The state that we inhabit plays a significant role in shaping our lives. For not only do its institutions constrain the kinds of lives we can lead, but it also claims the right to punish us if our choices take us beyond what it deems to be appropriate limits. Political philosophers have traditionally tried to justify the state's power by appealing to their preferred theories of justice, as articulated in complex and wide-ranging moral theories—utilitarianism, Kantianism, and the like. One of John Rawls's greatest contributions to political philosophy has been his recognition that this is the wrong way for this field to approach its task. He points to what he calls “the fact of reasonable pluralism,” which is the incontestable fact that in a free society people striving to lead their lives ethically will subscribe to conflicting moral and religious doctrines, many of which will be “reasonable” in the special sense of leaving their adherents willing to cooperate with those with whom they have moral disagreements. And this means that political philosophers can no longer rely on any particular “comprehensive” doctrine in their attempts to justify the state. For doing so would be unfair to those who subscribe to a conflicting reasonable doctrine; it would mean that the coercive power of the state would not be justified to them in terms they can accept, even while they were forced to abide by its terms.

It has often been remarked that bioethics is a quintessentially American phenomenon. Broadly speaking, bioethics as a field has tended to enshrine the value of autonomy, it places individual rights above communal well-being, and it has adopted a largely permissive and optimistic view of emerging biotechnologies. In contrast to much European thinking at the intersection of ethics and medicine, American-style bioethics has been resolutely middlebrow, eschewing grand philosophical schemes in favor of pragmatic policy-making and democratic consensus. It was, then, perhaps only a matter of time before various theorists began proposing a marriage between bioethics and pragmatism, which is the homegrown American philosophy.

The philosophy of medicine cum bioethics has become the socially recognized source for moral and epistemic direction in health-care decision-making. Over the last three decades, this field has been accepted politically as an authorized source of guidance for policy and law. The field's political actors have included the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, the Department of Health, Education, and Welfare, the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research (hereinafter, “the President's Commission”), the National Bioethics Advisory Commission, and the new (2001) Council on Bioethics; these groups and agencies have (or will) set forth rules on issues ranging from the role of humans in biomedical research to the production of human embryos for research, the definition of death, and the permissibility of human cloning. The members of the field are not just scholars and teachers in an academic realm directed to both theoretical and applied issues. They are, in addition, practitioners of a conceptual and moral trade that possesses a legal and political standing. This essay critically addresses the sudden emergence of bioethics as a societally recognized source of moral guidance, a source replete with authorized moral experts. Attention is directed to moral and conceptual assumptions that have led the philosophy of medicine, and especially bioethics, to acquire a quasi-juridical/political role in guiding clinical choices, framing health-care policy, and directing court holdings.

In this essay, I argue that the way American bioethics has traditionally conceived of the distinction between public and private has given rise to some ethically problematic blind spots in its analyses to date. Furthermore, I argue that bioethics's view of the public and private spheres has reinforced a shortsighted view of bioethics's analytical sphere of influence. In particular, it has led bioethics to conceptualize issues largely from the perspective of health professionals, eschewing analyses of the problems of health and health information that patients and their intimates face outside of professional relationships and traditional health-care settings. It has also led some bioethical analyses to reflect, and to some degree reinforce, relationships of power that they might instead challenge.

When many people think of bioethics, they think of gripping issues in clinical medicine such as end-of-life decision-making, controversies in biomedical research such as that over work with stem cells, or issues in allocating scarce health-care resources such as organs or money. The term “bioethics” may evoke images of moral controversies being discussed on news programs and talk shows. But this “controversy of the day” focus often treats ethical issues in medicine superficially, for it addresses them as if they could be examined and discussed in isolation from the context in which they are situated. Such a focus on the latest controversies fails to take into account that medicine is a social institution and that the controversies in bioethics often reflect deeper social and moral issues that transcend the boundaries of medicine and ethics. If one moves beyond the issue-of-the-day approach to bioethics, one can see that the field must address these deeper issues.

The distinctive aim of applied ethics is to provide guidance as to how we ought to act, as individuals and as shapers of social policies. In this essay, I argue that applied ethics as currently practiced is inadequate and ought to be transformed to incorporate what I shall call social moral epistemology. This is a branch of social epistemology, the study of the social practices and institutions that promote (or impede) the formation, preservation, and transmission of true beliefs. For example, social epistemologists critically evaluate the comparative advantages of adversarial versus inquisitorial criminal proceedings as mechanisms for the discovery of truth.

There is a widespread feeling that health is special; the rules that are usually used in other policy areas are not applied in health policy. Health economists, for example, tend to be reluctant to offer economists' usual prescription of competition and consumer choice, even though they have largely failed to justify this reluctance by showing that health economics involves special features such as public goods, externalities, adverse selection, poor consumer information, or unusually severe consequences.

