"There is, " says the biblical book of Ecclesiastes, "no new thing under the sun." Those words are worth pondering in light of the emergence of the field of bioethics since the 1950s and 1960s. From one perspective it is a wholly modern field, a child of the remarkable advances in the biomedical, environmental, and social sciences. Those advances have brought a new world of expanded scientific understanding and technological innovation, seeming to alter forever what can be done about the vulnerabilities of nature and of the human body and mind, and about saving, improving, and extending human lives. Yet from another perspective, the kinds of questions raised by these advances are among the oldest that human beings have asked themselves. They turn on the meaning of life and death, the bearing of pain and suffering, the right and power to control one's life, and our common duties to each other and to nature in the face of grave threats to our health and wellbeing. Bioethics represents a radical transformation of the older, more traditional domain of medical ethics; yet it is also true that, since the dawn of history, healers have been forced to wrestle with the human fear of illness and death, and with the limits imposed by human finitude.
It is wholly fitting that an encyclopedia of bioethics devote some of its space to defining and understanding the field that it would examine in both breadth and depth. Yet that is not an easy task with a field that is still evolving and whose borders are hazy. The word bioethics, of recent vintage, has come to denote not just a particular field of human inquiry—the intersection of ethics and the life sciences but also an academic discipline; a political force in medicine, biology, and environmental studies; and a cultural perspective of some consequence. Understood narrowly, bioethics is simply one more new field that has emerged in the face of great scientific and technological changes. Understood more broadly, however, it is a field that has spread into, and in many places has changed, other far older fields. It has reached into law and public policy; into literary, cultural, and historical studies; into the popular media; into the disciplines of philosophy, religion, and literature; and into the scientific fields of medicine, biology, ecology and environment, demography, and the social sciences.
The focus here will be on the broader meaning, place, and significance of bioethics. The aim will be to determine not only what the field means for specific ethical problems in the life sciences, but also what it has to say about the interaction of ethics and human life, and of science and human values. Bioethics is a field that ranges from the anguished private and individual dilemmas faced by physicians or other healthcare workers at the bedside of a dying patient, to the terrible public and societal choices faced by citizens and legislators as they try to devise equitable health or environmental policies. Its problems can be highly individual and personal—what should I do here and now?—and highly communal and political—what should we together do as citizens and fellow human beings?
While the primary focus of this entry will be on medicine and healthcare, the scope of bioethics—as the encyclopedia as a whole makes clear—has come to encompass a number of fields and disciplines broadly grouped under the rubric the life sciences. They encompass all those perspectives that seek to understand human nature and behavior, characteristically the domain of the social sciences, and the natural world that provides the habitat of human and animal life, primarily the population and environmental sciences. Yet it is the medical and biological sciences in which bioethics found its initial impetus, and in which it has seen the most intense activity. It thus seems appropriate to make that activity the center of attention here.
An understanding of the emergence of bioethics will help to capture the panoramic breadth and complexity of the field. The 1960s is a pertinent point of departure, even though there were portents of the new field and issues in earlier decades. That decade brought into confluence two important developments, one scientific and the other cultural. In biomedicine, the 1960s was an era of extraordinary technological progress. It saw the advent of kidney dialysis, organ transplantation, medically safe abortions, the contraceptive pill, prenatal diagnosis, the widespread use of intensive-care units and artificial respirators, a dramatic shift from death at home to death in hospitals or other institutions, and the first glimmerings of genetic engineering. Here was a truly remarkable array of technological developments, the palpable outcome of the great surge in basic biomedical research and application that followed World War II. At the same time, stimulated by Rachel Carson's book Silent Spring, there was a gradual awakening to the environmental hazards posed by the human appetite for economic progress and the domination of nature. Taken together, these developments posed a staggering range of difficult, and seemingly new, moral problems.
Bioethics as a field might not have emerged so strongly or insistently had it not been for parallel cultural developments. The decade was the spawning ground for a dazzling array of social and cultural reform efforts. It saw a rebirth, within the discipline of moral philosophy, of an interest in normative and applied ethics, both out of a dissatisfaction with the prevailing academic emphasis on theoretical issues and in response to cultural upheavals. It was the era of the civil-rights movement, which gave African Americans and other people of color new rights and possibilities. It was the era that saw the rebirth of feminism as a potent social movement, and the extension to women of rights often previously denied them. It was the era that saw a fresh surge of individualism—a by-product in many ways of postwar affluence and mobility—and the transformation of many traditional institutions, including the family, the churches, and the schools. It was an era that came to see the enormous possibilities the life sciences offer to combat disease, illness, and death—and no less to see science's possibilities for changing the way human beings could live their lives.
Some of these possibilities had been foreseen in the important book Medicine and Morals, written by Joseph Fletcher, an Episcopal theologian who eventually came to reject religious beliefs. He celebrated the power of modern medicine to liberate human beings from the iron grip of nature, putting instead in their hands the power to shape lives of their own choosing. This vision began to be lived out in the 1960s. That decade brought together the medical advances that seemed to foreshadow the eventual conquest of nature and the cultural changes that would empower newly liberated individuals to assume full control of their own destinies. There was in this development both great hope and ambition, and perhaps great hubris, the prideful belief that humans could radically transcend their natural condition.
The advances of the biomedical sciences and their technological application had three great outcomes that came clearly into full view by the 1960s. They transformed first many traditional ideas about the nature and domain of medicine, then the scope and meaning of human health, and, finally, cultural and societal views of what it means to live a human life. Medicine was transformed from a diagnostic and palliative discipline into a potent agent able to cure disease and effectively forestall death. Human "health" more and more encompassed the 1947 World Health Organization definition with its broad emphasis on health as "a state of complete physical, mental, and social well-being and not merely the absence of disease or infirmity." Traditional notions of the living of a life were changed by longer life expectancies, the control of procreation, and powerful pharmacological agents able to modify mood and thought.
The advent of bioethics can be seen as the principal social response to these great changes. If there was any single, overarching question, it might have been this: How were human beings wisely to confront the moral puzzles, perplexities, and challenges posed by the confluence of the great scientific and cultural changes? But this large question concealed an intimidating range of more specific issues. Who should have control over the newly emergent technologies? Who should have the right or privilege to make the crucial moral decisions? How could individuals be assisted in taking advantage of the new medical possibilities or, if need be, protected from being harmed by them? How could the fruits of the medical advances be most fairly distributed? What kind of character or human virtues would be most conducive to a wise use of the new technologies? What kind of institutions, or laws, or regulations would be needed to manage the coming changes in a moral fashion?
Facts and Values
It soon became evident that such questions required more than a casual response. Two important tasks emerged. One of them, logically the first, was to distinguish the domain of science from that of ethics and values. As a consequence of the triumphalist positivism that during the late nineteenth and the first half of the twentieth century had come to dominate the general understanding of science, matters of ethics and values had been all but banished from serious intellectual discussion. A sharp line could be drawn, it was widely believed, between scientific facts and moral values (MacIntyre, 1981b). The former were solid, authoritative, impersonally true, while the latter were understood to be "soft, " relativistic, and highly, even idiosyncratically, personal. Moreover, doctors should make the moral decisions no less than the medical decisions; indeed, a good medical decision was tantamount to a good moral decision. The first task of bioethics, then, was to erase the supposedly clear line that could be drawn between facts and values, and then to challenge the belief that those well trained in science and medicine were as capable of making the moral decisions as the medical decisions.
The second important task was to find or develop the methodologies necessary to come to grips with the new moral problems. If there is no sharp line between facts and values, how should their relationship be understood? If there is a significant difference between making a medical (or scientific) decision and making a moral decision, how are those decisions different and what kinds of skills are needed to make the one or the other? Who has a right to make the different kinds of decisions? If it is neither sensible nor fair to think of moral and value matters as soft and capriciously personal, hardly more than a matter of taste, then how can rigor and objectivity be brought to bear on them?
As the scope and complexity of these two large tasks became more obvious, the field of bioethics began to emerge. From the first, there was a widespread recognition that the moral problems would have to be approached in an interdisciplinary way (Callahan, 1973). Philosophy and religion, long the characteristic arenas for moral insight, analysis, and traditions, should have an important place, as should the historical moral traditions and practices of medicine and biology. Ample room would also have to be made for the law and for the social and policy sciences. Moral problems have important legal, social, political, and policy implications; and moral choices would often be expressed through court decisions, legislative mandates, and assorted regulatory devices. Hardly less important was the problem of which moral decisions should be left to private choice and which required some public standards. While there was a strong trend to remove procreational choices from public scrutiny, and thus to move toward the legal use of contraception and abortion, environmental choices were being moved from private choice to governmental regulation. Debates of this kind require the participation of many disciplines.
While the importance of an interdisciplinary approach was early recognized, three other matters were more troublesome. First, what should be the scope of the field? The term bioethics, as it was first used by the biologist Van Rensselaer Potter, referred to a new field devoted to human survival and an improved quality of life, not necessarily or particularly medical in character. The term soon was used differently, however, particularly to distinguish it from the much older field of medical ethics. The latter had traditionally been marked by a heavy, almost exclusive emphasis on the moral obligations of physicians and on the doctor–patient relationship. Yet that emphasis, while still important, was not capacious enough to embrace the huge range of emerging issues and perspectives. Bioethics came to refer to the broad terrain of the moral problems of the life sciences, ordinarily taken to encompass medicine, biology, and some important aspects of the environmental, population, and social sciences. The traditional domain of medical ethics would be included within this array, accompanied now by many other topics and problems.
Second, if the new bioethics was to be interdisciplinary, how would it relate to the long-standing disciplines of moral theology and moral philosophy? While those disciplines are able to encompass some interdisciplinary perspectives, they also have their own methodologies, developed over the years to be tight and rigorous. For the most part, moreover, their methodologies are broad, aimed at moral problems in general, not just at biomedical issues. Can they, in their broad, abstract generality, do justice to the particularities of medical or environmental issues?
Another problem becomes apparent. An interdisciplinary field is not necessarily well served by a tight, narrow methodology. Its very purpose is to be open to different perspectives and the different methodologies of different disciplines. Does this mean, then, that although parts of bioethics might be rigorous—the philosophical parts taken by themselves or the legal parts—the field as a whole may be doomed to a pervasive vagueness, never as strong as a whole as its individual parts? This is a charge sometimes leveled against the field, and it has not been easy for its practitioners to find the right balance of breadth, complexity, and analytical rigor.
Varieties of Bioethics
As the field has developed, it has become clear that because of the range of diversity of bioethics issues, more than one methodology is needed; by the same token, no single discipline can claim a commanding role. At least four general areas of inquiry can be distinguished, even though in practice they often overlap and cannot clearly be separated.
THEORETICAL BIOETHICS. Theoretical bioethics deals with the intellectual foundations of the field. What are its moral roots and what ethical warrant can be found for the moral judgments made in the name of bioethics? Part of the debate turns on whether its foundations should be looked for within the practices and traditions of the life sciences, or whether they have philosophical or theological starting points. Philosophers and theologians have a central place in this enterprise, but draw strongly upon the history and practices of the life sciences to grasp the aims and developments of these fields.
CLINICAL ETHICS. Clinical ethics refers to the day-to-day moral decision making of those caring for patients. Because of that context, it typically focuses on the individual case, seeking to determine what is to be done here and now with a patient. Should a respirator be turned off? Is this patient competent to make a decision? Should the full truth be disclosed to a fearful cancer patient? Individual cases often give rise to great medical and moral uncertainty, and they evoke powerful emotions among those with a role in the decisions. Decision-making procedures, as well as the melding of theory and practice—what Aristotle called "practical reason"—come sharply into play. It is the concreteness of the judgment that is central here: What is to be done for this patient at this time? The experience of practicing physicians, other healthcare workers, and patients themselves takes a prominent place, yet on occasion can require a collaborative interplay with those trained more specifically in ethics.
REGULATORY AND POLICY BIOETHICS. The aim of regulatory and policy bioethics is to fashion legal or clinical rules and procedures designed to apply to types of cases or general practices; this area of bioethics does not focus on individual cases. The effort in the early 1970s to fashion a new legal definition of clinical death (from a heart-lung to a braindeath definition), the development of guidelines for the use of human subjects in medical research, and hospital rules for do-not-resuscitate (DNR) orders are examples of regulatory ethics. It can also encompass policies designed to allocate scarce healthcare resources or to protect the environment. Regulatory ethics ordinarily seeks laws, rules, policies, and regulations that will command a wide consensus, and its aim is practical rather than theoretical. The law and the policy sciences are highly important in this kind of bioethics work; but it also requires a rich, ongoing dialogue among those concerned with theoretical bioethics, on the one hand, and clinical ethics and political realities, on the other. Regulatory bioethics seeks legal and policy solutions to pressing societal problems that are ethically defensible and clinically sensible and feasible.
CULTURAL BIOETHICS. Cultural bioethics refers to the effort systematically to relate bioethics to the historical, ideological, cultural, and social context in which it is expressed. How do the trends within bioethics reflect the larger culture of which they are a part? What ideological leanings do the moral theories undergirding bioethics openly or implicitly manifest? A heavy emphasis on the moral principle of autonomy or self-determination can, for example, be said to display the political and ideological bias of culturally individualistic societies, notably the United States. Other nations—those in central and eastern Europe, for instance—give societal rather than individual concerns a more pronounced priority (Fox). Solidarity rather than autonomy would be their highest value.
The social sciences, as well as history and the humanities, have a central place in this interpretive effort (Marshall). If done well, the insights and analysis they provide can help everyone to a better understanding of the larger cultural and social dynamic that underlies the ethical problems. Those problems will usually have a social history that reflects the influence of the culture of which they are a part. Even the definition of what constitutes an ethical "problem" will show the force of cultural differences. Countries with strong paternalistic traditions may not consider it necessary to consult with patients about some kinds of decisions; they will not see the issue of patient choice or informed consent as a moral issue at all—yet they may have a far livelier dedication to equality of access to healthcare.
General Questions of Bioethics
While bioethics as a field may be understood in different ways and be enriched by different perspectives, at its heart lie some basic human questions. Three of them are paramount. What kind of a person ought I to be in order to live a moral life and to make good ethical decisions? What are my duties and obligations to other individuals whose life and wellbeing may be affected by my actions? What do I owe to the common good, or the public interest, in my life as a member of society? The first question bears on what is often called an ethic of virtue, whose focus is that of personal character and the shaping of those values and goals necessary to be a good and decent person. The second question recognizes that what we do can affect, for good or ill, the lives of others, and tries to understand how we should see our individual human relationships—what we ought to do for others and what we have a right to expect from them. The third question takes our social relationships a step further, recognizing that we are citizens of a nation and members of larger social and political communities. We are citizens and neighbors, sometimes acquaintances, and often people who will and must live together in relatively impersonal, but mutually interdependent, ways.
These are general questions of ethics that can be posed independently of the making of biomedical decisions. They can be asked of people in almost any moral situation or context. Here we encounter an important debate within bioethics. If one asks the general question "What kind of person ought I to be in order to make good moral decisions?" is this different from asking the same question with one change—that of making "good moral decisions in medicine"? One common view holds that a moral decision in medicine ought to be understood as the application of good moral thinking in general to the specific domain of medicine (Clouser). The fact that the decision has a medical component, it is argued, does not make it a different kind of moral problem altogether, but an application of more general moral values or principles. A dutiful doctor is simply a dutiful person who has refined his or her personal character to respond to and care for the sick. He or she is empathic to suffering, steadfast in devotion to patients, and zealous in seeking their welfare.
Another, somewhat older, more traditional view within medicine is that an ethical decision in medicine is different, precisely because the domain of medicine is different from other areas of human life and because medicine has its own, historically developed, moral approaches and traditions. At the least, it is argued, making a decision within medicine requires a detailed and sensitive appreciation of the characteristic practices of medicine and of the art of medicine, and of the unique features of sick and dying persons. Even more, it requires a recognition of some moral principles, such as primum non nocere (first, do no harm) and beneficence, that have a special salience in the doctor–patient relationship (Pellegrino and Thomasma). The argument is not that the ethical principles and virtues of medical practice find no counterpart elsewhere, or do not draw upon more general principles; it is their combination and context that give them their special bite.
The Foundations of Bioethics
There may not be a definitive resolution to the puzzle of whether bioethics should find its animating moral foundations within or outside medicine and biology. In any case, with time these two sources become mixed, and it seems clear that both can make valuable contributions (Brody, 1987). Perhaps more important is the problem of which moral theories or perspectives offer the most help in responding to moral issues and dilemmas.
Does an ethic of virtue or an ethic of duty offer the best point of departure? In approaching moral decisions, is it more important to have a certain kind of character, disposed to act in certain virtuous ways, or to have at hand moral principles that facilitate making wise or correct choices? The traditions of medicine, emphasizing the complexity and individuality of particular moral decisions at the bedside, have been prone to emphasize those virtues thought to be most important in physicians. They include dedication to the welfare of the patient and empathy for those in pain. Some philosophical traditions, by contrast, have placed the emphasis on principlism —the value of particular moral principles that help in the actual making of decisions (Childress; Beauchamp and Childress). These include the principle of respect for persons, and most notably respect for the autonomy of patients; the principle of beneficence, which emphasizes the pursuit of the good and the welfare of the patient; the principle of nonmaleficence, which looks to the avoidance of harm to the patient; and the principle of justice, which stresses treating persons fairly and equitably.
The advantage of principles of this kind is that, in varying ways and to different degrees, they can be used to protect patients against being harmed by medical practitioners and to identify the good of patients that decent medical and healthcare should serve. Yet how are such principles to be grounded, and how are we to determine which of the principles is more or less important when they conflict? Moral principles have typically been grounded in broad theories of ethics—utilitarianism, for example, which justifies acts as moral on the basis of the consequences of those acts (sometimes called consequentialism). Utilitarian approaches ask which consequences of a choice or an action or a policy would promote the best possible outcome. That outcome might be understood as maximizing the widest range of individual preferences, or promoting the greatest predominance of good over evil, or the greatest good of the greatest number. Just what one should judge as a "good" outcome is a source of debate within utilitarian theory, and a source of criticism of that theory. Such an approach to healthcare rationing, for instance, would look for the collective social benefit rather than advantages to individuals.
