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A Century of Eugenics in America

From the Indiana Experiment to the Human Genome Era

Edited by Paul A. Lombardo

In 1907, Indiana passed the world's first involuntary sterilization law based on the theory of eugenics. In time, more than 30 states and a dozen foreign countries followed suit. Although the Indiana statute was later declared unconstitutional, other laws restricting immigration and regulating marriage on "eugenic" grounds were still in effect in the U.S. as late as the 1970s. A Century of Eugenics in America assesses the history of eugenics in the United States and its status in the age of the Human Genome Project. The essays explore the early support of compulsory sterilization by doctors and legislators; the implementation of eugenic schemes in Indiana, Georgia, California, Minnesota, North Carolina, and Alabama; the legal and social challenges to sterilization; and the prospects for a eugenics movement basing its claims on modern genetic science.

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Child Health in America

Making a Difference through Advocacy

Judith S. Palfrey, M.D.

Who will speak for the children? is the question posed by Judith S. Palfrey, a pediatrician and child advocate who confronts unconscionable disparities in U.S. health care—a system that persistently fails sick and disabled children despite annual expenditures of $1.8 trillion. In Child Health in America, Palfrey explores the meaning of advocacy to children's health and describes how health providers, community agencies, teachers, parents, and others can work together to bring about needed change. Palfrey presents a conceptual framework for child health advocacy consisting of four interconnected components: clinical, group, professional, and legislative. Describing each of these concepts in useful and compelling detail, she is also careful to provide examples of best practices. This original and progressive work affirms the urgent need for child advocacy and provides valuable guidance to those seeking to participate in efforts to help all children live healthier, happier lives.

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Children, Ethics, and Modern Medicine

Richard B. Miller

"Because the discipline of medical ethics has developed with autonomy as its foundation, the field has ignored pediatric ethics. The book is resoundingly successful in its effort to rectify this problem.... [A] pleasure to read." -- Eric D. Kodish, M.D., Director, Rainbow Center for Pediatric Ethics, Case Western Reserve University

Using a form of medical ethnography to investigate a variety of pediatric contexts, Richard B. Miller tests the fit of different ethical approaches in various medical settings to arrive at a new paradigm for how best to care for children. Miller contends that the principle of beneficence must take priority over autonomy in the treatment of children. Yet what is best for the child is a decision that doctors cannot make alone. In making and implementing such decisions, Miller argues, doctors must become part of a "therapeutic alliance" with families and the child undergoing medical care to come up with the best solution.

Children, Ethics, and Modern Medicine combines strong philosophical argumentation with firsthand knowledge of the issues facing children and families in pediatric care. This book will be an invaluable asset to medical ethicists and practitioners in pediatric care, as well as parents struggling with ethical issues in the care of their children.

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Chimeras, Hybrids, and Interspecies Research

Politics and Policymaking

In his 2006 State of the Union speech, President George W. Bush asked the U.S. Congress to prohibit the most egregious abuses of medical research, such as the creation of animalûhuman hybrids. The president's message echoed that of a 2004 report by the Pr

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Cochlear Implants

Evolving Perspectives

Raylene Paludneviciene and Irene W. Leigh, Editors

The cochlear implant debate has changed, as evidenced in this cogent collection that presents 13 chapters by 20 experts, including several who communicate through sign language but also utilize cochlear implants. The impetus for this change stems from recognition that both visual and aural input can enhance the education of deaf children. Divided into four sections, Cochlear Implants: Evolving Perspectives first focuses on the impact of implants in the Deaf community. Chapters in this section examine the issues driving the cochlear implant debate, the ethics of genetic engineering, experiences of implanted adult deaf signers, reflections of deaf mothers who have had their children implanted, and the effects of implants on deaf identity. The second section delves into the mechanics of bimodal processing, including listening strategies that can benefit signing children with cochlear implants. The third section surveys combined aural/visual educational approaches, such as teaching implanted children in an ASL/English bilingual classroom, and applying auditory rehabilitation to a signed communication context. The final section challenges readers to reframe the debate first by exploring sensory politics, then by envisioning an emerging world that requires the Deaf community to connect with it to secure its future. With this information, readers will reach their own conclusions about cochlear implants and auditory and visual approaches to the mastery of both spoken and signed languages.

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Cochlear Implants in Children

Ethics and Choices

John B. Christiansen and Irene W. Leigh, Editors

Cochlear Implants in Children: Ethics and Choices addresses every facet of the ongoing controversy about implanting cochlear hearing devices in children as young as 12 months old and in some cases, younger. Authors John B. Christiansen and Irene W. Leigh and contributors Jay Lucker and Patricia Elizabeth Spencer analyzed the sensitive issues connected with the procedure by reviewing 439 responses to a survey of parents with children who have cochlear implants. They followed up with interviews of the parents of children who have had a year's experience using their implants, and also the children themselves. Their findings shape the core of this useful and telling study. Cochlear Implants begins with a history of their development and an explanation of how implants convert sound into electric impulses that stimulate the brain. The second section focuses on pediatric implants, starting with the ways parents coped with the discovery that their child was deaf. Parents share how they learned about cochlear implants and how they chose an implant center. They also detail their children's experiences with the implants after surgery, and their progress with language acquisition and in school. The final part treats the controversy associated with cochlear implants, particularly the reaction of the Deaf community and the ethics of implanting young children without their consent. Cochlear Implants concludes with sage observations and recommendations for parents and professionals that complete it as the essential book on the pros and cons of this burgeoning technology.

