The privacy concerns discussed in the 1990s in relation to the New Genetics failed to anticipate the relevant issues for individuals, families, geneticists and society. Consumers, for example, can now buy their personal genetic information and share it online. The challenges facing genetic privacy have evolved as new biotechnologies have developed, and personal privacy is increasingly challenged by the irrepressible flow of electronic data between the personal and public spheres and by surveillance for terrorism and security risks. This book considers the right to know and the right not to know about your own and others' genomes. It discusses new privacy concerns and developments in ethical thinking, with the greater emphasis on solidarity and equity. The multidisciplinary approach covers current topics such as biobanks and forensic databases, DIY testing, group rights and accountability, the food we eat and the role of the press and the new digital media.

This volume is the result of a conference sponsored by the Medical Alumni Association of the University of California, Davis and held in Sacramento, California, in January, 2000, The purpose of this conference was to examine the impact ofvarious health care structures on the ability of health care professionals to practice in an ethically acceptable manner. One of the ground assumptions made is that ethical practice in medicine and its related fields is difficult in a setting that pays only lip service to ethical principles. The limits of ethical possibility are created by the system within which health care professionals must practice. When, for example, ethical practice necessitates-as it generally does-that health care professionals spend sufficient time to come to know and understand their patients' goals and values but the system mandates that only a short time be spent with each patient, ethical practice is made virtually impossible. One of our chief frustrations in teaching health care ethics at medical colleges is that we essentially teach students to do something they are most likely to find impossible to do: that is, get to know and appreciate their patients' goals and values. There are other ways in which systems alter ethical possibilities. In a system in which patients have a different physician outside the hospital than they will inside, ethical problems have a different shape than if the treating physician is the same person.

Das 2012 vom Deutschen Bundestag verabschiedete Patientenrechtegesetz hat mehrere Ziele in Bezug auf die Wahrnehmung der Belange von Kranken: Transparenz klinischer Therapiewege, ein besserer Umgang mit moeglichen Behandlungsfehlern und schnellere Verfahrensablaufe sowie eine Reihe von weiteren Aspekten. Im Kern markiert dieser neue juristische Rahmen vor allem aber ein Phanomen: Den zentralen Perspektivwechsel im Gesundheitswesen hin zu einer starkeren Orientierung am Patienten. Dieser Band dokumentiert und analysiert verschiedene Aspekte dieser wichtigen Entwicklung in zwei grossen Abschnitten und zehn Einzelkapiteln: Historischer Wandel der Patientenrolle im Gesundheitswesen, die wichtige Funktion der Selbsthilfegruppen als Burgerbewegung, patientenorientierter Umgang mit Beschwerden, empirische Untersuchungen zur Arzt-Patient-Beziehung und die Entstehung der "Unabhangigen Patientenberatung Deutschland" (UPD). Ein Schwerpunkt des Bandes ist das Instrument des Patientenfursprechers zur Starkung der Rechte von Kranken. Erfahrungsberichte zur klinischen Implementierung und unterschiedliche Modelle fur Kontaktpersonen zur Patientenfursprache werden ebenso vorgestellt wie Fallberichte der Aktiven zum besseren Vergleich der klinischen Problemfelder.

Since Dolly the sheep was born, controversy has swirled around the technology of cloning. We recoil at the prospect of human copies, manufactured men and women, nefarious impersonators and resurrections of the dead. Such reactions have serious legal consequences: lawmakers have banned stem cell research along with the cloning of babies. But what if our minds have been playing tricks on us? What if everything we thought we knew about human cloning is rooted in intuition rather than fact? Human Cloning: Four Fallacies and Their Legal Consequences is a rollicking ride through science, psychology, and the law. Drawing on sources ranging from science fiction films to the Congressional Record, this book unmasks the role that psychological essentialism has played in bringing about cloning bans. It explains how hidden intuitions have caused conservatives and liberals to act contrary to their own most cherished ideals and values.

