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Vol. 1 (2011) through current issue
Narrative Inquiry in Bioethics (NIB) provides a forum for exploring current issues in bioethics through the publication and analysis of personal stories, qualitative and mixed-methods research articles, and case studies. Articles may address the experiences of patients and research participants, as well as health care workers and researchers. NIB is dedicated to fostering a deeper understanding of bioethical issues by engaging rich descriptions of complex human experiences. While NIB upholds appropriate standards for narrative inquiry and qualitative research, it seeks to publish articles that will appeal to a broad readership of health care providers and researchers, bioethicists, sociologists, policy makers, and others.
The Power of the Personal Essay in Health Policy
This anthology brings together the personal stories of patients, physicians, policy makers, and others whose writings humanize discussions and deliberations about health policy. Drawn from the popular "Narrative Matters" column in the journal Health Affairs, the essays epitomize the policy narrative, a new genre of writing that explores health policy through the expression of personal experiences. Forty-six articles focus on such topics as the hard financial realities of medical insurance, AIDS, assisted suicide, marketing drugs, genetic engineering, organ transplants, and ethnic and racial disparities in the health care system. The narratives raise ethical and moral issues that are being studied in many of our nation's medical schools. This compelling collection provides important insight into the human dimensions of health care and health policy.
The Moral Challenges of Medical Innovation
Neonatal intensive care has been one of the most morally controversial areas of medicine during the past thirty years. This study examines the interconnected development of four key aspects of neonatal intensive care: medical advances, ethical analysis, legal scrutiny, and econometric evaluation. The authors assert that a dramatic shift in societal attitudes toward newborns and their medical care was a stimulus for and then a result of developments in the medical care of newborns. They divide their analysis into three eras of neonatal intensive care. The first, characterized by the rapid advance of medical technology from the late 1960s to the Baby Doe case of 1982, established neonatal care as a legitimate specialty of medical care, separate from the rest of pediatrics and medicine. During this era, legal scholars and moral philosophers debated the relative importance of parental autonomy, clinical prognosis, and children's rights. The second era, beginning with the Baby Doe case (a legal battle that spurred legislation mandating that infants with debilitating birth defects be treated unless the attending physician deems efforts to prolong life "futile"), stimulated efforts to establish a consistent federal standard on neonatal care decisions and raised important moral questions concerning the meaning of "futility" and of "inhumane" treatment. In the third era, a consistent set of decision-making criteria and policies was established. These policies were the result of the synergy and harmonization of newly agreed upon ethical principles and newly discovered epidemiological characteristics of neonatal care. Tracing the field's recent history, notable advances, and considerable challenges yet to be faced, the authors present neonatal bioethics as a paradigm of complex conversation among physicians, philosophers, policy makers, judges, and legislators which has led to responsible societal oversight of a controversial medical innovation.
Feminist Ethics and Home Health Care
"No Place Like Home? combines the rigorous scholarship of an academic feminist philosopher with the 'close to the ground' insights that come from bathing, feeding, and caring for older people as a home care aide. This book develops recent work in feminist philosophy that attends to both care and justice to propose a way to reform home care to reduce its exploitative qualities while assuring that it is more than 'bed and body' work." -- Martha B. Holstein, Visiting Scholar, Center for Research on Women and Gender at the University of Illinois, Chicago and co-editor, Ethics and Community Based Elder Care
"For a scathing critique of how American society abuses both those who receive home-based care as well as those who provide it, and a sophisticated vision of how we might move toward a more just future, there's no book like No Place Like Home?." -- James Lindemann Nelson, co-author of Alzheimer's: Answers to Hard Questions for Families
critique of current practices and institutions is thorough and accurate, benefiting
both from her own experience as a homecare worker and the philosophically
sophisticated tools she brings to bear on it." -- Laura Purdy, Professor of
Philosophy, Wells College
In this provocative new book, Jennifer A. Parks analyzes practices in the home health care industry and concludes that they are highly exploitative of both workers and patients. Under the existing system, underpaid workers are expected to perform tasks for which they are inadequately trained, in unreasonably short periods of time. This situation, Parks argues, harms workers and puts home health care patients at risk. To the extent that the majority of patients and workers in home health care are women, she turns to feminist ethics for an alternative approach. Through an understanding of individuals as social beings with obligations to others, and of home health care as a public good, Parks explains how to develop the social benefits of good home health care and increase the role of government in providing financial support and regulatory oversight.