A competing theory, deontology, focuses on determining which choices most respect the worth and value of the individual, and particularly the fundamental rights of individuals. The question of our basic obligations to other individuals is central. From a deontological perspective, good consequences may on occasion have to be set aside to respect inalienable human rights. It would be wrong, for instance, to subject a human being to dangerous medical research without the person's consent even if the consequences of doing so might be to save the lives of many others. Our transcendent obligation is toward the potential research subject.
Not all debates about moral theory come down to struggles between utilitarianism and deontology, though that struggle has been central to much of the moral philosophy that influenced bioethics in its first decades. Other moral theories, such as that of Aristotle, stress neither principles nor consequences but see a combination of virtuous character and seasoned practical reason as the most likely source of good moral judgment. For that matter, a morality centering on principles raises the problems of the kind of theory necessary to ground those principles, and of how a determination of priorities is to be made when the principles conflict (Clouser and Gert). A respect for patient autonomy, stressing the right of competent patients to make their own choices, can conflict with the principle of beneficence if the choice to be made by the patient may actually be harmful. And autonomy can also conflict with the principle of nonmaleficence if the patient's choice would seem to require that the physician be the person who directly brings harm to the patient.
Another classical struggle turns on the dilemma that arises when respect for individual freedom of choice poses a threat to justice, particularly when an equitable distribution of resources requires limiting individual choice. Autonomy and justice are brought into direct conflict. Recent debates on healthcare rationing, or setting priorities, have made that tension prominent.
Even if principles—like autonomy and justice—are themselves helpful, their value declines sharply when they are pitted against each other. What are we supposed to do when one important moral principle conflicts with another? The approach to ethics through moral principles—often called applied ethics —has emphasized drawing those principles from still broader ethical theory, whose role it is to ground the principles. Moral analysis, then, works from the top down, from theory to principles to case application. An alternative way to understand the relationship between principles and their application, far more dialectical in its approach, is the method of wide reflective equilibrium. It espouses a constant movement back and forth between principles and human experience, letting each correct and tutor the other (Daniels).
Still another approach is that of casuistry, drawn from methods commonly used in the Middle Ages. In contrast with principlism, it works from the bottom up, focusing on the practical solving of moral problems by a careful analysis of individual cases (Jonsen and Toulmin). A casuistical strategy does not reject the use of principles but sees them as emerging over time, much like the common law that has emerged in the Anglo-American legal tradition. Moral principles derive from actual practices, refined by reflection and experience. Those principles are always open to further revision and reinterpretation in light of new cases. At the same time, a casuistical analysis makes prominent use of analogies, employing older cases to help solve newer ones. If, for instance, general agreement has been reached that it is morally acceptable to turn off the respirator of a dying patient, does this provide a good precedent for withdrawing artificially provided hydration and nutrition? Is the latter form of care morally equivalent to the former, so that the precedent of the former can serve to legitimate the latter? Those are the kinds of questions that a casuistical analysis would ask. At the same time, a casuistical analysis runs the risk of being too bound to past cases and precedents. It can seem to lack the capacity to signal the need for a change of moral direction (Arras).
Still another principle-oriented approach proposes a new social contract between medicine and society (Veatch). Such a contract would be threefold. It comprises basic ethical principles for society as a whole, a contract between society and the medical profession about the latter's social role, and a contract between professionals and laypersons that spells out the rights and prerogatives of each. This strategy is designed both to place the ethics of medicine squarely within the ethical values of the larger society and to make sure that laypeople have sufficient choice and power to determine the kind of care they, and not paternalistic physicians, choose. Still another approach, more skeptical about finding any strong consensus on ethical foundations, stresses an ethic of secular pluralism and social peace, devising a minimal ethic for the community as a whole but allowing great play to the values and choices of different religious and value subcommunities (Engelhardt).
Contemporary feminist approaches to bioethics, like casuistry, reject the top-down rationalistic and deductivist model of an ethic of principles (Baier; Sherwin). They reject even more adamantly what is seen as the tendency of an ethic of principles to universalize and rationalize. Feminist ethics lays a far heavier emphasis on the context of moral decisions, on the human relationships of those caught in the web of moral problems, and on the importance of feeling and emotion in the making of moral decisions. Feminist approaches, rooted in ways of thinking about morality that long predate the feminist movement of recent decades, also reflect a communitarian bias, reacting against the individualism that has been associated with a principle-oriented approach. Feminist thinkers commonly argue that those who lack power and status in society are often well placed to see the biases even of those societies that pride themselves on equality. While feminism has gained considerable prominence in recent years, it is only one of a number of efforts to find fresh methods and strategies for ethical analysis and understanding. These include phenomenological analyses, narrative-based strategies, and hermeneutical, interpretive perspectives (Zaner; Brody, 1987).
How Important is Moral Theory?
There can be little doubt that the quest for the foundations of bioethics can be difficult and frustrating, no less so than the broader quest for the foundations of ethics in general (MacIntyre, 1981a). Yet how important for bioethics are moral theory and the quest for a grounding and comprehensive theory? Even the answers to that question are disputed. At one extreme are those who believe that bioethics as a discipline cannot expect intellectual respect, much less legitimately affect moral behavior, unless it can show itself to be grounded in solid theory justifying its proposed virtues, principles, and rules. At the other extreme are those who contend that—even if there is no consensus on theory— social, political, and legal agreement of a kind sufficient to allow reasonable moral decisions to be made and policy to be set can be achieved. The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research of the early 1980s, and the National Commission for the Protection of Human Subjects in the mid-1970s, were able to achieve considerable agreement and gain general public and professional respect even though individual members disagreed profoundly on the underlying principles of the consensus. There is of course nothing new in that experience. The American tradition of freedom of religion, for instance, has been justified for very different reasons, both theological and secular—reasons that in principle are in fundamental conflict with each other, yet are serviceable for making policy acceptable to believers and nonbelievers alike.
What kind of authority can a field so full of theoretical and practical disputes have? Why should anyone take it seriously? All important fields, whether scientific or humanistic, argue about their foundations and their findings. Bioethics is hardly unique in that respect. In all fields, moreover, agreement can be achieved on many important practical points and principles even without theoretical consensus. Bridges can be built well even if theoretical physicists disagree about the ultimate nature of matter. But perhaps most important, one way or another, moral decisions will have to be made, and they will have to made whether they are well grounded in theory or not. People must do the best they can with the material at hand. Even in the absence of a full theory, better and worse choices can be made, and more or less adequate justification can be offered. As the field progresses, even the debates on theory can be refined, offering greater insight and guidance even if the theories are still disputable.
Where, then, lies the expertise and authority of bioethics (Noble)? It lies, in the end, in the plausible insight and persuasive rationality of those who can reflect thoughtfully and carefully on moral problems. The first task of bioethics— whether the issues are clinical, touching on the decisions that must be made by individuals, or policy-oriented, touching on the collective decisions of citizens, legislators, or administrators—is to help clarify what should be argued about. A closely related task will be to suggest how these issues should be argued so that sensible, moral decisions can be made. Finally, there will be the more advanced, difficult business of finding and justifying the deepest theories and principles. There can, and will, be contention and argument at each of these stages, and it well may appear at first that no resolution or agreement can be found. Endless, unresolved disagreement in fact rarely occurs in practice, and that is why, if one looks at bioethics over a period of decades, achieved agreement and greater depth can be found, signs of progress in the field. The almost complete acceptance of such concepts as patient rights, informed consent, and brain death, for instance— all at one time heatedly disputed concepts—shows clearly enough how progress in bioethics is and can be made.
Making Good Moral Decisions
Good individual decision making encompasses three elements: self-knowledge, knowledge of moral theories and traditions, and cultural perception. Self-knowledge is fundamental because feelings, motives, inclinations, and interests both enlighten and obscure moral understanding. In the end, individual selves, alone with their thoughts and private lives, must wrestle with moral problems. This sort of struggle often forces one to confront the kind of person one is, to face one's character and integrity and one's ability to transcend narrow self-interest to make good moral decisions. And once a decision is made, it must be acted upon. A decision of conscience blends moral judgment and the will to act upon that judgment (Callahan, 1991). A complementary kind of knowledge, not easy to achieve, is also needed. Even as individuals we are social creatures, reflecting the times in which we live, embodied in a particular society at a particular time. Our social embeddedness will shape the way we understand ourselves, the moral problems we encounter, and what we take to be plausible and feasible responses to them. Moral theory by itself is hardly likely to be able to give us all the ingredients needed for an informed, thoughtful moral judgment. Only if it is complemented by self-understanding and reflectiveness about the societal and cultural context of our decisions can moral theory be fleshed out sufficiently to be helpful and illuminating. Good moral judgment requires us to move back and forth among the necessary elements: the reflective self, the interpreted culture, and the contributions of moral theory. No one element is privileged; each has an indispensable part to play.
Yet something else is needed as well: a vision of the human good, both individual and collective. The biomedical, social, and environmental sciences produce apparently endless volumes of new knowledge about human nature and its social and natural setting. However, for that knowledge to be useful or meaningful, it must be seen in light of some notions of what constitutes the good of human life. What should human beings seek in their lives? What constitute good and worthy human ends? Proponents of the technological advances that emerge from the life sciences claim they can enhance human happiness and welfare. But that is likely to be possible only to the extent we have some decent idea of just what we need to bring us happiness and an enhanced welfare.
Bioethics must pay sustained attention to such issues. It cannot long and successfully attend only to questions of procedure, or legal rules and regulations, without asking as well about the ends and goals of human life and activity. Ethical principles, rules, and virtues are in part a function of different notions of what enhances human life. Implicitly or explicitly, a picture of human life provides the frame for different theories and moral strategies of bioethics. This picture should animate living a life of our own, in which we develop our own understanding of how we want to live our individual lives, given the vast array of medical and biological possibilities; living our life with other human beings, which calls up ideas of rights and obligations, bonds of interdependency, and the creation of a life in common; and living our life with the rest of nature, which has its own dynamics and ends but provides us with the nurturing and natural context of our human lives.
Is there such a thing as the human good, either individually or collectively? Is there something we can, in an environmental context, call the good of nature? There is no agreement on the answer to those questions; on the contrary, there is fundamental disagreement. Some would argue that ethics can proceed with a relatively thin notion of the human good, placing the emphasis on developing those moral perspectives that would make it most possible to live with our differences about the meaning and ends of life. Others stress the importance of the substantive issues and reflect some basic doubt about whether ethics can proceed very far, or have sufficient substance, without trying to gain some insight into, and agreement upon, those basic matters (Kass; Callahan, 1993). Those debates must continue.
The greatest power of the biomedical, social, and environmental sciences is their capacity to shape the way we as human beings understand ourselves and the world in which we live. At one level—the most apparent—they give us new choices and thus new moral dilemmas. At another level, however, they force us to confront established views of our human nature, and thus to ask what we should be seeking: What kind of people do we want to be? A choice about artificial reproduction, say surrogate motherhood, is surely a moral choice. But it is also a way into the question of how we should understand the place of procreation in our private lives and in society. To see that is to appreciate profound challenges to our understanding of sexual and familial roles and purposes. The boundaries of bioethics cannot readily be constrained. The expanding boundaries force us to take up larger and deeper problems, much as a small stone tossed into the water creates larger and larger ripples.
In its early days, contemporary bioethics was generally seen as an activity on the fringes of research and practice in the life sciences; it had no place within environmental analysis. The dominant view was that the life sciences were a strictly scientific endeavor, with questions of morality and values arising only now and then in the interstices. That view has gradually changed. The life sciences are increasingly understood as, at their core, no less a moral endeavor than a scientific one. Ethics lies at the very heart of the enterprise, if only because facts and values can no longer be clearly separated—any more than the ends of the life sciences can be separated from the means chosen to pursue them.
No less important, questions of the moral means and ends of the life sciences cannot be long distinguished from the moral means and ends of the cultures and societies that pursue and deploy them. Here, fundamental questions must be asked. First, what kind of medicine and healthcare, what kind of stance toward nature and our environment, do we need for the kind of society we want? Such a question presupposes that we have some end in view for our society, though that may not be all that clear. What is clear, however, is that it is almost impossible to think for long about bioethics without being forced to think even more broadly about the society in which it will exist and whose ends—for better or worse—it will serve.
The second question reverses the first: What kind of a society ought we to want in order that the life sciences will be encouraged and helped to make their best contribution to human welfare? The contribution bioethics makes will in great part be a function of the goals sought by the life sciences, and those in turn will be stimulated or formed by society's goals. The life sciences shape the way we think about our lives, and thus they increasingly provide some key ingredients in society's vision of itself and in the lives of the citizens who comprise society.
Understood in terms of these two broad questions, bioethics takes its place at the heart of the enterprise of the life sciences. Only a part of its work will bear on dealing with the daily moral dilemmas and ethical puzzles that are part of contemporary healthcare and environmental protection. A no less substantial part will be to help shape the social context in which those dilemmas and puzzles play themselves out. At its best, bioethics will move back and forth between the concreteness of necessary individual and policy decisions and the broad notions and dynamic of the human situation. It is still a new field, seeking to better define itself and to refine its methods. It has made a start in shaping its direction and possible contribution, but only a start.
daniel callahan (1995)
SEE ALSO: Abortion; Animal Welfare and Rights; Bioethics Education; Clinical Ethics; Death, Definition and Determination of; Environmental Ethics; Ethics; Eugenics and Religious Law; Fertility Control; Genetic Testing and Screening; Health and Disease; Healthcare Resources; Informed Consent; Life, Quality of; Life Sustaining Treatment and Euthanasia; Medical Ethics, History of; Mental Health; Population Ethics; Reproductive Technologies
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Bioethics is an interdisciplinary field of study dealing with practical ethical issues roughly at the intersection of morality, medicine, and the life sciences. Within philosophy, bioethics is one of several different areas of applied ethics, a domain within general normative ethics. The term "bioethics" was coined in 1970, but the development of bioethics as a discipline may be dated to the late 1960s or early 1970s, depending on which historical markers are used.
The scope of bioethics as a discipline is not entirely fixed, it is important to note. At least three competing visions are available. On the most restricted view, bioethics simply reduces to biomedical ethics, which encompasses ethical issues relating to the practice of medicine broadly understood and the pursuit of medical research. Even on this restricted view of bioethics, the scope extends to the ethics of our use of nonhuman animals in biomedical research, for example. On the second understanding, bioethics encompasses, in addition to biomedical ethics, ethical issues related to the life sciences and technologies. On this understanding, also included is consideration of environmental issues, for example, issues such as genetic modification of plants or the use of cloning technologies to revive extinct species of animals or plants. According to the widest view, bioethics includes the biological aspects of environmental ethics, issues related to nonhuman-animal use, and biomedical ethics. On this understanding, the ethical dimensions of vegetarianism and how global warming affects biotic communities are also bioethical issues. Interestingly, this widest understanding of the term is closest to the meaning given by biochemist Van Rensselaer Potter, who originally coined the term. However, it also offers the least common understanding of the term within the discipline. The second sense probably offers the most common understanding within the discipline, while most people working in the field of bioethics work on issues in biomedical ethics, the first sense. This entry will explore issues related to all three senses of bioethics.
Locating Bioethics within Philosophical Ethics
Ethics is the philosophical study of morality. It is to be distinguished from the empirical study of moral norms and practices. This second area of investigation is sometimes also called simply "ethics," but to distinguish it from philosophical ethics, it may more felicitously be called descriptive ethics. As a philosophical discipline, ethics may be further divided into metaethics, general normative ethics, and various areas of applied ethics. Metaethics is concerned primarily with reflections on ethics itself. Some issues within metaethics include the meaning of moral terms like "ought," "right," and "virtue"; the metaphysical status of moral norms; the proper grounds for justifying moral claims; and the nature of moral knowledge.
Normative ethics, by contrast is concerned in general with positive guidance to living morally. Normative ethics concerns questions about how to act, what kind of character to develop, and what values to live by. Within normative ethics generally, various ethical theories have been developed as guides in answering these questions. Normative moral theories lay out the structure for particular fundamental sources of normative moral value. Examples include utilitarianism (a type of consequence-based ethics), deontology (a duty-based ethics), and virtue ethics (a character-based ethics). However, normative ethics may also proceed without any particular theoretical structure and may engage directly with the various issues at stake in practical moral living.
Applied ethics is normative ethics at the level of engagement with various specific topics in practical moral life. As such, applied ethics may proceed by following some more general normative theory, by following some methodology or theory particular to the area of study, or without following any specific theoretical or methodological underpinning. The term "applied ethics" implies that general normative theories are simply interpreted in light of specific moral problems to generate practical moral answers; however, this is seldom actually the case. A better term might be "practical ethics."
Bioethics, then, is a type of practical ethics. It is on the same philosophical level as business ethics, environmental ethics generally (unless understood as a subset of bioethics), cyberethics, and a host of other specific fields dealing with particular areas of complex lived morality. The division into areas of practical ethics may not be particularly neat. As already discussed, bioethics may be understood as distinct from, or inclusive of, environmental ethics. Other areas of practical ethics, such as professional ethics, overlap with various other fields (for example, business ethics, legal ethics, and medical ethics).
History and Social Context
Many of the specific issues addressed in bioethics have historical roots. The issue of physician-patient confidentiality was addressed in the Hippocratic oath. The bioethics of how we treat animals has roots in the work of such historical figures as Porphyry (232–309) in his treatise On Abstinence from Animal Food (discussed in Sorabji 1993). More recently, the requirement that human subjects voluntarily consent to medical research was spelled out in the Nuremberg Code (International Military Tribunal 1949), following the "doctors trial" for atrocities committed as part of the holocaust.
