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The Ethics of Clinical Research
When is clinical research in developing countries exploitation? Exploitation is a concept in ordinary moral thought that has not often been analyzed outside the Marxist tradition. Yet it is commonly used to describe interactions that seem morally suspect in some way. A case in point is clinical research sponsored by developed countries and carried out in developing countries, with participants who are poor and sick, and lack education. Such individuals seem vulnerable to abuse. But does this, by itself, make such research exploitative?
Exploitation and Developing Countries is an attempt by philosophers and bioethicists to reflect on the meaning of exploitation, to ask whether and when clinical research in developing countries counts as exploitative, and to consider what can be done to minimize the possibility of exploitation in such circumstances. These reflections should interest clinical researchers, since locating the line between appropriate and inappropriate use of subjects--the line between exploitation and fair use--is the central question at the heart of research ethics. Reflection on this rich and important moral concept should also interest normative moral philosophers of a non-Marxist bent.
In addition to the editors, the contributors are Richard J. Arneson, Alisa L. Carse, Margaret Olivia Little, Thomas Pogge, Andrew W. Siegel, and Alan Wertheimer.
In Feminist, Queer, Crip Alison Kafer imagines a different future for disability and disabled bodies. Challenging the ways in which ideas about the future and time have been deployed in the service of compulsory able-bodiedness and able-mindedness, Kafer rejects the idea of disability as a pre-determined limit. She juxtaposes theories, movements, and identities such as environmental justice, reproductive justice, cyborg theory, transgender politics, and disability that are typically discussed in isolation and envisions new possibilities for crip futures and feminist/queer/crip alliances. This bold book goes against the grain of normalization and promotes a political framework for a more just world.
John Rock and the Reproductive Revolution
As Louise Brown—the first baby conceived by in vitro fertilization—celebrates her 30th birthday, Margaret Marsh and Wanda Ronner tell the fascinating story of the man who first showed that human in vitro fertilization was possible. John Rock spent his career studying human reproduction. The first researcher to fertilize a human egg in vitro in the 1940s, he became the nation’s leading figure in the treatment of infertility, his clinic serving rich and poor alike. In the 1950s he joined forces with Gregory Pincus to develop oral contraceptives and in the 1960s enjoyed international celebrity for his promotion of the pill and his campaign to persuade the Catholic Church to accept it. Rock became a more controversial figure by the 1970s, as conservative Christians argued that his embryo studies were immoral and feminist activists contended that he had taken advantage of the clinic patients who had participated in these studies as research subjects. Marsh and Ronner’s nuanced account sheds light on the man behind the brilliant career. They tell the story of a directionless young man, a saloon keeper’s son, who began his working life as a timekeeper on a Guatemalan banana plantation and later became one of the most recognized figures of the twentieth century. They portray his medical practice from the perspective of his patients, who ranged from the wives of laborers to Hollywood film stars. The first scholars to have access to Rock’s personal papers, Marsh and Ronner offer a compelling look at a man whose work defined the reproductive revolution, with its dual developments in contraception and technologically assisted conception.
Science, Ethics, and Law
To reduce the deleterious effects of environmental contamination, governments across the world have enacted regulations broadly conceived for entire populations. Information arising out of the Human Genome Project and other cutting-edge genetic research is shifting the policymaking process. This fascinating volume draws on experts from academia, government, industry, and nongovernmental organizations to examine the science of genomic research as applied to environmental policy. The first section explores environmental policy applications, including subpopulation genetic profiling, industrial regulations, and standardizing governmental evaluation of genomic data. The second section assesses from multiple angles the legal framework involved in applying genomics to environmental regulation. In the third section, the contributors review closely the implications of genomic research for occupational health, from disease prevention and genetic susceptibility to toxicants, to workers’ rights and potential employment discrimination. A fourth section explores the bioethical and philosophical complications of bringing genetic data and research into nonclinical regulatory frameworks. Genomics and Environmental Regulation points to ways in which information on toxicology and genetics can be used to craft more precise and efficient regulations.
