: President Clinton's charge to the Advisory Committee on Human Radiation Experiments included the identification of ethical and legal standards for evaluating government-sponsored radiation experiments conducted during the Cold War. In this paper, we review the traditional account of the history of American research ethics, and then highlight and explain the significance of a number of the Committee's historical findings as they relate to this account. These findings include both the national defense establishment's struggles with legal and insurance issues concerning (...) human experiments, and the medical profession's perspective on human experimentation in the years following the Nuremberg Medical Trials. We conclude that the Committee's work both enriches the traditional view of the history of research ethics and opens important new areas for study. (shrink)

Fifty years ago, Henry Knowles Beecher published his essay on clinical research ethics in the New England Journal of Medicine. The culmination of more than a decade and a half’s rumination and reflection on the use of patients and “captive populations” in research, Beecher’s 1966 article understandably casts a large shadow in American bioethics. In 1976, the Institute of Society, Ethics and the Life Sciences established the Henry Knowles Beecher Award for Contributions to Ethics and the Life Sciences and named (...) the Harvard professor as the first recipient of the Award. “It is unusual for a researcher,” Daniel Callahan explained, on behalf of the Board of Directors of the... (shrink)

On September 23, 1949, President Harry Truman announced that the Soviet Union had successfully detonated an atomic bomb. The news that the Soviet Union had done this came as little surprise to a number of American scientists and to some members of the intelligence community who had predicted that the Soviets would quickly acquire this advanced weapons technology. But for many Americans this news was disturbing. Truman’s announcement was taken up by, among others, a young Baptist evangelist named Billy Graham. (...) Opening a tent revival in Los Angeles just two days after the President’s report, Graham preached how the news of the Soviet bomb test had “startled the world” and launched an “arms race unprecedented in the history of the world.” President Truman, he informed his listeners, said that we “must be prepared for any eventuality at any hour….” Perhaps even more ominously he asked the crowd, “Do you know the area that is marked out for the enemy’s first atomic bomb? New York! Secondly, Chicago; and thirdly, the city of Los Angeles!” It was not only evangelical preachers who foresaw catastrophic implications from a growing arsenal of atomic weapons. (shrink)

This article looks at the context of research in treating burns at the dawn of the atomic age. Funded by the Army and other defense agencies, burn research increased as concerns over an atomic attack on an American city intensified.

Conventional wisdom and commonsense morality tend to take the integrity of persons for granted. But for people in systematically unjust societies, self-respect and human dignity may prove to be impossible dreams.Susan Babbitt explores the implications of this insight, arguing that in the face of systemic injustice, individual and social rationality may require the transformation rather than the realization of deep-seated aims, interests, and values. In particular, under such conditions, she argues, the cultivation and ongoing exercise of moral imagination is (...) necessary to discover and defend a more humane social vision. Impossible Dreams is one of those rare books that fruitfully combines discourses that were previously largely separate: feminist and antiracist political theory, analytic ethics and philosophy of mind, and a wide range of non-philosophical literature on the lives of oppressed peoples around the world. It is both an object lesson in reaching across academic barriers and a demonstration of how the best of feminist philosophy can be in conversation with the best of “mainstream” philosophy—as well as affect the lives of real people. (shrink)

Public bioethics bodies are used internationally as institutions with the declared aims of facilitating societal debate and providing policy advice in certain areas of scientific inquiry raising questions of values and legitimate science. In the United States, bioethical experts in these institutions use the language of consensus building to justify and define the outcome of the enterprise. However, the implications of public bioethics at science-policy boundaries are underexamined. Political interest in such bodies continues while their influence on societal consensus, public (...) debate, and science policy remains ambiguous. This article presents a theoretical discussion of public bioethics bodies as boundary organizations and examines them in terms of relationship to the moral and cognitive authority of science and other forms of expertise, mechanisms for public participation in controversial science policy, and the deployment of consensus models. The theoretical discussion is examined in the case of the U.S. Human Embryo Research Panel. (shrink)

While parents have traditionally provided proxy consent for minors to participate in research, this has proven inadequate for adolescents who are mentally and emotionally capable of making their own decisions. Research has proven that even young children, and certainly most adolescents, are developmentally prepared to make such decisions for themselves. The author challenges the assumption that both consent and assent are static concepts, and proposes that a sliding scale of competence be created to ascertain the adolescent's comprehension of the proposed (...) research by shifting the burden of proof to those who believe a particular adolescent is unable to provide informed consent. (shrink)