Despite these and multiple other sources of historical precedence, the discipline of bioethics coalesced only in the very late 1960s to early 1970s. The social forces behind this formation into a specific disciplinary field include a growing social awareness of issues of medical paternalism and some unethical practices in medical experimentation; the consumer, feminist, and civil rights movements; the increased institutionalization of health care and with it a growing concern for issues of allocation; advances in biotechnology and biomedicine; growing awareness of issues of sustainable economic growth and environmental impact; and rising awareness of the conditions of animals in newly evolving factory farms.
Since its inception, bioethics has taken deep root in academia, professional education, public policy, the law, and public deliberation. Bioethics courses are offered to undergraduates as part of humanities and science curricula and to medical and other health-professional students. A variety of centers for bioethics research have been established, and numerous government commissions dealing with bioethical issues have been formed and have had varying impact on public policy. A U.S. commission of high impact was the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, the source for the Belmont Report (1979), spelling out the ethical principles guiding experimentation on human subjects. Those working in bioethics have extensively scrutinized legal cases, such as the 1989 U.S. Supreme Court case regarding Nancy Beth Cruzan, whose parents sought to withdraw life support after Ms. Cruzan fell into a persistent vegetative state. The law has also been influenced by bioethical analysis, for example by the inclusion of those working in bioethics as expert witnesses in trials. Finally, as biomedical ethical issues and advances in the life sciences have received more attention by the mass media, public arenas for debate over these issues has also grown.
Bioethics as a discipline crosses over other disciplinary boundaries, both within and outside of philosophy. Here the focus is on the philosophical aspects of the discipline. Nonetheless, some general remarks about the discipline as a whole are necessary in order to view the philosophical area of bioethics in context. This is important also because there is controversy within the field of bioethics, as has been seen, about what counts as bioethics, but also about the extent to which it is a unified discipline, and about exactly which general methodologies and areas of expertise are relevant.
It is uncontroversial that moral philosophy plays a central role within bioethics, and also that other areas of philosophical study are implicated by the topics relevant to bioethics. For example, political philosophy is central to issues of distributive justice in access to health care and to public-health measures affecting human health, as well as in adjudicating questions of public, institutional, and governmental decision-making about controversial bioethical issues such as use of stem cells and cloning of human somatic cells. In addition to addressing general issues of the relationship between the law and practical morality, philosophy of law is also relevant to determining how case law and legislative law relate to ethical decision making. Finally, although the connection is less widely recognized, philosophy of science is crucial to the investigation of some central conceptual issues in bioethics, for example, the nature of the scientific facts that often play a central role in practical ethical decisions and the meaning of the concept of human health often invoked in such ethical distinctions as that between using genetic technologies for enhancements versus using them therapeutically. Even the question of what counts as a biological kind or species is central in determining whether legitimate ethical distinctions can be made between human beings and other nonhuman animals for how we treat them, and in dealing with ethical issues related to the transhuman movement for improved humans.
While philosophy is the right place to look for expertise in clarifying the issues involved in answering moral questions and for theoretical structures intended in part to answer those questions, it is not clear that philosophy is the right place to look for positive answers to specific practical moral questions. We might then delineate two kinds of ethics expert: academic and directive. The broader issue is whether expertise in academic bioethics provides any expertise in directive ethics. There is no clear consensus within the discipline on this issue.
Outside of philosophy, disciplines relevant to bioethics include the social sciences, law, and medicine, as well as those within what has been termed the medical humanities. With such a wide range of participants, it is not surprising that there are disagreements over the scope of bioethics, the relevance of different fields to the discipline, the training necessary to qualify as a member of the discipline, the kind of expertise that such members have, and the legitimacy of the very term "discipline" in describing this diverse range of fields, methodologies, and topics of interest. What is certain, however, is that enough overlapping consensus exists to create a discipline identifiable to its members and to the general public.
Methods in Bioethics
How do moral philosophers and others working in bioethics go about dealing with the complex moral issues at the heart of many bioethical issues? The answer to this question is quite complex. Three basic approaches are available. The first approach applies established general normative theories to particular issues in bioethics. The second embraces one or several methodologies specifically developed for bioethical issues. The third method either avoids or rejects outright specific methodologies outside of basic philosophical and critical-thinking skills. These methods will be discussed in turn.
General Normative Theories
Perhaps surprisingly, the least common approach to bioethics is the approach of applied ethics, that is, the application of general normative theories to specific moral problems in bioethics. Nevertheless, there is some substantial work in bioethics that proceeds roughly along these lines. Examples include Peter Singer's utilitarian approach to the ethics of how we treat animals (2002), Tom Regan's deontological approach to that same issue (1983), and Rosalind Hursthouse's essay on abortion from a virtue-ethical perspective (1991). Of work that follows this general model, the most commonly appealed- to theories are the three just mentioned: utilitarianism, deontology, and virtue ethics. These theories are actually umbrella categories under which fall a number of specific theories.
Even the work in bioethics that falls into this first category is not really simply straightforward application of normative theories to particular bioethical problems. Rather, some particular vision of a general theoretical structure is rendered, and the bioethical problem is interpreted in light of that theoretical structure. This might involve, among other things, modifying the theory to fit the issue and arguing for some particular interpretation of the practical implications of the theory over others.
Some theories lend themselves more readily than others to application to specific moral problems. However, even the application of these theories requires extensive interpretation. For example, according to hedonistic act utilitarianism, the right action is the one that maximizes pleasure (or minimizes pain) for all those affected. In principle, then, the answer to the question "Which action is right?" is a matter of calculation of hedonistic utility output. Yet we still need to know which outcomes count as pleasures and pains, of what strength and type, and for what range of beings. (Does the calculation include sentient nonhuman animals? Future persons?)
Despite the term "applied ethics," then, normative moral theories are at a level of abstraction not conducive to straightforward application to particular moral problems. Making matters more difficult, normative theories conflict with one another, sometimes in ways that imply different practical recommendations. In such cases one has to decide which theoretical approach is the best before tackling the moral problem at hand. Moral theories are still helpful in making practical moral decisions, since they provide essential analysis of basic moral values, coherent frameworks for understanding moral issues, and general justificatory strategies for particular approaches to morality. Yet it is not even clear that a proper goal of normative moral theory is to generate specific moral directives. On a virtue-ethical view, for example, moral guidance in specific practical contexts flows from a virtuous character, not from abstract theoretical principles.
Methods Specific to Bioethics
In part because of the problems associated with the application of general normative theories of morality to problems in bioethics, a number of methodologies specific to bioethics have been developed since the inception of the discipline. It is important to note at the outset that these methods have been developed largely for biomedical ethics rather than for bioethics in the broader sense embraced in this entry. Among these methods, the most well known is the principles-based approach developed largely by Tom Beauchamp and James Childress in successive editions of Principles of Biomedical Ethics (2001) but also inspired by the more general approach to ethics favored by earlier philosophical figures such as W. D. Ross (1930). The principles approach relies on a variety of prima facie norms, the most prominent of which are four principles: beneficence, nonmaleficence, justice, and respect for autonomy. The source of these principles is supposedly common morality. No single principle is a trump principle, since each may be overridden by considerations deriving from the others in specific contexts. How the principles are spelled out in specific situations and which one(s) hold sway in case of conflict is determined by a process of specification and balancing.
Another influential approach is the casuistic approach revitalized from ancient and medieval roots by Albert Johnson and Stephen Toulmin in The Abuse of Casuistry: A History of Moral Reasoning (1988). For casuists, general ethical principles stem only from the analysis of paradigm cases. These paradigm cases offer clear moral outcomes and create a set of initial presumptions about how to resolve other cases. These presumptions hold sway unless we come across exceptional circumstances. When such exceptional circumstances arise, we must go through a process of analogical reasoning, which includes identifying the ethical values at issue, the alternate courses of action, the morally relevant ways in which cases of the sort at issue can differ (the casuistic factors), and the relevant paradigm case(s) (Strong 2000).
A third approach, narrative bioethics, is a relative newcomer but has close ties to antitheoretic trends in normative moral philosophy generally. Insofar as narrative bioethics is not a single approach, it is hard to specify exactly what it amounts to methodologically. However, a couple of themes can be drawn out to give a flavor for this type of approach. First is the ethical significance of the various narrative voices involved in ethically complex situations. In opposition to casuistry, which relies on some single paradigm case and thereby a neutral voice, narrative bioethics focuses on telling the story from the viewpoints of all the participants. In this way we can see that the neutral voice in the paradigm cases (the physicians, lawyers, and/or judges) may in fact be the most powerful voice. Further, narrative bioethics focuses not on principles as a way of solving ethical quandaries, but rather on the different ways of telling the story and the comparative choices supported by these ways. Thus the stories themselves have normative impact.
While none of these approaches offers a general normative theory for bioethics, the principles-based approach comes closest, whereas the narrative and casuist approaches offer methods to deal with bioethical issues but eschew theory. A final approach offers a general theory of practical morality with particular focus on bioethics issues. This is the theory offered by Bernard Gert, Charles Culver, and K. Danner Clouser in Bioethics: A Return to Fundamentals (1997). On their view, morality is a public system whose purpose is to minimize the amount of evil suffered by those protected by it. In opposition to the principles-based view of bioethics, this view has more specific moral rules as fundamental touchstones.
Despite the availability of these various methods, much work in bioethics actually proceeds without a specified method or by a piecemeal approach. This kind of no-method method can be criticized for its ad hoc nature and for its lack of any specific justificatory framework. Even without specific appeal to some particular methodological framework, bioethical analysis at its best avails itself of a number of useful tools in approaching areas of ethical conflict, including gathering and sifting through morally relevant factual information; providing conceptual clarity on the moral concepts at issue; engaging in casuistic reasoning (without necessarily embracing casuistry as a methodology); and offering analysis, critique, construction, and revision of moral arguments.
Themes in Bioethics
As already discussed, bioethics as understood here includes at least biomedical ethics and ethical issues related to advances in the life sciences and life-science technologies, but may be broadened to include environmental ethics and ethics related to our treatment of nonhuman animals generally. The specific topics in bioethics are numerous and change in character and focus over time as the field advances. Each anthology of bioethics lists and groups the topics somewhat differently. A small sampling of these topics from four well-known anthologies includes justice in access to health care, mother-fetus relations, research involving human subjects, reproductive technologies, eugenics, genetics, health-care policy, physician-assisted suicide and euthanasia, medical confidentiality, the physician-patient relationship, informed consent, research involving animal subjects, definitions of death, human cloning and stem-cell research, and organ donation. Most of these topics include subtopics and may also be subsumed under more general headings. Developing any additional list of specific topics in bioethics here would be unhelpful; more useful is to focus on a few general philosophical issues at the overlap of a variety of topics in bioethics.
A key issue in several central topics in bioethics is the moral status of various animal species, the environment, and human beings in various life stages. The issue of moral status is in part a question about how far the moral community extends, that is, what the scope is of those entities considered to have direct moral value. An answer to the scope question does not resolve the issue entirely, since there may be different degrees of moral status. For example, we might think that both pigs and adult human beings have some direct moral status, but still that the adult human being has more moral status.
One way in which the issue of moral status has been addressed is through the concept of personhood. This concept introduces a normative category for those kinds of beings with full moral status, namely persons. In the philosophical debate, persons are not simply all and only human beings. Rather, it is normally assumed that some capacities are required to attain the status of a person. These capacities must be judged by their moral relevance, and not simply along species lines. Some morally relevant capacities might be the ability to feel pain and to have pleasure, the ability to engage emotionally with others, the ability to act intentionally, and the ability to make rational choices. If the level of capacity required for personhood is drawn at the more basic abilities, then the category of persons will include many animals and most human beings. Alternately, if the line is drawn at the higher abilities, for example at the capacity for autonomous actions and choices, then many human beings and most animals will not be persons.
Within biomedical ethics, the issue of moral status is of crucial significance for topics such as abortion and for issues at the beginning and end of life, for example, issues of the moral acceptability of discontinuing life support for severely impaired newborns or humans in persistent vegetative states. For those wanting to extend full moral status to fetuses and severely impaired postnatal human beings, a problem arises of how to ground that moral status. If it is grounded in the particular capacities or potential capacities of those beings, then a relevant question is whether the same moral status should also be extended to some nonhuman animals.
A central question in environmental ethics is the moral status of the environment in general and of particular ecosystems or other entities. Do two-hundred-year-old oak trees have sufficient moral status that it is wrong to cut them down independently of their effect on human beings or animals with moral status? Establishing the source of such moral status has been a source of difficulty within the field. Yet reflecting on questions like this may bring to light some of the limitations of a capacities-based approach to moral status. Moreover, even if oak trees, nonhuman animals, and human fetuses do not have individual moral status, it does not follow that we can ignore their well-being. Indeed, through such ethical resources as virtuous habits of character, the relationships of persons to other beings, and the effects of our treatment of such beings on other persons, we can establish a wide range of protections for nonpersons.
A very different core topic within bioethics focuses on questions of distributive justice, that is, what the proper distribution is of social resources and burdens. Looking more closely at this issue gives a sense of the different types of theoretical resources brought to bear in bioethics and also shows how the discipline has developed. Issues of distributive justice are usually approached not from the perspective of general normative moral theory, although they may be, but from theories in political philosophy. Examples of theories constructed to deal generally with issues of distributive justice are John Rawls's A Theory of Justice (1971) and the libertarian theory found in Robert Nozick's Anarchy, State, and Utopia (1974). However, as with normative moral theories, these general approaches to the distribution of social resources and burdens are often not well suited to the specific practical issues involved in bioethics.
To deal with issues of distributive justice at a level directly relevant to bioethics, a number of specific views have been developed. Many of these are varieties of egalitarianism, a general view in distributive justice focusing on the moral foundations for an equal distribution of social goods and resources. A major question for egalitarian theories in bioethics is what should be equally distributed: health care, health outcomes, satisfaction with health? Other views of the ethically proper way to allocate health care rely on formal mechanisms, such as cost-effectiveness analysis, which has theoretical roots in utilitarianism. The least common approach to issues of distributive justice in bioethics is libertarianism, although this view has had some supporters.
The evolution of the particular topics involved in distributive justice in bioethics gives a sense of how the discipline has changed over time. Initially, there was little focus on issues of distributive justice except for the discussion of the just distribution of the burdens of research on human subjects. While the issue of research on human subjects has retained significance, with the growth of patient activism and the perception of promising new interventions the distributive focus shifted from protection from the burdens of research to assurance of equitable access to research protocols. As the ramifications of institutionally centered health care and various health-insurance mechanisms grew, issues of distributive justice in health care became focused on questions of access. Such questions as whether there is a right to health care came to the fore. These questions have remained significant, particularly in the United States, where the number of uninsured persons continues to rise along with the costs of health care.
To complicate matters further, an additional twist has been added into the mix, which is that health inequalities appear to be tied less to health-care access than to relative social and economic status. While providing equitable access to health care may retain moral significance as a matter of distributive justice, providing such access may make a relatively small dent in the problem of health inequality.
In addition to the problem of moral status and topics in distributive justice, a number of other philosophical issues lie at the core of various specific topics in bioethics. While it is impossible to discuss all these topics here, several significant questions should be noted. One set of issues focuses on the science side of bioethics. First, what is the role of scientific facts in moral decision making? In this area, relevant questions might be, "How significant is an understanding of the biological developmental stages of human fetuses to the morality of abortion?" And, "What difference does it make to issues of distributive justice whether some genetic predispositions to disease significantly lower some persons' life expectancies?" Second, how do advances in the life sciences affect ethical issues? In this area the main issue is whether advances in the life sciences actually create the need for new ethical concepts and models or whether they simply create an opportunity to reinterpret established ethical debates. Fields where this question is especially relevant include human-somatic-cell cloning and assisted-reproduction technologies. A general underlying question with regard to these and other issues at the overlap of science and ethics is the moral relevance of naturalness.
Another set of core issues has to do with the development of role ethics as a way of understanding the specific obligations of physicians, other health-care workers, researchers, and scientists to particular populations. Here the main philosophical issue is whether individuals incur some obligations simply by occupying particular social roles or whether all obligations are versions of more general social obligations. The question is not whether physicians, for example, have a specific duty to protect the privacy of some medical information. All agree that this is the case, in addition to agreeing on a number of other specific duties that physicians have to their patients. The question is rather whether this duty is the product simply of occupying a specified social role or whether it is a duty that anyone with the requisite expertise in the particular relationship would also have. If there are obligations that are completely role dependent, then one can expect that some of these may conflict with other moral obligations, thus creating the potential for moral dilemmas. By contrast, if role obligations are contextual renderings of general moral obligations, then no such conflict can be expected.
Bioethics is a relatively young discipline that has already had a dramatic impact on academic curricula, public policy, public awareness of ethical issues, health care practices, and health sciences research. Continued advances in the life and health sciences on the one hand and continued disparities in health and health care on the other hand make it likely that bioethics as a discipline will continue both to grow as a field and to evolve in focus and methodology.
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Rebecca L. Walker (2005)
Bioethics is a broad subject connecting advances in biological and medical science with moral concerns. Medical ethics is one large part of bioethics but by no means the only part. Bioethics has grown as a discipline precisely as science and technology have increasingly demonstrated that human beings are biological beings. Scientists have mapped the human genome and scanned the human brain. Researchers have evermore precisely shown the neural correlates of mental states, the genetic roots of behavior and illness. Through these developments, serious new ethical questions have been raised about studying and even modifying human biology. Bioengineering has also been used to replace parts of the human body that are no longer working or working well: dialysis kidney function, pacemakers stabilize irregular heartbeat, and respirators keep lungs pumping oxygen. Bioethics as a field is rooted in advances in technology just as is the case with the narrower field of medical ethics.
