In this book by the award-winning author of Just Healthcare, Norman Daniels develops a comprehensive theory of justice for health that answers three key questions: what is the special moral importance of health? When are health inequalities unjust? How can we meet health needs fairly when we cannot meet them all? Daniels' theory has implications for national and global health policy: can we meet health needs fairly in ageing societies? Or protect health in the workplace while respecting individual (...) liberty? Or meet professional obligations and obligations of justice without conflict? When is an effort to reduce health disparities, or to set priorities in realising a human right to health, fair? What do richer, healthier societies owe poorer, sicker societies? Just Health: Meeting Health Needs Fairly explores the many ways that social justice is good for the health of populations in developed and developing countries. (shrink)

In this book, nine thought-leaders engage with some of the hottest moral issues in science and ethics. Based on talks originally given at the annual "Purdue Lectures in Ethics, Policy, and Science," the chapters explore interconnections between the three areas in an engaging and accessible way. Addressing a mixed public audience, the authors go beyond dry theory to explore some of the difficult moral questions that face scientists and policy-makers every day. The introduction presents a theoretical (...) framework for the book, defining the term "bioethics" as extending well beyond human well-being to wider relations between humans, nonhuman animals, the environment, and biotechnologies. Three sections then explore the complex relationship between moral value, scientific knowledge, and policy making. The first section starts with thoughts on nonhuman animal pain and moves to a discussion of animal understanding. The second section explores climate change and the impact of "green" nanotechnology on environmental concerns. The final section begins with dialog about ethical issues in nanotechnology, moves to an exploration of bio-banks (a technology with broad potential medical and environmental impact), and ends with a survey of the impact of biotechnologies on (synthetic) life itself. (shrink)

Faced with the exponential development of Big Data and both its legal and economic repercussions, we are still slightly in the dark concerning the use of digital information. In the perpetual balance between confidentiality and transparency, this data will lead us to call into question how we understand certain paradigms, such as the Hippocratic Oath in medicine. As a consequence, a reflection on the study of the risks associated with the ethical issues surrounding the design and manipulation of this (...) "massive data" seems to be essential. This book provides a direction and ethical value to these significant volumes of data. It proposes an ethical analysis model and recommendations to better keep this data in check. This empirical and ethico-technical approach brings together the first aspects of a moral framework directed toward thought, conscience and the responsibility of citizens concerned by the use of data of a personal nature. Defines Big Data applications in health Presents the ethical value of the medical datasphere via the description of a model of an ethical analysis of Big Data Provides the recommendations and steps necessary for successful management and governance of personal health data Helps readers determine what conditions are essential for the development of the study of Big Data. (shrink)

This manual is a compendium of various health care policies, guidelines, protocols, and programs that concern clinical issues with ethical implications. The collection of policies, guidelines, and procedures are helpful in drafting and reviewing institutional procedures and helping policymakers develop useful mechanisms for assuring ethical treatment of patients and staff.

The main goals of this work are: Ethical and social aspects of policy, contemporary liberal democratic structures, morality in political decision-making, human rights and their individual conceptions, political-philosophical ideas, function of a social-scientific education, selected aspects of security policy, environmental policy, eco-social market economy and religion and law.

"A book from the Park Ridge Center for the Study of Health, Faith, and Ethics." Includes bibliographical references (p. [141]-195) and index.

Books have their origins in conversations and seek to extend and expand those conversations over time and with different audiences. The conversations that have culminated in this book were initially stimulated through a research project at The Hastings Center on the role of religious voices in the professional fields of bioethical inquiry. Those professional conversations have continued throughout my academic career as a member of various institutional ethics committees, organizational ethics task forces, and in local, state, and national public (...) class='Hi'>policy settings. The professional context of bioethics conversations can sometimes miss the richness of conversations that occur in the classroom and with various communities, including family members, friends, and religious and civic communities. These conversations provide an experiential depth, a groundedness in the lives and stories of persons, which augments and corrects the professionalized perspectives. I have been particularly fortunate and appreciative of opportunities to bridge the academic and professional with the personalized and communal through conversations about the ethical commitments and moral culture cultivated by The Church of Jesus Christ of Latter-day Saints (LDS or Mormon). I was invited to develop an overview essay on "Bioethics in Mormonism" for the professional reference work, Encyclopedia of Bioethics (3rd ed., 2004), and some years later received my first invitation to make a presentation on "LDS Ethics" in an academic setting at the University of Virginia. This book is the outgrowth of these many conversations and seeks to advance my communal bridging. My aim in this book is to begin bridging these various intersections between the LDS religious community and its moral culture, the professional fields of bioethics, and practical decision-making. This work seeks to be a catalyst for expanding discourse within the interdisciplinary field of Mormon studies to include ethics and bioethics. Ethics has not been a well-developed area in Mormon studies, in contrast to studies in LDS history, theology, or literature. To remedy this oversight, I present a substantive interpretation of the sources, theological background, and moral principles of LDS ethics. The historical narratives and conceptual intertwining I offer of both bioethics and of LDS moral culture is intended to complement and expand the realm of Mormon studies. A further objective is to create opportunities for reciprocal dialogues between the bioethics community and LDS scholarship. This conversation has yet to occur within academic disciplines, professional communities, or in public policy deliberations. My exposition, analysis, and critiques will intertwine and contextualize LDS moral values and health care practices within the ethical inquiry undertaken in the broader professional scholarship of bioethics. My arguments will disclose some points of common ground as well as areas of divergence towards the end of establishing the LDS faith tradition as a community of moral discourse for the bioethics field and the healing professions (medicine, nursing, pharmacy, etc.) it informs. My claim is that given its emerging cultural prominence, LDS ethical scholarship should engage in bioethical literacy and bioethics should be LDS-literate. I am also engaged in an effort to initiate more reflective dialogues regarding LDS ethics and moral culture among LDS scholars, LDS health care professionals, and the interested general LDS reader. The focus of the book on the interrelationship of religion, ethics, medicine, and health care should present for these various audiences new opportunities for mindful reflection and creative scholarship on the ethical implications of faith commitments, the responsibilities of the healing professions, and religious dimensions of public policy and public bioethics. A religious community that is formed through narratives and practices of covenantal commitments of love of neighbor needs to have a robust discourse about its ethical character. I have understood my scholarship in biomedical ethics and in religious ethics through a linking metaphor of my moral culture, of medicine, and the law, of bearing witness. The witness offers moral realities, moral truths about the way things are, vocalizes and embodies moral experience, and prophetically critiques the hypocrisies of the powerful and their oppression of the vulnerable by offering a new story, a re-storying, of tradition and conventional practice. (shrink)

