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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.
Christian Hope in an Age of Technological Enhancement
The timeless human desire to be more beautiful, intelligent, healthy, athletic, or young has given rise in our time to technologies of human enhancement. Athletes use drugs to increase their strength or stamina; cosmetic surgery is widely used to improve physical appearance; millions of men take drugs like Viagra to enhance sexual performance. And today researchers are exploring technologies such as cell regeneration and implantable devices that interact directly with the brain. Some condemn these developments as a new kind of cheating—not just in sports but in life itself—promising rewards without effort and depriving us most of all of what it means to be authentic human beings. “Transhumanists,” on the other hand, reject what they see as a rationalizing of human limits, as if being human means being content forever with underachieving bodies and brains. To be human, they insist, is to be restless with possibilities, always eager to transcend biological limits.
As the debate grows in urgency, how should theology respond? Christian theologians recognize truth on both sides of the argument, pointing out how the yearnings of the transhumanists—if not their technological methods—find deep affinities in Christian belief. In this volume, Ronald Cole-Turner has joined seasoned scholars and younger, emerging voices together to bring fresh insight into the technologies that are already reshaping the future of Christian life and hope.
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.
In Search of a Peaceful Death
Drawing on his own experience, and on literature, philosophy, and medicine, Daniel Callahan offers great insight into how to deal with the rewards of modern medicine without upsetting our perception of death. He examines how we view death and the care of the critically ill or dying, and he suggests ways of understanding death that can lead to a peaceful acceptance. Callahan's thoughtful perspective notably enhances the legal and moral discussions about end-of-life issues.
Originally published in 1993 by Simon and Schuster.
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.