Alasdair Maclean analyses the ethical basis for consent to medical treatment, providing both an extensive reconsideration of the ethical issues and a detailed examination of English law. Importantly, the analysis is given a context by situating consent at the centre of the healthcare professional-patient relationship. This allows the development of a relational model that balances the agency of the two parties with their obligations that arise from that relationship. That relational model is then used to critique the current legal regulation of consent. To conclude, Alasdair Maclean considers the future development of the law and contrasts the model of relational consent with Neil Manson and Onora O'Neill's recent proposal for a model of genuine consent.

This volume maps the areas of ethical concern in the debate regarding the governance of genetic information, and suggests alternative ethical frameworks and models of regulation in order to inform its restructuring. Genetic governance is at the heart of medical and scientific developments, and is connected to global exploitation, issues of commodification, commercialisation and ownership, the concepts of property and intellectual property and concerns about individual and communal identity. Thus the decisions that are made in the next few years about appropriate models of genetic governance will have knock-on effects for other areas of governance. In short the final answer to 'Who Decides?' in the context of genetic governance will fundamentally shape the ethical constructs of individuals and their networks and relationships in the public sphere.

Ethical Problems and Genetics Practice provides a rich, case-based account of the ethical issues arising in the genetics clinic and laboratory. By analysing a wide range of evocative and often arresting cases from practice, Michael Parker provides a compelling insight into the complex moral world of the contemporary genetics professional and the challenges they face in the care of patients and their families. This book is essential reading for anyone interested in the ethical issues arising in everyday genetics practice. Ethical Problems and Genetics Practice is also a sustained engagement with the relationships between bioethics and social science. In proposing and exemplifying a new approach to bioethics, it makes a significant contribution to debates on methods and interdisciplinarity and will therefore also appeal to all those concerned with theoretical and methodological approaches to bioethics and social science.

Bioethics and Disability provides tools for understanding the concerns, fears and biases that have convinced some people with disabilities that the health care setting is a dangerous place and some bioethicists that disability activists have nothing to offer bioethics. It wrestles with the charge that bioethics as a discipline devalues the lives of persons with disabilities, arguing that reconciling the competing concerns of the disability community and the autonomy-based approach of mainstream bioethics is not only possible, but essential for a bioethics committed to facilitating good medical decision making and promoting respect for all persons, regardless of ability. Through in-depth case studies involving newborns, children and adults with disabilities, it proposes a new model for medical decision making that is both sensitive to and sensible about the fact of disability in medical cases.

Many books discuss the ethical treatment of human subjects in behavioral research, yet few talk about the equally important ethical issues that arise when the data are being analyzed and the study is being written up. All researchers need to be aware of their professional responsibilities and make sound choices after the subjects have left. This practical and easy-to-follow guide walks readers through often overlooked decision points in the research process. Drawing from his extensive experience as a teacher of research methods and a senior editorial advisor, and from well-established standards of practice - including the APA Ethics Code - Harris Cooper is the ideal mentor in this process. Readers of this book will learn how to: Collect and manage data in a way that does not compromise the confidentiality of subjects Avoid data fraud and misleading data analysis Assign research responsibilities and authorships to team members Avoid committing plagiarism and intellectual theft Navigate the journal submission and publication process Post-publication ethical considerations are also addressed, including researchers' obligations when communicating their findings to the media and the general public, and when engaging with the scientific community as a peer reviewer.

In America, in direct response to indefinite delays on the national transplantation waitlists and an inadequate supply of organs, a growing number of terminally ill Americans are turning to international underground markets and coordinators or brokers for organs. Chinese inmates on death-row and the economically disadvantaged in India and Brazil are the often compromised co-participants in the private negotiation process, which occurs outside the legal process - or in the shadows of law. These individuals supply kidneys and other organs for Americans and other Westerners willing to shop and pay in the private process. This book contends that exclusive reliance on the present altruistic tissue and organ procurement processes in the United States is not only rife with problems, but also improvident. The author explores how the altruistic approach leads to a 'black market' of organs being harvested from Third World individuals as well as compelled donations from children and incompetent persons.

