A Companion to Bioethics E-Book
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- Herausgeber: John Wiley & Sons
- Kategorie: Geisteswissenschaft
- Serie: Blackwell Companions to Philosophy
- Sprache: Englisch
This second edition of A Companion to Bioethics, fully revised and updated to reflect the current issues and developments in the field, covers all the material that the reader needs to thoroughly grasp the ideas and debates involved in bioethics.
- Thematically organized around an unparalleled range of issues, including discussion of the moral status of embryos and fetuses, new genetics, life and death, resource allocation, organ donations, AIDS, human and animal experimentation, health care, and teaching
- Now includes new essays on currently controversial topics such as cloning and genetic enhancement
- Topics are clearly and compellingly presented by internationally renowned bioethicists
- A detailed index allows the reader to find terms and topics not listed in the titles of the essays themselves
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Seitenzahl: 1484
Veröffentlichungsjahr: 2013
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Contents
List of Contributors
Acknowledgments
Part I Introduction
1 What Is Bioethics? A Historical Introduction
Medical Ethics
Nursing Ethics
Bioethics
References
Part II Questions About Bioethics
2 Ethical Theory and Bioethics
Case Studies and Mid-level Principles
Justifying the Choice of an Ethical Theory
References
Further reading
3 Culture and Bioethics
What Is Culture?
Bioethics Today: Present Realities
The Universality of Bioethics
The Challenge of Transcultural Bioethics
Practice
Principles and Rules
Cultural Imperialism and Value Absolutism
Cultural Pluralism and Value Relativism
Transculturalism and the Idea of Shared Values
References
Further reading
4 Gender and Bioethics
Feminism and Gender
Gender and Health Care
Gender and Ethics
Moral Persons and Moral Deliberation
Bioethical Self-reflection
References
Further reading
5 Religion and Bioethics
Problems and Arguments
Religion and Bioethics: A Distinctive Contribution?
Religion, Bioethics, and Liberal Society
References
Further reading
6 Law and Bioethics
Law
Morality
From Morality to Law
From Law to Morality
Converging Law and Morality
Diverging Law and Morality: Beyond the Liberal Model
References
Further reading
Part III Ethical Approaches
7 A Principle-based Approach
The Variety of Principle-based Approaches
Connecting General Principles to Particular Judgments about Cases
Critiques
References
Further reading
8 Exceptionless Rule Approaches
The Idea of an Exceptionless Moral Norm
The Role of Exceptionless Precepts in Moral Thinking
Exceptionless Rules and Consequentialism
The Casuistry of Exceptionless Rule Approaches
References
9 A Utilitarian Approach
References
10 A Virtue Ethics Approach
The Rise of Virtue Ethics
Essential Features of Virtue Ethics
Virtue Ethics Approaches to Bioethics
Criticisms of Virtue Ethics
Conclusion
References
Further reading
11 A Care Approach
One Model of Care Ethics
An Overview of Care Ethics
Care and Other Moral Perspectives
Care and Bioethics
Conclusion
References
Further reading
12 A Case Approach
Top-down vs Bottom-up
Core Elements of Casuistical Analysis
Advantages of a Casuistical Approach
Objections and Replies
Conclusion
References
Further reading
Part IV Before Birth: Issues Involving Embryos and Fetuses
13 Personhood
Basic Moral Principles and the Concept of a Person
Human Persons and Human Organisms
The Concept of a Person and the Wrongness of Killing
What Makes Something a Person?
Is Personhood a Matter of Degree?
Is Potential Personhood Morally Significant?
Is Species Membership Morally Significant?
The Moral Status of Human Embryos, Fetuses, and Newborn Infants
Summing Up: Ethics and the Concept of a Person
References
14 Abortion
The Arguments for the Freedom to Choose
Fetal Life and Humanity
The Argument from Fetal Potential
Abortion and Fetal Development
Making Abortion Difficult to Obtain
Ideological Bases of the Abortion Debate
Conclusion
References
15 Mother–Fetus Conflict
Abortion and Mother–Fetus Conflict
Moral Obligations to the Unborn
The Obstetrical Cases: Forced Cesareans
Fetal Surgery
Conclusion
References
Further Reading
Part V Issues In Reproduction
16 Population
The Malthusian Warning
“Population Control” and its Critics
“Leveling Off ”: The Demographic Transition
The Ethics of Population Programs
Optimal Population Size: Fewer with More, or More with Less?
A Thought-Experiment About a Solution to the Population Problem
References
17 Assisted Reproduction, Prenatal Testing, and Sex Selection
General Assessments of Assisted Reproduction
Pre-birth Testing
Conclusion
References
Further reading
18 Cloning
Cloning and Popular Culture: A Brief History
Some Facts About Cloning
Exact Copies and Zombies
Is Cloning Humans Unnatural?
Animal Cloning
Originating the First Cloned Baby
Preliminary Psychological-Social Objections to Cloning
Moral Objections Against Human Embryonic Cloning
Conclusions
References
Part VI The New Genetics
19 Gene Therapy
Promise and Disappointment
Ethical Issues
Resource Allocation
References
20 Genetic Enhancement
Possibility, Extent and Significance of Genetic Enhancement
Should Human Genetic Enhancement Occur?
Conclusion
References
Further reading
21 Creating and Patenting New Life Forms
Introduction
Values
Micro-organisms and Plants
Animals
Humans
Patents
References
Further reading
22 Genetic Counseling, Testing, and Screening
Information Management: Confidentiality, Autonomy and Non-Directiveness
Predictive Genetic Testing
Childhood Genetic Testing
Genetic Screening
Informed Consent to Screening
Newborn Screening
Carrier Screening
Prenatal Screening
Susceptibility Screening
Further Information Management
Goals of Genetic Screening: Public Health vs Individual Choice
Conclusion
References
Further reading
Part VII Life and Death Issues
23 Medical Decisions at the End of Life
An Ethical Framework for Treatment Decision-making
Futile Treatment
Ordinary and Extraordinary Treatment
Killing and Allowing to Die
Treating Pain and the Doctrine of Double Effect
Conclusion
References
Further reading
24 Severely Disabled Newborns
Introduction
Conceptual Issues
Decision Issues
Conclusion
References
Further reading
25 Death, Brain Death, and Persistent Vegetative State
The Concept of Brain Death and its Appeal
A Critique of Brain Death
What Kind of Entity Are We?