Broadly speaking, four sorts of issues in bioethics transcend the more restricted confines of medical ethics and the more global issues of environmental ethics. First are those that involve the tension between the needs of the few and possible risks to the many. The best example of this is biomedical research and the issues it poses of need, risk, consent, validity, and conflicts of interest. A second large set of issues relates the present to the future. How much and how quickly should humans change human biological nature with such technologies as cloning, stem cell research, genetic screening, selection, and therapy? A third set has to do with the response to pandemics such as AIDS and emerging "diseases of globalization" such as West Nile virus in the United States. The final set involves issues rooted in the way in which sophisticated technology enhances the disparity between rich and poor globally and provides opportunities for severe exploitation of the poorest of the poor.
Individuals and Society
Biomedical research, especially since the mid-twentieth century, has dramatically transformed medicine. The research itself, however, has been controversial and led to major national commissions reviewing the process of consent in the research setting as well as the establishment of federal oversight of clinical research funded by the government. The gold standard for research has always been the classic "double-blind" study in which matched sets of patients are given either the old standard treatment or the new treatment. Researchers do not know which patients are given which treatment so their conclusions about the efficacy of the new treatment supposedly cannot be biased by such knowledge.
But this can put health care professionals in a seriously compromising position. At some point before the end of the study a researcher may have reached a preliminary conclusion about which treatment is best. As a health care professional this person would appear obligated to provide the best available care for any patient. As a researcher, however, the individual should not destroy a study by stopping it too soon. Preliminary results are often superseded by longer-term studies. An example from the early 2000s is the case of hormone replacement therapy for postmenopausal women. The tension between individual and societal benefit in research is inevitable. What may benefit a few may raise risks for many.
For example, since the early 1990s many AIDS patients have demanded faster access to possible treatments, including vaccines that might give them short-term comfort. The AIDS community has argued that they have nothing to lose from looser access to unproven treatments or vaccines. They have a fatal disease and should, therefore, have access to any treatment that might, even hypothetically, offer some benefit even where no long term cure for AIDS is on the horizon. But mass access to unproven therapies can be dangerous for the many. A vaccine based on the use of live HIV could backfire and spread the disease. Treatments may work for a short time and encourage risky sexual behavior. If the virus then mutates around the treatment, then the result of not fully testing the treatment before widely using it may be increased suffering.
For the persons who are fatally ill, access to new therapeutic technology essentially adds no new risk to their situation. If the therapy does not work or even spreads the disease, they are no worse off. For society at large, however, the risk is much different.
The same tension between the individual and the group can also be seen in reverse. For example, if a mentally ill patient is doing well on a specific combination of medicine, it may be dangerous to this patient's health to change to a new experimental medication. Yet without studies that accurately compare older therapies with newer ones the larger community of patients that needs to be treated with psychotropic drugs will have to forgo any benefit from newer medication.
A third example of the tension between benefit to the individual and risks to the group comes from the emerging technology of xenotransplantation. This is the technology of animal-to-human transplants. Though tried sporadically since the 1960s, the use of animal organs to make up for the lack of human donor organs has never proven effective. The human body's rejection system rapidly recognizes that an animal organ, such as a pig liver, does not belong in a human body. The rejection of the foreign organ is immediate and complete.
New genetic technologies at least suggest a solution to these problems. Companies have created transgenic pigs that have two human genes. These are the precise genes that control the immediate rejection process. This means that morphologically compatible organs, such as those from pigs, might indeed be used as organs for human transplantation, at least until a human organ becomes available.
The problem is that organs from other species may carry new viruses or other diseases into the human population, diseases for which human beings have never developed any immunity. One such virus has been discovered in pigs, and others may be found. Here again is the tension between the individual and the group. No individual would accept a risky xenotransplant unless it was his or her last chance to prolong life. Persons high on the donor organ waiting would surely wait for a human organ. It is only the most desperate who would accept a transplant from transgenic pigs. For these persons the risk of a new infection is clearly outweighed by the certainty of death. For them the risk-to-reward ratio points in only one direction: Go for it. For society in general, however, the question is not nearly so easy. The general public is not terminally ill. For members of the public the risk of a new virus such as the notorious HIV is serious and likely outweighs the chance that they will need any transplanted organs in the future. For the sick individual a new technology carries one set of risk-to-reward ratios, whereas for a larger group the ratio reverses.
Can rules and policies be constructed that protect the group while providing opportunity for the desperate? At a minimum, perhaps, biological monitoring of patients and of those close to them should be required to uncover any new possible sources of disease. Should, therefore, the gravely ill be required to secure the consent of close family and friends to such monitoring before they can receive a transplant? What about possible rules for quarantine for those possibly exposed to an emergent new viral illness? These are some of the new bioethical questions that advances in genetics and transplant technology have raised.
A fourth area that displays the tension between benefits for the individual and risks to society concerns conflicts of interest within biomedical research. Research, to be valid, must remain rigorous and as far as possible objective. But care is not neutral or objective. Care focuses on one specific patient who needs help. Nowhere is the challenge of objectivity more serious than the evaluation of new drugs and other technologies that may enrich their inventors or discovers. Researchers studying the effect of a new drug may very well own stock in the company whose product they are evaluating. At the very least researchers hope to be funded again by their supporting companies. Can they really evaluate the results in a neutral way with such financial gains at stake? Can the heart surgeon who has perfected a new stent really be expected to ignore a potential windfall in evaluating this invention? But who else to go to for the best analysis of a new drug or technology? Not just any physician should be entrusted with such a serious evaluation. It seems obvious that the best specialists should perform the evaluation rather than just any individual with a medical degree. The specialists, however, are the very persons who will likely have the most to gain from positive evaluations. They are the ones whose knowledge of the field will allow them to invest wisely in just those companies whose cutting-edge technology they may very well be asked to evaluate. A positive evaluation may increase their wealth substantially. Even if they are not so invested, they certainly will want to continue doing substantial research for this company. If they offer too many negative evaluations, then they may not have their research funded in the future.
The problem of evaluating new biomedical technologies and their relationship both to individuals and to society is crucial as technology comes evermore to dominate the biological lives of humans. Specialists come to design, create, and evaluate the new technologies with less and less input from the public at large. This fact is not conspiratorial. It reflects the reality of increasingly specialized knowledge of technologies that influence human lives. The point made by Jacques Ellul in the 1950s, that humans live in a technological society from which they cannot easily abstract themselves, is nowhere better exemplified than in bioethics. Many people alive on the planet owe their lives to some biologically rooted technology, from vaccines to crops to gadgets. Without these technologies, many people would not be alive; with them humans exist as a result of technology, which transforms the biological face of the planet.
Bioethics and the Future
A second great area of bioethical inquiry concerns the use of technology to change the biological future of humanity. The first and most immediate question concerns human reproduction and the rising human population. The twentieth century witnessed a rapidly rising population not because the birthrate increased (in much of the world it actually declined) but because of increases in human longevity. The theoretical lifespan of a human being has not increased. Rather with technically improved sanitation, nutrition, and medical care, the average longevity of individuals has been dramatically increased. This increase has seriously outweighed any reduction in population from lower birthrates. The technology that has enabled this dramatic population increase has brought to the fore other questions about individual liberty to make reproductive choices and produced a rash of other technologies to control birthrates such as various forms of artificial contraception.
The development of technologies to control reproduction has produced rapidly declining birthrates in advanced countries such as Europe where declining births and aging populations has produced an "aging crisis" with too few workers to support the elderly and to supply workers for business. This sort of crisis would not be a problem if it were not for technology altering the rhythms of birth, life, disease, and death with which humans evolved for millennia.
A second form of technically driven effort to control and manipulate the human future comes in the form of attempts to screen out individuals with various forms of inborn, usually genetic, abnormalities. Of course, crude eugenics programs existed in the early part of the twentieth century whereby the "feebleminded" were permanently sterilized in an attempt to improve the biological future of humanity. Thirty thousand were sterilized in the United States. This process reached its horrible zenith in Nazi racial programs with their combination of ancient tribalism and modern technology.
More acceptable approaches to screening began in the early 1970s with the development of technologies enabling the screening of the unborn for abnormalities and of parents as carriers of genetic traits that when reproductively combined with a partner who had the same trait would produce a child with a genetic disease such as cystic fibrosis or sickle-cell anemia. These technologies provided parents ways to influence their own genetic offspring by selective abortion of any fetus that was abnormal. Over time, it could have substantial effects on the human future especially in technically advanced countries where pressures to have a "healthy child" are pronounced because it may be the only child that a specific couple has.
With the mapping of the human genome, scientists are increasingly able to pin down the specific genetic correlates of disease, from those cases in which a specific genetic abnormality causes a disease to cases in which genetics are only part of the cause of a human disease, or even to identify traits such as homosexuality. Because technology enables the identification of the genetic roots of many human traits, it increasingly empowers individuals to control their own fate and the fate of their progeny. If a woman knows, for example, that she has the BRCA1 breast cancer gene, and a first-degree relative actually has breast cancer, she then knows that she is very likely to get breast cancer. The data suggest that with these two factors, genetics and a case history, 85 percent of the time she will get breast cancer. With knowledge comes the opportunity for more rigorous screenings and the use of technology to avoid breast cancer. Knowledge of the gene changes her future and possibly that of her daughters.
Another example of how genetic knowledge changes the future is Huntington's Disease. This is a recessive genetic disorder that does not manifest itself until a person is in their late 30s After that the person progressively loses muscle control and eventually dies after a 5–7 year period. In the process they often need to be tied down to avoid hurting themselves with spastic movements. One can know even before birth whether one will have the disease or is a carrier. Knowledge of this fact surely will alter marriage, career, and family plans.
But the power of selection immediately raises the question of whether there is one "correct" sort of choice in various situations. Should some choices be encouraged, and others financially or otherwise discouraged? Should parents be encouraged to abort fetuses with some abnormality that will be costly to treat and denied insurance for future related treatments if they bear the child? In another actual example a young woman who had breast cancer in her family tree was considering the test for the breast cancer gene. Her insurer insisted that if they paid for the test they owned the results. If the results were positive, then it was highly likely that she would come down with breast cancer. The insurer made her an offer: They would pay for double radical mastectomy, or they would drop coverage for breast cancer from her policy. Knowledge changed a risk into a near certainty. It was no longer insurance against risk but a prepayment scheme for almost certainly needed services.
Genetic screening and testing thus raise direct and lively issues in the present. Issues that loom in the near future involve genetic engineering. Most authors reflect one of three possible responses: (1) passionate advocacy of human genetic engineering (Silver 1997, Stock 2002); (2) cautious acceptance (Buchanan et al. 2000); or (3) wary hostility (Kass 2002). Authors commonly begin arguing that the possibility of genetically designing human offspring is at hand. Actually, the capacity for genetic design is decades away if it is even possible. Many experts are increasingly doubtful that any rapid breakthroughs are likely. Despite several years of effort, cloning primates is turning out to be much more difficult than anticipated.
Supporters and critics of "redesigning humans" claim that whatever the current difficulties, it will eventually be possible to add or delete targeted genes. Combined with in vitro fertilization, this technology will allow people to choose the genetic destiny of their offspring. Because at some point in the future this scenario is likely to be possible, it should be the subject of discussion now. The technology would first be developed to treat genetic diseases such as Tay-Sachs or Huntington's chorea; no responsible parent could ever want such a disease to strike their descendants. But the technology that enables gene addition or deletion, that is, the "knockout" of something such as the specific gene for Huntington's or retinoblastoma, could just as easily be used to eliminate color blindness, male pattern baldness, or a tendency toward depression or addiction. But retinoblastoma, which leads to early blindness, seems clearly different than male pattern baldness, which is specifically genetic, or more loosely genetic dispositions to shyness or alcoholism. Both baldness and retinoblastoma are genetic but the argument for using knockout technology in the case of inherited blindness such as retinoblastoma seems much clearer than in baldness to which the term disorder or disease seems only loosely, if at all, to apply.
Some who have carefully studied these matters are moderate, voluntaristic optimists. They argue that, with care, patience, and thoughtfulness, humans can use technology wisely to eliminate Tay-Sachs or retinoblastoma from pedigree without committing to a complete redesign of human beings. Others such as Gregory Stock combine a sort of naive optimism with technological determinism. For them, the technology of redesign is fast approaching and will be used. So sign up to the inevitable future and go along for the ride.
The third group of writers, including conservatives such as Francis Fukuyama (2004) and Leon Kass (2002), or leftists such as Andrew Kimbrell (1998), seem like lonely fatalists who fear there is no realistic possibility of stopping the redesign of humanity. They seem fatalistic about the attempt and depressed at the prospect. Some have forsaken revealed religion as a means of guiding technology, so they cast their lot with human nature as a standard. Now, however, they seem to accept that Eden will be remade. Humankind's ability to do so, however, seems to undermine the very appeal to nature for guidance about the attempt. Hence, they are left rudderless in an ocean of uncertainty.
The same set of three views also appear in debates over human cloning. Passionate advocates such as Lee M. Silver (1997) and Stock (2002) see nothing wrong with the inevitable occasional practice of reproductive cloning. They think that in fact it will be used only occasionally, but are in principle not opposed to its widespread practice. Cautious acceptance is illustrated by Robert Wachbroit (1997), who argues that cloning can be used wisely and infrequently in cases of special need, for example, bone marrow for a child, without promoting widespread or general acceptance. Finally, Leon Kass (2002) and others, based on their conclusion that human cloning is an affront to human dignity, propose legal prohibitions on all such cloning, reproductive and therapeutic (arguing they cannot be separated and that the potential benefits of therapeutic cloning can be secured by other means).
Contemporary issues in bioethics thus pose a fundamental technological question with respect to the future: Does technology unleash the human passion for improvement in ways that reason cannot control? Is reason, as Thomas Hobbes (1588–1679) argued, a slave to the passions? If so, then technology, the supreme product of scientific reason, is only a tool to satisfy human desire for longevity, pleasure, and domination. Humans want a life of ease not disease. Technology thus aims to please by manipulating human biology to satisfy desires. Is this destiny or choice? If the former, then bioethical reflection is beside the point. If the latter, what choices should the collective bioethical wisdom of humankind encourage humans to make? Are humans now fated to a technological civilization from which they cannot escape as was argued by Martin Heidegger in his seminal essay "Question Concerning Technology" and by Ellul, Marcuse and others?
Bioethics and Globalization
A third area of bioethical inquiry especially related to science and technology concerns issues of globalization. Globalization is profoundly the result of technology. Technology has standardized production methods for low-skill workers in low-wage countries. It has increased information and travel networks to enhance information and capital flows across national and continental boundaries. Finally it has enhanced transportation of raw materials and finished goods from low-wage mines and factories to markets in the developed world. The first place where bioethics meets globalization is in the discussion of agricultural biotechnology and its impacts on peoples in developing countries.
But globalization and biology meet as well in the increasing flow of diseases around the world from those places where they have developed and coevolved with human and other species to new locations where they have created new problems for human life. The slave trade created an early instance of such problems. Sickle-cell anemia, which affects persons of African descent, carries no evolutionary advantage. Carrying the sickle-cell trait, which is recessive, does not produce the disease but nevertheless carries a resistance to virulent strains of malaria. In North America, which is malaria free, carrying the trait has no advantage, and a couple who both have the same recessive trait may conceive offspring with the disease. In sub-Saharan Africa, however, where as much as 40 percent of the population carries the trait, selective advantage is conferred. Thus moving the disease out of its evolutionary nest has raised issues for advanced countries, such as the need for screening programs for prospective parents of African descent, that would have not existed except for the global slave trade.
In another case, AIDS is a global pandemic that has grown rapidly with increased contact between human beings. HIV developed in Africa, but the effects have become global, and it has raised a number of serious new issues such as quarantine, the right to health care for those whose illness is the result of their own behavior, and a search for vaccines and specialized therapies that has consumed large amounts of research funds. Globalization has raised questions about competing needs to develop, for example, AIDS therapies versus an effective malaria vaccine—malaria being a disease that kills more persons who are much less responsible for their illness.
One final example is the appearance of West Nile virus in North America. As the name indicates, the historical location of this disease has been Africa and the Middle East. Borne by mosquitoes, it first appeared in the New York area in 1999. Over the next few years it spread virtually over the whole North American continent. It has become biologically fixed in this new location. It can be contained and treated, but will not be eradicated.
In a profound way, technology has become a part of the biological process of evolution. Technologies of globalization have spread disease from historic locations such as those of West Nile virus. Technology has become a sort of disease vector, a route by which new diseases travel to distant targets. If technology brings new populations into deep contact with what for them are new diseases, it also provides these same populations with means for evolutionary survival in the face of these and other diseases. Technology, for example, gives treatment for AIDS, means for tracking the spread of disease, and possibilities for other treatments. When technology is used to extend the power of humanity over a disease, the disease may become a serious one but one with which humanity can coevolve. Technology both causes the need for coevolution for North Americans with something such as West Nile virus and provides the means for such evolution, from spraying for mosquitoes to treatments, and if necessary to the development of vaccines. Technology thus becomes part of the Darwinian enterprise of evolutionary survival.
These problems have antecedents in the European colonization of the Americas where new diseases were brought by the settlers. But they now have more rapid global movement as a result of technology and technology can be aimed at providing cures or effective treatments of diseases of globalization.