The Joint Commission (TJC) accredits and certifies more than 19,000 health care organizations in the United States, including hospitals, nursing homes, and home care agencies. Each organization must have a standing health care ethics committee to maintain its status. These interdisciplinary committees are composed of physicians, nurses, attorneys, ethicists, administrators, and interested citizens. Their main function is to review and provide resolutions for specific, individual patient care problems. Many of these committees are well meaning but may lack the information, experience, skills, and formal background in bioethics needed to adequately negotiate the complex ethical issues that arise in clinical and organizational settings. Handbook for Health Care Ethics Committees was the first book of its kind to address the myriad responsibilities faced by ethics committees, including education, case consultation, and policy development. Adopting an accessible tone and using a case study format, the authors explore serious issues involving informed consent and refusal, decision making and decisional capacity, truth telling, the end of life, palliative care, justice in and access to health care services, and organizational ethics. The authors have thoroughly updated the content and expanded their focus in the second edition to include ethics committees in other clinical settings, such as long-term care facilities, small community hospitals, rehabilitation centers, and hospices. They have added three new chapters that address reproduction, disability, and the special needs of the elder population, and they provide additional specialized policies and procedures on the book’s website. This guide is an essential resource for all health care ethics committee members.
Composed entirely of specially commissioned chapters by some of the outstanding scholars in medical sociology, this edition reflects important changes in the study of health and illness. In addition to updated and reconceived chapters on the impacts of gender, race, and inequality on health, this volume has new chapters on topics that include: --social networks, neighborhoods, and social capital --disability --dying and "the right to die" --health disparities --the growing influence of the pharmaceutical industry --patient safety --evidence-based medicine and quality of care --health social movements --genetics --religion, spirituality, and health
Vol. 35 (2005) - vol. 41 (2011)
The Hastings Center Report is a leading journal in bioethics featuring original scholarship and commentary on issues in health, medicine, medical research, and biotechnology as they affect individuals, communities, and societies. It is published by The Hastings Center, an independent, nonpartisan, and nonprofit organization.
Religion, Medicine, and Moral Anthropology
What, exactly, does it mean to be human? It is an age-old question, one for which theology, philosophy, science, and medicine have all provided different answers. But though a unified response to the question can no longer be taken for granted, how we answer it frames the wide range of different norms, principles, values, and intuitions that characterize today's bioethical discussions. If we don't know what it means to be human, how can we judge whether biomedical sciences threaten or enhance our humanity? This fundamental question, however, receives little attention in the study of bioethics. In a field consumed with the promises and perils of new medical discoveries, emerging technologies, and unprecedented social change, current conversations about bioethics focus primarily on questions of harm and benefit, patient autonomy, and equality of health care distribution. Prevailing models of medical ethics emphasize human capacity for self-control and self-determination, rarely considering such inescapable dimensions of the human condition as disability, loss, and suffering, community and dignity, all of which make it difficult for us to be truly independent. In Health and Human Flourishing, contributors from a wide range of disciplines mine the intersection of the secular and the religious, the medical and the moral, to unearth the ethical and clinical implications of these facets of human existence. Their aim is a richer bioethics, one that takes into account the roles of vulnerability, dignity, integrity, and relationality in human affliction as well as human thriving. Including an examination of how a theological anthropologyùa theological understanding of what it means to be a human beingùcan help us better understand health care, social policy, and science, this thought-provoking anthology will inspire much-needed conversation among philosophers, theologians, and health care professionals.
"Luck egalitarianism"--the idea that justice requires correcting disadvantages resulting from brute luck--has gained ground in recent years and is now the main rival to John Rawls's theory of distributive justice. Health, Luck, and Justice is the first attempt to systematically apply luck egalitarianism to the just distribution of health and health care. Challenging Rawlsian approaches to health policy, Shlomi Segall develops an account of just health that is sensitive to considerations of luck and personal responsibility, arguing that people's health and the health care they receive are just only when society works to neutralize the effects of bad luck.
Combining philosophical analysis with a discussion of real-life public health issues, Health, Luck, and Justice addresses key questions: What is owed to patients who are in some way responsible for their own medical conditions? Could inequalities in health and life expectancy be just even when they are solely determined by the "natural lottery" of genes and other such factors? And is it just to allow political borders to affect the quality of health care and the distribution of health? Is it right, on the one hand, to break up national health care systems in multicultural societies? And, on the other hand, should our obligation to curb disparities in health extend beyond the nation-state?
By focusing on the ways health is affected by the moral arbitrariness of luck, Health, Luck, and Justice provides an important new perspective on the ethics of national and international health policy.