BIOETHICS.

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.

Neuroethics.

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.

Eugenics.

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 .

bibliography

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.

Jonsen, Albert R. The Birth of Bioethics. New York: Oxford University Press, 1998.

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.

Stevens, M. L. Tina. Bioethics in America: Origins and Cultural Politics. Baltimore: Johns Hopkins University Press, 2000.

Arthur Caplan

Autumn Fiester

Bioethics

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

Bibliography

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

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.

Physician-Assisted Suicide

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

Bibliography

Beauchamp, Tom L., and James F. Childress. Principles of Biomedical Ethics, 4th edition. New York: Oxford University Press, 1994.

Buchanan, Allen E., and Dan W. Brock. Deciding for Others: The Ethics of Surrogate Decision Making. Cambridge: Cambridge University Press, 1990.

Filene, Peter G. In the Arms of Others: A Cultural History of the Right-to-Die in America. Chicago: Ivan R. Dee, 1998.

Fletcher, John C., et al., eds. Introduction to Clinical Ethics, 2nd edition. Frederick, MD: University Publishing Group, 1995.

Jonsen, Albert R. The Birth of Bioethics. New York: Oxford University Press, 1998.

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.

Quill T. E. "Death and Dignity: A Case of Individualized Decision Making." New England Journal of Medicine 324 (1991):691–694.

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

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.

BIBLIOGRAPHY

Engelhardt, H. T. The Foundations of Bioethics. Oxford: Oxford University Press, 1986.

Jonsen, Albert R. The Birth of Bioethics. New York: Oxford University Press, 1998.

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.

J. G.Whitesides

See alsoClinical Research ; Euthanasia ; Medical Research .

Bioethics is the study of the moral dimensions of the life sciences and health care, including medicine, nursing, and the allied health professions.As an academic discipline, bioethics emerged in the 1960s and 1970s amid public controversies involving the misuse of human subjects in medical research and disquiet about the morality and safety of recombinant DNA research. Subsequent media coverage of such issues as xenografting and human cloning made bioethics and bioethicists familiar to many Americans.

Before the advent of bioethics (a term coined in 1970–1971), such ethical issues as truth‐telling and the confidentiality of the doctor–patient relationship comprised part of a tradition of medical ethics going back to the Hippocratic oath of ancient Greece. In the United States, physicians had adopted ethical codes to guide practitioners in their relations with one another, with their patients, and with society. When physicians established the American Medical Association (AMA) in 1847, they followed the example of such earlier medical societies as the Boston Medical Association and the College of Physicians of Philadelphia in ratifying ethics codes for their members. Based on the ethical code written by the English physician Thomas Percival in 1792, the AMA code particularly addressed the relationships among physicians and offered explicit rules for consultations with nonorthodox practitioners, who actively competed for patients with AMA members.

In the nineteenth and early twentieth centuries, the ethical dimensions of medicine received little attention outside the medical profession. The clergy, especially Catholic theologians, occasionally offered ethical analyses of such practices as abortion and contraception. In the 1910s and 1920s, the leaders of the medical profession grew concerned about public accusations against physicians who performed experiments on such vulnerable groups as orphans and inmates of mental‐health institutions. But proposals to restrict such practices, introduced at both the state and federal levels, generally failed because most Americans trusted the medical profession to protect patients' interests and well‐being. Buoyed by startling medical breakthroughs—insulin (1920s) and penicillin (1940s)—the American medical profession continued to enjoy popular esteem and respect.

During the 1960s and 1970s, this trust eroded. In this era of the civil rights movement and the women's rights movement, proponents of the rights of patients challenged the medical profession's traditional authority to oversee patients' interests and to police itself. Revelations of scandalous abuses in human‐subject research, especially the forty‐year study of untreated syphilis in four‐hundred African American men (the Tuskegee Experiment) shocked the public and the U.S. Congress. In the wake of public hearings, President Richard M. Nixon in July 1974 signed the National Research Act, requiring institutions receiving federal aid to form institutional review boards to monitor proposals involving human research subjects. The act also created a National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research to develop guidelines to protect human participants in biomedical research. Including physicians, lawyers, clergy, philosophers, and social scientists, the commission issued several reports from 1975 through 1978.

