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Although the subject of federally mandated Institutional Review Boards (IRBs) has been extensively debated, we actually do not know much about what takes place when they convene. The story of how IRBs work today is a story about their past as well as their present, and Behind Closed Doors is the first book to meld firsthand observations of IRB meetings with the history of how rules for the treatment of human subjects were formalized in the United States in the decades after World War II.

 

Drawing on extensive archival sources, Laura Stark reconstructs the daily lives of scientists, lawyers, administrators, and research subjects working—and “warring”—on the campus of the National Institutes of Health, where they first wrote the rules for the treatment of human subjects. Stark argues that the model of group deliberation that gradually crystallized during this period reflected contemporary legal and medical conceptions of what it meant to be human, what political rights human subjects deserved, and which stakeholders were best suited to decide. She then explains how the historical contingencies that shaped rules for the treatment of human subjects in the postwar era guide decision making today—within hospitals, universities, health departments, and other institutions in the United States and across the globe. Meticulously researched and gracefully argued, Behind Closed Doors will be essential reading for sociologists and historians of science and medicine, as well as policy makers and IRB administrators.

The problems of bioethics are embedded in people's lives and social worlds. They are shaped by individual biographies and relationships, by the ethos and institutions of health care, by economic and political pressures, by media depictions, and by the assumptions, beliefs, and values that permeate cultures and times. Yet these forces are largely ignored by a professional bioethics that concentrates on the theoretical justification of decisions.

The original essays in this volume use qualitative research methods to expose the multiple contexts within which the problems of bioethics arise, are defined and debated, and ultimately resolved. In a provocative concluding essay, one contributor asks his fellow ethnographers to reflect on the ethical problems of ethnography.

People do not choose to suffer from catastrophic illnesses, but considerable human choice is involved in the ways in which the participants in the process treat and conduct research on these diseases. Catastrophic Diseases draws a powerful and humane portrait of the patients who suffer from these illnesses as well as of the physician-investigators who treat them, and describes the major pressures, conflicts, and decisions which confront all of them. By integrating a discussion of "facts" and "values," the authors highlight the forces which affect new developments in medicine—such as kidney and heart transplants—and the controversial issues they generate. Katz and Capron explore these issues through the use of dual conceptual perspectives. Their study first examines and evaluates the authority which should be vested in each of the chief participants in the catastrophic disease process—the physician-investigator, the patient-subject and his relatives, the professionals, and the state. Challenging questions are raised concerning medical education, informed consent, and professional responsibility. The authors next explore how the roles and capacities of the participants vary not only according to the basic issues they face but also according to the point in decision-making at which these issues arise. The process of investigating and treating catastrophic diseases, the authors believe, can thus usefully be divided into three decision-making stages—the formulation of policy, the administration of research and therapy, and the review of the decisions and their consequences. In conclusion, Katz and Capron demonstrate the need for a variety of individuals and groups with diverse values to be involved in decision-making in a manner which will not unnecessarily impede the scientific investigation of these diseases.

Van Rensselaer Potter created and defined the term "bioethics" in 1970, to describe a new philosophy that sought to integrate biology, ecology, medicine, and human values. Bioethics is often linked to environmental ethics and stands in sharp contrast to biomedical ethics. Because of this confusion (and appropriation of the term in medicine), Potter chose to use the term "Global Bioethics" in 1988. Potter's definition of bioethics from Global Bioethics is, "Biology combined with diverse humanistic knowledge forging a science that sets a system of medical and environmental priorities for acceptable survival."

The rural community presents not only distinct health care delivery challenges but also ethical problems for clinicians and administrators of small, rural health care facilities. Health care delivered in a rural context—in closely knit, tightly interdependent small community settings—poses unique ethical considerations for clinical practitioners. For example, a provider in a resource-poor rural setting may be faced with treating a family member, friend, business associate, or neighbor, since the role separation between clinician and patient that predominates in the urban setting is less likely to occur in a small town. Because of the unique rural context, the solutions that health care providers develop to resolve complex ethics dilemmas may differ from solutions reached in urban areas. The Handbook for Rural Health Care Ethics is designed to be a useful resource for clinicians and administrators in rural settings. It draws on the available research and real-life examples to paint a picture of challenging, yet all-too-familiar ethics conflicts while offering strategies for a proactive, preventive approach to ethical issues.