This book is a comprehensive and unique text and reference in medical ethics. By far the most inclusive set of primary documents and articles in the field ever published, it contains over 100 selections. Virtually all pieces appear in their entirety, and a significant number would be difficult to obtain elsewhere. The volume draws upon the literature of history, medicine, philosophical and religious ethics, economics, and sociology. A wide range of topics and issues are covered, such as law and (...) medicine, truth-telling by the physician, research, population policy, genetics, abortion, dying, and individual rights in medical care. The selections span the centuries, beginning with material from the works of Hippocrates, continuing through Thomas Percival, John Stuart Mill, and Claude Bernard, down to modern commentators like Henry K. Beecher, Walsh McDermott, David L. Bazelon, Paul Freund, H. L. A. Hart, John Rawls, Paul Ramsey, Richard McCormick, Rashi Fein, and Bernard Barber. The text has eight major divisions, beginning with sections on the ethical dimensions of the physician-patient relationship in history; the moral bases of medical ethics; and regulation, compulsion, and protection of the consumer in clinical medicine and public health. Each of these sections includes key essays that appear for the first time. All of the book's major divisions contain primary documents: codes such as the Hippocratic Oath, Medieval Law for the Regulation of Medicine, and the first as well as the most recent code of the American Medical Association; court decisions, including those on Karen Quinlan and on abortion in the United States and West Germany; government documents such as the statement of the National Commission on the Protection of Human Subjects, the Tuskegee Syphilis Report, the British Parliamentary debate on euthanasia, and the Council of Europe on rights of the sick and dying; and various published guidelines such as the Harvard Medical School brain death criteria, the American Hospital Association on patient's rights, and Pope Pius XII on the prolongation of life. Cases that illustrate moral dilemmas are provided for discussion purposes. Each section is preceded by a succinct editor's introduction. The documents and essays are of practical value for practitioners and students in medicine, law, ethics, and counselling, and for individual patients and groups concerned with medical care. Through encompassing divergent viewpoints, the essays and primary documents were selected to encourage humane practices and deepen understanding of the multiple traditions that shaped and do shape the development of medicine. (shrink)

This book provides the reader with a theoretical and practical understanding of two health care delivery models: the patient/child centred care and family-centred care. Both are fundamental to caring for children in healthcare organizations. The authors address their application in a variety of paediatric healthcare contexts, as well as the ethical and legal issues they raise. Each model is increasingly pursued as a vehicle for guiding the delivery of health care in the best interests of children. Such models of (...) health care delivery shape health care policies, programs, facility design, resource allocation decisions and day-to-day interactions among patients, families, physicians and other health care professionals. To maximize the health and ethical benefits these models offer, there must be shared understanding of what the models entail, as well as the ethical and legal synergies and tensions they can create. This book is a valuable resource for paediatricians, nurses, trainees, graduate students, practitioners of ethics and health policy. (shrink)

This interdisciplinary collection presents valuable discourse and reflection on the nature of a good death. Bringing together a leading judge and other legal scholars, philosophers, social scientists, practitioners and parents who present varying accounts of a good death, the chapters draw from personal experience as well as policy, practice and academic analysis.Covering themes such as patients' rights to determine their own good death, considering their best interests when communication becomes difficult and the role and responsibilities of health professionals, the (...) book outlines how ethical healthcare might be achieved when dealing with assisted suicide by organizations and how end of life services in general might be improved. It will be of interest to students and academics working the area of medical law and ethics as well as health professionals and policy-makers. (shrink)

This thesis studies some philosophical and ethical issues that economic design raises. Chapter 1 gives an overview of economic design and argues that a crossfertilisation between philosophy and economic design is possible and insightful for both sides. Chapter 2 examines the implications of mechanism design for theories of rationality. I show that non-classical theories, such as constrained maximization and team reasoning, are at odds with the constraint of incentive compatibility. This poses a problem for non-classical theories, which proponents of (...) these theories have not addressed to date. Chapter 3 proposes a general epistemology of economic engineering, which is motivated by a novel case study, viz. the reform of a matching market for medical practitioners. My account makes use of causal graphs to explain how models allow encoding counterfactual information about how market outcomes change if the design of the market changes. The second part of the thesis examines ethical issues. In Chapter 4, I apply tools from matching theory to gain insights into the distribution of refugees, such as among countries of the European Union. There is an ethical trade-off between the fairness of matchings and their efficiency, and I argue that in this context, fairness is the morally weightier criterion. Chapter 5 deals with the ethics of kidney exchange. Against critics, I give two arguments for the implementation of kidney exchange programmes. The first argument is that they are instrumental in meeting a moral obligation, namely to donate effectively. The second is that kidney exchange may increase the motivation for altruistic donations, because the donation of one kidney may trigger > 1 life savings. The final chapter identifies questions for future research and it closes with some thoughts about the future trajectory of economic design. (shrink)

Graeme Laurie stepped down from the Chair in Medical Jurisprudence at the University of Edinburgh in 2019. This edited collection pays tribute to his extraordinary contributions to the field. Graeme has often spoken about the importance of 'legacy' in academic work and has forged a remarkable intellectual legacy of his own, notably through his work on genetic privacy, human tissue and information governance, and on the regulatory salience of the concept of liminality. The essays in this volume animate the (...) concept of legacy as lens of analysis for the study and practice of medical jurisprudence. In this light, legacy reveals characteristics of both benefit and burden, as both an encumbrance to and facilitator of the development of law, policy and regulation. Overall, the contributions reconcile the ideas of legacy and responsiveness and show that both dimensions are critical to achieve and sustain the health of medical jurisprudence itself as a dynamic, interdisciplinary and policy-engaged field of thinking. (shrink)

This book addresses the moral, social and political problems emerging from the practice of healing and caring, biomedical research and the provision of health care services. The primary aim of many professional bioethicists is, of late, to solve as efficiently as possible, the problems encountered by health care providers and scientists in clinical, laboratory and administrative settings. Seen from the viewpoint of applied philosophy, however, this is a dangerous tendency if the grounds for the suggested solutions are not properly (...) examined. Even choices which are harmless and seem to involve no immoralities can be indirectly hazardous if those making choices appeal to dubious ethical principles or inaccurate data. This is why this book is dedicated to the examination of the reasons that people can and should have for their health care related decisions as well as to the formulation of good solutions to difficult problems. It covers criterial in life and death decisions, voluntary euthanasia and medical paternalism, wrongful medical authoritarianism, health education, preventive medicine and the welfare of the population, AIDS, discrimination and legal restrictions, and health care policy-making. (shrink)

