The main question explored by the book is: How can cross-border access to human genetic resources, such as blood or DNA samples, be governed in such a way as to achieve equity for vulnerable populations in developing countries? The book situates the field of genomic and genetic research within global health and research frameworks, describing the concerns that have been raised about the potential unfairness in exchanges during recent decades. Access to and sharing in the benefits of human biological resources are aspects not regulated by any international legal framework such as the Convention on Biological Diversity, which applies only to the exchange of plants, animals and microorganisms, as well as to associated traditional knowledge. Examples of genetic research perceived as exploitative are provided in order to illustrate the legal vacuum concerning the global governance of human genetic resources. The main conclusions drawn from the legal and ethical analysis are: * Benefit sharing is crucial in order to avoid the exploitation of developing countries in human genetic research. * With functioning research ethics committees, undue inducement is less of a concern in genetic research than in other areas of medical research (e.g. clinical trials). * Concerns remain over research involving indigenous populations; accordingly, recommendations are provided. In drawing these conclusions, the book addresses in detail a highly pressing topic in global bioethics and international law. In this regard, it combines bioethical arguments with jurisprudence, in particular with reference to the law of equity and the legal concepts of duress (coercion), unconscionable dealing, and undue inducement.

This textbook provides a brief history of human experimentation and reviews various theories of ethics from which the principles and rules that govern this research are derived. All relevant international documents and national regulations, policies and memoranda are referred to extensively to assist in addressing issues that regularly arise during the course of research involving human subjects. It includes case examples and exercises and is of interest to students and experienced researchers.

With the advances of medicine, questions of medical ethics have become more urgent and are now considered of great social and political significance. An innovatively designed, activity-based workbook, this text was prepared using papers and case studies collected from several countries in the European Union. It reflects the issues and concerns that confront clinical practitioners throughout Europe and elsewhere today and presents varying national responses in law and policy to these concerns, as identified by ethicists, lawyers, theologians and practitioners. The problems they examine include the relationship between medical research and medical practice, elementary regulations of medical research, the complexity of informed consent, and the role of the sponsor or scientific community.

David M. Craig traveled across the United States to assess health care access, delivery and finance in this country. He interviewed religious hospital administrators and interfaith activists, learning how they balance the values of economic efficiency and community accountability. He met with conservatives, liberals, and moderates, reviewing their ideas for market reform or support for the Affordable Care Act. He discovered that health care in the US is not a private good or a public good. Decades of public policy and philanthropic service have made health care a shared social good.

"Health Care as a Social Good: Religious Values and the American Democracy" argues that as escalating health costs absorb more and more of family income and government budgets, we need to take stock of the full range of health care values to create a different and more affordable community-based health care system. Transformation of that system is a national priority but Americans have failed to find a way to work together that bypasses our differences. Craig insists that community engagement around the common religious conviction that healing is a shared responsibility can help us achieve this transformation -- one that will not only help us realize a new and better system, but one that reflects the ideals of American democracy and the common good.

The new reproductive technologies (NRTs) have given rise to new ethical questions that are widely debated. This book, the outcome of a European Union-wide collaborative process, draws on the experience and expertise of ethicists, lawyers, and clinical practitioners and focuses on some of the "burning issues" in different European countries. These include: donor insemination; surrogacy; preimplantation genetic diagnosis; embryo research; access to IVF treatment; and parental, professional and social responsibility. Familiar notions such as quality of life, parenthood, mothering, responsibility and personal identity surface at many points throughout the book and are refashioned to accommodate new questions. This book introduces and probes ethical questions and challenges in a hands-on way by working through relevant case studies with key commentaries and activities. It engages the reader directly in ethical reasoning and decision-making and provides clear explanations, insightful commentaries and informed debate on NRTs.

Genetic information plays an increasingly important role in ourlives. As a result of the Human Genome Project, knowledge ofthe genetic basis of various diseases is growing, withimportant consequences for the role of genetics in clinicalpractice, health care systems and for society at large. In theclinical setting genetic testing may result in a better insightinto susceptibility for inheritable diseases, not only before orafter birth, but also at later stages in life. Besides prenataltesting and pre-conceptional testing, predictive testing hasresulted in new possibilities for the early detection, treatmentand prevention of inheritable diseases. However, not all inheritable diseases that can be predicted onthe basis of genetic information can be treated or cured.Should we offer genetic tests to people for untreatablediseases? Should we test every individual who wants to knowhis or her genetic status? Should we inform family membersabout the results of genetic tests of individuals, even whenthere are no possibilities for treatment? What, in such cases,is the role of the "right-not-to-know"? Should we informfamily members when there is only an increased risk of adisease? This book deals with the ethical issues of clinicalgenetics, as well as ethical issues that arise in geneticscreening, the research of populations, and the use of geneticinformation for access to insurance and the workplace.

