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Law, Policy, and Ethical Issues
From the cloning of Dolly the sheep a decade ago to more recent advances in embryonic stem cell research, new genetic technologies have often spurred polemical, ill-informed debates. Perhaps nowhere is this more evident than in the field of reproductive genetics, where difficult bioethical issues are distilled into sound bites and far-fetched claims for easy public consumption. The underlying complexities of reprogenetic research and practice are often drowned out by the noise. In this thoughtful and informed collection, Lori P. Knowles and Gregory E. Kaebnick bring together bioethicists from the United States, Canada, and the United Kingdom to examine the ethical and policy quandaries created by new genetic technologies. Featuring an overview of the field’s history (including lessons to be learned from eugenics), comparisons of international and domestic governmental regulations, and discussions of how the market and public opinion affect research, this book considers both the risks and the benefits of combining genetic and reproductive technologies. Concluding with a cautionary call for increased regulation, Reprogenetics introduces fact, history, and reason into a public discussion of complex and vexing issues.
Beyond the Bad-Apple Approach
Public Policy, Biotechnology, and the Kass Council
Several presidents have created bioethics councils to advise their administrations on the importance, meaning and possible implementation or regulation of rapidly developing biomedical technologies. From 2001 to 2005, the President's Council on Bioethics, created by President George W. Bush, was under the leadership of Leon Kass. The Kass Council, as it was known, undertook what Adam Briggle describes as a more rich understanding of its task than that of previous councils. The council sought to understand what it means to advance human flourishing at the intersection of philosophy, politics, science, and technology within a democratic society. Briggle's survey of the history of U.S. public bioethics and advisory bioethics commissions, followed by an analysis of what constitutes a “rich” bioethics, forms the first part of the book. The second part treats the Kass Council as a case study of a federal institution that offered public, ethical advice within a highly polarized context, with the attendant charges of inappropriate politicization and policy irrelevance. The conclusion synthesizes the author's findings into a story about the possible relationships between philosophy and policy making. A Rich Bioethics: Public Policy, Biotechnology, and the Kass Council will attract students and scholars in bioethics and the fields of science, technology, and society, as well as those interested in the ethical and political dilemmas raised by modern science.
Heated debates are not unusual when confronting tough medical issues where it seems that moral and religious perspectives often erupt in conflict with philosophical or political positions. In The Sanctity of Human Life, Jewish theologian David Novak acknowledges that it is impossible not to take into account the theological view of human life, but the challenge is how to present the religious perspective to nonreligious people. In doing so, he shows that the two positions—the theological and the philosophical—aren't as far apart as they may seem. Novak digs deep into Jewish scripture and tradition to find guidance for assessing three contemporary controversies in medicine and public policy: the use of embryos to derive stem cells for research, socialized medicine, and physician-assisted suicide. Beginning with thinkers like Plato, Aristotle, Kant, and Nietsche, and drawing on great Jewish figures in history—Maimonides, Rashi, and various commentators on the Torah (written law) and the Mishnah (oral law)—Novak speaks brilliantly to these modern moral dilemmas. The Sanctity of Human Life weaves a rich and sophisticated tapestry of evidence to conclude that the Jewish understanding of the human being as sacred, as the image of God, is in fact compatible with philosophical claims about the rights of the human person—especially the right to life—and can be made intelligible to secular culture. Thus, according to Novak, the use of stem cells from embryos is morally unacceptable; the sanctity of the human person, and not capitalist or socialist approaches, should drive our understanding of national health care; and physician-assisted suicide violates humankind's fundamental responsibility for caring for one another. Novak's erudite argument and rigorous scholarship will appeal to all scholars and students engaged in the work of theology and bioethics.
Rhetoric, Politics, and Trust in Breast Cancer Research
How Science Is Solving Modern Medicine's Most Perplexing Problem
Once the stuff of science fiction, neural prosthetics are now a reality. Research and technology are creating implants that enable the deaf to hear, the blind to see, and the paralyzed to move. Shattered Nerves takes us on a journey into a new medical frontier, where sophisticated, state-of-the-art medical devices repair and restore failed sensory and motor systems. In a compelling narrative that reveals the intimate relationship between technology and the physicians, scientists, and patients who bring it to life, Victor D. Chase explores groundbreaking developments in neural technology. Through personal interviews and extensive research, Chase introduces us to the people and devices that are restoring shattered lives, from implants that enable the paralyzed to stand, walk, feed, and groom themselves, to those that restore bladder and bowel control, and even sexual function. Signals from the brains of paralyzed people are captured and transformed to allow them to operate computers. Brain implants hold the potential to resolve psychiatric illnesses and to restore the ability to form memories in damaged brains. This timely and important book also explores troubling boundaries between restoration and enhancement, where implants could conceivably endow the able-bodied with superhuman capabilities. Chase concludes this fascinating book with a provocative question: Just because we can, does that mean we should?
Spiritual Perspectives and Clinical Practice
To what extent should spiritual information be part of patients’ medical assessments? How should physicians respond when patients refuse life-saving care on religious grounds? Should doctors pray with their patients? Questions such as these raise deeper ones about the goals of medicine and the nature of healing. In a set of engaging and candid essays, The Soul of Medicine explores the role and influence of spirituality in clinical practice, professionalism, and medical education. The contributors to this volume approach this topic from their own spiritual perspectives—Jewish, Christian, Muslim, Buddhist, Hindu, New Age/Eclectic, secular, Jehovah’s Witnesses, and Christian Scientist. Their thought-provoking essays produce rich insights not only into the needs of patients who share these same world views but also into how spirituality influences the practice of medicine. When their own spiritual issues arise in medical practice, physicians rely on their professionalism, ethics, and education. To better understand how various world views are incorporated into clinical work, doctors must ask themselves—as these contributors have—a series of important questions: What insights about life and healing does your faith provide? How does it challenge or reinforce contemporary medicine? How do you assess and address spirituality in clinical practice? How do your own beliefs influence your interactions with patients? The Soul of Medicine encourages medical students and practitioners to recognize the spiritual dimensions of medicine, to consider how these dimensions inform their own education and practice, and to be compassionate about their patients’—and their own—religious beliefs.
Framing Personhood in Modern Bureaucracies
How and why has the concept of responsibility come to pervade the fabric of American public and private life? How are ideas of responsibility instantiated in, and constituted by, the workings of social and political institutions? What place do liberal discourses of responsibility, based on the individual, have in today's biopolitical world, where responsibility is so often a matter of risk assessment, founded in statistical probabilities? Bringing together the work of scholars in anthropology, law, literary studies, philosophy, and political theory, the essays in this volume show how state and private bureaucracies play crucial roles in fashioning forms of responsibility, which they then enjoin on populations. How do government and market constitute subjects of responsibility in a culture so enamored of individuality? In what ways can those entities-centrally, in modern culture, those engaged in insuring individuals against loss or harm-themselves be held responsible, and by whom? What kinds of subjectivities are created in this process? Can such subjects be said to be truly responsible, and in what sense?
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.