Persistent Vegetative State
References
Further reading
26 Advance Directives
What Are Advance Directives and Why Do We Have Them?
The Origins, and Limitations, of the “Living Will”
Legislatively Authorized “Instruction Directives”
Legislatively Authorized “Appointment Directives”
Advance Directives Outside the United States
Conceptual Problems and Practical Difficulties
Barriers Remaining to the Effective Use of Advance Directives
References
Further reading
27 Voluntary Euthanasia, Suicide, and Physician-assisted Suicide
The Traditional Prejudice
Killing
Suicide
Assisted Suicide and Euthanasia
From Morality to Public Policy
Conclusion
References
Further reading
28 The Slippery Slope Argument
An Example
The Paradigmatic Form of the Argument
The Appeal to a Pernicious Precedent
Slopes of Reason
Slopes of Unreason
Factual and Moral Plausibility
Appearance and Reality
References
Part VIII Resource Allocation
29 Deciding Between Patients
What Is “Greater Need” for Health Care?
Longevity
Should the Health-care System Maximize QALYs?
QALYs and Equality
The Evidence Base for QALY-informed Decisions
Choosing Between Claimants
Allocation and Liberation
Moral Evaluation of Persons
Natural Justice
Utility to Society
Numbers of Dependents
Age and Life Expectancy
Fairness and Quality of Life
Conclusion
References
30 Society’s Allocation of Resources for Health
Determinants of Health
Who, If Anyone, Allocates Health Resources?
Determining the Share of the Overall Budget To Be Devoted to Health
Allocation Within the Budget for Health
Health Needs and Benefits
Ethical Issues in Measuring Health Benefits: Quantity and Quality of Life
Ethical Issues in the Distribution of Health Benefits
Other Principles of Allocation
Allocation and Social Justice
Democratic Choice
Conclusion
References
Further reading
31 Is There a Right to Health Care and, If So, What Does It Encompass?
Is There a Right to Health Care?
What Does a Right to Health Care Include?
Choice or Consent and the Exercise of our Right to Health Care
References
Part IX Organ Donations
32 A World of Transferable Parts
Introduction
Procurement From the Dead
Procurement From the Living
The Transition from Life to Death
Conclusion
References
Part X Global Health-care Issues
33 Global Health Responsibilities
Introduction
Doubts About Libertarianism
Obligations
Conclusions
References
Further reading
34 Developing World Challenges
Introduction
Medical Migration and Moral Responsibility
Lending Money to Developing Countries
Culture and Religion
Health Research and Resources
Conclusions
References
35 Global Pharmaceutical Markets
Introduction
The Shipwreck of the Richmond and the Duty to Rescue
The Ethics of Global Access to Essential Medicines
Conclusion
References
36 Infectious Disease
The Ethical Importance of Infectious Disease
The Global Infectious Disease Status Quo: AIDS and TB
Drug Resistance
Limiting Liberty in Contexts of Contagion
Improving Global Health
References
Further reading
37 AIDS as a Global Health Emergency
HIV Testing
HIV Infection: Harm to Self or Harm to Others
Access to Experimental Drugs and the Ethics of Research Clinical Trials
Developing Preventive Vaccines
Affordable Access to Life-preserving Medication
HIV Infection in Health-care Professionals and Patients
Final Remarks
References
Further reading
Part XI Experimentation With Humans and Animals
38 Research Involving Human Beings
Introduction
Fundamental Ethical Principles for Research
Respect for Persons: Informed Consent
Beneficence
Justice
Vulnerability and Exploitation
Research Ethics Committees
Conclusion
Acknowledgments
References
39 Regulating Experimentation in Research and Medical Practice
Introduction
History of Experimentation on Human Beings
Regulation of Human Experimentation
Guidelines, Regulations and Directives to Regulate Human Experimentation
Regulation of Experimentation in Surgery and Clinical Medicine
Discussion
References
40 Research Using Preimplantation Human Embryos
References
Further reading
41 The Moral Status of Animals and Their Use As Experimental Subjects
The Moral Critique of Research on Animals
The Uses of Animals in Research
The Response of the Research Community to the Moral Critique of Animal Research
Practical Resolution
References
Further reading
PART XII Ethical Issues in the Practice of Health Care
42 Confidentiality
References
43 Truth-telling
The Clinical Encounter
Medical Paternalism Re-examined
Ethical Frameworks
The Temptation to Deceive
Different Forms of Deception
Communicating Outside Medicine
Character, Context, and Care
References
Further reading
44 Informed Consent and Patient Autonomy
The Moral Foundation
The Legal Requirement for Consent in Therapeutic Settings
The Exceptions
References
45 Patients Doubtfully Capable or Incapable of Consent
The Standard Models of Decision-making Capacity and Surrogate Decision-making
References
Further reading
46 Ethics in Nursing Practice
Introduction
Tracing a History of Nursing Ethics
The Sociopolitical Context of Nursing and Nursing Ethics
The Renewal of Ethics in Nursing: The Insufficiency of Bioethics
Desired Futures
Nursing Leadership in Practice and Policy through Attention Ethics
Summary
References
47 Global Trends in Nursing Ethics
Professional Issues
Educational Issues
Policy Issues
Leadership Issues
Specific Issues
References
Part XIII The Teaching and Practice of Bioethics
48 Ethics Committees and Ethics Consultants
Origins and Development
The Functions of Ethics Committees and Ethics Consultants
The Significance of Ethics Committees and Ethics Consultation for Bioethics
Conclusion
Acknowledgments
References
Further reading
49 Teaching Ethics in the Health Professions
Trends in Ethics Teaching in the Health Professions
Theoretical Questions Underlying Curriculum Content
Ethical Knowledge or Ethical Behavior?
The Hidden Curriculum
Conclusion
References
Index
Blackwell Companions to Philosophy
This outstanding student reference series offers a comprehensive and authoritative survey of philosophy as a whole. Written by today’s leading philosophers, each volume provides lucid and engaging coverage of the key figures, terms, topics, and problems of the field. Taken together, the volumes provide the ideal basis for course use, representing an unparalleled work of reference for students and specialists alike.