The broad spectrum of bioethical concerns in the 1970s and 1980s, including issues relating to brain death, severely “defective” newborns, and the maintenance of comatose patients on respirators prompted Congress to authorize a second commission. The President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, appointed by President Jimmy Carter in 1978, produced a series of papers between 1980 and 1983 on such issues as health‐care decision‐making, defining brain death, genetic screening, and decisions involving life‐sustaining treatment. In 1995, in the wake of revelations of human radiation experiments sponsored by the federal government during the Cold War, President Bill Clinton formed the National Bioethics Advisory Commission. Reflecting the growing interdisciplinary nature of bioethics, the eighteen‐member board comprised people trained in medicine, law, nursing, religious studies, history, and bioethics, as well as an advocate for the mentally ill. As one of its first duties, the board reviewed the ethical and legal implications of human cloning, prompted by the successful cloning of an adult sheep by Scottish researchers.

As an academic discipline, bioethics flourished in American medical schools and in such private institutions as the Hastings Center for Bioethics in Briarcliff Manor, New York, during the last quarter of the twentieth century. As interest in bioethics burgeoned, the courts increasingly played a role in medical decision‐making; between 1976 and 1988, for example, U.S. courts addressed fifty‐four cases involving the right to refuse life‐prolonging therapies. Another measure of the growing status of bioethics was its prominence in the media; by the 1990s, journalists routinely consulted bioethicists for pronouncements on biomedical issues.

A bioethics issue with political overtones involved medical researchers' use of human stem cells. Since stem cells are harvested from very early‐stage human embryos (called blastocysts) used in vitro fertilization, a method employed by couples experiencing reproductive problems, the issue became enmeshed in the abortion debate. In 2001 President George W. Bush, advised by his newly created President's Council on Bioethics, barred federal funding of medical research on stem cells harvested in the future.
See also Biotechnology Industry; Birth Control and Family Planning; Genetics and Genetic Engineering; Medical Education.

Bibliography

Donald E. Konold , A History of American Medical Ethics, 1847–1912, 1962.
Ruth R. Faden and and Tom L. Beauchamp , A History and Theory of Informed Consent, 1986.
George Weisz, ed., Social Science Perspectives on Medical Ethics, 1990.
David J. Rothman , Strangers at the Bedside: A History of How Law and Bioethics Transformed Medical Decision Making, 1991.
Susan E. Lederer , Subjected to Science: Human Experimentation in America before the Second World War, 1995.
Robert Baker et al., eds., The American Medical Ethics Revolution, 1999.

Susan E. Lederer

Paul S. Boyer

Bioethics

BIBLIOGRAPHY

The field of bioethics, as distinct from medical ethics, has existed since the 1960s. Unlike medical ethics, which for centuries has examined the duties and responsibilities of physicians to their patients and to other doctors, the development of bioethics can be traced to the rapid progress in technology and science experienced in the United States in the 1960s. Organ transplantation, chemotherapy, kidney dialysis, respirators, the contraceptive pill, genetic screening, and intensive care units were extraordinary medical breakthroughs that were seen as highly beneficial but also costly and sometimes harmful. This explosion of technological success brought in its wake a set of daunting ethical dilemmas that medicine, academics, legislators, and the public had never previously been forced to face.

In the wake of these developments, issues of healthcare access and rationing, withdrawal and withholding of lifesaving care, dignity in dying, and how to define death and manage the high cost of medical care now loomed large as urgent ethical quandaries. At the same time, societal changes placed greater emphasis on individual autonomy and rights, which prompted the public to press the field of medicine for more patient involvement and control over medical treatment. The ethical dilemmas generated by these advances in science and medicine required interdisciplinary study and reflection that traditional academic disciplines were ill-equipped to handle. In response to these pressing ethical problems, scholars began to venture outside of their traditional subject matter to discuss, debate, and write about these new dilemmas, and bioethics became a new area of academic attention.