A final way in which global growth of technology both in medicine and transportation affects bioethics is by creating an emerging transnational trade in medical services. One example is the creation of a transnational market for so-called back-office operations. Billing has been outsourced to foreign low-wage countries for years. With information networks now available it is just as easy to bill insurers from Jamaica as it is from Kansas. The benefit is that Jamaicans or Indians will work for half or less of the U.S. minimum wage. But with increasingly sophisticated computer technology and education in less developed countries, even "back-office" physician or pharmacy services can be outsourced. Highly qualified radiologists in China could read standard X rays on their monitors for a third of the cost in the United States. Complicated readings might require a physician on the scene in the United States, but the yearly mammogram and similar procedures could be sent abroad. Billing is one thing, but how would patients personally discuss their test results with physicians halfway around the globe?
Pharmacy services will also increasingly be outsourced. With pharmaceutical prices in the United States still high and transportation increasingly efficient, it will become increasingly common for such drugs as Viagra to be made in China and shipped by anonymous clerks to U.S. addresses. The key issue here is the balance between price and safety. Can or should the government interfere to "protect" individuals from possibly unwise purchases of drugs from foreign sources that lack serious regulatory frameworks?
The transnational trade in medical services also includes highly technical services, which, being provided transnationally, are available only to those who can pay up-front. The best known and most troubling of these developments is the international trade in organ transplants, chiefly kidney or liver transplants. A person needs only one kidney to survive, and in some cases people have donated a kidney to save the life of a close relative. But enter a market made possible by technology: Highly qualified surgeons in India or China or elsewhere provide transplant services in fully staffed clinics primarily for other Asians with a desire for life and the wealth to pay. The surgeon and staff are well compensated. But in India, for example, the poorest of the poor are paid about $1,500 for a kidney. This amounts to a lifetime savings for the donor, but possibly no more than the cost of a plane ticket for the recipient. This raises enormous questions of justice and exploitation. Does money exploit the poorest of the poor who desperately need assistance? Does the whole practice raise questions of justice, where the rich can pay and the poor only suffer?
These questions also occur in increasing ways in the United States. At any one time hundreds of individuals in the United States are advertising a kidney for sale on the Internet. For the most part these are desperate lower or lower middle class people trying to avoid bankruptcy, home foreclosure, or property repossession. They see such a sale as one of the few ways to improve their fortune short of illegal activity or hitting the lotto. But does their very poverty make them subject to coercion and thus unable to give free and informed consent? In the United States researchers are forbidden from using prisoners for drug experiments because of the problems of coercion and lack of the ability to give informed consent. Would not the same argument apply to the desperate and the hopeless, who are ready to sell body parts via Internet technology? Technological power to commodify even the most personal of things, one's own body, creates bioethical issues that previous eras could avoid. Technological fatalism may overstate the case, but it does seem that the questions raised are inevitable.
Thus, technology may provide a means of evolutionary development in the face of changing biology. As such, technology develops around the fundamental biological and thus bioethical imperative of preserving human life. In the context of such a nexus between technology and Darwinism, bioethics provides both the comprehensive understanding of the problem and the subsidiary rules of honesty, disclosure, integrity, and justice that provide the moral ambit within which technology may be a morally acceptable vehicle for human well-being in a fundamentally Darwinian world.
What remains is the fundamental question of all technology. Can modern technology be contained within reason, or does the eternal passion for life and health overwhelm reason's capacity to moderate human desires within an ambit of moral principles and virtues?
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Bioethics as a field is relatively new, emerging only in the late 1960s, though many of the questions it addresses are as old as medicine itself. When Hippocrates wrote his now famous dictum Primum non nocere (First, do no harm), he was grappling with one of the core issues still facing human medicine, namely, the role and duty of the physician. With the advent of late-twentieth-century science, an academic field emerged to reflect not only on the important and age-old issues raised by the practice of medicine, but also on the ethical problems generated by rapid progress in technology and science. Forty years after the emergence of this field, bioethics now reflects the profound changes in medicine and the life sciences.
Nature and Scope of Bioethics
Against the backdrop of advances in the life sciences, the field of bioethics has a threefold mission: (1) to raise important questions about the general practice of medicine and the institutions of health care in the United States and other economically advanced nations, (2) to wrestle with the novel bioethical dilemmas constantly being generated by new biomedical technologies, and (3) to challenge the presumptions of international and population-based efforts in public health and the delivery of health care in economically underdeveloped parts of the globe. While attention to the ethical dilemmas accompanying the appearance of new technologies such as stem cell research or nanotechnology can command much of the popular attention devoted to the field, the other missions are of equal importance.
At the core of bioethics are questions about medical professionalism, such as: What are the obligations of physicians to their patients? and What are the virtues of the "good doctor"? Bioethics explores critical issues in clinical and research medicine, including truth telling, informed consent, confidentiality, end-of-life care, conflict of interest, nonabandonment, euthanasia, substituted judgment, rationing of and access to health care, and the withdrawal and withholding of care. Only minimally affected by advances in technology and science, these core bioethical concerns remain the so-called bread-and-butter issues of the field.
The second mission of bioethics is to enable ethical reflection to keep pace with scientific and medical breakthroughs. With each new technology or medical breakthrough, the public finds itself in uncharted ethical terrain it does not know how to navigate. In the twenty-first century—what is very likely to be the "century of biology"—there will be a constant stream of moral quandaries as scientific reach exceeds ethical grasp. As a response to these monumental strides in science and technology, the scope of bioethics has expanded to include the ethical questions raised by the Human Genome Project, stem cell research, artificial reproductive technologies, the genetic engineering of plants and animals, the synthesis of new life-forms, the possibility of successful reproductive cloning, preimplantation genetic diagnosis, nanotechnology, and xenotransplantation—to name only some of the key advances.
Bioethics has also begun to engage with the challenges posed by delivering care in underdeveloped nations. Whose moral standards should govern the conduct of research to find therapies or preventive vaccines useful against malaria, HIV, or Ebola—local standards or Western principles? And to what extent is manipulation or even coercion justified in pursuing such goals as the reduction of risks to health care in children or the advancement of national security? This population-based focus raises new sorts of ethical challenges both for health care providers who seek to improve overall health indicators in populations and for researchers who are trying to conduct research against fatal diseases that are at epidemic levels in some parts of the world.
As no realm of academic or public life remains untouched by pressing bioethical issues, the field of bioethics has broadened to include representation from scholars in disciplines as diverse as philosophy, religion, medicine, law, social science, public policy, disability studies, nursing, and literature.
History of Bioethics
Bioethics as a distinct field of academic study has existed only since the early 1960s, and its history can be traced back to a cluster of scientific and cultural developments in the United States during that decade. The catalysts for the creation of this interdisciplinary field were the extraordinary advances in American medicine during this period coupled simultaneously with radical cultural changes. Organ transplantation, kidney dialysis, respirators, and intensive care units (ICUs) made possible a level of medical care never before attainable, but these breakthroughs also raised daunting ethical dilemmas the public had never previously been forced to face, such as when to initiate admission to an ICU or when treatments such as dialysis could be withdrawn. The advent of the contraceptive pill and safe techniques for performing abortions added to the ethical quandaries of the "new medicine." At the same time, cultural changes placed a new emphasis on individual autonomy and rights, setting the stage for greater public involvement and control over medical care and treatment. Public debates about abortion, contraceptive freedom, and patient rights were gaining momentum. In response, academics began to write about these thorny issues, and scholars were beginning to view these "applied ethics" questions as the purview of philosophy and theology. "Bioethics"—or, at the time, "medical ethics"—had become a legitimate area of scholarly attention.
In its early years, the study of bioethical questions was undertaken by a handful of scholars whose academic home was traditional university departments of religion or philosophy. These scholars wrote about the problems generated by the new medicine and technologies of the time, but they were not part of a discourse community that could be called an academic field or subject area. Individual scholars, working in isolation, began to legitimize bioethical issues as questions deserving rigorous academic study. But bioethics solidified itself as a field only when it became housed in institutions dedicated to the study of these questions. Academic bioethics was born with the creation of the first "bioethics center."
Ironically, academic bioethics came into existence through the creation of an institution that was not part of the traditional academy. The first institution devoted to the study of bioethical questions was a freestanding bioethics center, purposely removed from the academy with its rigid demarcations of academic study. The institution was the Hastings Center, originally called The Institute of Society, Ethics and the Life Sciences, which opened its doors in September 1970. Its founder, Daniel Callahan, along with the psychiatrist Willard Gaylin, M.D., created the center to be an interdisciplinary institute solely dedicated to the serious study of bioethical questions. Callahan, a recently graduated Ph.D. in philosophy, had been one of the isolated scholars working on an issue in applied ethics, and he had found himself mired in complex questions that took him far afield from the traditional boundaries of philosophy. His topic, abortion, required engagement with the disciplines of law, medicine, and social science, which he felt himself unprepared to navigate. With academic departments functioning as islands within a university, it seemed that truly interdisciplinary work was impossible. The Hastings Center was founded to create an intellectual space for the study of these important questions from multiple perspectives and academic areas.
The second institution that helped solidify the field of bioethics was the Kennedy Institute of Ethics, which opened at Georgetown University in 1971. The founders had similar goals to those of Hastings, though they placed their center inside the traditional academy. While housed outside of any particular academic departments, the Kennedy Institute came to look more like a traditional department, offering degree programs and establishing faculty appointments along a university model.
From these modest beginnings, the field of bioethics exploded, with dozens of universities following suit, creating institutions whose sole function was the study of bioethical issues. Its growth was fueled by the appearance both of new technologies such as the artificial heart and in vitro fertilization and new challenges such as HIV. Bioethics was now permanently on the academic map and central to public discourse.
Institutions of Bioethics
Since the early 1970s, as bioethics has gained legitimacy, there has been an increasing trend of bioethics centers becoming academic departments. Originally modeled on the structure of an independent "think tank," the bioethics centers of the early twenty-first century are often housed within either a medical school or school of arts and sciences, indistinguishable in structure from any other departments in those schools. The professionalization of bioethics has taken it from the academic margins to the center, and with this development has come all of the trappings of traditional academics, such as tenure, degree programs, professional conferences, and academic journals.
Beginning in the 1980s, medical schools began housing bioethics institutes either as departments of medical ethics or departments of medical humanities. Located within an undergraduate medical school, the duties of these departments include the ethics education of the M.D. students. Whereas the original bioethics centers had as their primary focus the production of scholarly research, departments of bioethics have pedagogical obligations and are viewed as institutions designed to serve the narrower educational mission of the school. Bio-ethics institutions that are instead housed within a school of arts and sciences have the same type of pedagogical obligations, though perhaps serving a different student population, namely, university undergraduates or graduate students. Departments of bioethics, depending on their configuration, offer traditional undergraduate or graduate courses, undergraduate majors or concentrations, graduate degrees (usually master's degrees), undergraduate medical school ethics training, and/or residency ethics training. By the early twenty-first century, there were more than sixty master of bioethics programs in the United States, attracting a diverse student population including recent undergraduates; students pursuing joint J.D., M.D., and Ph.D. degrees; and midcareer professionals from the fields of law, medicine, and public policy whose work requires specialty training in the field of bioethics.
Another result of the professionalization of bioethics was the pressure to publish in traditional scholarly venues, such as academic journals. But the formation of a new academic field of study necessitated the creation of academic journals in which to publish these novel scholarly works. Journals emerged that were designed solely for works in the field of bioethics, including the Hastings Center Report, the Kennedy Institute of Ethics Journal, the American Journal of Bioethics, and Bioethics. But the mainstreaming of bioethics into the academy also opened up space within traditional medical and scientific journals for scholarly works in bioethics. Research in bioethics is now routinely published in the likes of the Journal of the American Medical Association, the New England Journal of Medicine, Science, and Nature.
Perhaps the institution most effectively used within the field of bioethics is the Internet. All major bioethics institutes, centers, and departments (and some journals) have elaborate Web sites, not only offering information about the specific institution, faculty, and degree programs, but also undertaking an educational mission to raise the level of public debate about current bioethical issues. These Web sites offer substantive information for individuals seeking to become better informed about these issues. One of the most developed Web sites is the companion site to the American Journal of Bioethics (www.bioethics.net). This Web site not only offers actual scholarly works in the field but also includes a high school bioethics project, job placement information, a "Bioethics for Beginners" section, and a collection of bioethics news stories from the popular press, updated daily, with direct links to the original news articles.
The Methods of Bioethics
The founders of the field of bioethics and its first leaders were largely theologians or philosophers. Reflecting the scholarly conventions of their home disciplines, the first works in bioethics centered on a normative analysis of bioethical issues, arguing for or against the moral permissibility of a particular technology, practice, or policy. Starting in the 1970s, these philosophers and theologians were joined by physicians and lawyers, who too made normative claims about bioethical problems. But by the mid-1990s, bioethics was attracting populations of scholars who had not previously been well represented in the field, namely, social scientists and empirically trained clinicians, both physicians and nurses. With the entry of these new groups of scholars, the "methods" of bioethics began to shift, mirroring the methodologies of the new disciplines becoming central to the field. With this change, bioethics included not only normative analysis but also the empirical study of bioethical questions, what Arthur Caplan has called "empiricized bioethics."
Empiricized bioethics takes one of two forms: either it seeks to collect empirical data needed to shed light on a bioethical problem, or it attempts to stand outside the discipline in order to study the field itself. Projects taking the first form use either qualitative or quantitative social science methodology to collect data needed to make persuasive bioethical arguments. These empirical studies might explore, for example, patient comprehension of medical information, patient and family experience with medical care, the ability of children or incompetent adults to give consent for research participation, or the frequency with which practitioners face particular ethical dilemmas.
Projects taking the second form explore the way in which the field of bioethics is evolving, the influence it has had on policy formation, the methods and strategies it employs, the field's understanding of itself, and its place in public life and contemporary academia. One very prominent contemporary method employing this strategy is narrative bioethics, or what might be called "deconstructionist bioethics." Using the insights of literary criticism, these bioethicists examine the discourse of the field to reveal its biases, conventions, and assumptions, making the field more self-reflective about its motives and goals. Along the same line, the field has seen the development of feminist bioethics and disability bioethics, both of which focus on issues of inclusion and exclusion, voice, and their confluence on particular substantive issues. Altogether, the empirical methods of bioethics have been so well received in the field that by the early twenty-first century, all bioethics centers and departments had representation from the social sciences or clinical medicine, and in many cases the empiricists constituted the majority of center or department membership.
One final methodology that has had a significant presence in medical humanities departments is literary analysis, in which literary texts are used as a vehicle for the ethics education of clinicians in training. These medical humanists use first-person illness narratives or first-person testimonies from clinicians, as well as important works in fiction, to teach health care professionals about the ethical issues involved in being both patient and practitioner.
Current Issues in the Field: Bioethics
in the Early Twenty-First Century
The bioethical issues being addressed by the field are too numerous to count, but the flavor of bioethics in the early twenty-first century can be conveyed by an exploration of the bioethical implications of genetic research, health care access reform, and stem cell research, arguably the most pressing issue in the field to date.
Advances in the science of genetics, including the Human Genome Project and the ability to find genetic markers for particular diseases, have raised difficult ethical dilemmas. Two of the most pressing issues are preimplantation genetic diagnosis and the genetic testing of adults. With the technology to identify inherited diseases in the early embryo comes questions about which embryos ought to be implanted, which diseases constitute a legitimate moral reason to discard an embryo or become the criterion for embryo selection, which traits ought parents be allowed to select or test for, and who ought to have access to this technology and on what grounds. For example, while there might be widespread support for testing embryos that might carry the trait for Tay-Sachs disease or cystic fibrosis, there are troubling questions about selecting embryos on the basis of sex, nonlethal trisomes (such as Down's syndrome), or aesthetic or character traits that technology may someday be able to screen for. In adult medicine, genetic tests already exist to detect mutations leading to some forms of inherited breast cancer and to Huntington's disease. Here, questions arise about privacy of health care information, psychological impact, stigmatization, lack of informed consent, health insurance access, and familial disclosure. With the advent of commercial genetic testing centers, patients will soon have easy access to genetic tests independent of the practice of clinical medicine, without the benefit of genetic counseling services, professional psychological support, or adequate, and possibly accurate, clinical information. The Internet, for example, will likely bring universal access to any genetic test as it becomes available.
Emerging Issues for the Future
As the twenty-first century unfolds, new and expanding areas of research will require increasing attention to their related ethical aspects.
Knowledge about the human brain holds much promise and offers much needed hope to those who suffer from disorders of the brain and mind. The relative accessibility of the brain through biochemical, electrical, and magnetic stimulation, as well as surgery, makes neurological interventions tempting as knowledge of brain structure, wiring, and chemistry grows. Nevertheless, there has been little systematic analysis of the ethical implications of the revolution in the brain sciences. This revolution raises numerous ethical questions and issues:
- The "essence" of personhood and identity
- The relation between physiological structures and higher functioning ("mind" or "self")
- The ways in which abnormalities in the brain might account for atypical or antisocial human behavior
- The acceptability of using pharmaceuticals, implants, or other interventions to enhance innate traits such as memory, attention span, or musical ability
- The legitimacy of intervening to alter aspects of personality, mood, or emotion; to assess the effectiveness of treatments or incarceration in modifying criminal behavior; or to detect predispositions to both desirable and undesirable behavior in persons who cannot themselves consent
New knowledge of the brain will soon have an enormous impact on the legal and penal systems. How to integrate knowledge of the brain into the practice of forensics, the prosecution of persons accused of crime, and the screening of those seeking parole are all issues likely to become pressing in the not-too-distant future. Equally controversial will be the use of new knowledge about the brain in the detection and prevention of the onset of undesirable behavior in adolescents and children and in trying to improve or enhance their capabilities and skills.
While there has been much attention in bioethics to the mapping of the human genome and to the nuclear transfer techniques used to clone Dolly the sheep and other animals, the most provocative genetics-related issue facing society during the first half of the twenty-first century is likely to be to what extent ought humans design their children. Rudimentary steps toward making eugenics a reality are all around us.