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This second edition first published 2009© 2009 Blackwell Publishing LtdExcept chapter 18 © Gregory E. PenceEdition history: Blackwell Publishing Ltd (1e, 1998)
Blackwell Publishing was acquired by John Wiley & Sons in February 2007. Blackwell’s publishing program has been merged with Wiley’s global Scientific, Technical, and Medical business to form Wiley-Blackwell.
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Library of Congress Cataloging-in-Publication Data
A companion to bioethics / edited by Helga Kuhse and Peter Singer. — 2nd ed.p. cm. — (Blackwell companions to philosophy ; 15)Includes bibliographical references and index.ISBN 978-1-4051-6331-6 (hardcover : alk. paper)1. Bioethics. 2. Medical ethics. I. Kuhse, Helga. II. Singer, Peter, 1946–
R724.C616 2009174.2—dc22
2009007422
A catalogue record for this book is available from the British Library.
01 2009
For Brent
Contributors
John D. Arras, University of Virginia
Margaret Pabst Battin, University of Utah
Joseph Boyle, University of Toronto
Peter Braude, King’s College London
Dan W. Brock, Harvard Medical School, Boston
Alexander Morgan Capron, University of Southern California, Los Angeles
Ruth Chadwick, Cardiff University, Wales
James F. Childress, University of Virginia
Angus Clarke, Cardiff University, Wales
Jan Crosthwaite, University of Auckland, New Zealand
Norman Daniels, Harvard University, Boston
Govert den Hartogh, University of Amsterdam, The Netherlands
Carl Elliott, University of Minnesota, Minneapolis
Segun Gbadegesin, Howard University, Washington, DC
Lynn Gillam, University of Melbourne
Raanan Gillon, Imperial College London
Eric Gregory, Princeton University
R. M. Hare, Deceased
John Harris, University of Manchester
Roger Higgs, King’s College School of Medicine and Dentistry, London
Nils Holtug, University of Copenhagen
Eike-Henner W. Kluge, University of Victoria, Canada
Michael Kottow, University of Chile, Santiago
Donald W. Light, University of Medicine and Dentistry of New Jersey
Christopher Lowry, The Chinese University of Hong Kong
Florencia Luna, University of Buenos Aires
Ruth Macklin, Albert Einstein College of Medicine, Bronx, New York
Jeff McMahan, Rutgers University, New Brunswick
Paul Ulhas Macneill, University of Sydney
Rita C. Manning, San José State University, California
Sarah Marchand, St Paul, Minnesota
Jonathan D. Moreno, University of Pennsylvania
Justin Oakley, Monash University, Australia
Kevin Outterson, Boston University, Boston
Gregory Pence, University of Alabama at Birmingham
Laura M. Purdy, Wells College, Aurora, New York
James Rachels, Deceased
Janet Radcliffe Richards, University of Oxford
Bernard E. Rollin, Colorado State University
Julian Savulescu, University of Oxford
Udo Schüklenk, Queen’s University, Kingston, Ontario
Michael J. Selgelid, The Australian National University, Canberra
Daniel K. Sokol, Imperial College London
Bonnie Steinbock, State University of New York
Brian Stoffell, Flinders University, South Australia
Janet L. Storch, University of Victoria, Canada
Peter A. Sy, University of the Philippines, Quezon City
Michael Tooley, University of Colorado at Boulder
Verena Tschudin, University of Surrey, UK
Wibren van der Burg, Erasmus University, Rotterdam
Mary Warnock, Axford, Wiltshire, UK
Mary Anne Warren, San Francisco State University, San Francisco, California
Daniel Wikler, Harvard University, Boston
Dr Robert Young, La Trobe University, Melbourne
Acknowledgments
For encouraging us to take on the first edition of this project, we wish to thank Alyn Shipton – although we had some doubts along the way that we would ever finish what turned out to be a mammoth task.
In revising the book, we were ably assisted by Brent Howard. Our contributors will be well aware of the thoroughness with which he went through each essay, and of his ability to make valuable suggestions for improving not only the style, but also in many cases the substance of the argument. Sadly, Brent’s health problems meant that he could not assist us with the last few essays, and he did not live to see the volume in print. Thank you, Brent.
Helga Kuhse and Peter Singer
Part IIntroduction
1
What Is Bioethics?A Historical Introduction
HELGA KUHSE AND PETER SINGER
Since the 1960s ethical problems in health care and the biomedical sciences have gripped the public consciousness in unprecedented ways. In part, this is the result of new and sometimes revolutionary developments in the biomedical sciences and in clinical medicine. Dialysis machines, artificial ventilators, and organ transplants offer the possibility of keeping alive patients who otherwise would have died. In vitro fertilization and related reproduction techniques allow a range of new relationships between parents and children, including the birth of children who are not genetically related to the women who bear them. The development of modern contraceptives, prenatal testing, and the availability of safe abortions have given women and couples increased choices about the number and kinds of children they are going to have. Groundbreaking developments in genetics and the possibility of genetic enhancement add a further dimension to these choices. Technological breakthroughs, however, have not been the only factor in the increasing interest in ethical problems in this area. Another factor has been a growing concern about the power exercised by doctors and scientists, which shows itself in issues about “patients’ rights” and the rights of the community as a whole to be involved in decisions that affect them. This has meant greater public awareness of the value-laden nature of medical decision-making, and a critical questioning of the basis on which such decisions are made. It has become patently obvious during the past three or four decades that, to give just one example, someone has to decide whether to continue life-support for patients who will never regain consciousness. This is not a technical decision that only doctors are capable of making, but an ethical decision, on which patients and others may have views no less defensible than those of doctors.
It was in the climate of such new ethical issues and choices that the field of inquiry now known as “bioethics” was born. The word was not originally used in this sense. Van Rensselaer Potter first proposed the term for a “science of survival” in the ecological sense – that is, an interdisciplinary study aimed at ensuring the preservation of the biosphere (Potter 1970). This terminology never became widely established, however, and instead “bioethics” came to refer to the growing interest in the ethical issues arising from health care and the biomedical sciences. It is to bioethics in this latter sense that the present volume forms a Companion.