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The Company Doctor

Risk, Responsibility, and Corporate Professionalism

To limit the skyrocketing costs of their employees' health insurance, companies such as Dow, Chevron, and IBM, as well as many large HMOs, have increasingly hired physicians to supervise the medical care they provide. As Elaine Draper argues in The Company Doctor, company doctors are bound by two conflicting ideals: serving the medical needs of their patients while protecting the company's bottom line. Draper analyzes the advent of the corporate physician both as an independent phenomenon, and as an index of contemporary culture, reaching startling conclusions about the intersection of corporate culture with professional autonomy.

Drawing on over 100 interviews with company physicians, scientists, and government and labor officials, as well as historical, legal, and statistical sources and medical trade association data, Draper presents an illuminating overview of the social context and meaning of professional work in corporations. Draper finds that while medical journals, speeches, and ethical codes proclaim the independent professional judgment of corporate physicians, the company doctors she interviewed often expressed anguish over the tightrope they must walk between their patients' health and the corporate oversight they face at every turn. Draper dissects the complex position occupied by company doctors to explore broad themes of doctor-patient trust, employee loyalty, privacy issues, and the future direction of medicine. She addresses such controversial topics as drug screening and the difficult position of company doctors when employees sue companies for health hazards in the workplace.

Company doctors are but one example of professionals who have at times ceded their autonomy to corporate management. Physicians provide the prototypical professional case for exploring this phenomenon, due to their traditional independence, extensive training, and high levels of prestige. But Draper expands the scope of the book—tracing parallel developments in the law, science, and technology—to draw insightful conclusions about changing conditions in the professional workplace, as corporate cultures everywhere adapt to the new realities of the global economy. The Company Doctor provides a compelling examination of the corporatization of American medicine with far-reaching implications for professionals in many other fields.

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Competence to Consent

Becky Cox White

Free and informed consent is one of the most widespread and morally important practices of modern health care; competence to consent is its cornerstone. In this book, Becky Cox White provides a concise introduction to the key practical, philosophical, and moral issues involved in competence to consent.

The goals of informed consent, respect for patient autonomy and provision of beneficent care, cannot be met without a competent patient. Thus determining a patient's competence is the critical first step to informed consent. Determining competence depends on defining it, yet surprisingly, no widely accepted definition of competence exists. White identifies nine capacities that patients must exhibit to be competent. She approaches the problem from the task-oriented nature of decision making and focuses on the problems of defining competence within clinical practice. Her proposed definition is based on understanding competence as occurring in a special rather than a general context; as occurring in degrees rather than at a precise threshold; as independent of consequential appeals; and as incorporating affective as well as cognitive capacities.

Combining both an ethical overview and practical guidelines, this book will be of value to health care professionals, bioethicists, and lawyers.

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Controversial Bodies

Thoughts on the Public Display of Plastinated Corpses

edited by John D. Lantos, M.D.

Controversial, fascinating, disturbing, and often beautiful, plastinated human bodies—such as those found at Body Worlds exhibitions throughout the world—have gripped the public's imagination. These displays have been lauded as educational, sparked protests, and drawn millions of visitors. This book looks at the powerful sway these corpses hold over their living audiences everywhere. Plastination was invented in the 1970s by German anatomist Gunther von Hagens. The process transforms living tissues into moldable plastic that can then be hardened into a permanent shape. Von Hagens first exhibited his expertly dissected, artfully posed plastinated bodies in Japan in 1995. Since then, his shows have continuously attracted so many paying customers that they have inspired imitators, brought accusations of unethical or even illegal behavior, and ignited vigorous debates among scientists, educators, religious leaders, and law enforcement officials. These lively, thought-provoking, and sometimes personal essays reflect on such public displays from ethical, legal, cultural, religious, pedagogical, and aesthetic perspectives. They examine what lies behind the exhibitions' popularity and explore the ramifications of turning corpses into a spectacle of amusement. Contributions from bioethicists, historians, physicians, anatomists, theologians, and novelists dig deeply into issues that compel, upset, and unsettle us all.

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Cytomegalovirus

A Hospitalization Diary

Hervé Guibert, Introduction by David Caron, Afterword by Todd Meyers, Translated by Clara Orban

By the time of his death, Hervé Guibert had become a singular literary voice on the impact of AIDS in France. He was prolific. His oeuvre contained some twenty novels, including To the Friend Who Did Not Save My Life and The Compassion Protocol. He was 36 years old. In Cytomegalovirus, Guibert offers an autobiographical narrative of the everyday moments of his hospitalization due to complications of AIDS. Cytomegalovirus is spare, biting, and anguished. Guibert writes through the minutiae of living and of death––as a quality of invention, of melancholy, of small victories in the face of greater threats––at the moment when his sight (and life) is eclipsed. This new edition includes an introduction and afterword contextualizing Guibert’s work within the history of the AIDS pandemic, its relevance in the contemporary moment, and the importance of understanding the quotidian aspects of terminal illness.

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