The ancient Hippocratic oath that every doctor pledges upon graduation from medical school is a code based on genuine devotion to people and a desire to serve them. It is also a code in urgent need of updating to reflect the technological and moral changes of modern society and the complicated dilemmas facing every practicing physician.

This collection of essays by some of the wisest observers of modern medicine probes the various forces affecting health care today: the power of the new technology in diagnosing and treating illnesses, the growing appreciation of mind/body interactions, the emergence of corporate hospitals and health care centers, and, most importantly, the essence of physicianhood—what makes a doctor want to practice medicine.

In considering these issues, the essayists question whether the medical-industrial complex will destroy physicians as we know them, making doctors employees of large profit-making institutions and more responsible to their companies than to their patients. Will increasing versatility in technological medicine remove doctors even further from the patient's bedside, weakening the diminishing bond between patient and doctor? Are there points of contact between western "scientific" medicine and holistic practices? Is there a place in modern medicine for work therapy and the placebo effect?

Each of these issues prevalent in medicine today has, in its own particular way, an effect upon the core relationship between doctor and patient. In Search of the Modern Hippocrates is dedicated to the premise that current changes in medicine can produce an altered and strengthened medical profession resolved to preserve the inextricable link between commitment and care. Ending with the development of a modern oath of ethics, it provides an important guide to medicine in the complex world we now face.

The twelve essays in this stimulating volume, written by health care professionals and others working with the important issue of institutional ethics, focus on the world of academic health centers and provide rich, informed commentaries on significant problems integral to the character and work of those centers. Daniel Steiner demonstrates how the viability of independent research may be threatened by university liaisons with industry. Donald Frederickson traces the history of the National Institutes of Health response to the ethical challenges in clinical investigation and fetal research. Edmund Pellegrino recommends ways in which health-related institutions may translate their concern into action. Robert Coles examines the tensions between institutional and personal values in a very provocative way. Other directions are explored by essayists Roger Bulger, Stephen Toulmin, H. Tristram Engelhardt, Kim Dunn, Mitchell Rabkin, James Haughton, Lawrence Green, and the editors themselves.

Every essay in this wide-ranging collection reveals the implications and effects of institutional values. The end result is a clear picture of conflicts of values: ethical, social, economic, ethnic, cultural, and pedagogic. Integrity in Health Care Institutions points out the need for a deliberate attempt to sort out the values of institutions and, when they are fully and clearly displayed, to use priorities as a guide to satisfying the obligations of academic health centers to those who work within their walls; to the patients, students, scientists, and teachers they serve; and to society in general.

Physicians and nurses, hospital and university administrators, attorneys, sociologists, and everyone concerned about the moral interaction between institutions and individuals will want to read this book.

In riveting case studies, Robert Zussman describes how medical decisions in ICUs are considered and reconsidered, made and remade, negotiated and renegotiated. He concentrates on the practice of medical ethics, on the ways in which right and wrong are interpreted and used in the ward—how definitions of right and wrong emerge from the social situations of patients, families, doctors, and nurses and from the workings of hospitals and the courts.

His book is a portrait of the way careful planning is undermined by the unpredictability of illness and the persistence of self-interest, by high principle and curious compromise.

Rather than defining and using a single concept of intuition—philosophical, practical, or neuroscientific—Braude here examines intuition as it occurs at different levels and in different contexts of clinical reasoning. He argues that not only does intuition provide the bridge between medical reasoning and moral reasoning, but that it also links the epistemological, ontological, and ethical foundations of clinical decision making. In presenting his case, Braude takes readers on a journey through Aristotle’s Ethics—highlighting the significance of practical reasoning in relation to theoretical reasoning and the potential bridge between them—then through current debates between regulators and clinicians on evidence-based medicine, and finally applies the philosophical perspectives of Reichenbach, Popper, and Peirce to analyze the intuitive support for clinical equipoise, a key concept in research ethics. Through his phenomenological study of intuition Braude aims to demonstrate that ethical responsibility for the other lies at the heart of clinical judgment.