Although the term itself is new, and the prominence of bioethics owes much to recent developments in the biomedical sciences, bioethics can also be seen as a modern version of a much older field of thought, namely medical ethics. Undoubtedly, bioethics claims medical ethics as part of its province, but in many ways it takes a distinctly different approach. Traditionally, medical ethics has focused primarily on the doctor–patient relationship and on the virtues possessed by the good doctor. It has also been very much concerned with relations between colleagues within the profession, to the extent that it has sometimes seemed to exemplify George Bernard Shaw’s remark that “all professions are conspiracies against the laity.” Bioethics, on the other hand, is a more overtly critical and reflective enterprise. Not limited to questioning the ethical dimensions of doctor–patient and doctor–doctor relationships, it goes well beyond the scope of traditional medical ethics in several ways. First, its goal is not the development of, or adherence to, a code or set of precepts, but a better understanding of the issues. Second, it is prepared to ask deep philosophical questions about the nature of ethics, the value of life, what it is to be a person, the significance of being human. Third, it embraces issues of public policy and the direction and control of science. In all these senses, bioethics is a novel and distinct field of inquiry. Nevertheless, its history must begin with the history of medical ethics.
Medical Ethics
Medical ethics has a long and varied history (Reich 1995: 1439–646). While it is often thought that it had its beginning in the days of Hippocrates, in ancient Greece, it is in fact much older. Even tribal societies, without a written language, already had more or less well-articulated values that directed the provision of health care by shamans, exorcists, witches, sorcerers, and priests, as well as by midwives, bonesetters, and herbalists. One of the earliest written provisions relating to the practice of medicine is from the Code of Hammurabi, written in Babylon in about 1750 BC. It stipulates that if a doctor uses a bronze lancet to perform a major operation on a member of the nobility that results in death or leads to the loss of an eye, the doctor’s hand will be cut off (Pritchard 1969). Other early provisions of medical ethics were embedded in a religious tradition. A monument in the sanctuary of Asclepius, for example, tells doctors to be “like God: savior equally of slaves, of paupers, of rich men, of princes, and to all a brother, such help he would give” (Etziony 1973); and the Daily Prayer of a Physician, often attributed to the twelfth-century Jewish doctor Moses Maimonides (but now thought to date from the eighteenth century), condemns not only “thirst for profit” but also “ambition for renown and admiration” (Veatch 1989: 14).
The ancient ethical codes were often expressed in the form of oaths. The best-known medical oath in the Western tradition is the Oath of Hippocrates, commonly assumed to be from the fifth century BC, and often regarded as the very foundation of Western medical ethics. Despite the oath’s continuing appeal, its origins are clouded in mystery. Around 500 BC many different schools of medical practice coexisted, each of them reflecting somewhat different medical, philosophical, and religious beliefs. One of these medical schools, on the island of Cos, was headed by the physician Hippocrates. The Hippocratic School produced a large body of writings on medicine, science, and ethics. The date of the oath, however, is unknown, with estimates ranging from the sixth century BC to the beginning of the Christian era (Edelstein 1967). The oath’s significance in the history of Western medical ethics is twofold. In affirming that “I will use dietetic measures to the use and profit of the sick according to my capacity and understanding. If any danger and hurt threatens, I will endeavor to avert it,” the oath establishes the principles of beneficence and nonmaleficence, that is, that doctors must act so as to benefit their patients and seek to prevent harm. In addition, the oath’s prohibition on giving a potion to produce an abortion, or giving any poison to end the life of a patient, is consonant with the view of the sanctity of human life that has dominated medical ethics under Christendom. Other aspects of the oath – like the injunction to honor one’s teacher like a parent, “to share his fate and if occasion arise supply him with the necessaries of life” – are less frequently referred to in modern discussions of medical ethics.
While some scholars hold that the increasing importance of the Hippocratic Oath is linked to the rise of Christianity, this is disputed by others who believe that there are significant differences and tensions in the ethical precepts on which Hippocratic and Christian medicine were built. One obvious difference lies in the two traditions’ religious commitment. At different times, various modifications were thus introduced to make the Hippocratic Oath acceptable to Christians. One of the earliest of these dates from the tenth or eleventh century. It is entitled “From the Oath According to Hippocrates Insofar as a Christian May Swear it.” This oath no longer required Christian doctors to swear to Greek gods and goddesses; rather, those taking the oath addressed themselves to “God the Father of our Lord Jesus Christ” (Jones 1924: 23).
Perhaps one of the most significant moral influences of Christianity relates to its emphasis on love for one’s neighbor and compassion for the ill. Religious institutions, such as monasteries, began to set up “hospitals” for the ill and destitute, and Christian teaching emphasized that doctors must cultivate the virtues of compassion and charity. A treatise, probably dating from the early twelfth century, exhorts doctors not to heal “for the sake of gain, nor to give more consideration to the wealthy than to the poor, or to the noble than the ignoble” (MacKinney 1952: 27), and in the thirteenth century Thomas Aquinas considered it a sin if a doctor demanded an excessive fee, or if he refused to give gratuitous treatment to a patient who would die for want of it.
If greed and lack of charity were regarded as sins, so were other practices as well. Navarrus, a leading sixteenth-century canonist, provided a clear statement that condemned euthanasia as sinful, even if motivated by pity. In this, he followed St Augustine’s earlier pronouncement, in The City of God, that Christians must not choose suicide to escape illness; and Thomas Aquinas’ condemnation of the practice on the grounds that it was unnatural and a usurpation of God’s prerogative to give and take life.
When it came to another topic still central to contemporary bioethical debate – that of abortion – the historical position of the Church has been somewhat ambiguous. While the practice was standardly condemned in the early Christian literature, its wrongness was often regarded as a matter of degree. Following Aristotle, various thinkers – including Thomas Aquinas – thought that only the abortion of an animated fetus constituted homicide. Animation was presumed to occur at 40 days for male fetuses, and 90 days for female fetuses. By and large, this view remained dominant until 1869, when Pius IX declared all direct abortions homicide, regardless of the fetal stage of development.
Over the millennia, many different religious groups have attempted to formulate the central virtues and duties of doctors in various ways, and to articulate their particular responses to issues within medical ethics. The Roman Catholic Church is thus not the only Christian Church to have well-developed views on a range of issues in medical ethics; there are a number of Protestant Churches with distinct positions as well. In addition, there are of course extensive non-Christian religious teachings. Jewish and Islamic medical ethics, for example, articulate the duties and responsibilities of Jewish or Islamic doctors, and in East Asia and the Indian subcontinent, traditions of medical ethics are intertwined with Taoism, Confucianism, Buddhism, Shintoism, and Hinduism.