Tod und Sterben gelten in unserer Gesellschaft immer noch als Tabu. Zum Sterben wird gerne auf Institutionen wie Krankenhaus oder Pflegeheim zuruckgegriffen. Durch die Palliativmedizin und den immer starkeren Einfluss der Hospizbewegung andert sich mittlerweile das Bewusstsein fur die letzte Phase des Lebens. Diese Studie betrachtet den Umgang mit den Begriffen Tod und Sterben in der Medizin. Auch werden die damit in Zusammenhang stehenden Begriffe Lebensqualitat, Sterbehilfe und Sterbebegleitung in ihrer historischen Entwicklung thematisiert. Den Abschluss der Arbeit bildet eine ausfuhrliche Betrachtung der historischen und aktuellen Bedingungen einer Kommunikation mit Sterbenden.

The family are intimately involved in the care of the dying and themselves require support through their experience of both palliative care and bereavement. This volume describes a comprehensive model of family care and how to go about it - an approach which is new, preventive, cost effective and with proven benefits to the bereaved.;The book has been designed rather like a therapy manual, providing a step-by-step approach to assessment and intervention. Its rich illustration through many clinical examples brings the process of therapy alive for the reader, anticipating the common challenges that arise and describing how the therapist might respond. Families are recognised throughout as a central social unit, pivotal to the success of palliative care. This title should be of use to doctors, nurses, psychologists, social workers, pastoral care workers, psychiatrists and other allied health professionals who work in caring for the dying and for their bereaved relatives. Based soundly on a decade of internationally regarded research, this book will alter the direction of future medical practice and is destined to become a classic in its field.

Schwangere Frauen mussen uber die Inanspruchnahme pranataler Untersuchungen entscheiden und nach Vorliegen des Befundes in manchen Fallen uber einen Schwangerschaftsabbruch. Diese Entscheidungen sollten moeglichst selbstbestimmt sein. Dazu kann Beratung beitragen. Das Buch stellt sich der ebenso schwierigen wie wichtigen Aufgabe, einen auch fur Nichtjuristen verstandlichen UEberblick uber die ethischen und rechtlichen Rahmenbedingungen von Beratung bei Pranataldiagnostik und Schwangerschaftsabbruch zu geben. Der Gesetzgeber hat sich mit der Einfuhrung des 2a SchKG und des GenDG von 2010 in diesem Kontext erstmals fur die Normierung eines Beratungskonzepts entschieden, das auf der Zusammenarbeit insbesondere von AErzten und psychosozialen Beraterinnen beruht. Die Zusammenarbeit erfordert neben der Anerkennung der Professionalitat des anderen die Kenntnis seines Beratungsverstandnisses. Dazu gehoeren gesetzliche, untergesetzliche, berufsrechtliche und professionsinterne Vorgaben sowie die Berucksichtigung ethischer Aspekte.

Biotechnologies already on the horizon will enable us to be smarter, have better memories, be stronger and quicker, have more stamina, live longer, be more resistant to diseases, and enjoy richer emotional lives. To some of us, these prospects are heartening; to others, they are dreadful. In Beyond Humanity a leading philosopher offers a powerful and controversial exploration of urgent ethical issues concerning human enhancement. These raise enduring questions about what it is to be human, about individuality, about our relationship to nature, and about what sort of society we should strive to have. Allen E. Buchanan urges that the debate about enhancement needs to be informed by a proper understanding of evolutionary biology, which has discredited the simplistic conceptions of human nature used by many opponents of enhancement. He argues that there are powerful reasons for us to embark on the enhancement enterprise, and no objections to enhancement that are sufficient to outweigh them.

