960s, however, a wide range of new ethical problems came rushing into view, all of them driven by spectacular advances in medicine and biology. The old medical ethics could not contain their scope and variety: new genetic knowledge, reliable contraception and safe abortion, organ transplantation, a new and needed definition of death, sophisticated ways to keep people alive (often too long), the first signs of anxiety about health care costs, and a more educated public that was less willing to accept “doctor knows best,” physician paternalism. The issues were moving well beyond the boundaries of medical ethics, and the word bioethics was coined to capture that rich complexity.

From the first it was understood that bioethics had to cast a wide net, moving from the most intimate doctor-patient encounters at the bedside to the most public kinds of decisions on the provision of health care. Good ethics in that context meant working at both ends of a spectrum: a serious grappling with basic issues of human nature, rights, and dignity–where should medicine be taking us?–and dealing with the most practical of policy matters. The latter mean the fashioning of regulations for the allocation of, say, scarce organs for transplantation, or determining appropriate rules for terminating treatment of a dying patient. It soon came to mean, as well, the fairest way of organizing a health care system and paying for ever more expensive medical care.

That attempt to work through the full spectrum of issues has been meant to cope with an understandable but troublesome tendency in our public discourse: putting aside the larger and more fundamental human value questions and focusing mainly on those issues that lend themselves to some concrete legal or legislative outcomes acceptable in a pluralistic society. The cases that the United States Supreme Court chooses to hear illustrate the problem. The Supreme Court, it has been said, tries hard to avoid having to take on questions at the basic constitutional level, preferring that as many issues as possible be dealt with by lower courts. The Supreme Court has long understood that the more basic the issue, the more divisive it will be.

Something similar happens with public policy debates, which are not notable for comfortably taking on deep problems of social philosophy. Bioethics is willing to engage in such debates. But it recognizes that, with policy issues, action is ordinarily required, and of a very specific kind. While bioethics must speak to that dimension, the historical uniqueness of so many of the issues pertinent to bioethics does not allow for too sharp a distinction between the different philosophical and political levels of analysis. To establish good law for the definition of death, for example, it was necessary to ask some profound philosophical questions. What is it about a person that separates him from the living and the dead: an intact, working brain, or a functioning heart? Would it be for or against our notions of human dignity to allow life-saving organs be sold, or would it be likely that only the poor would be willing to sell them, and would that be just?

The ongoing debate in the United States on health care reform takes bioethics into very different territory. Health care systems and their organization and reform are meant to address the common good: what obligations do we have to help our fellow citizens stay alive and healthy? Much as the Supreme Court tries to avoid pushing all issues down to the deepest constitutional level, health policy experts try to avoid difficult values issue and clashes; they are politically the most troublesome. The most fundamental debate about health care systems globally is whether they should be managed by the government, provided by the private market, or a combination of both. If mixed, what is a good balance between the government and the market? When there are problems with and criticism of a health care system–whatever the system–the most common strategy is to improve its organization and management. What kinds of administrative and other arrangements will make it work better?

In most developed countries government control is dominant even if some market features are used. Our system is the outlier, with a mix of both government and private sector management. Over the years that system has left many people uninsured (up to 40 million or so), and numerous efforts have been made to reform it or to create a new system that aims for universal coverage. In 2010, after heated debate, the Affordable Care Act (ACA) was passed, and it has brought health care to more than 10 million people previously without insurance. Even so, it is flawed policy, leaving many people uninsured and forcing others to pay high out-of-pocket costs. Moreover, it was heavily partisan, supported mainly by Democrats and rejected by Republicans, who continue to try to eliminate or radically change it. At the core of the partisan dispute is the perennial argument on the balance between government and private sector dominance. That debate is a mix of ethics and policy, and it is often hard to distinguish which is which. With matters of that kind ethics does become a branch of politics–or maybe politics becomes a branch of ethics.

Many European countries are now experiencing financial stress with their universal care systems and gingerly turning to market and the private sector to relieve it. That is not surprising. The problem of getting a good balance between government and market becomes all the tougher with efforts to cut health care costs. Health care costs are rising in all developed countries, all of which see a growing number and proportion of the elderly afflicted by expensive chronic diseases (e.g., heart disease, cancer, diabetes). Who should bear the brunt of cost-control efforts, which will be painful? The idea of treatment based on “medical necessity” is at the core of both our public and private care, but the concept of necessity is one with very different ethical meanings. Expensive care at the end of life–when death is surely on its way but perhaps able to be delayed a few months–is necessary if one believes everything should be done for a patient regardless of cost. But if costs are not taken into account, then some patients may be deprived of the care they need.

Medical research and technology are changing our lives in dramatic ways. We live longer and in better health, and there is more we can do to raise healthy children and care for our elderly parents. But few of these advances come with problem-free or inexpensive outcomes. There are difficult ethical and policy dilemmas of caring for critically ill newborns and no less so with the care of those with Alzheimer’s disease–a growing number, in great part precisely because we are living long enough to get the disease. We call problems of that kind the dilemmas of success. The genetic possibilities for shaping our children are both exciting and fearsome. Do we really know what would be best for our children?

For years it has been said that we have a sick care system, not a health care system. That is because we place disproportionate emphasis on getting cured when we get sick, and far less on avoiding sickness in the first place through prevention. Increasingly though, prevention must have its day. But successful prevention efforts require more than lectures against smoking and bad diets. They will mean changes in the way we and our children live our daily lives: more exercise, more sidewalks, and more public transportation. Yet we have few good ideas in our society about how to bring about the kind of social change which is outside of the medical realm but has just as great an impact on our health as medical care. The best predictor of a long life is a long education, but health policy and education policy are only rarely joined or thought about together.

Bioethics can hardly solve those problems by itself. But because of the unique way it brings ethical and policy issues together it has some special contributions to make. It asks questions and pursues solution in ways different from much policy analysis. It can touch our lives at their deepest points, when life and death issues must be confronted. It can no less touch us in our daily lives, working to keep us healthy in ethical ways, yet also knowing when the quest for health becomes disproportionate in comparison with other pressing national needs. Bioethics is about 50 years old. It still has much to learn and much to give.

Daniel Callahan (1930-2019) was the co-founder and President Emeritus of The Hastings Center.