Increasingly globalization has meant that decisions made regarding medical care and health in one country may influence health and disease outcomes in other parts of the world. Recognizing that medical law should not be confined to national silos this handbook approaches medical law and ethics from a global perspective. Whilst respecting and analyzing national developments the chapters take a concerted international approach, looking comparatively at developments within each area. The book brings together leading scholars from both medical law and ethics backgrounds who have contributed specially commissioned pieces in order to present a critical overview and analysis of the current state of the field. The Handbook offers comprehensive coverage of longstanding and traditional topics in medical law and ethics, as well as providing dynamic insights into contemporary and emerging issues in this heavily debated field.Topics covered include: Human-animal medicine and medical research Public Health Access to resources and medicines Traditional, complementary and alternative medicines Regenerative Medicine This advanced level reference work will prove invaluable to scholars, students and researchers in the disciplines of law, medicine, dentistry, nursing, ethics and theology .

In Suffering Narratives of Older Adults, Mary Beth Quaranta Morrissey turns to the traditions of phenomenology, humanistic psychology and social work to provide an in-depth exploration of the deep structure of the suffering experience. She draws upon the notion of maternal holding to develop an original construct of maternal affordances - the ground of possibility for human development, agency and relational practices. The conceptual analysis is based on the life narratives of several elders receiving chronic care in facility environments. Creating new fields of communication for patients, their family members and health professionals in processes of reflection and shared decision making, this book builds on knowledge about suffering to help guide ethical action in preventing and relieving chronic pain and improving systems of care. It offers a phenomenological approach to understanding the maternal as a primary domain of moral experience in serious illness and suffering, and implications for policy, practice and research. A series of applied chapters, looking at individual experiences of suffering and care experiences, present critical areas of ethical inquiry, including: pain and suffering maternal relational ethics evaluation and moral deliberation about care options decision-making and moral agency end-of-life experiences of care. Exploring how an ecological relational perspective grounded in phenomenology may provide fruitful alternatives to traditional frameworks in bioethics, this is an important contribution to the ongoing development of an ecological ethic of care. It will be of interest to scholars and students of bioethics and phenomenological methods in the health and human services, as well as practitioners in the field.

Anyone who has been diagnosed with breast cancer or knows someone who has been diagnosed with breast cancer recognizes that cancer raises a host of questions concerning its nature and how we treat it. Such questions frame the difficult decisions that patients must make about their treatment and care. Thinking Through Breast Cancer is a philosophical investigation of how breast cancer is described, explained, evaluated, and socialized in medicine. Written by a breast cancer survivor, the book interweaves personal experience with a systematic breakdown of key and highly pertinent philosophical concepts, and brings to light insights that emerge in metaphysics, epistemology, ethics, social and political philosophy, and bioethics. Further, it is an investigation of the ethical implications of understanding breast cancer. Cutter seamlessly combines clinical information with philosophical analysis and makes recommendations as to how we can navigate the complex and, at times, uncertain terrain of breast cancer knowledge and care. In this way, the book is not simply a survey of what we know about breast cancer, but a personal search for guidance about navigating the complex, confusing, and frightening terrain of breast cancer diagnosis, treatment, and survival.

One of the most challenging tasks facing clinicians today is the assessment of patients' capacities to consent to treatment. The protection of a patient's right to decide, as well as the protection of incompetent patients from the potential harm of the decisions they might make, rests largely on clinicians' abilities to judge patients' capacities to decide what treatment they will receive.

Confusing laws and complex ethical questions surrounding competence to consent to treatment have made the process of competence assessment intimidating for many clinicians. Health professionals - physicians, medical students nad residents, nurses, and mental health practitioners - have long needed a consice guidebook that translates the issue for practice. This is what this book accomplishes.

The aurthors describe the place of competence in the doctrine of informed consent and show how assessments of competence to consent to treatment can be structured by using a specific set of general medical and psychiatric treatment settings, explain how the assessment should be conducted, and offer a structured interview method to assist the task. They also explore the often difficult process of making the judgement about competence and desire what to do when patients' capacities are limited.