Background Dynamic consent has been proposed as a process through which participants and patients can gain more control over how their data and samples, donated for biomedical research, are used, resulting in greater trust in researchers. It is also a way to respond to evolving data protection frameworks and new legislation. Others argue that the broad consent currently used in biobank research is ethically robust. Little empirical research with cohort study participants has been published. This research investigated the participants’ opinions (...) of adding a dynamic consent interface to their existing study. Methods Adult participants in the Extended Cohort for E-health, Environment and DNA longitudinal cohort study who are members of the EXCEED Public and Participant Engagement Group were recruited. Four focus groups were conducted and analysed for thematic content. Discussion topics were derived from a review of the current literature on dynamic consent. Results Participants were in favour of many aspects of a dynamic consent interface, such as being able to update their information, add additional data to their records and choose withdrawal options. They were supportive provided it was simple to use and not intrusive. Participants expressed a markedly high level of trust in the study and its investigators and were unanimously happy with their current participation. No strong support was found for adding a dynamic consent interface to EXCEED. Conclusions Trust in the study researchers was the strongest theme found. Openness and good data security were needed to retain their trust. While happy to discuss dynamic consent, participants were satisfied with the current study arrangements. There were indications that changing the study might unnecessarily disturb their trust. This raised the question of whether there are contexts where dynamic consent is more appropriate than others. This study was limited by the small number of participants who were committed to the study and biased towards it. More research is needed to fully understand the potential impact of adding a dynamic consent interface to an existing cohort study. (shrink)

Re-consent in research, the asking for a new consent if there is a change in protocol or to confirm the expectations of participants in case of change, is an under-explored issue. There is little clarity as to what changes should trigger re-consent and what impact a re-consent exercise has on participants and the research project. This article examines applicable policy statements and literature for the prevailing arguments for and against re-consent in relation to longitudinal cohort studies, tissue banks and biobanks. (...) Examples of re-consent exercises are presented, triggers and non-triggers for re-consent discussed and the conflicting attitudes of commentators, participants and researchers highlighted. We acknowledge current practice and argue for a greater emphasis on ‘responsive autonomy,’ that goes beyond a one-time consent and encourages greater communication between the parties involved. A balance is needed between respecting participants' wishes on how they want their data and samples used and enabling effective research to proceed. (shrink)

The American Medical Association enacted its Code of Ethics in 1847, the first such national codification. In this volume, a distinguished group of experts from the fields of medicine, bioethics, and history of medicine reflect on the development of medical ethics in the United States, using historical analyses as a springboard for discussions of the problems of the present, including what the editors call "a sense of moral crisis precipitated by the shift from a system of fee-for-service medicine to a (...) system of fee-for-system medicine, better known as 'managed care.'" The authors begin with a look at how the medical profession began to consider ethical issues in the 1800s and subsequent developments in the 1900s. They then address the sociological, historical, ethical, and legal aspects of the practice of medicine. Later chapters discuss current and future challenges to medical ethics and professional values. Appendixes display various versions of the AMA's Code of Ethics as it has evolved over time. Contributors: George J. Annas, J.D., M.P.H., Arthur Isak Applbaum, Ph.D., Robert B. Baker, Ph.D., Chester R. Burns, M.D., Ph.D., Arthur L. Caplan, Ph.D., Alexander Morgan Capron, J.D., Christine K. Cassel, M.D., Linda L. Emanuel, M.D., Ph.D., Eliot L. Freidson, Ph.D., Albert R. Jonsen, Ph.D., Stephen R. Latham, J.D., Ph.D., Susan E. Lederer, Ph.D., Florencia Luna, Ph.D., Edmund D. Pellegrino, M.D., Charles E. Rosenberg, Ph.D., Mark Siegler, M.D., Rosemary A. Stevens, Ph.D., Robert M. Tenery, Jr., M.D., Robert M. Veatch, Ph.D., John Harley Warner, Ph.D., Paul Root Wolpe, Ph.D. (shrink)

Where research was once strictly confined to one laboratory or office, investigators now widely share and compare their plans, analyses, and results. With the advent of genomic knowledge, researchers are seeking to understand the genetics and genomics of complex human disease. They are combining their efforts into international consortia in order to take on problems that face individuals around the world, such as cancer and malaria — problems that are too large to solve by one country alone. These consortia bring (...) together diverse research groups from different parts of the world to focus on a common goal. Their projects may all focus on one disease or condition, but examine it from different perspectives and share the newly gained information with each other and the wider scientific community. (shrink)

I offer a novel interdisciplinary approach to understanding the communicative task of listening, which is under-theorised compared to its more conspicuous counterpart, speech. By correlating a Rylean view of mental actions with a virtue ethical framework, I show listeners’ internal activity as a morally relevant feature of how they treat people. The listener employs a policy of responsiveness in managing the extent to which they allow a speaker's voice to be centred within their more effortful, engaged attention. A just listener's (...) policy of responsiveness avoids unwarrantedly dismissing speakers’ messages on the basis of peripheral attention alone. (shrink)

By definitively establishing that racism has broad implications for how the entire field of philosophy is practiced -- and by whom -- this powerful and ...

Susan Babbitt dissects a common moral perspective for judging importance which she calls 'moral imagination.' In order to explain ourselves, and to recognize in others, what we often already perceive intuitively to be right or good, we instinctively create a story as a framework. She argues that we intentionally create stories which appear artless or chaotic, something capable of imperfection. This allows the story-maker to eventually deviate if he or she chooses, without a loss of hope, even if that (...) direction and goal may not yet be able to be fully articulated or defended. (shrink)