Over the centuries, medical practitioners themselves continued to reflect on the qualities that the virtuous doctor should possess, in particular in his relationship with patients. While these reflections were typically intertwined with prevailing religious trends and teachings, the seventeenth and eighteenth centuries brought some changes. John Gregory, a prominent eighteenth-century Scottish doctor-philosopher, drew on prevailing Enlightenment philosophies to articulate his view that doctors must be “sympathetic,” in the sense developed by the great Scottish philosopher David Hume. In other words, the doctor was to develop “that sensibility of heart which makes us feel for the distresses of our fellow creatures, and which, of consequence, incites us in the most powerful manner to relieve them” (Gregory 1817: 22).
Gregory’s reflections on the role of doctors and the doctor–patient relationship are still highly relevant today. Not only was he possibly the first doctor who sought to develop a universal moral basis for medical ethics – one that was free from narrow religious and parochial concerns – but his view of the central role played by care and sympathy in the doctor–patient relationship may also be read as one of the first articulations of an “ethics of care.” In recent times, care approaches to ethics have played an important role in feminist and nursing approaches to ethics.
Nursing Ethics
Medical ethics has not been the only source of ethics relating to health care. Professional nursing had its beginning in nineteenth-century England, where Florence Nightingale established the first school of nursing and laid down some of the ethical precepts that would shape the practice of nursing for a long time. Emphasis was placed on the character of the nurse. Above all else, a good nurse must be a good woman, as Florence Nightingale put it.
By the early 1890s nurses had begun seriously to discuss ethical issues in nursing. In 1899 the International Council of Nurses was established, professional journals, such as The American Journal of Nursing, sprang up and in 1901 Isabel Hampton Robb, a leader of nursing at the time, wrote one of the first books on nursing ethics, entitled Nursing Ethics for Hospitals and Private Use (Robb 1901). The vast majority of nurses are women and, until fairly recently, the vast majority of doctors have been men. Not surprisingly, the relationship between doctors and nurses reflected the different roles of women and men, and their relative status in society. One of the manifestations of this was the assumption that the primary responsibility of nurses was to doctors rather than to patients, and that nurses had to show absolute obedience to their medical colleagues. As one American nursing leader put it in 1917: “The first and most helpful criticism I ever received from a doctor was when he told me that I was supposed to be simply an intelligent machine for the purpose of carrying out his order” (Dock 1917: 394).
The view that the nurse’s primary responsibility was to the doctor prevailed until the 1960s, and was still reflected in the 1965 version of the International Code of Nursing Ethics. Item 7 of the Code states: “The nurse is under an obligation to carry out the physician’s orders intelligently and loyally.” The revival of feminist thinking in the late 1960s paralleled the developing self-consciousness and self-assertiveness of nurses, and in the 1973 International Council of Nurses’ Code for Nurses, the nurse’s “primary responsibility” is no longer seen to be to doctors but to patients – “to those people who require nursing care.”
This questioning by nurses of their traditional role and their relationship with doctors and patients eventually converged with a movement by feminist philosophers that challenged the traditional (and therefore male-dominated) view of ethics as a matter of abstract, impartial, and universal principles or rules. Instead of this conception of ethics, feminist philosophers like Nel Noddings (1984) conceived of ethics as a fabric of care and responsibility arising out of personal relationships. Building on this “female” approach to ethics, both philosophers and nurses sought to construct a new ethics for nurses based on the concept of care. Jean Watson, a nurse and a prominent proponent of a nursing ethics of care, applies to the nursing situation Noddings’s view that an ethics of care “ties us to the people we serve and not to the rules through which we serve them” (Watson 1988: 2).
Bioethics
Perhaps the first “modern” work of bioethics was Joseph Fletcher’s Morals and Medicine, published in 1954. Fletcher was an American Episcopalian theologian whose controversial “situation ethics” approach to ethical questions had more in common with consequentialist ethics than with traditional Christian views. In keeping with this, he later abandoned his religious belief. Although Fletcher did much to stimulate early discussions of ethical issues in medicine, it was only in the 1960s that bioethics really began to take shape as a field of study. This period was one of important cultural and social changes. The civil rights movement focused attention on issues of justice and inequality; the Cuban missile crisis and the Vietnam War led to a renewed questioning of war and nuclear weapons; and the resurgence of feminism, coupled with the availability of safe abortions and modern contraceptives, raised questions about women’s reproductive rights. For much of the late 1960s and early 1970s, university authorities were besieged by students, initially in opposition to the Vietnam War, but later also demanding that their courses be relevant to the larger social issues of the day. These changes had their effect on the practice of philosophy too, sparking a renewed interest in normative and applied ethics. While the prevailing orthodoxy among English-speaking moral philosophers throughout the 1960s was that philosophy deals with the analysis of moral terms rather than with practical issues, this attitude began to shift in the 1970s. Increasingly, moral philosophers began to address themselves to such practical ethical issues as abortion and euthanasia, the ethics of war and of capital punishment, the allocation of scarce medical resources, animal rights, and so on. They frequently dared to question what had not been questioned before. Since some of these issues related to practices in health care and the biological sciences, this movement in philosophy helped to establish bioethics as a critical discipline.
The other major impetus to the growth of the field was the development of new medical technology that threw up questions no one had needed to answer before. One of the first high-profile bioethics issues in the United States shows this clearly. The first machines that could dialyze patients who had suffered kidney failure dramatically saved the lives of patients who would otherwise have been dead in a matter of days; but the machines were very expensive, and there were many more patients who were suffering from renal disease than there were machines. In 1962 the artificial kidney centre in Seattle, Washington, set up a committee to select patients for treatment. Its life-and-death decisions earned it the name of “the God committee,” and focused attention on the criteria it used. A study that showed a bias toward people of the same social class and ethnic background as the committee itself eventually led to further discussion about the best way to solve such problems.
Of all the medical breakthroughs of this period, the most widely publicized was the first heart transplant, performed by the South African surgeon Christiaan Barnard in 1967. The patient’s death 18 days later did not dampen the spirits of those who hailed a new era of medicine – with its attendant ethical dilemmas. The ability to perform heart transplants was linked to the development of respirators, which had been introduced to hospitals in the 1950s. Respirators could save many lives, but not all those whose hearts kept beating ever recovered any other significant functions. In some cases, their brains had ceased to function altogether. The realization that such patients could be a source of organs for transplantation led to the setting up of the Harvard Brain Death Committee, and to its subsequent recommendation that the absence of all “discernible central nervous system activity” should be “a new criterion for death” (Rothman 1991). The recommendation has subsequently been adopted, with some modifications, almost everywhere.