Commodified Bodies examines the social practice of organ transplantation and trafficking and scrutinises the increasingly neoliberal tendencies in the medical system. It analyses phenomena such as the denomination of human body parts as "raw materials" and "commodities," or the arguments used by the proponents for a free market solution. Moreover, it argues that modern medicine is still linked with its religious roots. The commodification of body parts is seen not as an imperialistic act of the market, but as the end of a historical process as the notion of "fetishism" links the market with the body. Marx s concept of commodity fetishism and Sigmund Freud s theory of the perverted use of objects are modified and adapted to the reconstruction of the joint beginnings of market and medicine."

The ethics of sports medicine is an important emerging area within biomedical ethics. The professionalisation of medical support services in sport and continuing debates around issues such as performance-enhancing technologies or the health and welfare of athletes mean that all practitioners in sport, as well as researchers with an interest in sports ethics, need to develop a clear understanding of the ethical aspects of the sport-medicine nexus. In this timely collection of articles, sports ethicist Mike McNamee and other leading international scholars explore the conceptual and practical issues that shape and define ethics in sports medicine. Examining central topics such as consent, confidentiality, pain, doping and genetic technology, this book establishes an important baseline for future academic and professional work in this area.

New Harvest includes contributions from specialists in medical, philosophical, psychological, religious, and legal fields. These essays are not simply a collection, but were developed from a single conception of the four ethical concerns of trans plan tation described in the first chapter. The indi vid ual chapters are all parts of a structure unified by the search for ethical foundations basic to the four concerns. Transplantation is surrounded by a great deal of under standable emotional sensitivi ty. The authors trust that words like "procurement," "harvest," and possibly other expressions found in this book will not offend. We use the current lan but do so with objectivity and respect for those who guage, are personally involved in transplantation. We have made room for, and indeed have invited, different and sometimes conflicting points of view on the complicated ethical ques tions raised by transplant operations. We can not assume that there is one right answer to these questions, at least at our present level of scientific knowledge and ethical wisdom. We do not presume to have identified and analyzed all the ethical questions raised with equal thoroughness. There are four ways in which the scope of the book is limited. Identifying these limitations also helps designate what it is in its own right. First, some questions have been given more attention than others."

In this book, public health ethicist Daniel S. Goldberg sets out to characterize the subjective experience of pain and its undertreatment within the US medical establishment, and puts forward public policy recommendations for ameliorating the undertreatment of pain. The book begins from the position that the overwhelming focus on opioid analgesics as a means for improving the undertreatment of pain is flawed, and argues instead that dominant Western models of biomedicine and objectivity delegitimize subjective knowledge of the body and pain in the US. This general intolerance for the subjectivity of pain is part of a specific American culture of pain in which a variety of actors take part, including not only physicians and health care providers, but also pain sufferers, caregivers, and policymakers. Concentrating primarily on bioethics, history, and public policy, the book brings a truly interdisciplinary approach to an urgent practical ethical problem. Taking up the practical challenge, the book culminates in a series of policy recommendations that provide pathways for moral agents to move beyond contests over drug policy to policy arenas that, based on the evidence, hold more promise in their capacity to address the devastating and inequitable undertreatment of pain in the US.

Clearly argued and written in nontechnical language, this book provides a definitive account of informed consent. It begins by presenting the analytic framework for reasoning about informed consent found in moral philosophy and law. The authors then review and interpret the history of informed consent in clinical medicine, research, and the courts. They argue that respect for autonomy has had a central role in the justification and function of informed consent requirements. Then they present a theory of the nature of informed consent that is based on an appreciation of its historical roots. An important contribution to a topic of current legal and ethical debate, this study is accessible to everyone with a serious interest in biomedical ethics, including physicians, philosophers, policy makers, religious ethicists, lawyers, and psychologists. This timely analysis makes a significant contribution to the debate about the rights of patients and subjects.

In 1976, five years after his death, serious charges were leveled against the distinguished British scientist Sir Cyril Burt. His research on the nature of intelligence was challenged as fraudulent by a number of respected commentators, among them Leon Kamin, Oliver Gillie, Ann and Alan Clarke, and Leslie Hearnshaw. The evidence they marshaled, and the charges themselves are examined here in scrupulous detail. Written as a straightforward defense of Burt, this volume also tells a second story: the intrusion of the mass media into science, the power of the new media, and the success of this invasion, which threatens to replace intellectual authority.

Convinced that a great injustice had been done, Fletcher examines each of the charges in detail, subjecting each of Burt's detractors to a symbolic cross-examination. He exposes carelessness and errors of interpretation, and reveals areas of evidence the critics failed to take into account. Each interrogation ends with a list of questions that call for clear public answer. Fletcher's closing argument calls for the restoration of Burt's reputation, so that justice is done.