 

Braude’s original approach advances medical ethics by using philosophical rigor and history to analyze the tacit underpinnings of clinical reasoning and to introduce clear conceptual distinctions that simultaneously affirm and exacerbate the tension between ethical theory and practice. His study will be welcomed not only by philosophers but also by clinicians eager to justify how they use moral intuitions, and anyone interested in medical decision making.

Embryo adoptions, stem cells capable of transforming into any cell in the human body, intra- and inter-species organ transplantation—these and other biomedical advances have unsettled ideas of what it means to be human, of when life begins and ends. In the first study to consider the cultural impact of the medical transformation of the entire human life span, Susan Merrill Squier argues that fiction—particularly science fiction—serves as a space where worries about ethically and socially charged scientific procedures are worked through. Indeed, she demonstrates that in many instances fiction has anticipated and paved the way for far-reaching biomedical changes. Squier uses the anthropological concept of liminality—the state of being on the threshold of change, no longer one thing yet not quite another—to explore how, from the early twentieth century forward, fiction and science together have altered not only the concept of the human being but the contours of human life.

Drawing on archival materials of twentieth-century biology; little-known works of fiction and science fiction; and twentieth- and twenty-first century U.S. and U.K. government reports by the National Institutes of Health, the Parliamentary Advisory Group on the Ethics of Xenotransplantation, and the President’s Council on Bioethics, she examines a number of biomedical changes as each was portrayed by scientists, social scientists, and authors of fiction and poetry. Among the scientific developments she considers are the cultured cell, the hybrid embryo, the engineered intrauterine fetus, the child treated with human growth hormone, the process of organ transplantation, and the elderly person rejuvenated by hormone replacement therapy or other artificial means. Squier shows that in the midst of new phenomena such as these, literature helps us imagine new ways of living. It allows us to reflect on the possibilities and perils of our liminal lives.

Listening to the Whispers gives voice to scholars in philosophy, medical anthropology, physical therapy, and nursing, helping readers re-think ethics across the disciplines in the context of today's healthcare system. Diverse voices, often unheard, challenge readers to enlarge the circle of their ethical concerns and look for hidden pathways toward new understandings of ethics. Essays range from a focus on the context of corporatization and managed care environments to a call for questioning the fundamental values of society as these values silently affect many others in healthcare. Each chapter is followed by a brief essay that highlights issues useful for scholarly research and classroom discussion. The conversations of interpretive research in healthcare contained in this volume encourage readers to re-think ethics in ways that will help to create an ethical healthcare system with a future of new possibilities.

Outstanding Academic Title, Choice Magazine

Most of us want and expect medicine’s miracles to extend our lives. In today’s aging society, however, the line between life-giving therapies and too much treatment is hard to see—it’s being obscured by a perfect storm created by the pharmaceutical and biomedical industries, along with insurance companies. In Ordinary Medicine Sharon R. Kaufman investigates what drives that storm’s “more is better” approach to medicine: a nearly invisible chain of social, economic, and bureaucratic forces that has made once-extraordinary treatments seem ordinary, necessary, and desirable. Since 2002 Kaufman has listened to hundreds of older patients, their physicians and family members express their hopes, fears, and reasoning as they faced the line between enough and too much intervention. Their stories anchor Ordinary Medicine. Today’s medicine, Kaufman contends, shapes nearly every American’s experience of growing older, and ultimately medicine is undermining its own ability to function as a social good. Kaufman’s careful mapping of the sources of our health care dilemmas should make it far easier to rethink and renew medicine’s goals.

Sir William Osler (1849–1919) had a long and distinguished career as a physician and professor at McGill University, the University of Pennsylvania, the Johns Hopkins University, and finally, as the Regius Chair in Medicine at Oxford University. Over the course of his professional life, Osler gave many addresses—mostly to medical students—on medical ethics, medicine and the humanities, the relationship between the medical practitioner and the patient, and, as the titular essay makes clear, on the “way of life” he advocated for the ethical physician. He remains an inspiration to many contemporary medical practitioners; there are active Osler Societies throughout the world.
While Osler’s talks were frequently published during his lifetime and they have been published individually and in different compilations since his death, none contain the over 1500 annotations that appear here, notes that serve to explain the many philosophical, biblical, historical, and literary allusions contained in Osler’s writings.
This thoroughly explicated selection of Sir William Osler’s writings will be cherished by physicians, medical students, nurses, philosophers, theologians, and ethicists in this—and future—generations.