The finalization of a crude map of the human genome and other animal and plant genomes means that medicine will soon have at its disposal a huge amount of information about the contribution genetics makes to a wide variety of traits, behaviors, and phenotypic properties. In addition primitive efforts to introduce genes into the cells of the human body through gene therapy will be refined to the point at which genetic surgeons should be able to introduce targeted genes with specific functions into both somatic cells (cells in a person's body) and germ-line cells such as the stem cells in the testicles that create sperm in a man's body. And the ability to analyze the genetic makeup of sperm, eggs, and embryos has already led to some infertility clinics offering genetic testing for diseases as a part of their standard care for their clients. This means that parents of tomorrow, both infertile and fertile, will increasingly look to medicine to diagnose potential problems and risks before babies and children are created. The issue will not be whether humans should design their children but to what extent and with what if any limits on how far one may go to improve, enhance, and optimize them.
When should a person die?
Another fascinating emerging ethical issue is whether humanity should seek to control the time of death. It is one thing to agree that individuals who are dying have the right to withdraw or not initiate medical treatments. It is quite a different matter to say that someone who is not terminally ill but is suffering from a terribly disabling chronic condition, a severely diminished quality of life, or the prospect of decades of life in a state of dementia or extreme frailty should have the right to medical or technological assistance in dying as is already the case in the Netherlands, the state of Oregon, and Colombia. The focus of these debates, however, has been almost exclusively the terminally ill. As the population of the world ages over the course of the twenty-first century, more and more persons may begin to ask or demand the right to control the timing of their death, whether they are deemed terminally ill or not.
See also Biology ; Death ; Eugenics ; Life ; Medicine: Europe and the United States .
Callahan, Daniel. "Bioethics as a Discipline." Hastings Center Studies 1, no. 1 (1973): 66–73.
Caplan, Arthur L. Am I My Brother's Keeper? The Ethical Frontiers of Biomedicine. Bloomington: Indiana University Press, 1997.
Reich, Warren T. "The Word 'Bioethics': Its Birth and the Legacies of Those Who Shaped Its Meaning." Kennedy Institute of Ethics Journal 4, no. 4 (1994): 319–336.
Rothman, David J. Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making. 2nd ed. New York: Aldine de Gruyter, 2003.
BIOETHICS . Bioethics as a discipline clearly did not begin fully developed, and its origins are somewhat unclear. Very remote origins can be traced to late medieval discussions in Roman Catholicism concerning what means were required to preserve life in the face of illness. These discussions, commented on by the majority of theologians, initiated the famous distinction between ordinary and extraordinary means of preserving life. The assumption was that all had an obligation to preserve their own lives because life was a gift of God and while humans exercised stewardship over life, they had no dominion over it. Thus the question became "does proper stewardship mandate doing everything possible to preserve life?" The clear consensus throughout the Middle Ages was that it did not: one did not need to be a hero and submit to any number of painful and marginally useful treatments, nor did one have to bankrupt one's self or one's family, nor did one have to move to a better climate, or seek out the best and most healthful foods. If one would be embarrassed by a physical examination, one could decline the exam. Thus began a long conversation over the problem of the ethical management of one's death.
In various religious communities this tradition continued in pastoral counseling: the provision of theological guidance to those in various crises, spiritual, moral, or medical. Pastoral counseling in some form was an element of all denominations, more formal in some and more individualized in others. But the reality of religious institutions both reflecting on and expressing their concern for the sick and dying ensured that questions of significance related to medical practice would be an important part of the tradition.
Thus in the United States, the real locus of the beginning of bioethics as a discipline, when questions about the application of new technologies in medicine began to come to the fore, particularly issues of death and dying—the use and removal of ventilators, the distribution of the scarce resource of the kidney dialysis machine—theologians were receptive and, because of the religious bioethics tradition, did not have to begin from square one. A conversation was already in place and new questions could be brought in and the conversation furthered.
The first formal structuring of bioethics took place at the Hastings Center—founded in 1971 and originally known as the Institute for the Study of Ethics and the Life Sciences. While these developments occurred under the direction of the center's founders, a philosopher and a psychiatrist, the majority of the individuals in the first groups invited to meetings were theologians or people in religious studies, or clergy. While the perspectives brought to the table were sectarian, the discussions were surprising ecumenical and nondoctrinaire. This mix of participants also characterized the first Presidential Bioethics Commission.
Philosophers were also part of this early mix but their entry was more difficult, perhaps because many philosophers were, at that time, trained in the analytic tradition and were more interested in problems of theory. Thus the turn to practice was a little complicated and was not fully validated until the development of the field called applied philosophy, another birth accomplished only under difficult circumstances. While theory has always been part of theological reflection, people in theology and the ministry in particular were used to discussion of cases and were immediately attuned to the specifics of the problems brought to bioethics.
Following the foundation of the Hastings Center and then of the Kennedy Institute of Ethics, bioethics saw a blossoming of undergraduate courses and bioethics centers nationwide. These centers were staffed by individuals who had theological or philosophical training, but were typically not versed in the sciences or the new developments in medicine and technology. Thus one of the first functions of both of these bioethics centers was to offer summer courses in the new field to get people scientifically and technically up to speed. Eventually these people found their way into medical schools and programs in medical ethics and medical humanities became an established part of the medical curriculum.
These developments were quickly followed by the creation of graduate courses, journals, conferences, graduate programs, and a professional society: the American Society of Bioethics and Humanities. This society, as the premier professional bioethics organization, is reflective of major changes in the field. Only a minority of the society's members comes from theology or religious studies backgrounds. The majority comes from the social sciences, medicine, literature, anthropology, and so on. Although there have been sessions on religion at the society's meetings, they are not a standard feature of conventions. People in theology or religious studies seem to do much of their professional work in bioethics through special sessions or programs in associations such as the American Academy of Religion, the Society of Christian Ethics, the Society of Jewish Ethics, and other denominational professional societies.
While many individuals at work in the field of bioethics are theologians or in the field of religious studies, the discipline seems to have moved from these to other academic disciplines as new questions are examined and new discussions established. This shift may also reflect a growing secularization and pluralism within American culture and a greater interest in the public policy dimensions of bioethical debates, debates in which religious perspectives are seen as particularly divisive. Thus the religious perspective, though the inspiration for many of the early discussions in bioethics, has now moved to the side as new disciplines bring their perspectives forward.
A Shift in Context
Probably one of the largest shifts in bioethics has been from clinical perspectives to public policy issues. The early decades of bioethics were centered on the clinical experience of the physician-patient relationship. In part this was because of the case-oriented nature of bioethics' theological background, but it was also because the physician-patient relationship was the dominant locus of the practice of medicine. Here the discussion, from both theological and philosophical perspectives, centered on the values of the patient and the physician, how they complemented each other, how they clashed, whose would take priority, and how were both of their value sets to be respected in practice. In these discussions, principles were appealed to as well, whether theological or philosophical. But the focus of the discussion was always the individual patient and the individual physician. Both theology and philosophy were comfortable with this framework.
The problem now is that both the field and the critical questions in bioethics have moved from a primary emphasis on the physician-patient dyad to how that dyad is understood within the context of a variety of public policy issues, relating to such complexities as the variety of health insurance plans, hospital organization, research agendas, the funding of public and private health-care delivery systems, and the requirements of care for a variety of specialized populations: the newborn, the disabled, the incompetent, the aging. A major focus is now on what could be termed institutional bioethics, in that the questions have to do with issues of justice within the system of health care itself and with what services are available and to whom and how are they delivered.
Needless to say, such questions give rise to a variety of competing values-based positions regarding priority of needs, equitable distribution of resources, and ease of access to various programs. While religious communities are both providers of health care and participants in these discussions, the public debate is complicated by the presence of a variety of competing actors: insurance companies, HMOs, advocacy groups for various diseases and programs, and the Social Security, Medicare, and Medicaid programs to name just a few. While all recognize that values are at the center of the debate, the pluralistic nature of U.S. society is a complicating factor precisely because of the competition of values originating from so many different communities.
While it is the case that a variety of forms of national health care exist in many other countries, many of these plans are beginning to experience crises stemming from the need for increased funding, a demand for improved services and better and more rapid access to them, and the pressures put on such systems by the needs of an expanding population of aging citizens. Additionally, due to recent immigration into Europe, the problems associated with pluralism are beginning to be experienced there, and this will undoubtedly have an impact on various national health-care systems. Many of the debates in the United States will soon be part of the discussion in Europe.
Embryonic Stem Cell Research: American Perspectives
One particularly contentious debate in the field of bioethics concerns the question of at what developmental stage human life becomes subject to morally and legally mandated protections. In the United States, this debate was brought into focus by the 1973 U.S. Supreme Court case Roe v. Wade. This decision decriminalized abortion in the first trimester, permitted some state regulation of abortion within the second trimester, and permitted more regulation in the final trimester. It set off both a firestorm of debates and about 1.3 million abortions per year in the United States, though these figures vary by the year. The debate has been complicated by the introduction of a variety of fetal diagnostic technologies, including preimplantation genetic diagnosis, and of prenatal technologies such as amniocentesis and ultrasound. Additionally, part of the practice of in vitro fertilization (IVF) is the freezing of embryos not immediately used to achieve a pregnancy. Their status and disposition has been the subject of moral, religious, clinical, court, and public policy debates. Finally, given the possibilities of embryonic stem cell research, new questions are being raised: can human embryos be generated expressly for research purposes, are human embryos generated by cloning morally the same as those generated in the customary way, and might frozen embryos be used in this research? The public policy of the Bush administration enunciated in August 2002 was a political finesse that permitted federally supported research on already existing lines of cells derived from embryos, but prohibited the creation of any new cell lines for research from either embryos in storage in IVF clinics or embryos generated expressly for such research. Originally scientists thought that there might be some sixty-three such cell lines available for research but the actual number of useable lines is around ten. Many hailed this decision as an appropriate compromise that permitted some research to go forward but also protected human life by prohibiting the future destruction of embryos for this project. Additionally, in 2003 and 2004, the states of California and New Jersey passed legislation permitting embryonic stem cell research, thus setting a precedent for other resolutions regarding the permissibility of such research as well as the funding of it.
In general, religious communities in the United States have varied considerably in their reaction to this solution. The most conservative is the Roman Catholic community, which prohibits absolutely any direct abortion or any procedure that involves killing the embryo, though it does permit research designed to benefit the fetus. This leads to the position that any research predicated upon the destruction of human embryos is totally prohibited, regardless of whether the cell lines are already in existence or generated and destroyed for a specific research project. This position is shared by the Orthodox Bishops of America for precisely the same reason: the sacredness of human life from its inception. The other religious denominations typically approve of some abortions under certain circumstances, though this moral approval is given reluctantly.
Many other denominations tend to be conservative on the use of the embryo in research, typically arguing against the embryo's being reduced to an object and its possible commodification. Officials in the Methodist Church have suggested a moratorium on embryonic stem cell research and already deplore the use of research that produces what they call waste embryos. The Presbyterian Church, which both recognizes the moral status of the embryo/fetus and also supports a woman's right to abortion, affirms the use of fetal tissue and embryonic stem cells from surplus embryos from IVF for research that could lead to lifesaving breakthrough in medicine. They require a proportion between the significance of the research and the destruction of the embryo.
Judaism affirms the traditional doctrine of stewardship by acknowledging that our bodies are on loan to us from God. This then generates a corresponding obligation to seek cures for diseases. However, in Judaism, as in Christianity, one finds a variety of positions. The more liberal position argues that because abortions are permitted, based on the Talmudic teaching that for the first forty days the fetus is as water, one could argue that the destruction of the fetus is not murder. Such destruction would be possible as one way of fulfilling the obligation to seek cures for serious diseases. Other experts within Judaism are more conservative in their position on abortion. Therefore, they do not support the destruction of embryos for research. Because of their concern for protecting human life, these experts would limit such research with stringent regulations. Still others respond that such limitations on research, though intended to protect human life, also erect barriers to curing disease, relieving pain and suffering, and promoting health.
Public policy implications
This debate has complicated the public policy process of deciding on whether embryos can be used in research in at least two ways. First, there is great controversy over who is appointed to various commissions. Second, there is debate within the commissions themselves. And both are subsets of the critical litmus test in U.S. politics: one's position on the moral status of the human embryo. The goal in appointing national commissions is to achieve balance or adequate representation of particular positions, especially those that represent the main constituencies of the one doing the appointing. That process then creates problems for the commission in its deliberations, frequently manifest by lopsided votes or minority reports, or by the final recommendations not being accepted or being left to languish. The main problem is that the politicization of the process inhibits genuine debate and research that might prove profitable for the country as a whole. Additionally, while the individuals chosen for such panels or commissions are generally qualified, the main criterion guiding their selection is their advocacy of a particular viewpoint.
Embryonic Stem Cell Research: European Perspectives
In Europe the situation is somewhat different and is a function of the developing policies of the European Union (EU) and of how the legislation of individual countries within the EU relate to them. The situation is also complicated by the political situations and religious traditions of various countries. And the situation is very dynamic.
The nub of the issue is the question of whether human embryos can be generated for research or whether only surplus embryos from IVF clinics can be used. In November 2003, the European Parliament, in a 298-242 vote with 21 abstentions, voted to permit the use of EU funds for experimenting on human embryos that were no older than fourteen days and were from IVF clinics. In the Parliament's Environmental Committee, amendments to ban human embryonic stem cell research were blocked. The European Union Industry Committee, in a 28-22 vote with 2 abstentions, permitted the use of such cells for research under strict conditions. In addition, this committee stated that the funding should depend both on the contents of the research proposals and the legal framework of the individual country. Additionally, the committee ruled that priority should be given to adult stem cells; it also permitted the funding of research using embryonic or fetal cells from spontaneous or therapeutic abortions. In December 2003, the EU voted not to permit the use of EU money on research using new human embryos.
With respect to individual members of the EU early in the twenty-first century, Belgium, Denmark, Finland, Greece, the Netherlands, Sweden, and the United Kingdom permit taking cells from surplus embryos for research. However, Austria, Germany, France, Ireland, and, under some circumstances, Spain prohibit such obtaining of these cells. Luxembourg, Italy, and Portugal have no specific legislation as of 2004. Nonetheless, Italy is proposing legislation to prohibit any research on generating embryos for research and the destruction of human embryos. Spain, however, appears to be ready to permit obtaining cells from surplus embryos from IVF if donor consent is obtained. Germany permits the use of human embryos for research only if the cells have been imported and if the research is critical and no alternatives to human embryonic stem cells are available.
In Europe in general, there has been relatively strong resistance to a variety of forms of genetic engineering, whether applied to humans, animals, or crops. This movement has been particularly strong in Germany, an understandable position given the eugenic dimension of the National Socialist Party. Other countries, including Ireland, have constitutions that give strong protection to early human life. England permits both cloning for therapeutic purposes (generating embryos for therapy in the donor of the cell) and the use in research of human embryos and cells from them so long as embryos are no more than fourteen days old.
The Commission of European Bishops' Conferences has criticized the actions of the EU with respect to stem cell research. The conference recommends the prohibition of EU funds for research on human embryos and embryonic stem cells primarily because of the intrinsic value of human life at all stages of development. Thus such material should not be used for research, regardless of any good ends to which the research might be put. Additionally the bishops argue that there is yet to be found any clear evidence for any therapeutic benefits from such research.
The cultural and religious situation in Europe is moving from positions of relative homogeneity to that of pluralism. This is due to population changes resulting from immigration, the changing status and level of political power of the Catholic Church in historically Catholic countries, and pressure from various groups, both governmental and private, to advance the participation of the EU in genetic research. At stake are religious and cultural values as well as vast economic consequences. The final resolution of the specific issue of the use of human embryos in research as well as the larger question of the reconfiguration of religious and cultural values in the EU is yet to be determined. But this resolution will present a major case study in how such resolutions are brokered.
The beginnings of bioethics occurred within the context of religion broadly understood. Various denominations had pursued bioethical questions for long periods of their history, but typically within the context of pastoral counseling or the resolution of particular cases at the bedside. As bioethics became more of an academic discipline, the orientation shifted from a religious perspective to a more philosophical one. However, as public policy issues related to bioethics began to be debated, religious issues came to the fore once again, both in terms of the content of policy proposals and in terms of the selection process that determined the membership of bioethics committees.
In the United States at the present time, there is a significant debate over the place of religion in discussions of public policy. But the terms of the debate are far from clear. Some buttress their arguments by appealing to the so-called traditional Christian heritage of the United States. Others point out the difficulties of that position in light of the United States' current religious heterogeneity. Yet others argue that religion is being marginalized in favor of a secularized society through attempts to eliminate religious voices from the debate. Others still argue that religious positions or institutions are being favored by the government through voucher programs and public funding of some religiously based charities. Just who is on what side of the debate seems occasionally to vary from case to case, the result being an increasing cacophony in the public arena.
What is clear is that, in Western culture, religion is important for many citizens and that believers expect some degree of coherence between their beliefs and their social life. Religion is not simply a private belief system; it has personal and social behavioral implications. Additionally, we assume that religious bodies, as well as individual representatives of those bodies, have the right to participate in public debate over public policy. And while in theory many will agree that one's religious beliefs should not be a litmus test for participation in office or committees, those beliefs are in fact becoming increasingly important in nominating processes and elections.
Nonetheless, bioethics should not shed or attempt to eliminate its religious heritage. That heritage has been exceptionally helpful in the analysis and resolution of many questions in bioethics. What needs to be added to this heritage is a new chapter of ecumenical reasoning and of dialogue between all religious traditions. What is also needed is a focused reflection on the process of conducting public policy debates, with respect to the religious traditions represented, to the merging of these traditions, and to the public presentations of the positions of these traditions. The contribution of these traditions to the public debate is important not only because of the inherent value of their positions, but also because religious viewpoints may bring out or highlight facets of the public policy debate that might be missed or undervalued by others. Such a contribution will be made, however, only when the religious traditions can articulate these positions in a language and style accessible to a broad public. This is the challenge for the new religiously based bioethics.