There have been serious controversies in the latter part of the 20th century about the roles and functions of scientific and medical research. In whose interests are medical and biomedical experiments conducted and what are the ethical implications of experimentation on subjects unable to give competent consent? From the decades following the Second World War and calls for the global banning of medical research to the cautious return to the notion that in controlled circumstances, medical (...) research on human subjects is in the best interest of the given individual and the broader population, this book addresses the key implications of experimentation on humans. This volume covers major ethical themes within biomedical research providing historical, philosophical, legal and policy reflections on the literature and specific issues in the field of research on human subjects. Focusing on special populations (the elderly, children, prisoners and the cognitively impaired) it represents the most up-to-date review of the special ethical and legal conflicts that arise with relation to experimentation on subjects from these groups. In the light of current initiatives for law reform pertaining to research ethics the world over, this volume provides a timely, comprehensive and provocative exploration of the field. The volume has been carefully organized to present important philosophical perspectives on organizing principles that should underlie any practical application. A forward-looking historical review of the regulatory regimes of principal jurisdictions, including of the legal controls already in place, provides the backdrop for future policy initiatives. Additionally, in the light of global restructuring of health care systems, several chapters have been devoted to epidemiological research and related issues. (shrink)

To what extent should parents be able to choose the kind of child they have? The unfortunate phrase 'designer baby' has become familiar in debates surrounding reproduction. As a reference to current possibilities the term is misleading, but the phrase may indicate a societal concern of some kind about control and choice in the course of reproduction. Typically, people can choose whether to have a child. They may also have an interest in choosing, to some extent, the conditions under which (...) they do so, such as whether they have a child with a serious disability or disease. The purpose of this book is to explore the difficult and controversial question of the appropriate ethical and legal extent of reproductive autonomy in this context. The book examines ethical, legal and public policy issues in prenatal screening, prenatal diagnosis (PND), selective abortion and preimplantation genetic diagnosis (PGD). It explores the ethics of these selection practices and the ability of current ethical guidelines and legal mechanisms, including the law on selective abortion and wrongful birth, to deal with advances in genetic and other knowledge in these areas. Unlike in the United States, in England the relevant law is not inherently rights-based, but the impact of the Human Rights Act 1998 inevitably raises questions about the proper scope of reproductive autonomy in this context. The implications of the analysis are considered for the development of relevant law, public policy and ethical guidelines and will be of interest to academics in medical law and ethics, health professionals, lawyers, those working on public policy and students with an interest in these issues. (shrink)

This book provides the reader with a theoretical and practical understanding of two health care delivery models: the patient/child centred care and family-centred care. Both are fundamental to caring for children in healthcare organizations. The authors address their application in a variety of paediatric healthcare contexts, as well as the ethical and legal issues they raise. Each model is increasingly pursued as a vehicle for guiding the delivery of health care in the best interests of children. Such models of (...) health care delivery shape health care policies, programs, facility design, resource allocation decisions and day-to-day interactions among patients, families, physicians and other health care professionals. To maximize the health and ethical benefits these models offer, there must be shared understanding of what the models entail, as well as the ethical and legal synergies and tensions they can create. This book is a valuable resource for paediatricians, nurses, trainees, graduate students, practitioners of ethics and health policy. (shrink)

What is health policy for? In Health and the Good Society, Alan Cribb addresses this question in a way that cuts across disciplinary boundaries. His core argument is that biomedical ethics should draw upon public health values and ethics; specifically, he argues that everybody has some share of responsibility for health, including a responsibility for promoting greater health equality. In the process, Cribb argues for a major rethink of the whole project of health education.

Drawing on Sir Ian Kennedy's extensive experience in healthcare law, ethics and public policy-making, this book explores vital issues in the law surrounding healthcare and regulation. The book contains a range of published and unpublished essays and speeches with the addition of notes and commentaries by the author that bring the pieces up to the present day. Those who want to understand developments, from transplants to confidentiality, from COVID-19 to public inquiries to regulation will find a rich seam of (...) rigorous, informed analysis. The author's unique range of experience allows him to share insights on a variety of issues; from the conduct of the disgraced breast surgeon, Ian Paterson, to research at Porton Down, to the economics of innovation in drug development at NICE. His abiding interest in the welfare of children informs his trenchant forensic examination of how children fare in the NHS. Those involved in or with an interest in law, moral philosophy, and public policy will find much food for thought. (shrink)

He addresses three main issues: first, the historical means by which economics has consciously surrendered its original association with ethical categories and criteria; second, the need to articulate the appropriate thoughtforms and vocabulary of ethical theory; and third, the illustration of areas in economics where ethical awareness is desirable and should be allowed to exert influence.