If the availability of respirators and other powerful life-extending technology raised questions about the time when a patient should be declared dead, it also brought to the forefront questions about the proper limits of employing this technology in attempts to save or prolong a patient’s life. While it had generally been accepted that competent patients must not be treated against their will, the situation of incompetent patients was far less clear. This was true not only with regard to patients who had been rendered incompetent by illness, accident, or disease, but also the treatment of seriously disabled or premature newborn infants. The question was simply this: if a patient is unable to say “no,” does this mean that his or her life must always be prolonged for as long as possible, even if the patient’s prospects are very poor?
In 1973 a leading US medical journal, the New England Journal of Medicine, published a study by two pediatricians on the ethical dilemmas they encountered in the special care nursery (Duff and Campbell 1973). The doctors, Raymond Duff and A. G. M. Campbell, did not think that all severely ill or disabled infants should receive life-prolonging treatment. They thought it important to break down “the public and professional silence on a major taboo,” and indicated that out of 299 infants in the special-care nursery, 43 had died as a consequence of a non-treatment decision. A central question was whether these non-treatment decisions were morally and legally sound.
Questions about the limits of treatment for those who are unable to decide for themselves were raised not only in the United States but in other countries as well. Australian and British doctors, for example, had begun publishing their views on the selective non-treatment of infants born with spina bifida, and thereby contributed to an ongoing debate about the appropriateness of a “quality of life” or a “sanctity of life” approach in the practice of medicine (Kuhse and Singer 1985).
It was not until 1976 that a landmark US case – that of Karen Ann Quinlan – lent support to the view that doctors had no legal duty to prolong life in all circumstances. Karen Ann Quinlan, who had become comatose in 1975, was attached to a respirator to assist her breathing. Her condition was described as “chronic persistent vegetative state.” When the treating doctor refused to honor the family’s wishes that Karen be removed from the respirator, the case eventually came before the New Jersey Supreme Court, which decided that life-support could be discontinued without the treating doctor being deemed to have committed an act of unlawful homicide. The case had implications for future thinking about various issues relating to medical end-of-life decisions, such as the moral and legal relevance of the distinction between so-called ordinary and extraordinary means of treatment, the role of parents or guardians in medical end-of-life decisions, the validity or otherwise of a now incompetent patient’s previously expressed wishes regarding life-sustaining treatment, and so on.
Important ethical issues had already been raised in the United States with regard to the ethics of human experimentation by writers such as Henry K. Beecher (1966). It had become known that patients at the Jewish Chronic Disease Hospital in Brooklyn had been injected with live cancer cells, without their consent; that, from 1965 to 1971, mentally retarded children at Willowbrook State Hospital in New York had been inoculated with the hepatitis virus; and that a 1930 study aimed at determining the “natural history” of syphilis in untreated black men continued in Tuskegee, Alabama, until the early 1970s.
The public attention directed at these cases led to important changes in the scrutiny that US agencies henceforth directed at medical research. In 1973 the US Congress established the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research, whose members were charged with the task of drawing up regulations that would protect the rights and interests of subjects of research. While the Commission’s role was only temporary, its influence was not. Most of the Commission’s recommendations became regulatory law, and one of its reports – the Belmont Report – clearly articulated the ethical principles that should, in the Commission’s view, govern research: respect for persons, beneficence, and justice. Subsequently, principles such as these have been influential in bioethics through their incorporation into a widely used bioethics text, now in its sixth edition – Principles of Biomedical Ethics (Beauchamp and Childress 2009).
By the end of the 1960s, mounting ethical problems in medicine, research, and the health-care sciences had already led to the establishment in the United States of the first institutions and centers for bioethics. One of the best known of these centers – the Institute of Society, Ethics and the Life Sciences (the Hastings Center) – was founded by Daniel Callahan and Willard Gaylin in 1969, and its publication, the Hastings Center Report, was one of the first publications exclusively directed toward the newly emerging discipline of bioethics.
Almost from the beginning, bioethics was an interdisciplinary enterprise. While ethics had been the near-exclusive domain of moral philosophers and religious thinkers, bioethics crossed the boundaries not only of medicine, nursing, and the biomedical sciences, but of law, economics, and public policy as well. Bioethics in this broad, interdisciplinary sense has since become firmly established as a field of inquiry and of learning – first in the United States, and since then in many other countries as well. It is now taught at universities at both undergraduate and postgraduate levels, and many nursing and medical schools regard bioethics as an integral part of their curriculum. Today there are many bioethics research centers throughout the world, and bioethicists are often consulted by government commissions, law reform bodies, and professional organizations. Many countries have their own national bioethics associations and the International Association of Bioethics (IAB) links bioethicists from all parts of the world. A number of highly regarded scholarly bioethics journals emanate from different continents, and international congresses on bioethics are now a frequent phenomenon. In short, while bioethics had its beginning in the United States, it is now a global field of inquiry.
Bioethics is now also becoming more global in its focus. As Michael Selgelid points out in his contribution to this volume (chapter 36), 90 percent of medical research resources are spent on diseases that account for only 10 percent of the global burden of disease – the diseases that people in rich countries are likely to suffer from. This is in part because pharmaceutical corporations have no incentive to develop drugs to treat people who will not be able to afford to buy them, and in part because the government research funds of rich nations are also mostly directed toward finding treatments for the diseases that afflict the citizens of those nations. There is, therefore, comparatively little research into finding treatments for the diseases from which people in poorer nations are likely to suffer. That fact itself, of course, poses an ethical question – do the people of the rich nations, through their governments or through private philanthropy, have an obligation to reverse this imbalance? Bill and Melinda Gates clearly believe there is. The website of the Gates Foundation says that one of their key values is “All lives – no matter where they are being led – have equal value” and the research they are funding is directed against diseases like malaria, which kill millions of people every year, virtually all in developing countries.