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CellNews. "EU to Fund Stem-Cell Research Despite Split." Available at www.geocities.com/giantfideli.
Cole-Turner, Ronald, ed. Beyond Cloning: Religion and the Remaking of Humanity. Harrisburg, Pa., 2001.
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Davis, Dena S., and Laurie Zoloth, eds. Notes from a Narrow Ridge: Religion and Bioethics. Hagerstown, Md., 1999.
Hanson, Mark J., ed. Claiming Power over Life: Religion and Biotechnology Policy. Washington, D.C., 2001.
Holland, Suzanne, Karen Lebacqz, and Laurie Zoloth, eds. The Human Embryo Stem Cell Debate: Science, Ethics, and Public Policy. Cambridge, Mass., 2001.
Mackler, Aaron L. Introduction to Jewish and Catholic Bioethics: A Comparative Analysis. Washington, D.C., 2003.
Peters, Ted. For the Love of Children: Genetic Technology and the Future of the Family. Louisville, Ky., 1996.
Post, Stephen G., editor-in-chief. The Encyclopedia of Bioethics. 3d ed. New York, 2003.
Shannon, Thomas A., and James J. Walter. The New Genetic Medicine: Theological and Ethical Reflections. Lanham, Md., 2003.
Verhey, Allen, ed. Religion and Medical Ethics: Looking Back, Looking Forward. Grand Rapids, Mich., 1996.
Walter, Jennifer K., and Eran P. Klein, eds. The Story of Bioethics: From Seminal Works to Contemporary Exploration. Washington, D.C., 2003.
Thomas A. Shannon (2005)
Bioethics seeks to reflect on the moral dilemmas encountered as society explores new ways of understanding and controlling the biological and physical world. Bioethics is both an interdisciplinary field of academic inquiry and a larger field of social discourse. As it emerges, it is most particularly animated by the intensity of the confrontation between traditional issues of theology or moral philosophy and the dazzling potential of the biological sciences, which have transformed contemporary medicine. The field of bioethical inquiry emerges at the points of convergence among the tradition of moral standards in the medical profession, the normative thrust of health law, and the classic pursuits of theology and philosophy, drawing as well on the insights of sociology, philosophy, psychology, anthropology, and literature.
Bioethics looks at theoretical questions in the development and pursuit of new scientific research, and at practical clinical questions, such as how to resolve dilemmas of reproduction, end-of-life decisions, and the basic social contract between patient and health care provider. Bioethics also reflects on the nature, goal, meaning, and ideological construction of medicine and of medical and nursing education. Essential to the field's aims and history is participation in the making of health care policy, the just distribution of health care, and the protection of vulnerable populations.
This multidisciplinary discourse between the broad range of humanities policy and the sciences was brought into being by dramatic changes in medicine in the post–World War II era, which changed medicine from a profession that largely reacted to what were believed to be the inevitabilities of the human condition to a science intent on changing the essential perimeters of human existence, of birth, death, aging and disease. Suddenly it became possible for mechanical creations and pharmaceutical interventions to alter apparent truths of biology.
The scientific advances opened troubling questions both for the scientists involved in the work and for philosophers, theologians, lawyers, and other "outsiders" watching from the sidelines. Just at the points where religion had offered faith, communal support, or redemption, medical science could deliver satisfying solutions, changing the very boundaries of the human reach. But with the power to extend life and challenge mortality came haunting questions of fittingness and of distributive justice. As these questions deepened, physicians turned to the moral traditions (which had long claimed the metaphysical-ethical realm as their own) as they collectively tried to set new limits on the reach and range of scientific advance.
New technology changed birth, death, and the venue of care and permanently altered medical norms in areas that had been considered solely theological. Birth control and safe legal abortion meant that sexuality and procreativity could be separated, and in vitro fertilization and other advances in reproduction meant that the central drama of the matriarchal biblical life—infertility—could now be addressed medically.
Replacement of parts of the body by machines (respirators and kidney dialysis) and replacement of one set of organs by another, taken from another human or from an animal body, challenged ideas about the inviolability and discreteness of the embodied self. Heart, lungs, intestines, liver, kidney, cornea, blood, bone, and marrow all could be exchanged in increasingly routinized procedures. Machines could maintain respiration and hence heart rates long after consciousness had been destroyed, allowing the emergence of new forms of existence, such as permanent, twilight-state comas named "persistent vegetative state."
The modern emergency room, the intensive-care unit, and other specialty units replaced the home, the charity ward, and the church as centers of care. New technology demands far more money and far more social organization than was available in any one family. No longer could the locus of care be family, church, or a healing that was based on a relationship to the community. Further, visualization of the unknown inner body with sonogram, MRI, CAT scan, and genetic testing meant that much more could be known and seen for certain and thus altered vastly; this changed the sense of power over the human body and fate.
Finally, in the long war between microbes and humans, antibiotics and antiviral agents seemed to ensure a victory. One by one the traditional plagues of humanity, named as death itself in many traditional religious texts, were eliminated, allowing the human life span to increase dramatically; adults now live far longer than ever before in human history.
At the same time that these biological barriers were being broken, social movements challenged traditional constraints of ideology and morality. Traditional values, a hierarchy of virtues, and family and community standards were uncertain loci of moral consensus. Finally, and at the very moment when scientific expertise and authority were triumphant, serious questions were raised about the moral character and the justice of the leadership of the medical profession. These questions emerged in a variety of venues. The first was the research setting. Postwar revelations of Nazi medical experiments; disclosure of serious violations of human rights and dignity in the Tuskegee syphilis experiments; disclosure of the harmful side effects of DES, thalidomide, and experimental drugs; and the use of human subjects in radiation research led to calls for codes of ethics that would respect the autonomy and require the informed consent of subjects. Such discourse led to the codification, first articulated in the Belmont Report of the National Commission on Human Subjects and later by national and state commissions on bioethics, of essential principle of bioethics: beneficence, nonmaleficence, autonomy, and justice.
Others raised calls for caution about the effects of science on the environment, or about the accountability of corporate-sponsored scientists to the public welfare. The ferment of the civil rights, feminist, ecological, and consumer activist movements created a climate in which the appropriateness of scientific gains was questioned at the very moment when science was able to deliver its most breathtaking advances. These movements led to national debate about the meaning, purpose, and goals of human life, and attendant ideological discourse about autonomy and freedom and the dangers of unlimited power. As it became clear that scientists were able to have tremendous power over nature—both our "nature" and the natural world and its physical limits—the issue no longer became the probability of the accomplishments but their effects and consequences in a world created by such unlimited power.
The field advances by such challenges to the theoretical approaches of ethics, and challenges to the accepted parameters of medical knowledge. Bioethics gains authority as a field at this juncture, asking what is gained and what is lost by so profound a change, such a radical transformation of the human condition. There are ontological, epistemological, and normative responses to this question. Identity, the nature of knowledge, and the problem of the limits of our ability to alter our very capacity and identity are at the heart of the field.
Bioethics asks these questions: What is the right act, the good, human, moral gesture? What makes it so? What is the meaning of a good life? How is a good life made? How is justice best achieved among competing moral appeals? Who should I be? How should I treat others? What are the criteria for knowing such things? How can society use technology for good? What sort of goods will benefit society in the long run? How can we ensure that the power given to medicine will be moderated? By whom? In a society of deep inequality, how can the marginal, the vulnerable, and the disadvantaged be protected from abuse of this technological power? How will we create policy to regulate our new power? What sort of enforcement mechanisms will be needed?
Challenges to the field emerge not only because of new technological advances but also because of our increasing awareness of the frailty of consent. Bioethics, in evaluating the moral gestures that make up human activity, traditionally assumed that humans are rational actors, capable of pre- and postreflective accounts of their action, and that they can give coherent linguistic justifications for their actions, relying on sociability, accountability, conscience, and rationality. But such a set of assumptions has been under increasing scrutiny. First among the considerations is whether a single standard for goodness, rightness of action, or even evaluative criteria can be constructed in a world understood as profoundly diverse. Both our expanding understandings of religion and culture and our attention to feminist insights have been central to the development of the field.
As a recently defined field, albeit with deep roots in older tradition, bioethics has been deeply influenced by contemporary scholars of religion. Theologians and religious studies scholars whose writings shaped the field in its early years understood that what was at stake in medicine was how technological possibilities, miracles, and burdens changed the meaning of ultimate questions of nature, purpose, and destiny. In each contemporary religious tradition, scholars and laity reflected on what their particular tradition offered in response, as theorists seek to explore the meaning of Jewish, Christian, Islamic, or Buddhist bioethics.
Religion offers more than an interpretive frame, a set of common textual languages, a venue for a discourse on morality, and an ideological coherence for bioethics. It also offers a praxis model. Bioethics and pastoral care often share the role both of witness at the bedside of the dying, and of creating a meditative and reflective process for families and staff as they face, together, the choices offered by new technology. In clinical medicine, for example, hospital ethics committees meet to discuss difficult ethical choices and to offer recommendations to the staff and family, working closely with pastors in both a supportive and an advisory capacity in the creation of a moral community that supports the consequences of the decisions. Medicine, law, and religions that are based in classical texts all must make changes in interpretations as new issues arise that could not have been foreseen in canonical texts.
For contemporary American religions, the questions raised by the field are central to the problems that leadership and congregants face in applying religion to their daily life choices, to moments of personal crisis, and to the moment when Americans turn to face the stranger as public justice is forged. Bioethics is of value because it seeks to create a common moral language that is wrought of the common experience of suffering and succor, of mercy and obligation.
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Shelp, Earl, ed. Theology and Bioethics: Exploring theFoundations and Frontiers. 1985.
Veatch, Robert M. A Theory of Medical Ethics. 1981.
Bioethics is the study of moral issues in the fields of biology and health.
Always complex and controversial, the field of bioethics has grown even more so with the advent of advanced technologies and treatments. The mechanical respirator and the heart-lung machine have blurred the line between life and death. The legalization of morning-after pills and the abortion drug RU-486, approved for use in the United States in 2000, have intensified the already volatile abortion debate. In vitro fertilization techniques to help infertile couples conceive raise a host of ethical issues including how couples should choose sperm or egg donors, and what to do with fertilized eggs not implanted. Ethicists are also concerned with how scarce and expensive advanced treatments, such as in vitro fertilization, organ transplants, and the antiretroviral AIDS treatments should be distributed throughout society.
The rapidly evolving field of genetic engineering in particular, is introducing some of the greatest challenges ever faced in bioethics, as humans develop the ability to effect changes to living matter that were beyond imagining in the past decade or two. Current areas in experimental genetics of interest to bioethicists include:
- Cloning. The year 1997 marked the birth of the first clone, a sheep named Dolly produced from a cell of an adult female sheep. Since then hundreds of animals have been cloned, including bulls, cows, mice, monkeys, and pigs. Even clones of clones have been produced. The cloning controversy is multifaceted, with much of the controversy centered on the potential technical feasibility of cloning humans, although animal rights activists and others are also concerned that a substantial majority of cloned animals surviving to birth have significant birth defects. Humans should never be exposed to such risks, argue opponents of human cloning research. Some opponents fear a future in which cloning technology is used by narcissistic parents to custom design their offspring, while proponents see human cloning as a potentially useful technique to treat infertility or avoid known hereditary traits for disease. Several U.S. states have banned human cloning.
- Stem cell research. Stem cells, which are undifferentiated cells that give rise to specialized cells throughout the body, are considered one of science's best tools for finding cures for many diseases, as well as for developing bioartificial blood, skin, and organs that will not be rejected by the body. Stem cell research is currently hampered by the controversy surrounding the source of the cells, which are sometimes culled from aborted fetuses or from embryos left behind after fertility treatments, or are produced using cloning technology. Some religious groups such as the Roman Catholic Church condemn the use of human embryos for research, and Congress has passed restrictions on federal funding of embryonic stem cell research.
- Gene patenting. Advances in genome research wrought by the Human Genome Project and others have led many individuals and institutions, public and private, to apply for patents on genes and gene combinations. Many fear the patenting of genes may make genetic testing of patients prohibitively expensive. Although it will be technically possible in the not-too-distant future to analyze patients' genomes in the primary care environment and provide them with information about their future disease risk, this technology will not be economically feasible if it requires payment of multiple license fees.
- Genetic testing. Controversial genetic tests in use for several decades allow parents to learn about genetic diseases like sickle-cell anemia prior to birth. An experimental technique known as preimplantation genetic diagnosis gives couples even more control, enabling genetic analysis of embryos created through in vitro fertilization before they are implanted in the uterus. Many fear this technique may one day be used not just to pinpoint genetic diseases, but also to choose embryos with more desirable attributes. Other genetics tests that pinpoint flawed genes, and predict one's drug responses and vulnerability to disease offer numerous potential benefits, but ethicists are concerned about how this information will be used. Employers or insurers may use such information to discriminate, for example.
A multitude of viewpoints exist regarding every area of health care influenced by bioethics. While some individuals believe bioethics results in legislation that unnecessarily impedes the progress of science (for example, it is costly and time consuming for researchers to comply with informed consent laws), most recognize the need for at least some bioethical guidelines (the costs of compliance pales in comparison to the safeguard of informed consent on human subjects). Some individuals believe the field of bioethics is increasingly important as research technologies develop with the potential to strip away human privacy, and even to alter the definition of human life. Private and public healthcare organizations have attempted to present ethical guidelines for practitioners. For example, the American Medical Association's Council on Ethical and Judicial Affairs sets ethics policy for the American Medical Association (AMA), and AMA's Institute for Ethics investigates how professional ethics can be integrated into health care. Other organizations such as the American Association of the Advancement of Science, take formal positions on various bioethical issues to guide health care practitioners and the general public. Also, the U.S. Department of Energy and the National Institutes of Health devoted 3% to 5% of their annual Human Genome Project budgets toward study of the bioethics of genetic information, making theirs the world's largest bioethics program.
Because many of the current technologic advances in health care, including the advances in genetics, offer tremendous risks in addition to potent opportunities to predict and treat human diseases, there is a need for practitioners to main a bioethical framework in their use of these technologies, if they are to adhere to their professional oaths.
Cloning— The production of an organism that is genetically identical to its parent.
Deoxyribonucleic acid (DNA)— The genetic material of all cellular organisms and most viruses. DNA carries the information needed to direct proteins. Each molecule of DNA consists of two twisted strands, called a double helix.
Embryo— The initial developmental stage of human offspring following conception. After the eighth week an embryo is classified as a fetus.
Gene— The basic unit of heredity found in the cells of all living organisms, from bacteria to humans. Genes determine the physical characteristics that an organism inherits, such as hair and eye color.
Genetic engineering— Altering the genetic structure of an organism to provide it with traits deemed useful or desirable.
Hippocratic Oath— An oath taken by physicians to observe the ethical standards of their profession.
Human Genome Project— An international scientific collaboration that seeks to understand the entire human genetic blueprint.
In vitro fertilization— Fertilization of an ovum by sperm outside the body, and subsequent implantation in the womb.
Stem cell— An undifferentiated cell from which specialized cells develop.
Lea, D. "A New World View of Genetics Service Models." Online Journal of Issues in Nursing 5, no. 3 (2000). 〈http://www.nursingworld.org/ojin/topic13/tpc13_6.htm〉.
American Medical Association. The Council on Ethical and Judicial Affairs. 515 N. State Street, Chicago, IL 60610. (312) 464-4823. 〈http://www.ama-assn.org/ama/pub/category/2498.html〉.
ANA, American Nurses Association, 600 Maryland Avenue, SW, Suite 100 West, Washington, DC 20024. (800) 274-4ANA. 〈http://www.nursingworld.org〉.
American Society for Bioethics and Humanities. 4700 W. Lake, Glenview, Il 60025-1485. (847) 375-4745. Fax: (877) 734-9385. 〈http://www.asbh.org/〉.
National Bioethics Advisory Commission, 6705 Rockledge Drive, Suite 700, Rockville, Maryland 20892-7979. (301) 402-4242. 〈http://www.bioethics.gov〉.
National Coalition for Health Professional Education in Genetics. (410) 583-0600. 〈http://www.nchpeg.org〉.
The International Society of Nurses in Genetics. 〈http://nursing.creighton.edu/isong〉.
Human Genome Project Information. Ethical, Legal, and Social Issues. 〈http://www.ornl.gov/hgmis/elsi/elsi.html〉.
The term "bioethics" is derived from the Greek words bios, meaning life, and the Greek word ethos, meaning character. The meaning is essentially "life character." Today, ethics might be better described as applied morals or the philosophy of being moral, with bioethics being the discussion or application of morals within the diverse fields of the life sciences.
The quest for better health has guided scientists and researchers to develop many tools for analysis including organic chemical synthesis and improved genetic engineering. A significant aspect of contemporary medical research is the use of animals as test subjects. Many advances in personal care products, pharmaceutical drugs, and life-saving medical treatments have come about through the use of animals for testing and research. However, this practice is controversial.
Many people feel that animals are abused and mistreated for unnecessary research. The use of animals to test the safety of household or personal care products angers those who feel that humans are unfairly abusing animals for commercial gain. In contrast, scientists point out that animals are the most reliable indicators of potential human response to certain diseases and treatments, and that many successful, life-saving treatments and medical breakthroughs have emerged only because it is possible to test treatment options using animals, rather than human beings.
Unfortunately, some of these discoveries have come at the cost of the natural or induced death of test animals. So the ethical situation arises: Does the benefit of the new data outweigh the risk to the organism, or is the risk greater than the benefits? What may be considered unacceptable to one person may be an acceptable trade-off to another. To address this dilemma, bioethicists attempt to set reasonable restrictions and limits on experimentation so as to maintain a balance between the suffering of experimental animals and the research benefits that may be derived from animal experimentation.
