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Institutional Review Boards and the Social Sciences, 1965–2009
University researchers in the United States seeking to observe, survey, or interview people are required first to complete ethical training courses and to submit their proposals to an institutional review board (IRB). Under current rules, IRBs have the power to deny funding, degrees, or promotion if their recommended modifications to scholars’ proposals are not followed. This volume explains how this system of regulation arose and discusses its chilling effects on research in the social sciences and humanities. Zachary M. Schrag draws on original research and interviews with the key shapers of the institutional review board regime to raise important points about the effect of the IRB process on scholarship. He explores the origins and the application of these regulations and analyzes how the rules—initially crafted to protect the health and privacy of the human subjects of medical experiments—can limit even casual scholarly interactions such as a humanist interviewing a poet about his or her writing. In assessing the issue, Schrag argues that biomedical researchers and bioethicists repeatedly excluded social scientists from rule making and ignored the existing ethical traditions in nonmedical fields. Ultimately, he contends, IRBs not only threaten to polarize medical and social scientists, they also create an atmosphere wherein certain types of academics can impede and even silence others. The first work to document the troubled emergence of today's system of regulating scholarly research, Ethical Imperialism illuminates the problems caused by simple, universal rule making in academic and professional research. This short, smart analysis will engage scholars across academia.
A Practical Guide for Aid Workers in Developing Countries
In recent years, international medicine has become a growth industry. International aid organizations, religious organizations, and medical schools all provide opportunities for health care workers to travel to developing countries to provide needed medical care to the world's poorest citizens.
Medical aid workers from the West encounter many challenges. They serve in settings with limited medical supplies, facilities, and personnel. Their patients speak different languages, have different cultures, and may even have different interpretations of disease. They have limited time in which to provide medical care to hundreds of people. In such circumstances, ethical dilemmas abound, and many health care practitioners, both novice and expert, are unprepared to manage them.
This volume provides medical aid workers with a method for identifying, analyzing, and resolving ethical issues within the context of international medicine. It also presents a series of cases, representative of the ethical issues they are likely to encounter, that illustrate the use of that method. Designating four areas in which good intentions may go awry because of miscommunication and misunderstanding between health care provider and patient - Medical Facts, Goals and Values, Norms, and Limitations - Dr. Wall develops an invaluable tool for individuals and health organizations seeking to serve in developing countries throughout the world.
This volume explores ethical issues specific to working with deaf clients, particularly matters of confidentiality, managing multiple relationships, and the clinician’s competency to provide services, particularly in communicating with and understanding deaf people. Led by editor Virginia Gutman, a unique assembly of respected mental health professionals share their experiences and knowledge in working with deaf clients. Irene Leigh commences Ethics in Mental Health and Deafness with her varied experiences as a deaf mental health practitioner, and Gutman follows with insights on ethics in the “small world” of the Deaf community. William McCrone discusses the law and ethics, and Patrick Brice considers ethical issues regarding deaf children, adolescents, and their families. In contrast, Janet Pray addresses concerns about deaf and hard of hearing older clients. Minority deaf populations pose additional ethical aspects, which are detailed by Carolyn Corbett. Kathleen Peoples explores the challenges of training professionals in mental health services specifically for deaf clients. Closely related to these topics is the influence of interpreters with deaf clients in mental health settings, which Lynnette Taylor thoroughly treats. Ethics and Mental Health in Deafness also features a chapter on genetic counseling and testing for deafness by Kathleen Arnos. The final section, written by Robert Pollard, examines ethical conduct in research with deaf people, a fitting conclusion to a volume that will become required reading for all professionals and students in this discipline.
Among Them, but Not of Them
Autism is one of the most compelling, controversial, and heartbreaking cognitive disorders. It presents unique philosophical challenges as well, raising intriguing questions in philosophy of mind, cognitive science, and philosophy of language that need to be explored if the autistic population is to be responsibly served. Starting from the "theory of mind" thesis that a fundamental deficit in autism is the inability to recognize that other persons have minds, Deborah R. Barnbaum considers its implications for the nature of consciousness, our understanding of the consciousness of others, meaning theories in philosophy of language, and the modality of mind. This discussion lays the groundwork for consideration of the value of an autistic life, as well as the moral theories available to persons with autism. The book also explores questions about genetic decision making, research into the nature of autism, and the controversial quest for a cure. This is a timely and wide-ranging book on a disorder that commends itself to serious ethical examination.
Mapping the Moral Landscape
Stem cell research. Drug company influence. Abortion. Contraception. Long-term and end-of-life care. Human participants research. Informed consent. The list of ethical issues in science, medicine, and public health is long and continually growing. These complex issues pose a daunting task for professionals in the expanding field of bioethics. But what of the practice of bioethics itself? What issues do ethicists and bioethicists confront in their efforts to facilitate sound moral reasoning and judgment in a variety of venues? Are those immersed in the field capable of making the right decisions? How and why do they face moral challenge—and even compromise—as ethicists? What values should guide them? In The Ethics of Bioethics, Lisa A. Eckenwiler and Felicia G. Cohn tackle these questions head on, bringing together notable medical ethicists and people outside the discipline to discuss common criticisms, the field’s inherent tensions, and efforts to assign values and assess success. Through twenty-five lively essays examining the field’s history and trends, shortcomings and strengths, and the political and policy interplay within the bioethical realm, this comprehensive book begins a much-needed critical and constructive discussion of the moral landscape of bioethics.
Disasters, both natural and manufactured, provide ample opportunities for official coercion. Authorities may enact quarantines, force evacuations, and commandeer people and supplies—all in the name of the public’s health. When might such extreme actions be justified, and how does a democratic society ensure that public officials exercise care and forethought to avoid running roughshod over human rights? In The Ethics of Coercion in Mass Casualty Medicine, Griffin Trotter explores these fundamental questions with skepticism, debunking myths in pursuit of an elusive ethical balance between individual liberties and public security. Through real-life and hypothetical case studies, Trotter discusses when forced compliance is justified and when it is not, how legitimate force should be exercised and implemented, and what societies can do to protect themselves against excessive coercion. The guidelines that emerge are both practical and practicable. Drawing on core concepts from bioethics, political philosophy, public health, sociology, and medicine, this timely book lays the groundwork for a new vision of official disaster response based on preventing and minimizing the need for coercive action.
A critical review of the debate over the still-hypothetical possibility of prenatal intervention by parents to select the sexual orientation of their children.
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.