A Practical Handbook
There are few things requiring more expertise, delicacy, and compassion than caring for an infant, child, or young adult with a life-limiting condition. Written by leading researchers, clinicians from relevant disciplines, family members, and advocates, this practical guide provides professionals involved in pediatric palliative and end-of-life care with comprehensive information in a single volume. Thoroughly updated and expanded, this edition includes chapters addressing the unique challenges facing children with HIV / AIDS and their families, care in home and ICU settings, difficult decision-making processes, and the importance of communication with the child and family as well as completely new chapters on spiritual dimensions of care and educational and advocacy initiatives. Intended for primary care physicians, pediatric practitioners and specialists, home care and hospice personnel, pastoral counselors, and affected families, the book includes useful resource and reference material and practical, hands-on tips. With contributions from an international group of expert educators, clinicians, and parents, this book takes a truly interdisciplinary approach to pediatric palliative care, presenting best practices, clear instruction, and the latest information and research for anyone involved in pediatric palliative and end-of-life care. Praise for the first edition "An inspiring and accessible look at what end-of-life care for children should be—it is a text that should grace the shelf of every clinician facing the death of young patients."—Journal of the American Academy of Child and Adolescent Psychiatry "A great resource and learning tool . . . well written, well organized, very practical, and user friendly as a reference for all disciplines involved with palliative care."—American Academy of Pediatrics Newsletter "This book is rich with palliative care experts’ knowledge as well as humbling experiences of children and their families undergoing the latest stages of a life-threatening illness, the dying process, the death, and finally bereavement. Every chapter is written with a high degree of expertise and the authors’ compassion is ever present."—Journal of Palliative Medicine
Perspectives from Philosophy, Ethics, and Neuroscience
This book brings together some of the best minds in neurology and philosophy to discuss the concept of personal identity and the moral dimensions of treating brain disease and injury. The contributors engage a crucial question: When an individual’s personality changes radically because of disease or injury, should this changed individual be treated as the same person? Rapid advances in brain science are expanding knowledge of human memory, emotion, and cognition and pointing the way toward new approaches for the prevention and treatment of devastating illnesses and disabilities. Through case studies of Alzheimer disease, frontotemporal dementia, deep brain stimulation, and steroid psychosis, the contributors highlight relevant ethical and social concerns that clinicians, researchers, and ethicists are likely to encounter. Personal Identity and Fractured Selves represents the first formal collaboration between the Brain Sciences Institute and the Berman Institute of Bioethics, both at the Johns Hopkins University. The book asks neuroscientists and philosophers to address important questions on the topic of personal identity in an effort to engage both fields in fruitful conversation. Contributors: Samuel Barondes, M.D., University of California, San Francisco; David M. Blass, M.D., Johns Hopkins University School of Medicine; Patrick Duggan, A.B., Johns Hopkins Berman Institute of Bioethics; Ruth R. Faden, Ph.D., M.P.H., Johns Hopkins Berman Institute of Bioethics; Michael S. Gazzaniga, Ph.D., University of California, Santa Barbara; Guy M. McKhann, M.D., Johns Hopkins University School of Medicine; John Perry, Ph.D., Stanford University; Carol Rovane, Ph.D., Columbia University; Alan Regenberg, M.Be., Johns Hopkins Berman Institute of Bioethics; Marya Schechtman, Ph.D., University of Illinois at Chicago; Maura Tumulty, Ph.D., Colgate University
In this riveting and timely work, John P. Lizza presents the first comprehensive analysis of personhood and humanity in the context of defining death. Rejecting the common assumption that human or personal death is simply a biological phenomenon for biologists or physicians to define, Lizza argues that the definition of death is also a matter for metaphysical reflection, moral choice, and cultural acceptance. Lizza maintains that defining death remains problematic because basic ontological, ethical, and cultural issues have never been adequately addressed. Advances in life-sustaining technology and organ transplantation have led to revision of the legal definition of death. It is generally accepted that death occurs when all functions of the brain have ceased. However, legal and clinical cases involving postmortem pregnancy, individuals in permanent vegetative state, those with anencephaly, and those with severe dementia challenge the neurological criteria. Is "brain death" really death? Should the neurological criteria be expanded to include individuals in permanent vegetative state, with anencephaly, and those with severe dementia? What metaphysical, ethical, and cultural considerations are relevant to answering such questions? Although Lizza accepts a pluralistic approach to the legal definition of death, he proposes a nonreductive, substantive view in which persons are understood as "constituted by" human organisms. This view, he argues, provides the best account of human nature as biological, moral, and cultural and supports a consciousness-related formulation of death. Through an analysis of legal and clinical cases and a discussion of alternative concepts of personhood, Lizza casts greater light on the underlying themes of a complex debate.