Ethics itself has long been coupled to philosophy and religion. Each person's moral viewpoint is constructed from a host of factors, including education, family background, religion, personal experiences, social level, economic standing, and profession. So if every researcher and every consumer can, hypothetically, hold different views about the relationship between risk and benefit, who is responsible for setting guidelines? And what is the foundation for such guidelines?
Bioethics and Research Institutions
A first step toward establishing ethical guidelines for animal testing has been taken by institutions in the United States that fund research, such as the National Institute for Health, the Food and Drug Administration, and the Agriculture Department. Their policies are primarily set by the public in the form of political action initiated by their elected representatives. The directors and boards of these institutions consider the opinions of their constituents when deciding what types of research to support.
Private institutions such as the Howard Hughes Foundation and Rockefeller Foundations set their policies through committee discussion groups and professional panels that make recommendations to the directors of the respective foundations. Their opinions are reflected in the programs the foundations choose to fund.
Finally, private businesses and corporations that fund this type of research generally use a board or panel approach and approve of experiments within the guidelines set forth in both state and federal law, with an eye to accommodating the general will of the public.
In each of these three cases, an advisory committee is usually composed of senior researchers of a particular discipline—for example, biotechnologists to examine biotechnology questions—plus a philosopher to provide some historical depth and background, and members of interest groups or other public representatives. These panels make their recommendations based upon consideration of current circumstances as well as the potential future impact of the relative costs and benefits of the proposed research.
What sorts of issues does a panel consider when looking at a given experiment? With regards to animal testing for a new pharmaceutical, the dialog generally contains several crucial elements. The first step is to identify an experimental need. For example, a company may wish to test a new drug that would destroy fatty deposits in coronary (heart) arteries. The pharmaceutical company needs to conduct experiments to ensure drug safety and identify any possible side-effects for humans. Since federal law requires that any drug be thoroughly tested with an accurate experimental model to understand its effects before it is approved, one of the first questions to consider is how this may be best accomplished.
A variety of systems are available to model a drug's behavior. These include microbial models (not suitable in this case); tissue models (the heart tissue model might provide very good information with no apparent negative effects); computer modeling (not always appropriate for finding actual data); and finally, animal models—which have the potential to provide the most accurate information about the drug's likely effect on human beings.
The question of ethics arises during this process. In contemporary American culture, we tend to value human life above the lives of animals. Supporting this view are such culturally accepted practices as the consumption of certain animals as food, the production of drugs such as insulin from animals, and the pursuit of the longstanding hobbies of hunting and fishing for recreation and relaxation. Not everyone agrees that all of these practices are acceptable, however.
Animal Rights vs. Human Lifestyle
The widespread use of animal life to maintain human life or lifestyle is a growing point of controversy . An increasing number of consumers are voicing the opinion that the use of animals in the development of products for human use should be restricted. This is especially true in regard to the cosmetics industry where products are used for appearance rather than health purposes. For example, many consumers, investors, and animal rights activists are offended by the ways in which a product like mascara may be tested on animals before it can be approved for human usage.
There are those who believe that animal testing may be acceptable if used to develop new drugs that may save human lives. The necessary data regarding performance and safety cannot be gathered any other way. But the practice of killing an animal every time a shampoo changes its color is disturbing to many of these same people. While this may seem extreme, this happens under current law because every time something is added to an existing formula the new combination must be retested for safety and effectiveness, and animals do not always survive such testing.
At first, one might question why it is necessary to go to such lengths to test a nonmedical product. But what if a shampoo's new color proved to harmful to human skin? Or caused hair to fall out? Most consumers agree that it is not acceptable to have less stringent safety standards for such products, and yet there is disagreement about what this means in regard to the ethics of animal testing. It is impossible to set absolute moral guidelines, since each case is unique, but for a variety of reasons, current law is set to err on the side of physical human safety.
Questions in Bioethics
Bioethics requires the asking of questions that go beyond current legal requirements. Are there ways to guarantee safe cosmetics and personal care products that do not involve the use of animals? If animal testing is the only sure way to guarantee product safety, are there ways to keep from harming animals in the process? One option gaining in popularity is to restrict animal testing to the most humane and painless tests possible. Restricting the use of animals to the final stages of testing is another way researchers are trying to balance human safety with animal comfort.
Another issue confronting bioethicists has to do with the removal of animals from the wild for research purposes. In particular, the use of wild chimpanzees and other primates is under scrutiny. The dilemma arises because the public does not appear to support continued harvesting of primates from wild habitats for research purposes, yet the chimpanzee, for example, is the animal most closely related to humans, and thus most desirable for testing potential medicines.
There is little disagreement that creative minds are needed to explore alternative methods of assessing the effects of chemicals on human beings. Increasing knowledge about the human genome, and the promise of genetic treatments for human disease, suggest that animals will continue to have a role in medical research. Those involved in the field of bioethics will constantly be challenged to assess how and when to use animals for this research.
The field of bioethics addresses more than just the question of how to manage conflicting priorities and approaches to animal testing. Now that geneticists have created clones of nonhuman species of vertebrates, there are increasing questions regarding the ethical use of human genetic material. Should researchers be allowed to try to clone human organs for life-saving transplants? Should human embryonic tissue be made available for stem-cell research? Should doctors be allowed to test gene therapy on human patients who have exhausted all other treatment options?
Scientists search for ways to apply a growing body of knowledge to the betterment of human life. Philosophers and others pose ethical questions concerning scientific advancement. Sellers of goods and services depend on the advancements of science to create and fill market needs. Bioethics is the field where life science, philosophy, and commerce meet, where practitioners negotiate boundaries, wrestle with guidelines, and seek balance within the natural world in the quest to improve the quality and quantity of human life.
see also Animal Rights; Animal Testing.
Brook Ellen Hall
Kuhse, Helga, and Peter Singer, ed. Bioethics: An Anthology. Malden, MA: Blackwell Publishers, 1999.
Shannon, Thomas A. Bioethics: Basic Writings on the Key Ethical Questions that Surround the Major, Modern Biological Possibilities and Problems. Mahwah, NJ: Paulist Press, 1994.
Veatch, Robert M. The Basics of Bioethics. Upper Saddle River, NJ: Prentice Hall, 1999.
Bioethics refers to the systematic study of the moral aspects of health care and the life sciences. Physicians have always made decisions with significant moral components in the context of medical practice guided by the Hippocratic obligation to help patients without causing harm. This traditional medical morality nonetheless became insufficient to address the ethical issues that arose as medical practice changed over the course of the twentieth century to include more care by medical specialists, extensive use of complex medical technologies, and a trend toward dying in the hospital rather than at home. A series of controversies involving research with human subjects and the allocation of scarce new technologies (e.g., kidney dialysis and organ transplantation) made clear that the wisdom of physicians and researchers was inadequate to ensure the appropriate treatment of patients and research subjects. In universities and hospitals, this widespread patients' rights movement galvanized the attention of a growing contingent of theologians, philosophers, and lawyers who came to identify themselves as medical ethicists or bioethicists.
A central task of bioethics has been the articulation of approaches to guide the moral aspects of medical decision making. Here, a core commitment has been to the empowerment of patients' meaningful participation in their own health care, which is typified by the now common practice of obtaining informed consent (the process in which a clinician gives a patient understandable information about a proposed procedure or intervention, including its risks, benefits, and alternatives, and then the patient makes a voluntary decision about whether to proceed with it). The ethical principle of "respect for autonomy" underpinning this approach distinguishes bioethics most sharply from earlier systems of medical ethics. Three other principles that are also influential include beneficence (doing good for the patient), nonmaleficence (not harming), and justice. These core principles lead to a set of rules such as those regarding truth-telling and confidentiality. Together, these principles and rules comprise a secular means of approaching ethical issues in medicine that is designed to be relevant in a pluralistic society. In practicality the great question in many situations is which principle takes precedence. This conflict is readily apparent in the two prominent bioethical discourses surrounding death and dying: withdrawal of support in the terminally ill and physician-assisted suicide.
Withdrawal of Support in the Terminally Ill
The rise of mechanical ventilation and intensive care technology may be likened to a double-edged sword. While rescuing countless patients from acute illness, it has also made possible the preservation of bodily functions of patients following severe brain injury. The 1981 report of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Defining Death, confirmed the appropriateness of the existing practice that allows withdrawal of life support from patients with absent brainstem functions as defined by the 1968 Harvard brain death criteria. Far more controversial have been those patients in irreversible coma who nonetheless still preserve brainstem reflexes, a condition designated as persistent vegetative state (PVS) that may continue many years with technological assistance. Perhaps the most famous such case was that of Karen Ann Quinlan, in which the New Jersey Supreme Court in 1976 recognized the right of the parents of a twenty-one-year-old woman with irreversible coma to discontinue her ventilator support over the objections of her physicians. The widely publicized decision opened the door for withdrawing such support legally, but still left open many ethical and practical questions.
Here the bioethicists stepped in. On one level, the Quinlan case confirmed their emerging role in the health care setting. Given the difficulty of ascertaining the patient's own wishes based upon the recollections of family and loved ones, the New Jersey Supreme Court recommended that hospitals develop ethics committees to guide such decisions when family and physicians are at odds. Ethicists thus gained a foothold in many hospitals. On a second level, discussions of discontinuing life support underlined the need for a more substantial framework to guide decision making. Many ethicists evoked the principle of autonomy to advocate advance directive—declarations such as living wills or the appointment of a durable power of attorney for health care—to minimize uncertainty regarding the patients' wishes should an event consign them to dependence upon invasive technology, making it impossible for them to participate in decision making about whether to continue the use of such technologies. Yet, less than 10 percent of Americans have completed such wills.
Following a series of legal cases the right to refuse life-sustaining therapies, including ventilator and feeding tube support from patients with irreversible coma, has been established. Nevertheless, in certain jurisdictions the process of refusing therapy may require clear evidence that this would indeed be in concert with the wishes of the patient.
In many ways, the movement in some parts of the United States and in the Netherlands promoting the legalization of physician-assisted suicide (PAS) carries the autonomy argument to its logical conclusion. Here, the patient with a terminal illness proceeds to take complete control of the dying process by choosing to end life before losing independence and dignity. During the 1990s, PAS gained widespread notoriety in the popular media thanks to the crusade of the Michigan pathologist Jack Kevorkian, who has openly participated in the suicides of over a hundred patients. Oregon legalized the practice in its 1997 Death with Dignity Act. Meanwhile, the Netherlands has legalized the practice of euthanasia (distinguished from PAS in that the physician directly administers the agent ending life) in 2000.
Bioethicists have generally condemned the approach to PAS represented by Kevorkian, but have been divided in opposing the practice under any circumstances. For many observers, Kevorkian's willingness to assist patients on demand devoid of any long-term doctor-patient relationship raises troubling questions about his patients' true prognoses, their other options, and the contribution of depression to their suffering. The physician Timothy Quill's decision to assist in the suicide of a forty-five-year-old woman described in an influential 1991 article has attracted much less condemnation. The woman "Diane" had been Quill's patient for eight years, and he wrote eloquently of how he had come to understand how her need for independence and control led her to refuse a cancer therapy with only a 25 percent success rate. For many ethicists the crucial question is whether PAS could be legalized yet regulated to assure the kinds of basic safeguards demonstrated by Quill's example, without placing vulnerable members of society at risk. In contrast, some ethicists have backed away from condoning any legalization of PAS as creating more potential for harm to the elderly than good—or perhaps marking a fateful step on a slippery slope leading to involuntary euthanasia.
However these issues are resolved, there is increasing recognition that a single-minded commitment to autonomy to the neglect of the other foundational principles of bioethics distorts how death and dying take place in reality. Whether they would allow PAS only rarely or not at all, most bioethicists would argue that a great challenge facing the care of the dying is the provision of palliative (or comfort) care for the terminally ill.
See also: Anthropological Perspective; Black Stork; Informed Consent; Psychology; Suicide Types: Physician-Assisted Suicide
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Fletcher, John C., et al., eds. Introduction to Clinical Ethics, 2nd edition. Frederick, MD: University Publishing Group, 1995.
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Defining Death: A Report on the Medical, Legal and Ethical Issues in the Determination of Death. Washington, DC: Author, 1981.
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Rothman, David J. Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making. New York: Basic Books, 1991.
JEREMY SUGARMAN JEFFREY P. BAKER
BIOETHICS addresses the moral and ethical issues arising from clinical practice, medical and biological re-search, resource allocation, and access to biomedical technology. Van Rensselaer Potter at the University of Wisconsin and Andre Hellegers at the Kennedy Institute of Ethics independently coined the term "bioethics" in the early 1970s to describe different concepts, and its exact definition remains contested today. However, it is nonetheless possible to discern the growth of a professional bioethics industry and discipline intimately tied to cultural mores and new advances in biomedical technology and techniques. Indeed, the field of bioethics underwent explosive growth and institutionalization in the 1970s as challenging issues such as euthanasia, in vitro fertilization, organ transplantation, and genetic engineering attracted the public's attention and concern. Because questions over appropriate science and social policies exist at the crossroads of legal, political, and moral disputes, the history of American bioethics is one of contentious debate, government regulation, and continuing growth.
The history of medical ethics dates to antiquity, and the Hippocratic Oath to "do no harm" remains at the core of modern medical ethics. The American Medical Association (AMA) established a code of ethics in 1846 to regulate medical practice; a hundred years later, revelations about Nazi medical experimentation led to the Nuremberg Code, requiring "informed consent" from human subjects involved in research. In the 1960s the introduction of dialysis machines, and the resulting "God committees" to decide who would receive the life-saving treatments, strained the medical community's ethical consensus. At the same time, a cultural emphasis on individual rights merged with growing concerns over medical and biological advances to require government intervention. For example, the definition of "brain death," the ethics of organ transplantation, and the potential for prenatal genetic discrimination led to the first Senate hearings on bioethics in 1968. These issues also led to the establishment of the Institute of Society, Ethics, and the Life Sciences (also known as the Hastings Center) in 1969; the National Science Foundation's Ethics and Human Values Implications of Science and Technology (EHVIST) program in 1971; and the Joseph and Rose Kennedy Center for the Study of Human Reproduction and Bioethics (later the Kennedy Institute of Ethics) in 1971.
Throughout the 1970s a professional bioethics industry developed in response to numerous ethical and medical dilemmas. The wide assortment of issues attracted attention from diverse groups. Many religious communities felt genetic screening might increase abortions of "defective" babies, while the Roe v. Wade decision and questions regarding fetal research ensured the active participation of women's groups. The disclosure of improper medical conduct and a lack of informed consent in the Tuskegee, Alabama, syphilis study heightened awareness about the regulation and control of research, as the public questioned whether researchers could be trusted with ethical responsibilities. These questions resurfaced in disputes over the morality of "gene splicing" throughout the decade, while the Karen Ann Quinlan case thrust the "right to die" movement into the spotlight. The birth of Louise Brown, the first "test-tube" baby, also ignited public interest, as the government and the public struggled to address the plethora of issues. By 1980, many medical schools had established programs and journals to discuss the challenging new issues and prepare students for their future careers; the first Encyclopedia of Bioethics appeared in 1978.
In 1974 the United States Congress, led by Massachusetts Senator Edward Kennedy, established the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. The commission released a series of reports over the next four years that provided the "official" positions necessary to create uniformity in American policies on the various complex legal and ethical issues. Given the religiously pluralistic fabric of American society, the committee's primary position, as outlined in The Belmont Report, relied on the three principles of beneficence, justice, and autonomy as acceptable, and secular, bioethical guidelines. Early treatises on medical ethics, such as Joseph Fletcher's Morals and Medicine (1954) or Paul Ramsey's The Patient as Person (1970), had often combined Christian theology with a liberal philosophy to help reconsider the doctor-patient relationship in light of the latest medical developments. Indeed, some observers credit the rise of bioethics with revitalizing philosophical ethics, as the new challenges demanded a fresh approach and a resolution.
However, the guidelines failed to quell public uneasiness and led many groups to question the official principles throughout the 1970s and 1980s. Christian fundamentalists and Christian Scientists were especially vocal and litigious in challenging the emphasis on individual autonomy. Critics often charged that the Belmont Report's principles downplayed the importance of community and family and argued against the autonomy of children and mentally handicapped patients in making decisions regarding abortion, euthanasia, or life-saving medical treatments. Similar disagreement followed the 1982 release of the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Re-search (est. 1980) report Splicing Life because it advocated the patenting of genetically-altered organisms and stated that future debates on biological research could rely on professional bioethicists, rather than theologians, for moral and ethical perspectives.
By the early 2000s bioethics was internationally recognized and interdisciplinary, drawing participants and perspectives from philosophy, medicine, biology, theology, and history. By 1990, over 100 organizations and institutions dedicated to bioethics had been established, many of them in the United States, an acknowledged leader in the field. Indeed, responding to ethical concerns over human gene therapy and experimentation with human subjects, President Bill Clinton established the National Bioethics Advisory Commission in 1996. Chaired by Harold Shapiro, former president of Princeton University, the commission produced the influential report Cloning Human Beings, which outlined the ethical issues related to the emerging technology. The commission's charter expired in October 2001, leaving empty that critical nexus where specialists in medical, clinical, or research ethics could address the latest bioethical developments, from reproductive techniques and access to artificial organs to cloning, stem cell research, and genetic privacy and discrimination. As the sophistication of medical technology and biological research increases, the field of bioethics continues to grow, preparing to meet the unforeseen challenges of the twenty-first century.
Engelhardt, H. T. The Foundations of Bioethics. Oxford: Oxford University Press, 1986.
Reich, Warren, ed. The Encyclopedia of Bioethics. New York: Simon and Schuster, 1995.
Stevens, M. L. Bioethics in America: Origins and Cultural Politics. Baltimore, Md.: Johns Hopkins University Press, 2000.