But there has also been a 10/90 problem in bioethics itself – in fact, until the 1990s, probably much less than 10 percent of the work of bioethicists was focused on bioethical issues raised by 90 percent of the global burden of disease. This is now changing. Developing World Bioethics, a journal devoted to bioethical issues relating to the developing world, is one example of this change. The IAB has made a deliberate effort to encourage bioethics in developing countries. As discussed elsewhere in this volume, much more attention is being paid to bioethical issues raised by infectious diseases, including, but not limited to, HIV/AIDS. In this revised edition, we have also increased the number of articles dealing with global bioethical issues and issues that particularly face developing countries. It remains true, unfortunately, that the majority of articles dealing with specific issues focus on bioethical issues in affluent countries. That reflects the state of the field today – although it is moving in the right direction, as far as increasing its focus on problems outside affluent nations is concerned, it is moving slowly and there are still very few people working in bioethics in developing countries, and writing about the issues those countries face.
References
Beauchamp, T. L. and Childress, J. F. (2009) [1979]. Principles of Biomedical Ethics, 6th edn. New York: Oxford University Press.
Beecher, H. K. (1966). Ethical and clinical research. New England Journal of Medicine 274: 1354–60.
Dock, S. (1917). The relation of the nurse to the doctor and the doctor to the nurse. American Journal of Nursing 17.
Duff, R. S. and Campbell, A. G. M. (1973). Moral and ethical problems in the special-care nursery. New England Journal of Medicine 279: 890–4.
Edelstein, L. (1967). The Hippocratic Oath: text, translation and interpretation. In O. Temkin and C. L. Temkin (eds.), Ancient Medicine: Selected Papers of Ludwig Edelstein. Baltimore, MD: Johns Hopkins Press, pp. 3–63.
Etziony, M. B. (1973). The Physician’s Creed: An Anthology of Medical Prayers, Oaths, and Codes of Ethics Written by Medical Practitioners Throughout the Ages. Springfield, IL: Charles C. Thomas.
Fletcher, J. (1954). Morals and Medicine: The Moral Problems of the Patient’s Right to Know the Truth, Contraception, Artificial Insemination, Sterilization, Euthanasia. Boston: Beacon.
Gregory, J. (1817). Lectures and Duties on the Qualifications of a Physician. Philadelphia: M. Carey.
Jones, W. H. S. (1924). The Doctor’s Oath: An Essay in the History of Medicine. New York: Cambridge University Press.
Kuhse, H. and Singer, P. (1985). Should the Baby Live? The Problem of Handicapped Infants. Oxford: Oxford University Press.
MacKinney, L. C. (1952). Medical ethics and etiquette in the early Middle Ages: the persistence of Hippocratic ideals. Bulletin of the History of Medicine 26: 1–31.
Noddings, N. (1984). Caring: A Feminine Approach to Ethics and Moral Education. Berkeley: University of California Press.
Potter, V. R. (1970). Bioethics, science of survival. Biology and Medicine 14: 127–53.
Pritchard, J. B. (1969). Ancient Near Eastern Texts Relating to the Old Testament, 3rd edn. Princeton, NJ: Princeton University Press.
Reich, W. T. (ed.) (1995). Encyclopedia of Bioethics. London: Simon & Schuster and Prentice Hall International.
Robb, I. H. Hampton (1901). Nursing Ethics for Hospitals and Private Use. Cleveland, OH: J. B. Savage.
Rothman, D. (1991). Strangers at the Bedside. New York: Basic Books.
Veatch, R. M. (1989). Medical Ethics. Boston: Jones and Bartlett.
Watson, J. (1988). Introduction: an ethic of caring/curing/nursing qua nursing. In J. Watson and M. A. Ray (eds.), The Ethics of Care and the Ethics of Cure: Synthesis in Chronicity. New York: National League for Nursing.
Part IIQuestions About Bioethics
2
Ethical Theory and Bioethics
JAMES RACHELS
What is the relation between bioethics and ethical theory? Since bioethics deals with the moral issues that come up in particular cases, and ethical theory deals with the standards and principles of moral reasoning, it is natural to think the relation between them might be something like this:
The straightforward-application model. The ethical theory is the starting-point, and we apply the theory to the case at hand in order to reach a conclusion about what should be done.
Utilitarianism is the leading example of an ethical theory that might be thought to solve bioethical problems by the straightforward application of its ideas. Utilitarianism says that in any situation we should do what will have the best overall consequences for everyone concerned. If this is our theory, and we want to decide what should be done in a particular case, we simply calculate the likely effects of various actions and choose the one that produces the greatest benefit for the greatest number of people.
But many bioethicists reject this model. In the first place, anyone who approaches an ethical problem by announcing “I hold such-and-such a theory; therefore my conclusion is so-and-so” will be unlikely to get much of a hearing. We want to know what really is best, not just what this or that theory says. Moreover, many investigators doubt that there can be a satisfactory ethical theory of the kind that philosophers have traditionally sought, because, they say, morality cannot be codified in a set of rules. Instead, living morally is a matter of cultivating virtuous habits of action, including, perhaps, the kind of “caring” behavior that some feminist writers have argued is central (see chapter 11, “A Care Approach”). And in any case, it is said, bioethical controversies are too complicated to be resolved by the simple application of a theory. Theories are general and abstract, while real life is messy and detailed.
If we reject the straightforward-application model, where do we turn for an alternative? One of the most popular options is an approach that focuses on “case studies” – detailed investigations of specific cases that make use of whatever analytical ideas and principles seem most promising in the circumstances at hand. The case-study approach suggests a different conception of the relation between ethical theory and bioethics:
The physics/car-mechanic model. The relation between ethical theory and bioethics is like the relation between physics and automobile repair. Cars operate according to the laws of physics, to be sure; but one doesn’t have to know physics to be a good mechanic, and one certainly does not “apply” the laws of physics to fix cars. The mechanic’s reasoning does not begin with “For every action, there is an equal and opposite reaction.” Instead, it begins with something like: “The problem is either electrical or fuel-related. If it’s electrical …”
So, like the car mechanic, the bioethicist will rely on mid-level principles, ignoring the lofty but unhelpful pronouncements of high-level theory.