Some of the original dilemmas are still at the core of bioethics today. The field now focuses ethical problems in clinical, preventive, and research medicine that involve truth telling, informed consent, confidentiality, end-of-life care, conflicts of interest, nonabandonment, euthanasia, and substituted judgment for incompetent persons. Bioethics has established both the right to informed consent and the right to control one’s medical treatment as key tenets of American law and ethics. With each new technological breakthrough, the field of bioethics expands its scope to address new ethical dilemmas, most recently those involving the human genome project, stem cell research, artificial reproductive technologies, the genetic engineering of plants and animals, the prospect of human reproductive cloning, preimplantation genetic diagnosis of embryos, nanotechnology, and xeno-transplantation. Bioethics has also more recently begun to reflect on the health-care challenges faced in developing nations, such as whether national or local standards should govern the conduct of medical research or the problems of rationing access to innovative treatments in nations besieged by devastating epidemics such as malaria or AIDS.

Since the 1960s, the field of bioethics has gained legitimacy as an independent academic discipline, and that new status has brought significant changes in the structure and institutions of the field. Originally, the institutions of bioethics were independent think tanks. Today, the trend is the creation of academic bioethics departments, either within a medical school or school of arts and sciences. The professionalization of bioethics has taken it from the academic margins to an accepted place within universities, hospitals, regulatory bodies, the media, and industry.

SEE ALSO Medicine

BIBLIOGRAPHY

Callahan, Daniel. 1973. Bioethics as a Discipline. Hastings Center Studies 1 (1): 66–73.

Fox, Daniel. 1985. Who Are We: The Political Origins of the Medical Humanities. Theoretical Medicine 6: 327–341.

Jonsen, Albert. 1998. The Birth of Bioethics. New York: Oxford University Press.

Potter, Van Rensselaer. 1971. Bioethics: Bridge to the Future Englewood Cliffs, NJ: Prentice Hall.

Reich, Warren, ed. 1978. Encyclopedia of Bioethics. New York: Free Press. 3rd ed., 2004. Ed. Stephen G. Post. New York: Macmillan.

Reich, Warren. 1994. The Word “Bioethics”: Its Birth and the Legacies of Those Who Shaped Its Meaning. Kennedy Institute of Ethics Journal 4: 319–336.

Arthur Caplan
Autumn Fiester

bioethics in philosophy, a branch of ethics concerned with issues surrounding health care and the biological sciences. These issues include the morality of abortion , euthanasia , in vitro fertilization , and organ transplants (see transplantation, medical ). In the 1970s bioethics emerged as a discipline with its own experts, often professional philosophers, who developed university courses on the subject. Many hospitals now employ experts on bioethics to advise on such issues as how to treat terminally ill patients and to allocate limited resources. Advances in health care, the development of genetic screening , and the new research in genetic engineering , including gene therapy , have also given rise to questions in bioethics.

Bibliography: See W. T. Reich, ed., Encyclopedia of Bioethics (4 vol., 1978); H. T. Engelhardt, The Foundations of Bioethics (1986); R. Macklin, Mortal Choices: Bioethics in Today's World (1987).

bioethics. The term was coined in 1971 to describe ethical reflection on issues arising within the sphere of the biological and medical sciences. For Christians it is a part of moral theology and is governed by its principles, including the sacredness of human life, love of neighbour, and respect for the sovereignty of God. For discussion of some branches of bioethics, see CONTRACEPTION, PROCREATION, AND ABORTION, ETHICS OF; and DYING, CARE OF THE.

bioethics (by-oh-eth-iks) n. an area of applied ethics relating to moral behaviour in the life sciences. Medical ethics is now often considered a subspecialty of bioethics (biomedical ethics).

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