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Technology, Ethics, and the Pursuit of Normality
At a time when medical technologies make it ever easier to enhance our minds and bodies, a debate has arisen about whether such efforts promote a process of "normalization," which makes it ever harder to tolerate the natural anatomical differences among us. The debate becomes especially complicated when it addresses the surgical alteration, or "shaping," of children. This volume explores the ethical and social issues raised by the recent proliferation of surgeries designed to make children born with physical differences look more normal. Using three cases—surgeries to eliminate craniofacial abnormalities such as cleft lip and palate, surgeries to correct ambiguous genitalia, and surgeries to lengthen the limbs of children born with dwarfism—the contributors consider the tensions parents experience when making such life-altering decisions on behalf of or with their children. The essays in this volume offer in-depth examinations of the significance and limits of surgical alteration through personal narratives, theoretical reflections, and concrete suggestions about how to improve the decision-making process. Written from the perspectives of affected children and their parents, health care providers, and leading scholars in philosophy, sociology, history, law, and medicine, this collection provides an integrated and comprehensive foundation from which to consider a complex and controversial issue. It takes the reader on a journey from reflections on the particulars of current medical practices to reflections on one of the deepest and most complex of human desires: the desire for normality. Contributors Priscilla Alderson, Adrienne Asch, Cassandra Aspinall, Alice Domurat Dreger, James C. Edwards, Todd C. Edwards, Ellen K. Feder, Arthur W. Frank, Lisa Abelow Hedley, Eva Fedder Kittay, Hilde Lindemann, Jeffery L. Marsh, Paul Steven Miller, Sherri G. Morris, Wendy E. Mouradian, Donald L. Patrick, Nichola Rumsey, Emily Sullivan Sanford, Tari D. Topolski
A Guide for Education and Practice
More than a million patient safety incidents occur every year, and medical error is the third leading cause of death in the United States. Illuminating the experiences of those affected by medical error—patients, their loved ones, and physicians and other medical professionals—Talking with Patients and Families about Medical Error delves deeply into the challenges of communicating honestly and openly about mistakes in medical practice. Based on guidelines from the Institute for Professional and Ethical Practice and the authors' own experiences, the practice-based approaches outlined here offer concrete guidance on • initiating discussions • dealing professionally and compassionately with patients' reactions • who should be included in the conversation • what information should be documented in the medical record • how to respond to questions about financial compensation Aimed at promoting resolution and healing, this book stresses the importance of clear, empathetic communication that will improve clinical and organizational responses to medical missteps and mismanagement. It emphasizes five features of the physician-patient relationship deserving of special attention: transparency, respect, accountability, continuity, and kindness (TRACK). Narrative examples of common situations demonstrate how conversations about medical error can lead to healing.
Cases and Movies
Organ transplantation allows modern surgeons to give "new life" to chronically ill patients. At the same time, the new opportunities raise ethical questions concerning human identity and the definition of the human body. These concerns do not play out the same in all cultures or in every situation. This collection of 30 case studies illustrates the range of global and local, ethical, social, and cultural problems associated with organ transplantation. The collection also provides a list of popular movies and websites to aid instructors and their students. This work is aimed at educators in medicine, health care, philosophy, and religious studies.
Eugenics, the Supreme Court, and Buck v. Bell
“Three generations of imbeciles are enough.” Few lines from Supreme Court opinions are as memorable as this declaration by Justice Oliver Wendell Holmes Jr. in the landmark 1927 case Buck v. Bell. The ruling allowed states to forcibly sterilize residents in order to prevent “feebleminded and socially inadequate” people from having children. It is the only time the Supreme Court endorsed surgery as a tool of government policy. Paul Lombardo’s startling narrative exposes the Buck case’s fraudulent roots. In 1924 Carrie Buck—involuntarily institutionalized by the State of Virginia after she was raped and impregnated—challenged the state’s plan to sterilize her. Having already judged her mother and daughter mentally deficient, Virginia wanted to make Buck the first person sterilized under a new law designed to prevent hereditarily “defective” people from reproducing. Lombardo’s more than twenty-five years of research and his own interview with Buck before she died demonstrate conclusively that she was destined to lose the case before it had even begun. Neither Carrie Buck nor her mother and daughter were the "imbeciles" condemned in the Holmes opinion. Her lawyer—a founder of the institution where she was held—never challenged Virginia’s arguments and called no witnesses on Buck’s behalf. And judges who heard her case, from state courts up to the U.S. Supreme Court, sympathized with the eugenics movement. Virginia had Carrie Buck sterilized shortly after the 1927 decision. Though Buck set the stage for more than sixty thousand involuntary sterilizations in the United States and was cited at the Nuremberg trials in defense of Nazi sterilization experiments, it has never been overturned. Three Generations, No Imbeciles tracks the notorious case through its history, revealing that it remains a potent symbol of government control of reproduction and a troubling precedent for the human genome era.