Women, Precancer, and Prophylactic Surgery
Modern scientific tools can identify a genetic predisposition to cancer before any disease is detectable. Some women will never develop breast or ovarian cancer, but they nevertheless must decide, as a result of genetic testing, whether to have their breasts and ovaries removed to avoid the possibility of disease. The striking contrast between the sophistication of diagnosis and the crudeness of preventive surgery forms the basis of historian Ilana Löwy’s important study. Löwy traces the history of prophylactic amputations through a century of preventive treatment and back to a long tradition of surgical management of gynecological problems. In the early twentieth century, surgeons came to believe that removing precancerous lesions—a term difficult to define even today—averted the danger of malignancy. This practice, Löwy finds, later led to surgical interventions for women with a hereditary predisposition to cancer but no detectable disease. Richly detailed stories of patients and surgeons in the United States, France, and the United Kingdom allow Löwy to compare the evolution of medical thought and practice—and personal choice—in these different cultures. Preventive Strikes aims to improve our understanding of professional, social, and cultural responses to cancer in the twenty-first century and to inform our reflections about how values are incorporated into routine medical practices.
Individualism and Society in the Era of Biomedical Enhancement
Few would question the necessity of artificial limbs for amputees. But what of surgery to lengthen the legs of children who are merely shorter than average? Hardly anyone would challenge the decision to prescribe Aricept to people with dementia. But is it acceptable to give the same medication to airline pilots seeking sharper mental focus on long-haul flights? Humans have engaged in biological self-improvement since long before recorded history, from the impotence-curing wild lotus brew of the ancient Egyptians to the herbal energy drink favored by early Olympians. Now biomedical enhancements are pushing the boundaries of possibility and acceptability. Where do we draw the line? How do we know the true ramifications of pioneering medicine? What price are we willing to pay for perfection? Maxwell J. Mehlman’s provocative examination of these issues speaks to fundamental questions of what it means to be human. He finds public officials ill-equipped to handle the ethical, scientific, and public policy quandaries of biomedical enhancement. Instead of engaging difficult questions of morality, access, fairness, and freedom, elected officials have crafted toothless and counterproductive laws and regulations. Mehlman outlines policy options to boost the societal benefits and minimize the risks from these technologies. In the process, he urges the public to face the ethical issues surrounding biomedical enhancement, lest our quest for perfection compromise our very humanity.
Ethical Standards and the Marketing of Prescription Drugs
The pharmaceutical industry has come under intense criticism in recent years. One poll found that 70% of the sample agreed that drug companies put profits ahead of people. Is this perception accurate? Have drug companies traded ethics for profits and placed people at risk?
In Profits before People? Leonard J. Weber exposes pharmaceutical industry practices that have raised ethical concerns. Providing systematic ethical analysis and reflection, he discusses such practices as compensating physicians for serving as speakers or consultants, providing incentives to physicians to enroll patients as subjects in clinical research, and advertising prescription drugs to the public through the mass media. Weber's critique of the industry is stern. While acknowledging that new industry guidelines are promising, he finds much room for improvement in the way drug companies market their products. Yet Weber makes a strong case that profits and ethics can coexist and that they are not mutually exclusive.
In an effort to understand the proper place of commerce in disseminating information about new drugs, the book aims to clarify basic responsibilities and to help identify sound ethical practices. It recognizes that ethics and law are not the same, that "having a right" is different from "doing the right thing," and that taking ethics seriously means recognizing that the law does not answer all questions about what is right. Weber points the way to more demanding standards and better practices that might begin to restore confidence in the drug industry.