Bioethics as a field began some years before it was finally named in the early 1970s. In many ways, bioethics originated in response to urgent matters of the moment, including the controversy over disconnecting Karen Quinlan's respirator, the egregious paternalism of Donald Cowart's doctors in the famous “Dax” case, the abuse of research subjects in the notorious Tuskegee Syphilis Study, and the need to devise an intellectual framework for the development of federal regulations to protect human subjects of research. The phrase “new and unprecedented” became a common description of the topics and issues to which people who later came to be called “bioethicists” responded. It should come as no surprise that bioethics and its practitioners soon came to the self-understanding that their work was new and unprecedented, much as the innovations of biomedical science and their clinical applications were thought to be.

In this essay, I survey egalitarian and utilitarian approaches to the distribution of scarce life-saving medical resources. In my view, the major criterion for the distribution of scarce life-saving medical resources (hereinafter sometimes the “distribution of life”) should be life expectancy: we should distribute life so as to maximize life-years. In Section II, I discuss the life-year maximization approach and situate it within utilitarian theory.

With the human genome mapped, and with the mapping of more than one hundred animal genomes in progress, the amount of genetic data available is increasing exponentially. This exponential increase in data is having an immediate impact on the process of drug development. By using techniques of information technology to manipulate data regarding the genes, proteins, and biochemical pathways associated with various diseases, scientists are beginning to be able to design drugs in a systematic fashion. In the context of any given disease, scientists look to see whether a gene, a protein for which the gene codes, or another protein in the relevant biochemical pathway could be the “target” biological molecule, the “knocking out” of which would halt or slow the disease's progression. Once a target molecule has been identified and characterized structurally, drug therapies that would be likely to knock out this target can be identified and tested systematically. The merger of information technology and genetic technology has changed the process of pharmaceutical development so much that a new term—bioinformatics—has been coined to describe this new approach to such development.

The term “therapeutic misconception” was coined in 1982 by Paul Appelbaum, Loren Roth, and Charles Lidz. Appelbaum and his colleagues interviewed participants in several psychiatric studies, including a drug trial with a placebo control arm. Appelbaum's group found that many people were unaware of the differences between participating in a study and receiving treatment in the clinical setting. Rather than understanding these differences, study participants tended to believe that therapy and research were governed by the same primary goal: to advance the individual patient's best interests. Appelbaum's group labeled this mistaken belief the therapeutic misconception.

The physician who upholds the Hippocratic oath is supposed to be loyal to his or her patients. This requires choosing only the therapy that the physician believes is best for the patient. However, knowing what is best requires randomized clinical trials. Thus, clinicians must be willing to recruit their patients to be assigned at random to one of two therapies (or perhaps to a therapy or a placebo) in order to determine which is best based on the highest standards of pharmacological science.

Notwithstanding these wise pronouncements, my project here is to characterize the biological phenomenon of death of the higher animal species, such as vertebrates. My claim is that the formulation of “whole-brain death” provides the most congruent map for our correct understanding of the concept of death. This essay builds upon the foundation my colleagues and I have laid since 1981 to characterize the concept of death and refine when this event occurs. Although our society's well-accepted program of multiple organ procurement for transplantation requires the organ donor first to be dead, the concept of brain death is not merely a social contrivance to permit us to obtain the benefits of organ procurement. Rather, the concept of whole-brain death stands independently as the most accurate biological representation of the demise of the human organism.

Public statements by various international groups emphasize that decisions to undergo genetic screening, either for disease-carrier status or for predisposition-to-disease status, and decisions about the use of the resulting information should be made voluntarily by the party to be screened. For example, the World Medical Association, in its Declaration on the Human Genome Project, says, “One should respect the will of persons screened and their right to decide about participation and about the use of the information obtained.” Giving this principle a name, “voluntarism,” the Council for International Organizations of Medical Sciences, in its Declaration of Inuyama (the host city for the conference), announced that “voluntarism should be the guiding principle in the provision of genetic services.

In this essay, I shall discuss ethical issues that arise with our increasing ability to affect the genetic makeup of the human population. These effects can be produced directly by altering the genotype (through germ-line or somatic changes), or indirectly by aborting, not conceiving, or treating individuals because of their genetic makeup in ways made possible by genetic pharmacology. I shall refer to all of these sorts of procedures collectively as the Procedures. Some of the ethical issues the Procedures raise are old, arising quite generally when we can affect the well-being of people, even in the absence of the ability to affect them in the ways just described. My examination of these issues is prompted by the recent at-length discussion of them, From Chance to Choice (henceforth CC), by Allen Buchanan, Dan Brock, Norman Daniels, and Daniel Wikler.