The broader significance of this case study goes far beyond the Burt controversy itself, and has implications for the conduct of science in an increasingly contentious social environment. Fletcher describes how ideology, in alliance with a receptive popular journalism and the media, is able to establish itself as a powerful third force in scientific discourse. The Burt Affair demonstrates what happens when the media establish a viewpoint that permeates not only the scientific community, but also entrenches that perspective so thoroughly in public understanding that its assumptions are not even questioned.

This highly original book is an ethnographic noir of how Big Data profits from patient private health information. The book follows personal health data as it is collected from inside healthcare and beyond to create patient consumer profiles that are sold to marketers. Primarily told through a first-person noir narrative, Ebeling as a sociologist-hard-boiled-detective, investigates Big Data and the trade in private health information by examining the information networks that patient data traverses. The noir narrative reveals the processes that the data broker industry uses to create data commodities-data phantoms or the marketing profiles of patients that are bought by advertisers to directly market to consumers. Healthcare and Big Data considers the implications these "data phantoms" have for patient privacy as well as the very real harm that they can cause.

"Over the last two decades, medical researchers have become more comfortable wit the idea that serious attention must be given to ethical issues when the tests of new technologies are being designed. They have come to see that experimental trials must meet certain standards, not only of scientific rigour, but also of moral acceptability." (Introduction)

Presented by an international group of experts, the eight essays included in this volume evaluate the new technologies in fetal care and also wrestle with the new problems, often moral ones, that have accompanied techonological advancement. The opening chapters review state-of-the-art ultrasound imaging and molecular genetics and focus on the new patient--the fetus. From here, the efficacy of fetal therapy, the problem of assessing long-term viability, the ethical issues involved in both clinical practice and medical research, and the legal rights of the new patients and their parents are examined. The final chapter "Are Fetuses Becoming Children?" brings a fresh philosophical perspective to the question of a fetus's status and rights.

In an increasingly legalised healthcare environment, this new handbook provides an essential guide to nursing professionalism in the context of the law. With a professional career undertaking various healthcare-related roles, the author is both a mental health and general nurse who takes the reader through the workings of the legal system and how nurses can apply the law in an ethical and principled way. The handbook helps the reader to consider complex issues such as biomedical ethics, human rights, negligence and the importance of confidentiality, and provides guidance on decision making when faced with legal or ethical dilemmas. Easy to understand and peppered with numerous practical examples throughout, the Handbook of Medical Law and Ethics for Nurses will support development of the essential legal awareness needed by undergraduate and post-graduate nurses alike. Easy to read - suitable for pre-registration nurses as well as practising nurses, midwives and nursing associates Illustrated throughout with case study vignettes and linked to relevant legislation in England Links to case law to improve understanding of the legal system Covers hot topics and debates, supporting nurses to participate in appropriate and effective decision making Supports learning in nursing modules covering professional practice

This volume consists of fourteen chapters selected from papers presented at the conference Ethics, Medicine and Health Care: An Appraisal of the Thought of H. Tristram Engelhardt, Jr.' along with a response to those chapters by Engelhardt and a Foreword by Laurence B. McCullough. The chapters direct primary attention to various aspects of Engelhardt's philosophy of medicine and bioethics as presented in The Foundations of Bioethics and Bioethics and Secular Humanism: The Search for a Common Morality. Among the topics treated are the economics of health care and the medical profession, the libertarian and communitarian aspects of Engelhardt's thought, the moral status of children, abortion, the moral foundations for a health care system, feminism and clinical epistemology, and the relation between secular and religious moralities. In response to the various challenges posed by the authors, Engelhardt considers the implications of the failure of the modern philosophical project, the role of reason in ethics, and the resolution of conflict among communities that do not share the same moral vision. The book will be of interest to professionals in medicine, philosophy, theology, health policy, and law, and to graduate students in those disciplines.

This is the first book that analyzes and systematizes all the general ideas of medicine, in particular the philosophical ones, which are usually tacit. Instead of focusing on one or two points - typically disease and clinical trial - this book examines all the salient aspects of biomedical research and practice: the nature of disease; the logic of diagnosis; the discovery and design of drugs; the design of lab and clinical trials; the crafting of therapies and design of protocols; the moral duties and rights of physicians and patients; the distinctive features of scientific medicine and of medical quackery; the unique combination of basic and translational research; the place of physicians and nurses in society; the task of medical sociology; and the need for universal medical coverage. Health care workers, medicine buffs, and philosophers will find this thought-provoking book highly useful in their line of work and research.