This volume reflects on questions of human rights in the context of globalization. The essays responding to this subject are rich and varied: they focus on legal acceptance as well as consequences of human rights with regard to social rights and the necessary protection of the environment connected or close to those rights. Another approach to the subject featured in the volume is the legal recognition and the consideration of human rights as moral rights. With concepts on universality, a (...) new cosmopolitism, cultural pluralism and perspectives on religious variants and technological advances the debate on human rights is concluded. Index / Indice I. The Foundation of Rights / El fundamento de los derechos: J. Rubio Carracedo: El legalismo occidental: un problema para la universalizacion de los derechos humanos J. A. Seoane: El caracter juridico de las leyes injustas M. Borowski: Classifying and qualifying properties of fundamental rights J. von Platz: Faith in reason: questioning practical reason as fact, norm, end, and function of human rights R. Cruft: Policy implications of the philosophical foundations of human rights Maria Gabriela Scataglini: Derechos humanos: otra mirada sobre la cuestion de su universalidad II. A New Cosmopolitism / Un nuevo cosmopolitismo: V. de P. Barreto: Derecho cosmopolita y derechos humanos Luis Fernando Barzotto: Reconocimiento y fraternidad A. R. Bernstein: Justifying universal human rights via Rawlsian public reason H. Khatchadourian: Democracy and the globalization of human rights Milagros Otero Parga: Derechos humanos y globalizacion Halim Bepari: Human rights and the United Nations Miracy B. S. Gustin: Rescate de los derechos humanos en situaciones adversas de paises perifericos III. Multiculturism and Pluralism of Values /Multiculturalidad y pluralismo de valores: M. Herrero / M. Saralegui: Dogmatismo politico y pluralismo religioso Berry Tholen: Migration, justice, and Europe's identity. The relevance of special ties for EU's migration policy C. M. Alvarez Chicano: Implicaciones de la inconmensurabilidad de los valores en la aplicacion de principios de orden etico y juridico L. Perez Conejo: Axiologia juridica y pluralismo de valores: algunas consideraciones sobre la nocion de 'inconmensurabilidad' S-I. Liu: Fundamental legal values and globalization with regard to historical experience in freedom of speech L. C. Amezua: Libertad natural y esclavitud voluntaria: reflexiones de F. Suarez sobre la esclavitud IV. Rights and Gender / Derechos y genero: J.M. Gil Ruiz: La violencia de genero en el contexto familiar y la agresion de la ciencia juridica A. Goiriena Lekue: El interes superior del/la nino/a, coparentalidad y neutralidad de genero en la atribucion de la guarda y custodia de los hijos e hijas P. Garcia Guevara: Las politicas de genero en los paises globalizados del 'Tercer Mundo' V. Technological Impact and New Generation Rights / Impacto tecnologico y nuevas generaciones de derechos: M. Ahteensuu: Understanding the precautionary principle in the light of the traditional weak-strong distinction: a critical comment Cristina Monero Atienza: Bases para una teoria de los derechos en el siglo XXI M. Kitahara: Personal data processing and business ethics: personal data processing and personal data protection in business A. D. Oliver Lalana: El lado empirico de la legitimidad comunicativa: sobre la publicidad organizativa del derecho de proteccion de datos en internet J. Ebbesson / M. Zamboni: Transbordering democracy? The case of environment protection Sagrario Moles Nieto: El impacto medioambiental de los cultivos transgenicos VI. Bioethics and Law / Bioetica y derecho: M. Cruz Diaz de Teran: Principios para una biojuridica global C. Faralli / S. Tugnoli: Bioethics between law and science: the Italian law on medically assisted procreation (Law No. 40, February 19, 2004) N. Zeegers: The working of power in communicative regulation: the case of research with human embryos J. A. Fernandez Suarez: La bioetica en la era de la globalizacion F. J. Blazqez Ruiz: Privacidad y discriminacion genetica: propuestas bioeticas y juridicas ante los desafios de un mundo globalizado. (shrink)

There are few industries in which decisions are so intently scrutinized by millions of Canadians as the healthcare industry. Each and every day important decisions concerning the funding and delivery of healthcare are made away from the clinic and in the offices of administrators and policy makers. This book is designed to assist the current and future healthcare administrator to render effective and ethical decisions. Health administration ethics functions as a bridge between business ethics and clinical ethics. This (...) book forges the essential link between the foundational concepts of ethics theories, principles, and codes and the science of decision making. It takes a case study approach and introduces a new, user-friendly decision-making model. There is currently no Canadian textbook designed to guide administration decisions within the Canadian healthcare system, making this textbook unique in the market. (shrink)

The concept of community is increasingly the focus of political argument in Britain, the United States and elsewhere around the world. The sense people have of belonging to coummunities provides a powerful motivation which continues to affecct the political and social face of the world. Recently, debate about the relationship between individuals and their communities has become central to the making of both, American and European social policy. In the United Kingdom this is especially apparent in the area of (...) health care, where ideas of community have informed recent legislation concerning community care, community health trusts and the Children Act among others. This volume explores the focus of interest in community and the emerging theoretical oppostion between communitarianism and liberalism, as well as the practical, theoretical and ethical issues relating to community in the health care professions, including a discussion of the health service as Civil Association, an analysis of liberal and communitarian views on the allocaiton of health care resources, an exploration of the use of genetic information and an examination of health care decision making for incapacitated elderly patients. (shrink)

Criticisms of the ethical justification of antidoping legislation are not uncommon in the literatures of medical ethics, sports ethics and sports medicine. Critics of antidoping point to inconsistencies of principle in the application of legislation and the unjustifiability of ethical postures enshrined in the World Anti-Doping Code, a new version of which came into effect in January 2009. This article explores the arguments concerning the apparent legal peculiarities of antidoping legislation and their ethically salient features in terms (...) of: notions of culpability, liability and guilt; aspects of potential duplication of punishments and the limitations of athlete privacy in antidoping practice and policy. It is noted that tensions still exist between legal and ethical principles and norms that require further critical attention. (shrink)

All investigators funded by the National Institutes of Health are now required to receive training about the ethics of clinical research. Based on a course taught by the editors at NIH, Ethical and Regulatory Aspects of Clinical Research is the first book designed to help investigators meet this new requirement. The book begins with the history of human subjects research and guidelines instituted since World War II. It then covers various stages and components of the clinical trial process: (...) designing the trial, recruiting participants, ensuring informed consent, studying special populations, and conducting international research. Concluding chapters address conflicts of interest, scientific misconduct, and challenges to the IRB system. The appendix provides sample informed consent forms. This book will be used in undergraduate courses on research ethics and in schools of medicine and public health by students who are or will be carrying out clinical research. Professionals in need of such training and bioethicists also will be interested. (shrink)

IRBs in action -- Everyone's an expert? Warrants for expertise -- Local precedents -- Documents and deliberations: an anticipatory perspective -- Setting IRBs in motion in Cold War America -- An ethics of place -- The many forms of consent -- Deflecting responsibility -- Conclusion: the making of ethical research.