The HPV Vaccine and the Politics of Medicine's Simple Solutions
In 2007, Texas governor Rick Perry issued an executive order requiring that all females entering sixth grade be vaccinated against the human papillomavirus (HPV), igniting national debate that echoed arguments heard across the globe over public policy, sexual health, and the politics of vaccination. Three Shots at Prevention explores the contentious disputes surrounding the controversial vaccine intended to protect against HPV, the most common sexually transmitted infection. When the HPV vaccine first came to the market in 2006, religious conservatives decried the government's approval of the vaccine as implicitly sanctioning teen sex and encouraging promiscuity while advocates applauded its potential to prevent 4,000 cervical cancer deaths in the United States each year. Families worried that laws requiring vaccination reached too far into their private lives. Public health officials wrestled with concerns over whether the drug was too new to be required and whether opposition to it could endanger support for other, widely accepted vaccinations. Many people questioned the aggressive marketing campaigns of the vaccine's creator, Merck & Co. And, since HPV causes cancers of the cervix, vulva, vagina, penis, and anus, why was the vaccine recommended only for females? What did this reveal about gender and sexual politics in the United States? With hundreds of thousands of HPV-related cancer deaths worldwide, how did similar national debates in Europe and the developing world shape the global possibilities of cancer prevention? This volume provides insight into the deep moral, ethical, and scientific questions that must be addressed when sexual and social politics confront public health initiatives in the United States and around the world.
The Promise and Peril of Genetic Engineering
Transhumanists advocate for the development and distribution of technologies that will enhance human intellectual, physical, and psychological capacities, even eliminate aging. What if the dystopian futures and transhumanist utopias found in the pages of science journals, Margaret Atwood novels, films like Gattaca, and television shows like Dark Angel are realized? What kind of world would humans have created? Maxwell J. Mehlman considers the promises and perils of using genetic engineering in an effort to direct the future course of human evolution. He addresses scientific and ethical issues without choosing sides in the dispute between transhumanists and their challengers. However, Transhumanist Dreams and Dystopian Nightmares reveals that radical forms of genetic engineering could become a reality much sooner than many people think, and that we need to encourage risk management efforts. Whether scientists are dubious or optimistic about the prospects for directed evolution, they tend to agree on two things. First, however long it takes to perfect the necessary technology, it is inevitable that humans will attempt to control their evolutionary future, and second, in the process of learning how to direct evolution, we are bound to make mistakes. Our responsibility is to learn how to balance innovation with caution.
A Virtue Approach to Craniotomy and Tubal Pregnancies
Doctors’ Constraints in Abortion Care
Willing and Unable explores the social world where abortion politics and mainstream medicine collide. The author interviewed physicians of obstetrics and gynecology around the United States to find out why physicians rarely integrate abortion into their medical practice. While abortion stigma, violence, and political contention provide some explanation, her findings demonstrate that willing physicians are further encumbered by a variety of barriers within their practice environments. Structural barriers to the mainstream practice of abortion effectively institutionalize the buck-passing of abortion patients to abortion clinics. As the author notes, "Public-health-minded HMOs and physician practices could significantly change the world of abortion care if they stopped outsourcing it." Drawing from forty in-depth interviews, the book presents a challenge to a commonly held assumption that physicians decide whether or not to provide abortion based on personal ideology. Physician narratives demonstrate how their choices around learning, doing, and even having abortions themselves disrupt the pro-choice/pro-life moral and political binary.
Genetic Enhancement and the Future of Society
Wondergenes not only imagines a future world in which genetic enhancement is the norm, but asserts that this future has already begun. Genetically engineered substances are already in use by athletes, in vitro fertilization already provides the primitive means by which parents can "select" an embryo, and the ability to create new forms of genetically engineered human beings is not far off. What happens when gene therapy becomes gene enhancement? Who will benefit and who might be left behind? What are the costs to our values and beliefs, and to the future of our society? To answer these questions, Maxwell J. Mehlman provides an overview of the scientific advances that have led to the present state of genetic enhancement and explains how these advances will be used in the future to redefine what we think of as a normal human being. He explores the ethical dilemmas already facing researchers and medical practitioners, and the dilemmas we will all be expected to face. In his forecast of the dangers inherent in this technology, he is particularly concerned with the emergence of a "genobility" made up of those able to afford increasingly expensive enhancement.
Wondergenes is a serious, accessible introduction to the social and personal implications of genetic engineering. Mehlman weighs the social and economic costs of the many proposals to regulate or limit genetic engineering and provides six concrete policy recommendations -- from professional licensing to a ban on germ-line enhancement -- that propose to make the future of genetic enhancement more equitable and safe.
Doctors, Patients, and Futile Treatment
Too often, patients in American hospitals are subjected to painful, expensive, and futile treatments because of a physician’s notion of medical duty or a family’s demands. Lawrence J. Schneiderman and Nancy S. Jecker renew their call for common sense and realistic expectations in medicine in this revised and updated edition of Wrong Medicine. Written by a physician and a philosopher—both internationally recognized experts in medical ethics—Wrong Medicine addresses key topics that have occupied the media and the courts for the past several decades, including the wrenching Terry Schiavo case. The book combines clear descriptions of ethical principles with real clinical stories to discuss the medical, legal, and political issues that confront doctors today as they seek to provide the best medical care to critically ill patients. The authors have added two chapters that outline theoretical, legislative, judicial, and clinical developments since the first edition. Based on the latest empirical research, Wrong Medicine continues to guide a broad range of health care professionals through the challenges of providing humane end-of-life care. Critical acclaim for the first edition of Wrong Medicine "A thoughtful discussion of a difficult and pervasive bioethical problem—one made all the more critical by current concerns about limited resources. This book brings common sense to bear on one of the more intractable issues facing medical ethicists today. A useful and timely contribution."—New England Journal of Medicine "A lucid and important contribution to the field that moves us toward both a more scientific and a more humane approach to making treatment decisions at the end of life."—Health Affairs