The 2nd Edition of Who Owns You, David Koepsell s widely acclaimed exploration of the philosophical and legal problems of patenting human genes, is updated to reflect the most recent changes to the cultural and legal climate relating to the practice of gene patenting. * Lays bare the theoretical assumptions that underpin the injustice of patents on unmodified genes * Makes a unique argument for a commons-by-necessity, explaining how parts of the universe are simply not susceptible to monopoly claims * Represents the only work that attempts to first define the nature of the genetic objects involved before any ethical conclusions are reached * Provides the most comprehensive accounting of the various lawsuits, legislative changes, and the public debate surrounding AMP v. Myriad, the most significant case regarding gene patents

The manner in which genetic research associated with addiction is conducted, interpreted and translated into clinical practice and policy initiatives raises important social, ethical and legal issues. Genetic Research on Addiction fulfils two key aims; the first is to identify the ethical issues and requirements arising when carrying out genetically-based addiction research, and the second is to explore the ethical, legal and public policy implications of interpreting, translating and applying this research. The book describes research guidelines on human protection issues such as improving the informed consent process, protecting privacy, responsibilities to minors and determining whether to accept industry funding. The broader public health policy implications of the research are explored and guidelines offered for developing effective social interventions. Highly relevant for clinicians, researchers, academics and policy-makers in the fields of addiction, mental health and public policy.

The Spirit Ambulance is a journey into decision-making at the end of life in Thailand, where families attempt to craft good deaths for their elders in the face of clashing ethical frameworks, from a rapidly developing universal medical system, to national and global human-rights politics, to contemporary movements in Buddhist metaphysics. Scott Stonington's gripping ethnography documents how Thai families attempt to pay back a "debt of life" to their elders through intensive medical care, followed by a medically assisted rush from the hospital to home to ensure a spiritually advantageous last breath. The result is a powerful exploration of the nature of death and the complexities arising from the globalization of biomedical expertise and ethics around the world.

To what extent should parents be allowed to use reproductive technologies to determine the characteristics of their future children? And is there something morally wrong with parents who wish to do this? Choosing Tomorrow's Children provides answers to these (and related) questions. In particular, the book looks at issues raised by selective reproduction, the practice of choosing between different possible future persons by selecting or deselecting (for example) embryos, eggs, and sperm. Wilkinson offers answers to questions including the following. Do children have a 'right to an open future' and, if they do, what moral constraints does this place upon selective reproduction? Should parents be allowed to choose their future children's sex? Should we 'screen out' as much disease and disability as possible before birth, or would that be an objectionable form of eugenics? Is it acceptable to create or select a future person in order to provide lifesaving tissue for an existing relative? Is there a moral difference between selecting to avoid disease and selecting to produce an 'enhanced' child? Should we allow deaf parents to use reproductive technologies to ensure that they have a deaf child?

Professional values in healthcare are in a state of constant and increasingly rapid change. While all professions now emphasise teamwork and collegiality in practice, fewer are inclined to consider shared or differing values across professions. This interdisciplinary volume explains how health care professions and their values have changed over the last forty years, charting where they have come from, where they are now, and how they might develop in the future. There is coverage of a wide range of different professions within healthcare, from GPs, mental health nurses, adult nurses and pharmacists, to NHS managers and chaplains. Chapters are followed by critical responses from senior healthcare practitioners. This original and insightful book will be a valuable resource for academics, researchers, senior healthcare professionals and healthcare managers.

The sixth edition of the Manual for Research Ethics Committees was first published in 2003, and is a unique compilation of legal and ethical guidance which will prove useful for members of research ethics committees, researchers involved in research with humans, members of the pharmaceutical industry and students of law, medicine, ethics and philosophy. Presented in a clear and authoritative form, it incorporates the key legal and ethical guidelines and specially written chapters on major topics in bioethics by leading academic authors and practitioners, pharmaceutical industry associations and professional bodies.