Medical error is a leading problem of health care in the United States. Each year, more patients die as a result of medical mistakes than are killed by motor vehicle accidents, breast cancer, or AIDS. While most government and regulatory efforts are directed toward reducing and preventing errors, the actions that should follow the injury or death of a patient are still hotly debated. According to Nancy Berlinger, conversations on patient safety are missing several important components: religious voices, (...) traditions, and models. In After Harm, Berlinger draws on sources in theology, ethics, religion, and culture to create a practical and comprehensive approach to addressing the needs of patients, families, and clinicians affected by medical error. She emphasizes the importance of acknowledging fallibility, telling the truth, confronting feelings of guilt and shame, and providing just compensation. After Harm adds important human dimensions to an issue that has profound consequences for patients and health care providers. (shrink)

Ethical dilemmas and value conflicts affect cities globally, but urban leaders and citizens often avoid confronting them directly and instead view the governance of cities as primarily an administrative task or, even worse, a merely political one. Timothy Beatley challenges readers to consider the issues in our cities not simply as legal or economic problems but as moral ones, asking readers 'How can a city become more ethical?' Beatley unearths, exposes, and explores the many ethical questions (...) cities face today and touches on many topics, from privacy and crime to racism and the ethics of public space. Drawing from recent policy debates and using extensive examples to consider complex ethical dilemmas, Beatley argues that cities must expand the definition of the moral community to include all their citizens. Cities must take profound steps to address social injustice and plan for climate change-both moral obligations-and this approachable and readable introduction to moral philosophy, urban planning, and social justice will help new generations to grapple with these global issues. (shrink)

BackgroundVerbal autopsy is a pragmatic approach for generating cause-of-death data in contexts without well-functioning civil registration and vital statistics systems. It has primarily been conducted in health and demographic surveillance systems (HDSS) in Africa and Asia. Although significant resources have been invested to develop the technical aspects of verbal autopsy, ethical issues have received little attention. We explored the benefits and burdens of verbal autopsy in HDSS settings and identified potential strategies to respond to the ethical issues (...) identified.MethodsThis research was based on a case study approach centred on two contrasting HDSS in Kenya and followed the Mapping-Framing-Shaping Framework for empirical bioethics research. Data were collected through individual interviews, focus group discussions, document reviews and non-participant observations. 115 participants were involved, including 86 community members (HDSS residents and community representatives), and 29 research staff (HDSS managers, researchers, census field workers and verbal autopsy interviewers).ResultsThe use of verbal autopsy data for research and public health was described as the most common potential benefit of verbal autopsy in HDSS. Community members mentioned the potential uses of verbal autopsy data in addressing immediate public health problems for the local population while research staff emphasized the benefits of verbal autopsy to research and the wider public. The most prominent burden associated with the verbal autopsy was emotional distress for verbal autopsy interviewers and respondents. Moral events linked to the interview, such as being unsure of the right thing to do (moral uncertainty) or knowing the right thing to do and being constrained from acting (moral constraint), emerged as key causes of emotional distress for verbal autopsy interviewers.ConclusionsThe collection of cause-of-death data through verbal autopsy in HDSS settings presents important ethical and emotional challenges for verbal autopsy interviewers and respondents. These challenges include emotional distress for respondents and moral distress for interviewers. This empirical ethics study provides detailed accounts of the distress caused by verbal autopsy and highlights ethical tensions between potential population benefits and risks to individuals. It includes recommendations for policy and practice to address emotional and moral distress in verbal autopsy. (shrink)

A broad critical review of national policies on biomedical research - human, epidemiologic, clinical trials, genetic, reproductive, etc.