In Private Bodies, Public Texts, Karla FC Holloway examines instances where medical issues and information that would usually be seen as intimate, private matters are forced into the public sphere. As she demonstrates, the resulting social dramas often play out on the bodies of women and African Americans. Holloway discusses the spectacle of the Terri Schiavo right-to-die case and the injustice of medical researchers’ use of Henrietta Lacks’s cell line without her or her family’s knowledge or permission. She offers a provocative reading of the Tuskegee syphilis study and a haunting account of the ethical dilemmas that confronted physicians, patients, and families when a hospital became a space for dying rather than healing during Hurricane Katrina; even at that dire moment, race mattered. Private Bodies, Public Texts is a compelling call for a cultural bioethics that attends to the historical and social factors that render some populations more vulnerable than others in medical and legal contexts. Holloway proposes literature as a conceptual anchor for discussions of race, gender, bioethics, and the right to privacy. Literary narratives can accommodate thick description, multiple subjectivities, contradiction, and complexity.

This volume moves beyond ethics as problem-solving or ethics as etiquette to offer a look at ethics in primary care—as opposed to life-or-death—medical care. Professional Ethics and Primary Care Medicine deals with the ethics of routine, day-to-day encounters between doctors and patients. It probes beneath the hard decisions to look at the moral frameworks, habits of thought, and customs of practice that underlie choices. Harmon Smith and Larry Churchill argue that primary care, far from being merely a setting for the rendering of care, provides a new understanding of both physician and patient, and thereby offers a fresh basis for medical ethics.

Slow Cures and Bad Philosophers uses insights from the philosophy of Ludwig Wittgenstein to rethink bioethics. Although Wittgenstein produced little formal writing on ethics, this volume shows that, in fact, ethical issues permeate the entirety of his work. The scholars whom Carl Elliott has assembled in this volume pay particular attention to Wittgenstein’s concern with the thick context of moral problems, his suspicion of theory, and his belief in description as the real aim of philosophy. Their aim is not to examine Wittgenstein’s personal moral convictions but rather to explore how a deep engagement with his work can illuminate some of the problems that medicine and biological science present.
As Elliott explains in his introduction, Wittgenstein’s philosophy runs against the grain of most contemporary bioethics scholarship, which all too often ignores the context in which moral problems are situated and pays little attention to narrative, ethnography, and clinical case studies in rendering bioethical judgments. Such anonymous, impersonal, rule-writing directives in which health care workers are advised how to behave is what this volume intends to counteract. Instead, contributors stress the value of focusing on the concrete particulars of moral problems and write in the spirit of Wittgenstein’s belief that philosophy should be useful. Specific topics include the concept of “good dying,” the nature of clinical decision making, the treatment of neurologically damaged patients, the moral treatment of animals, and the challenges of moral particularism.
Inspired by a philosopher who deplored “professional philosophy,” this work brings some startling insights and clarifications to contemporary ethical problems posed by the realities of modern medicine.

Contributors. Larry Churchill, David DeGrazia, Cora Diamond, James Edwards, Carl Elliott, Grant Gillett, Paul Johnston, Margaret Olivia Little, James Lindemann Nelson, Knut Erik Tranoy

Seven in ten Americans over the age of age of sixty who require medical decisions in the final days of their life lack the capacity to make them. For many of us, our biggest, life-and-death decisions—literally—will therefore be made by someone else. They will decide whether we live or die; between long life and quality of life; whether we receive heroic interventions in our final hours; and whether we die in a hospital or at home. They will determine whether our wishes are honored and choose between fidelity to our interests and what is best for themselves or others. Yet despite their critical role, we know remarkably little about how our loved ones decide for us.
             