The ethical dimensions of managing healthcare services are often daunting, but the sixth edition of this highly regarded text provides the principles to educate students and guide practitioners as they strive to make the "right" decisions. From historical to contemporary examples, readers learn essential steps to effectively identify and solve ethical problems. More than 75 case studies and vignettes allow opportunities to analyze and apply ethical decision making across a range of care delivery settings and topics, including patient autonomy, end-of-life decisions, consent for treatment, resource allocation, whistle-blowing, confidentiality, and more. An extensive index helps readers locate and explore specific topics. Building upon the core principles of respect for persons, beneficence, nonmaleficence, and justice, as supplemented by virtue ethics, readers learn: *how to understand and shape an organization's value system *how to develop an apply personal and professional codes of ethics and address conflicts of interest *the manager's duties to and relationships with patients, staff, community, and profession *means and methods for resolving administrative and biomedical ethical issues *considerations of emerging ethics issues influenced by managed care, resource allocation, and social responsibility *special challenges in end-of-life decisions, including advance medical directives (AMDs), physician-assisted suicide (PAS), euthanasia, and allow natural death (AND) The most comprehensive book on health services ethics, this text is indispensable for education in health services organization and management, strategic planning, finance, marketing, and nursing administration. NEW to the Sixth Edition: *More than a dozen new cases and vignettes reflecting contemporary ethical issues *Enhanced and updated tables, figures, and problem-solving model *Greater focus on health policy and issues of rationing, regulation, and unintended consequences of policy decisions *Instructive new examples of mission and vision statements and their connection to HRM *Enhanced attention to administrative and clinical conflicts of interest *Updated and expanded bibliography

Historically associated with military service, conscientious objection has become a significant phenomenon in health care. Mark Wicclair offers a comprehensive ethical analysis of conscientious objection in three representative health care professions: medicine, nursing and pharmacy. He critically examines two extreme positions: the 'incompatibility thesis', that it is contrary to the professional obligations of practitioners to refuse provision of any service within the scope of their professional competence; and 'conscience absolutism', that they should be exempted from performing any action contrary to their conscience. He argues for a compromise approach that accommodates conscience-based refusals within the limits of specified ethical constraints. He also explores conscientious objection by students in each of the three professions, discusses conscience protection legislation and conscience-based refusals by pharmacies and hospitals, and analyzes several cases. His book is a valuable resource for scholars, professionals, trainees, students, and anyone interested in this increasingly important aspect of health care.

In the course of the 20th century, cancer went from being perceived as a white woman's nemesis to a "democratic disease" to a fearsome threat in communities of color. Drawing on film and fiction, on medical and epidemiological evidence, and on patients' accounts, Keith Wailoo tracks this transformation in cancer awareness, revealing how not only awareness, but cancer prevention, treatment, and survival have all been refracted through the lens of race. Spanning more than a century, the book offers a sweeping account of the forces that simultaneously defined cancer as an intensely individualized and personal experience linked to whites, often categorizing people across the color line as racial types lacking similar personal dimensions. Wailoo describes how theories of risk evolved with changes in women's roles, with African-American and new immigrant migration trends, with the growth of federal cancer surveillance, and with diagnostic advances, racial protest, and contemporary health activism. The book examines such powerful and transformative social developments as the mass black migration from rural south to urban north in the 1920s and 1930s, the World War II experience at home and on the war front, and the quest for civil rights and equality in health in the 1950s and '60s. It also explores recent controversies that illuminate the diversity of cancer challenges in America, such as the high cancer rates among privileged women in Marin County, California, the heavy toll of prostate cancer among black men, and the questions about why Vietnamese-American women's cervical cancer rates are so high. A pioneering study, How Cancer Crossed the Color Line gracefully documents how race and gender became central motifs in the birth of cancer awareness, how patterns and perceptions changed over time, and how the "war on cancer" continues to be waged along the color line.

This book provides an introductory survey of various bioethical issues facing society from beginning of life issues to end of life issues, and several issues in between.

Medical Ethics, Law and Communication at a Glance presents a succinct overview of these key areas of the medical curriculum. This new title aims to provide a concise summary of the three core, interlinked topics essential to resolving ethical dilemmas in medicine and avoiding medico-legal action. Divided into two sections; the first examines the ethical and legal principles underpinning each medical topic; while the second focuses on communication skills and the importance of good communication. Medical Ethics, Law and Communication at a Glance offers an accessible introduction to the fundamentals of good medical practice, and will provide indispensable support for undergraduate medical students and nurses, as well as newly qualified healthcare professionals.