Photo by Hannah Busing on Unsplash INTRODUCTION Religion has long provided guidance that has led to standards reflected in some aspects of medical practices and traditions. The recent bioethical literature addresses numerous new problems posed by advancing medical technology and demonstrates an erosion of standards rooted in religion and long widely accepted as almost axiomatic. In the deep soul-searching that pervades the publications on bioethics, several disturbing and dangerous trends neglect some basic lessons of philosophy, logic, and (...) history. The bioethics discourse on medical aid in dying emphasizes similarity over previously recognized important distinguishing features. For example, it overplays a likeness between assistance in dying and the withdrawal of life-saving technology. In many bioethics’ topics, arguments based on a logical continuum are used to question the lines demarcating important moral differences. l. The Line Between Ethical and Not: Logic Based on Continuum Careful case selection, often either end of a continuum, allows the tearing down or ridiculing of many rules and codes across most professions and fields of interest. This situation holds true for traffic laws as well as medical ethics guidelines. It is relatively simple for those who desire to attack a particular viewpoint by selecting a case that makes that position seem untenable. In the ethics realm, good and bad medicine exist at opposite ends of an ethical continuum, with many practices lying in between. For example, much of medical ethics exists between the Nazi criminal physicians and the most sainted nurse or physician. A gradual progression occurred over less than two decades from a utilitarian position that supported limited euthanasia for those with certain mental illnesses to genocide. German society embraced a utilitarian ethic in which the value of human life no longer was intrinsic but instrumental.[1] Many morally significant points on a continuum were then ignored as the misguided utilitarian policy rampantly continued. A point in the continuum to distinguish between ethically justifiable and that which is not can be difficult to identify compared to the two extremes. This continuum is not unique to ethics but can be applied to almost any other aspect of human life and endeavor. Between a severely ill schizophrenic person and a superbly well-adjusted individual, there is a continuum of mental and psychological function. The existence of a continuum should not paralyze thinking and prevent us from drawing lines and identifying moral differences based on objective criteria as well as moral philosophy. Yet, by focusing on a continuum, many bioethicists use logic to disregard dividing lines between an "ethical" and an "unethical" act. Unfortunately, sometimes bioethicists draw revolutionary conclusions that would change the scope of medical practices which is accepted as ethical. There are many examples of similar shifts on the continuum. Many authors argue for the ethical permissibility of abortion by pointing out that the human fetus is no different in various characteristics, one arguing it is as like an ape or chick as it is like a person,[2] and does not achieve unique human and individual characteristics until well into the first year of life.[3] While human fetuses arguably do not have certain distinctive qualities of personhood, most people shy away from the logical next conclusion: permitting infanticide. For example, Joshua Lederberg condemns infanticide, in the face of biological illogic, because of our emotional commitment to infants, to me, a relatively weak explanation. Sir Francis Crick suggests we might consider birth at two days of life in order to decide whether an infant is a "suitable" member of society.[4] Giublini and Minerva suggest that infanticide should be permissible since late pregnancy abortions are permissible, arguing there is no significant difference between a fetus just before birth and an infant just after birth.[5] Clearly the continuum approach would allow for subjective arguments in favor of later infanticide at other points many days post-birth. Years ago, with a cynical tone, I mentioned infanticide as a further step on the continuum beyond abortion, and I was rightly shouted down as being deliberately provocative to assert the logic would ever stretch so far. While it is not an accepted mainstream position, the movement in academic settings from widespread condemnation to limited possible acceptance of infanticide has taken place in an incredibly short time. Public opinion and medical opinion in these areas have shifted dramatically in a short time. In another area, from a biological and chemical point of view, there is a continuum from man down to a single carbon atom. Yet, it would not seem logical to ignore the emotional differences, the meaning of personhood, or the moral distinction between killing an insect and killing a person. ll. A False Continuum: Medical Aid in Dying I assert that there has been an erosion of ethical guidelines in recent years attributable to using continuums to camouflage important distinctions. James Rachels’ work on active and passive euthanasia, which contends that the two are ethically identical, exemplifies that logic.[6] He illustrates this thesis, using a continuum to compare different scenarios with like consequences as morally equivalent, by comparing the deliberate drowning of a child with a deliberate failure to rescue a drowning child when easily able to do so. The author's comparison proposes that since much of the medical profession has already made peace with withholding treatment in order to hasten death, consistency inexorably demands that we permit active euthanasia as well.[7] When permission for active euthanasia was first introduced, it was limited exclusively to patients suffering severely from an intractable, incurable, and irreversible disease. These guidelines have been continuously eroded. There is now a substantial serious consideration for permitting active euthanasia of healthy elderly individuals who feel that they have completed their lives and are "tired of living."[8] There are many moral and factual differences along the ethical continuum. In human life, there is a difference between a live baby and a fetus, between a viable fetus and one that is not, between a fetus and a zygote, and between a zygote and a sperm cell. Similarly, there is a difference between pulling a trigger to kill someone and not interfering in preventing his death, which is reprehensible though both may be. There is a difference between not resuscitating an 80-year-old man with cancer when his heart stops and injecting him with a fatal dose of potassium chloride. I argue that an overt act of taking life repels civilized human beings is to be commended and encouraged as the reverence for human life or even for just a moment of human life is one of the great contributions of our civilization. CONCLUSION As an orthodox Jew, I feel that divinely inspired guidelines that have stood the test of centuries shape my beliefs, and such guidelines contradict medical aid in dying. I cannot speak to the viewpoint of those who do not access religion in defining their moral stance, nor do I implicate them in the current bioethics' trends, as I am not aware of the personal role of religion in the lives of most such authors. While many nonreligious people have a firm philosophical grounding and oppose medical aid in dying, I suggest that in the absence of any religious or other absolute standards, developing logically defensible ethical guidelines may be challenging. At the least, religion may play a role in defining the points on the continuums that are ethically meaningful and refuting the trending beliefs that if the endpoint is the same, allowing different methods of arriving at that end are somehow ethically equal. The continuum of ways death may result does not negate analysis of whether death is brought about in ways that recognize the importance of life. The German philosopher Hans Jonas said, "It is a question whether without restoring the category of the sacred, the category most thoroughly destroyed by the scientific enlightenment, we can have an ethics able to cope with the extreme powers that we possess today and constantly increase and are compelled to use."[9] While countries vary on the role of religion in policy, with many emphasizing freedoms of religion, a recent position paper released by a group of Jewish, Christian, and Moslem leaders suggested the need for agreement on the unique sanctity of human life.[10] I would recommend that such a document serve as an example of consensus on critical foundational bioethical guidelines for democratic secular societies. - [1] Alexander L Medical science under dictatorship. New England Journal of Medicine, 241, p39-47 DOI10.1056/NEJM194907142410201 [2] Lederberg J. A geneticist looks at contraception and abortion, Annals of Internal Medicine 67, sup 2, 25-27. https:/doi.org/10.7326/0003-4819-67-3-25 [3] Ibid. [4] Editorial, Sociology: Logic of biology. Nature 220, 429 https://www.nature.com/articles/220429b0 [5] Giublini A Minerva F After-birth abortion: why should the baby live. J Med Ethics 39, 261- [6] Rachels J Active and passive euthanasia. New England Journal of Medicine 292, 78-80 [7] Ibid. [8] Cohen-Almagor R Euthanizing people who are "tired of life". in Euthanasia and Assisted Suicide-Lessons from Belgium. Ch 11 of Euthanasia and Assisted Suicide, Cambridge University Press pp173-187. 2017 and DOI; https://doi.org/10.1017/9781108182799.012 [9] Hans Jonas, Technology and Responsibility: Reflections on the New Tasks of Ethics, 1972, found as Chapter IX, Philosophical Essays, 1980. https://inters.org/jonas-technology-responsability [10] A position paper of the Abrahamic Monotheistic religions on matters concerning the end-of-life. Vatican Press 28 October 2019 https://press.vatican.va/content/salastampa/en/bollettino/pubblico/2019/10/28/191028f.html. (shrink)

Budgets of governments and private insurances are limited. Not all drugs and services that appear beneficial to patients or physicians can be covered. Is there a core set of benefits that everyone should be entitled to? If so, how should this set be determined? Are fair decisions just impossible, if we know from the outset than not all needs can be met? While early work in bioethics has focused on clinical issues and a narrow set of principles, in recent years (...) there has been a marked shift towards addressing broader population-level issues, requiring consideration of more demanding theories in philosophy, political science, and economics. At the heart of bioethics' new orientation is the goal of clarity on a complex set of questions in rationing and resource allocation. Rationing and Resource Allocation in Healthcare: Essential Readings provides key excerpts from seminal and pertinent texts and case studies about these topics, contextualized by original introductions. The volume is divided into three broad sections: Conceptual Distinctions and Ethical Theory; Rationing; and Resource Allocation. Containing the most important and classic articles surrounding the theoretical and practical issues related to rationing and how to allocate scare medical resources, this collection aims to assist and inform those who wish to be a part of bioethics' 21st century shift including practitioners and policy-makers, and students and scholars in the health sciences, philosophy, law, and medical ethics. (shrink)

Medical ethics should show how an adequate description of morality is helpful in dealing with the problems that arise in the context of medical care. However none of the standard moral theories provide such a description. Further, all of these theories assume that there must be a unique correct answer to every moral question, though this answer may be that it is indifferent which of the proposed solutions one picks. The failure to recognize that there are (...) unresolvable moral disagreements leads many philosophers to think that their moral theories will enable them to determine which policies ought to be adopted. However, the correct role for moral theories is more limited: to rule out morally unacceptable policies. Moral theories almost never can settle disputes about which of two well supported health care policies ought to be adopted. (shrink)