Genetic screening technologies involving pre-implantation genetic diagnosis (PGD) raise particular issues about selective reproduction and the welfare of the child to be born. How does selection impact on the identity of the child who is born? Are children who are selected for a particular purpose harmed or treated as commodities? How far should the state interfere with parents' reproductive choices? Currently, concerns about the welfare of the child in selective reproduction have focused on the individual interests of the child to be born. This book re-evaluates the welfare of the child through the controversial topic of saviour sibling selection. Drawing on relational feminist and communitarian ethics, Michelle Taylor-Sands argues that the welfare of the child to be born is inextricably linked with the welfare of his/her family. The author proposes a relational model for selective reproduction based on a broad conception of the welfare of the child that includes both individual and collective family interests. By comparing regulation in the UK and Australia, the book maps out how law and policy might support a relational model for saviour sibling selection. With an interdisciplinary focus, Saviour Siblings: A Relational Approach to the Welfare of the Child in Selective Reproduction will be of particular interest to academics and students of bioethics and law as well as practitioners and policymakers concerned with the ethics of selective reproduction.

The focus of bioethical debates on exceptional cases neglects the underlying values-like justice and community-that would lend to a broader, more well-rounded understanding of today's world. Discussions of ethical problems in health care too often concentrate on exceptional cases. Bioethical controversies triggered by experimental drugs, gene-edited babies, or life extension are understandably fascinating: they showcase the power of medical science and technology while addressing anxieties concerning health, disease, suffering, and death. However, the focus on rare individual cases in the media spotlight turns attention away from more pressing ethical issues that impact global populations, such as access to health care, safe food and water, and the prevention of emerging infectious diseases. In Bizarre Bioethics, Henk A.M.J. ten Have argues that this focus on bizarre cases leads to bizarre bioethics with a narrow agenda for ethical debate. In other words, although these extreme cases are undeniably real, they present a limited and skewed view of everyday moral reality. This focus also assumes that individuals are rational decision-makers, so that the role of feelings and emotions can be downgraded. Larger questions related to justice, solidarity, community, meaning, and ambiguity are not appreciated. Such questions used to be posed by philosophical and theological traditions, but they have been exorcised and marginalized in the development of bioethics. Science, ten Have writes, is not a value-free endeavor that provides facts and evidence: it is driven by underlying value perspectives that are often based on metaphors and world views from philosophical and theological traditions. Drawing on a rich analysis of the literature, ten Have explains how bioethical discussion can be enriched by these metaphors and develops a broader approach that critically delves into the imaginative world views that determine understanding of the world and human existence. Examining the roles of the metaphors of ghosts, monsters, pilgrims, prophets, and relics, ten Have illustrates how science and medicine are animated by imaginations that fuel the search for hope, salvation, healing, and a predictable future. Bizarre Bioethics invites students, researchers, policymakers and teachers interested in ethics and health care to think about the value perspectives on health and disease today.

This book delves into risks that can easily bedevil any psychotherapist and what can happen if they are ignored. Dramatic storytelling, based on actual incidents from the author's experiences as a member of ethics committees and as an ethics teacher and consultant, explores actions prompting clients to issue formal complaints. Set in the context of an ethics committee meeting over the course of a weekend, twelve psychologists face their peers who will stand in judgment. Issues include the fallout from losing one's temper with a difficult client, a personal disclosure gone terribly wrong, a bartering arrangement that literally falls apart, a private life revealed in a most public way, a vengeful act that sullies the reputation of an entire department, breaking confidentiality when a client threatened harm, and the slippery slope to sexual exploitation. The stories are absorbing, enlightening, sometimes shocking, and often stranger than fiction. Narrative nonfiction puts human faces and emotions on what would otherwise be cursory statistics. What led to the formal complaint from both the vantage point of the complainant and the psychologist offers insights not otherwise available unless the dynamics of their private lives leading up to the conflict are revealed. An author's commentary and discussion questions follow every story. Both new and seasoned practitioners, as well as those still in training, will find this to be an invaluable resource.

This book examines the question of what parental obligations procreators incur by bringing children into being. Prusak argues that parents, as procreators, have obligations regarding future children that constrain the liberty of would-be parents to do as they wish. Moreover, these obligations go beyond simply respecting a child's rights. He addresses in turn the ethics of adoption, child support, gamete donation, surrogacy, prenatal genetic enhancement, and public responsibility for children.