Case Studies and Mid-level Principles
At first blush, the case-study approach seems to permit bioethicists to make progress without resorting to ethical theory. But this turns out to be an illusion. In ethics, theoretical issues crop up everywhere. Deciding about abortion requires that we think about the nature of persons; the allocation of health-care resources raises questions of distributive justice; and arguments about euthanasia make critical assumptions about the meaning and value of human life. Without the resources of ethical theory, we could make little progress in dealing with such matters. It is also an illusion to think that mid-level principles can, by themselves, yield definitive answers to ethical questions.
Consider the case of Theresa Ann Campo Pearson, an anencephalic infant known as “Baby Theresa,” who was born in Florida in 1992. There are about 1,000 such infants – babies without brains – born each year in the United States, so Baby Theresa’s story would not have been newsworthy except for an unusual request by her parents. Knowing that their baby could not live long and that, even if she could, she would never have a conscious life, Baby Theresa’s parents volunteered her organs for transplant. They thought her kidneys, liver, heart, lungs, and eyes should go to other children who could benefit from them. The physicians believed this was a good idea, but Florida law would not allow it. So after nine days Baby Theresa died, and by then her organs had deteriorated too much to be transplanted. Other children died as well – the ones who would have received the transplants – but because we do not know which children they were, we tend not to think of their deaths as real costs of the decision.
The newspaper stories about Baby Theresa prompted a great deal of public discussion. Would it have been right to remove the infant’s organs, thereby causing her immediate death, to save the other children? A number of professional bioethicists joined the debate, but surprisingly few of them agreed with the parents and physicians. Instead they appealed to various principles to support letting all the children die. “It just seems too horrifying to use people as means to other people’s ends,” said one expert. Another explained, “It is unethical to kill in order to save. It’s unethical to kill person A to save person B.” And a third added: “What the parents are really asking for is: kill this dying baby so that its organs may be used for someone else. Well, that’s really a horrendous proposition.”
Here we see mid-level principles at work (see chapter 7, “A Principle-based Approach”). (“It is unethical to kill in order to save” is a typical mid-level principle.) Compared to the abstract pronouncements of ethical theory, mid-level principles are much more like everyday moral rules. They express our commonsense understanding of right and wrong. Therefore, it may be argued, we can have greater confidence in decisions that are supported by widely shared mid-level principles than decisions based on general theories, which are more remote from everyday life and inevitably more controversial.
Of course, these principles are called “mid-level” because they are derived from, or justified by, higher-level principles. So aren’t we just ignoring an important part of the picture if we are content with only the mid-level rules? To this there are two replies. First, it may be maintained that mid-level principles are not derived from higher considerations. They may be viewed as a collection of independent moral principles each of which is valid in itself. (Someone taking this view might like the sort of general ethical theory championed by W. D. Ross in the 1930s.) The problem, however, is that within this approach one has no way of adjudicating conflicts between the independent rules. Suppose a different bioethicist, looking at the case of Baby Theresa, felt that the mid-level rule “save as many children as possible” has priority? Or suppose she favored the rule “saving the life of a child with the potential for a satisfying human life is more important than respecting the life of a child without a brain?” Then, of course, the conclusion would be that Theresa’s organs should be taken. So the mid-level rules alone cannot provide a definitive answer to the question of what we should do.
Second, and more interesting, it could be pointed out that the same mid-level rules may be endorsed by more than one higher-level principle. Kantians, for example, take it as an ultimate principle that people should always be treated as ends in themselves; so they would naturally insist that “It is wrong to kill person A to save person B.” But utilitarians might also endorse this mid-level principle. They might see it as a useful rule of thumb because following it will have generally good consequences, just as following other familiar rules – don’t lie, don’t steal, and so on – have generally good consequences. Thus these theorists may arrive at the same mid-level rules, despite their different starting-points. If so, we do not need to worry about which starting-point is correct. On the contrary, our confidence in the mid-level principle is increased by the fact that many outlooks endorse it.
Once again, however, a problem arises about how to adjudicate conflicts. Both Kantians and utilitarians would also endorse, as a mid-level rule, that we should save as many children as possible. But when there is a conflict, they might have different recommendations about which mid-level rule should be given priority. By establishing priorities, each theory gives an answer to the question of what should be done. But if they ultimately lead to different answers, we cannot avoid the larger issue of which theory is correct.
Of course, the failure to reach a definite conclusion need not be regarded as a defect. There is a way to avoid choosing between theories: when different lines of reasoning lead to different outcomes, we can conclude that we are faced with an unresolvable dilemma. This may appeal to those who dislike appearing dogmatic. “Not all dilemmas have easy solutions,” it may be said, and the doctors and scientists may be left to fend for themselves, with the bioethicist wishing them good luck. According to taste, this may be considered a realistic acknowledgment of the complexity of an issue or a failure of nerve.
The following episode illustrates an additional way in which ethical theory can aid in the analysis of particular cases. In 1995 an international medical team fought an outbreak of ebola – a devastating virus that destroys cells and causes disintegration of the internal organs as it spreads throughout the body – in Kikwit, Zaire, in which 244 people died. As the epidemic was winding down, a nurse who had worked throughout the crisis was stricken, and the Zairian doctors formulated a desperate plan to save her. This particular strain of ebola did not kill everyone who became infected; one in five victims survived. So the Zairian physicians proposed to save the nurse by transfusing whole blood from one of the survivors, in the hope that whatever antibodies had saved him would be transferred to her.
The foreign doctors adamantly opposed this plan. The donor blood might contain HIV, or hepatitis, or some other harmful agent, they said. And suppose the diagnosis is mistaken – what if she only has malaria or typhoid? By transfusing the blood we might actually be giving her ebola, not curing her of it. Besides, in a similar procedure using animals, the treatment had failed.
The Zairian physicians met privately to discuss these objections. They dismissed the worries about giving the nurse HIV or typhoid; after all, she already had ebola. As for the possibility that the diagnosis was mistaken, this was also dismissed. “We shouldn’t doubt our diagnosis,” said one doctor, “we’ve seen so many cases.” They concluded that, although their chances of helping the nurse in this way were slight, it was better than nothing.
With the nurse’s consent, the transfusion was given, and she recovered. Eight more patients were then given similar transfusions, and seven of them also recovered. These were the last cases in the epidemic. The foreign doctors did not, however, concede that the treatment had worked. “We’ll never know,” said a physician from the Centers for Disease Control in Atlanta. Other possible explanations for the recoveries were offered – late in the epidemic the virus may have become less deadly, or people may have been getting smaller viral loads when infected.