Speaking for the Dying tells their story, drawing on daily observations over more than two years in two intensive care units in a diverse urban hospital. From bedsides, hallways, and conference rooms, you will hear, in their own words, how physicians really talk to families and how they respond. You will see how decision makers are selected, the interventions they weigh in on, the information they seek and evaluate, the values and memories they draw on, the criteria they weigh, the outcomes they choose, the conflicts they become embroiled in, and the challenges they face. Observations also provide insight into why some decision makers authorize one aggressive intervention after the next while others do not—even on behalf of patients with similar problems and prospects. And they expose the limited role of advance directives in structuring the process decision makers follow or the outcomes that result.
           
Research has consistently found that choosing life or death for another is one of the most difficult decisions anyone can face, sometimes haunting families for decades. This book shines a bright light on a role few of us will escape and offers steps that patients and loved ones, health care providers, lawyers, and policymakers could undertake before it is too late.
 

Walker Percy brought to his novels the perspective of both a doctor and a patient. Trained as a doctor at Columbia University, he contracted tuberculosis during his internship as a pathologist at Bellevue Hospital and spent the next three years recovering, primarily in TB sanitoriums. This collection of essays explores not only Percy’s connections to medicine but also the underappreciated impact his art has had—and can have—on medicine itself.
The contributors—physicians, philosophers, and literary critics—examine the relevance of Percy’s work to current dilemmas in medical education and health policy. They reflect upon the role doctors and patients play in his novels, his family legacy of depression, how his medical background influenced his writing style, and his philosophy of psychiatry. They contemplate the private ways in which Percy’s work affected their own lives and analyze the author’s tendency to contrast the medical-scientific worldview with a more spiritual one. Assessing Percy’s stature as an author and elucidating the many ways that reading and writing can combine with diagnosing and treating to offer an antidote to despair, they ask what it means to be a doctor, a writer, and a seeker of cures and truths—not just for the body but for the malaise and diseased spirituality of modern times.
This collection will appeal to lovers of literature as well as medical professionals—indeed, anyone concerned with medical ethics and the human side of doctoring.

Contributors. Robert Coles, Brock Eide, Carl Elliott, John D. Lantos, Ross McElwee, Richard Martinez, Martha Montello, David Schiedermayer, Jay Tolson, Bertram Wyatt-Brown, Laurie Zoloth-Dorfman

The Origins of Bioethics argues that what we remember from the history of medicine and how we remember it are consequential for the identities of doctors, researchers, and patients in the present day. Remembering when medicine went wrong calls people to account for the injustices inflicted on vulnerable communities across the twentieth century in the name of medicine, but the very groups empowered to create memorials to these events often have a vested interest in minimizing their culpability for them. Sometimes these groups bury this past and forget events when medical research harmed those it was supposed to help. The call to bioethical memory then conflicts with a desire for “minimal remembrance” on the part of institutions and governments. The Origins of Bioethics charts this tension between bioethical memory and minimal remembrance across three cases—the Tuskegee Syphilis Study, the Willowbrook Hepatitis Study, and the Cincinnati Whole Body Radiation Study—that highlight the shift from robust bioethical memory to minimal remembrance to forgetting.

Setting out the implications of the postmodern condition for medical ethics, Troubled Bodies challenges the contemporary paradigms of medical ethics and reconceptualizes the nature of the field. Drawing on recent developments in philosophy, philosophy of science, and feminist theory, this volume seeks to expand familiar ethical reflections on medicine to incorporate new ways of thinking about the body and the dilemmas raised by recent developments in medical techniques.
These essays examine the ways in which the consideration of ethical questions is shaped by the structures of knowledge and communication at work in clinical practice, by current assumptions regarding the concept of the body, and by the social and political implications of both. Representing various perspectives including medicine, nursing, philosophy, and sociology, these essays look anew at issues of abortion, reproductive technologies, the doctor-patient relationship, the social construction of illness, the cultural assumptions and consequences of medicine, and the theoretical presuppositions underlying modern psychiatry. Diverging from the tenets of mainstream bioethics, Troubled Bodies suggests that, rather than searching for the correct "coherent perspective" from which to draw ethical principles, we must apprehend the complexity and diversity of the discursive systems within which we dwell.