Biopolitics and Utopia explores the intersection of biopolitics and utopian thought. As an interdisciplinary work, it addresses many salient biopolitical issues (state and medical interventions in the body, fears over scientific progress, resistance to state biopower, and ethical concerns), while also engaging in the utopian drive behind biopolitical efforts. The book is structured into four main sections: Actions, Speculations, Reactions, and Reflections. The chapters in Actions examine the practices of direct, medical intervention to 'normalize' citizens' bodies. The (...) next section, Speculations, approaches the intersection of utopia and biopolitics through a literary lens, reviewing science fiction texts as expressions of cultural and social fears about scientific progress. Reactions outlines potential acts of resistance in the face of biopower. Finally, Reflections offers a more philosophical essay, which engages the reader in the potential for creating an ethics for scientific standards. (shrink)

The recent Covid-19 pandemic has brought a broad range of ethical problems to the forefront, raising fundamental questions about the role of government in response to such outbreaks, the scarcity and allocation of health care resources, the unequal distribution of health risks and economic impacts, and the extent to which individual freedom can be restricted. In this clear introduction to the topic Iwao Hirose explores these ethical questions and analyzes the central issues in the ethics of pandemic response (...) and preparedness such as: The general nature of pandemics and the ethics of preparedness Ethical questions about general goals of pandemic response and preparedness The distribution of scarce resources, e.g., ventilators, hospital beds, antiviral drugs and vaccines Restrictions on individual freedom Ethical questions in the wake of pandemics, including contact-tracing, vaccine passports and socioeconomic inequalities. With the use of real-life examples and a clear philosophical approach, The Ethics of Pandemics is a much-needed introduction to some of the most important ethical issues surrounding pandemics. It is essential reading for students of ethics, bioethics, and political philosophy and will also be of interest to those working in related areas such as public policy, public health, health law, nursing and life sciences. (shrink)

This book examines the controversies surrounding biomedical research in the twenty-first century from a human rights perspective, analyzing the evolution and ...

Machine generated contents note: CHAPTER 1 HEALTH CARE PROFESSIONALS AND HIV: The Duty To WarnI -- CHAPTER 2 EMERGENCY CARE AND HIV: Treatment Policy and -- Pracice17 -- CHAPTER 3 A REVOLUTIONARY POLICY? Mandatory Disclosure of HIV -- Serostaus29 -- CHAPTER 4 MINORS AND HEALTH CARE: The Limits of Consent and -- Confidentiality39 -- CHAPTER 5 THE RIGHTS TO REFUSE AND DEMAND MEDICAL -- TREATMENT: The Bounds ofAutonomy andFutli{y47 -- CHAPTER 6 RELIGIOUS FREEDOM AND THE RIGHT TO (...) REFUSE CARE: -- What Are The Limits?65 -- CHAPTER 7 ASSISTED REPRODUCTIVE TECHNOLOGY: The Business of -- Making Babies 89 -- CHAPTER 8 TWINS AND TRANSPLANTS: Choosing Who Lives 113 -- CHAPTER 9 FREE ABORTION SERVICES AND FETAL TISSUE RESEARCH: -- Freedom of Choice and Coercion123 -- CHAPTER 10 PROPERTY RIGHTS, BODY PARTS, AND REPRODUCTION: -- Who Owns the Human Body? - 139 -- CHAPTER 11 OUTBREAK IN AMERICA: The Policy of Public Verses Private -- Interests 153 -- APPENDIX A CONFIDENTIALITY OF HIV TEST RESULTS: California Health -- and Safety Code Sections 120975 Through 121020169 -- APPENDIX B HEALTH CARE PROFESSIONALS AND HIV: Texas Health and -- Safety Code Section 58.204 175 -- APPENDIX C TARASOFF v, THE REGENTS OF THE UNIVERSITY OF -- CALIFORNIA: Supreme Court of California177 -- APPENDIX D THE RIGHTS OF MINORS TO CONSENT TO HEALTH CARE: -- California Family Code Sections 6903 Through 6929183 -- APPENDIX E FEDERAL DRUG AND ALCOHOL ABUSE CONFIDENTIALITY -- REGULATIONS: Title 42 Code of Federal Regulations Part 2 187 -- APPENDIX F CHILD ABUSE REPORTING LAWS: Caitfornia Penal Code -- Sections 11164 Through 11166 193. (shrink)

Books have their origins in conversations and seek to extend and expand those conversations over time and with different audiences. The conversations that have culminated in this book were initially stimulated through a research project at The Hastings Center on the role of religious voices in the professional fields of bioethical inquiry. Those professional conversations have continued throughout my academic career as a member of various institutional ethics committees, organizational ethics task forces, and in local, state, and national public (...) class='Hi'>policy settings. The professional context of bioethics conversations can sometimes miss the richness of conversations that occur in the classroom and with various communities, including family members, friends, and religious and civic communities. These conversations provide an experiential depth, a groundedness in the lives and stories of persons, which augments and corrects the professionalized perspectives. I have been particularly fortunate and appreciative of opportunities to bridge the academic and professional with the personalized and communal through conversations about the ethical commitments and moral culture cultivated by The Church of Jesus Christ of Latter-day Saints (LDS or Mormon). I was invited to develop an overview essay on "Bioethics in Mormonism" for the professional reference work, Encyclopedia of Bioethics (3rd ed., 2004), and some years later received my first invitation to make a presentation on "LDS Ethics" in an academic setting at the University of Virginia. This book is the outgrowth of these many conversations and seeks to advance my communal bridging. My aim in this book is to begin bridging these various intersections between the LDS religious community and its moral culture, the professional fields of bioethics, and practical decision-making. This work seeks to be a catalyst for expanding discourse within the interdisciplinary field of Mormon studies to include ethics and bioethics. Ethics has not been a well-developed area in Mormon studies, in contrast to studies in LDS history, theology, or literature. To remedy this oversight, I present a substantive interpretation of the sources, theological background, and moral principles of LDS ethics. The historical narratives and conceptual intertwining I offer of both bioethics and of LDS moral culture is intended to complement and expand the realm of Mormon studies. A further objective is to create opportunities for reciprocal dialogues between the bioethics community and LDS scholarship. This conversation has yet to occur within academic disciplines, professional communities, or in public policy deliberations. My exposition, analysis, and critiques will intertwine and contextualize LDS moral values and health care practices within the ethical inquiry undertaken in the broader professional scholarship of bioethics. My arguments will disclose some points of common ground as well as areas of divergence towards the end of establishing the LDS faith tradition as a community of moral discourse for the bioethics field and the healing professions (medicine, nursing, pharmacy, etc.) it informs. My claim is that given its emerging cultural prominence, LDS ethical scholarship should engage in bioethical literacy and bioethics should be LDS-literate. I am also engaged in an effort to initiate more reflective dialogues regarding LDS ethics and moral culture among LDS scholars, LDS health care professionals, and the interested general LDS reader. The focus of the book on the interrelationship of religion, ethics, medicine, and health care should present for these various audiences new opportunities for mindful reflection and creative scholarship on the ethical implications of faith commitments, the responsibilities of the healing professions, and religious dimensions of public policy and public bioethics. A religious community that is formed through narratives and practices of covenantal commitments of love of neighbor needs to have a robust discourse about its ethical character. I have understood my scholarship in biomedical ethics and in religious ethics through a linking metaphor of my moral culture, of medicine, and the law, of bearing witness. The witness offers moral realities, moral truths about the way things are, vocalizes and embodies moral experience, and prophetically critiques the hypocrisies of the powerful and their oppression of the vulnerable by offering a new story, a re-storying, of tradition and conventional practice. (shrink)

