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Genetic research increasingly dominates medical thought and practice in the United States and in many other industrialized nations. Susan Lindee's original study explores the institutions, disciplines, and ideas that initiated the reconfiguration of genetic medicine from a marginal field in the mid-1950s to a core research frontier of biomedicine. Tracing the work of geneticists and other experts in identifying and classifying disease during the explosive period between 1950 and 1980, Lindee identifies the individual "moments of truth" that moved the field away from its eugenic past to the center of a new world view in which nearly all disease is understood to be fundamentally genetic. She suggests that these moments of truth were experienced not only by scientists but also by those who had familial, intimate, emotional knowledge of hereditary disease: patients, family members, and research subjects. Focusing on benchmarks in the field—such as the rise of neonatal testing in the 1960s, genetic studies of unique human populations such as the Amish, the development of human cytogenetics and human behavioral genetics, and the efforts to find genes for rare diseases such as familial dysautonomia—she tracks the emergence of a biomedical consensus that nearly all disease is genetic disease. Using the success of this field as a point of entry, Lindee chronicles both the production of knowledge in biomedicine and changes in the cultural meaning of the body in the late twentieth century. She suggests that scientific knowledge is a community project that is shaped directly by people in many different social and professional locations. The power to experience and report scientific truth may be much more dispersed than it sometimes appears, because people know things about their own bodies, and their knowledge has often been incorporated into the technical infrastructure of genomic medicine. Lindee's pathbreaking study shows the interdependence of technical and social parameters in contemporary biomedicine.
Ethical Issues from Diagnosis to Dying
Society today, writes Stephen Post, is "hypercognitive": it places inordinate emphasis on people's powers of rational thinking and memory. Thus, Alzheimer disease and other dementias, which over an extended period incrementally rob patients of exactly those functions, raise many dilemmas. How are we to view—and value—persons deprived of what some consider the most important human capacities? In the second edition of The Moral Challenge of Alzheimer Disease, Post updates his highly praised account of the major ethical issues relating to dementia care. With chapters organized to follow the progression from mild to severe and then terminal stages of dementia, Post discusses topics including the experience of dementia, family caregiving, genetic testing for Alzheimer disease, quality of life, and assisted suicide and euthanasia. New to this edition are sections dealing with end-of-life issues (especially artificial nutrition and hydration), the emerging cognitive-enhancing drugs, distributive justice, spirituality, and hospice, as well as a critique of rationalistic definitions of personhood. The last chapter is a new summary of practical solutions useful to family members and professionals.
Truth and Lies in the Age of AIDS
In the era of the Internet and Oprah, in which formerly taboo information is readily available or freely confided, secrecy and privacy have in many ways given way to an onslaught of confession. Yet for those who are HIV positive, decisions about disclosure of their diagnosis force them to confront intimate, fundamental, and rarely discussed questions about truth, lies, sex, and trust. Drawing from interviews with over seventy gay men and women, intravenous drug users, sex workers, bisexual men, and heterosexual men and women, the authors provide a detailed portrait of moral, social, and psychological decision making. The interviews convey the complex emotions of love, lust, longing, hope, despair, and fear that shape individual dilemmas about whether to disclose to, deceive, or trust others concerning this disease. Some of those interviewed revealed their diagnosis widely; others told no one. Some struggled and ultimately told their partners; others spoke in codes or half-truths. One woman discovered her husband's diagnosis in a diary; when confronted, he denied it. Each year in the United States, 40,000 new cases of HIV arise, yet approximately one-third of the 900,000 Americans who are infected do not know it. As treatments have improved, unsafe sexual behavior has increased and efforts at prevention have stalled. Many of those infected continue to fear and experience rejection and discrimination. Addressing broad debates about the nature of secrecy, morality, and silence, this book explores public policy questions in the light of the nuanced, private decisions that are shaping the course of an epidemic and have broader indications for all.
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