This book is a collection of papers presented at an interdisciplinary workshop at the Calgary Institute for the Humanities in May 1980. The three broad issues covered are: the physician-patient relationship, the allocation of responsibility among doctors and nurses, and the political and social framework of the health care system. The first set of essays is concerned with the moral and legal aspects of the physician-patient relationship. The link between knowledge and power is examined as well as the (...) moral dilemmas posed by medical technology. These initial essays would alone justify this publ. (shrink)

In Science and Ethics, Bernard Rollin examines the ideology that denies the relevance of ethics to science. Providing an introduction to basic ethical concepts, he discusses a variety of ethical issues that are relevant to science and how they are ignored, to the detriment of both science and society. These include research on human subjects, animal research, genetic engineering, biotechnology, cloning, xenotransplantation, and stem cell research. Rollin also explores the ideological agnosticism that scientists have displayed regarding subjective experience (...) in humans and animals, and its pernicious effect on pain management. Finally, he articulates the implications of the ideological denial of ethics for the practice of science itself in terms of fraud, plagiarism, and data falsification. In engaging prose and with philosophical sophistication, Rollin cogently argues in favor of making education in ethics part and parcel of scientific training. (shrink)

The case of Terri Schiavo, a young woman who spent 15 years in a persistent vegetative state, has emerged as a watershed in debates over end-of-life care. While many observers had thought the right to refuse medical treatment was well established, this case split a family, divided a nation, and counfounded physicians, legislators, and many of the people they treated or represented. In renewing debates over the importance of advance directives, the appropriate role of artificial hydration and nutrition, and (...) the responsibilities of family members, the case also became one of history's most extensively litigated health care disputes. The Case of Terri Schiavo assembles a team of first-hand participants and content experts to provide thoughtful and nuanced analyses. In addition to a comprehensive overview, the book includes contributions by Ms. Schiavo's guardian ad litem, a neurologist and lawyer who participated in the case, and scholars who examine issues related to litigation, faith, gender, and disability. The volume also includes a powerful dissent from the views of many scholars in the bioethics community. The book is intended for students, health care professionals, policy makers, and other in search of carefully reasoned analyses of the case that will shape our view of death and end-of-life medical care for decades. (shrink)

A number of recent publications by the philosopher David Seedhouse are discussed. Although medicine is an eminently ethical enterprise, the technical and ethical aspects of health care practices can be distinguished, therefore justifying the existence of medical ethics and its teaching as a specific part of every medical curriculum. The goal of teaching medical ethics is to make health care practitioners aware of the essential ethical aspects of their work. Furthermore, the contention (...) that rational bioethics is a fruitless enterprise because it analyses non-rational social events seems neither theoretically tenable nor to be borne out by actual practice. Medical ethics in particular and bioethics in general, constitute a field of expertise that must make itself understandable and convincing to relevant audiences in health care. (shrink)

While tens of thousands of people across the United States serve on hospital and other healthcare ethics committees, almost no carefully prepared educational material exists for HEC members. Ethics by Committee is a one volume collection of chapters developed exclusively for this educational purpose. Experts in bioethics, clinical consultation, health law, and social psychology from across the country contribute chapters on ethics consultation, education, and policy development.

While tens of thousands of people across the United States serve on hospital and other healthcare ethics committees , almost no carefully prepared educational material exists for HEC members. Ethics by Committee is a one volume collection of chapters developed exclusively for this educational purpose. Experts in bioethics, clinical consultation, health law, and social psychology from across the country contribute chapters on ethics consultation, education, and policy development.

In this book, James Dunson explores end-of-life ethics including physician-assisted suicide and continuous sedation. He argues that ethical debates currently ignore the experience of the dying patient in an effort to focus on policy creation, and proposes that the dying experience should instead be prioritized and used to inform policy development.

Unethical practices in education come at too great a cost when our future generation is at stake. Educators are role models for students in their future careers and so must believe in and use ethical practices. In politics, in big and small business, and in legal and medical practice the question of ethical practices surrounds us. Have people become desensitized to ethics? Are we condoning unethical practice? Our educational profession must stand up for honesty and integrity. We, (...) as educators, have the obligation of setting the standards for ethics. Ethical Dilemmas in Education addresses the dilemmas teachers face every day throughout all aspects of education in a comprehensive manner. The book outlines standards of professionalism and presents information teachers can use for the challenges teachers face. With the policies of today's educational system, teachers need to stand up for honesty and integrity, providing role models for students in their future careers. This book guides teachers towards developing ethical habits and a professional demeanor. (shrink)

In recent years, cross-national collaboration in medical research has gained increased policy attention. Policies are developed to enhance data sharing, ensure open-access, and harmonize international standards and ethics rules in order to promote access to existing resources and increase scientific output. In tandem with this promotion of data sharing, numerous ethics policies are developed to control data flows and protect privacy and confidentiality. Both sets of policy making, however, pay limited attention to the moral decisions and (...) social ties enacted in the everyday routines of scientific work. This paper takes its point of departure in the practices of a Danish laboratory with great experience in international collaboration regarding genetic research. We focus on a simple query, what makes genetic material and health data flow, and which hopes and concerns travel along with them? We explore what we call the flows, the nonflows, and the overflows of material and information, and we document the work producing the flows of health data and biomaterial. We call this work “ethics work” and argue that it is crucial for data sharing though it is rarely articulated in ethics policies, remains inadequately funded, and lacks acknowledgment in policies promoting international data sharing. (shrink)