There is little information about the content of ethics consultations in pediatrics. We sought to describe the reasons for consultation and ethical principles addressed during EC in pediatrics through retrospective review and directed content analysis of EC records at St. Jude Children's Research Hospital. Patient-based EC were highly complex and often involved evaluation of parental decision making, particularly consideration of the risks and benefits of a proposed medical intervention, and the physician's fiduciary responsibility to the patient. Nonpatient consultations provided guidance (...) in the development of institutional policies that would broadly affect patients and families. This is one of the few existing reviews of the content of pediatric EC and indicates that the distribution of ethical issues and reasons for moral distress are different than with adults. Pediatric EC often facilitates complex decision making among multiple stakeholders, and further prospective research is need.. (shrink)

Genomic sequencing is becoming more common both in clinical practice and as a routine aspect of much research. Over the last 15 years there has been ongoing discussion about the implications of gen...

Volume 19, Issue 10, October 2019, Page 97-98.

As medicine and science advance, new ethical questions emerge. Over time, deliberation and analysis result in a somewhat settled approach to a problem. Often the settled approach is based on group...

As part of the regulatory review process, both the Food and Drug Administration and Office for Human Research Protections (U.S. Department of Health and Human Services [HHS]...

Clinical research ethics consultation has emerged in the last 15 years as a service to those involved in the conduct of clinical research who face challenging issues for which more than one course of action may be justified. To respond to a growing field and need for opportunities to share knowledge and experience, the Clinical Research Ethics Consultation Collaborative, established in 2014, holds monthly webinars for its 90 members to present their most challenging cases to each other and engage in (...) substantive discussion. Every year, the group selects the four most interesting cases with accompanying commentaries for publication in the American Journal of Bioethics. This timely book brings together these cases and commentaries under a range of common themes for the first time, creating a permanent collection in book format that encourages and supports readers to gain a better understanding of the ethical challenges that they may face, and providing them with a convenient and reflective resource to reference in their own deliberations. Key Features- Comprehensive collection of cases and commentaries, chosen to reflect the range of issues faced by clinical researchers and oversight committees and illustrate the diversity of analysis that can arise. Supplemented by short introductions to each section. Focus on ethical rather than regulatory issues. Essential Reading for graduate students in bioethics and post-doctoral bioethics fellows, and useful for all participants in training grants that are funded by either NIH or NSF Presenting challenging cases to stimulate reflection, the book provides invaluable guidance to clinicians in training and in practice and to investigators, bioethics consultants, regulators, and oversight bodies. (shrink)

Volume 20, Issue 10, October 2020, Page 82-83.

Volume 20, Issue 4, May 2020, Page 111-113.

Volume 19, Issue 11, November 2019, Page 39-41.

Informed Consent: What Must Be Disclosed and What Must Be Understood seeks to challenge the “standard view” of consent. It seeks to do so by segregating the “disclosure function” from the “understa...

This case is about a study of burn patients that included a request to the IRB for a waiver of consent for perianal specimen collection–a request which ultimately was not approved by a reviewing IR...

The American Journal of Bioethics, Volume 12, Issue 10, Page 18-20, October 2012.

Volume 20, Issue 4, May 2020, Page 106-108.

The authors of this article are previous or current members of the Clinical Ethics Consultation Affairs (CECA) Committee, a standing committee of the American Society for Bioethics and Humanities (ASBH). The committee is composed of seasoned healthcare ethics consultants (HCECs), and it is charged with developing and disseminating education materials for HCECs and ethics committees. The purpose of this article is to describe the educational research and development processes behind our teaching materials, which culminated in a case studies book called (...) A Case-Based Study Guide for Addressing Patient-Centered Ethical Issues in Health Care (hereafter, the Study Guide). In this article, we also enumerate how the Study Guide could be used in teaching and learning, and we identify areas that are ripe for future work. (shrink)

The rapid development of COVID-19 vaccines in 2020 involved an unprecedented clinical research initiative. The case here involves a Phase I clinical trial of “second-generation” COVID-19 vaccines d...

Volume 20, Issue 4, May 2020, Page 102-103.

Volume 20, Issue 10, October 2020, Page 90-91.

For many rare diseases, the availability of effective interventions is limited or non-existent. In this context, clinical research evaluating emerging interventions may be the only potentially “the...

Volume 20, Issue 4, May 2020, Page 8-10.

While we agree with Fiester and Yuan (2023) that ethicists should not execute behavioral agreements in their role as clinical consultants along with many of the authors’ criticisms of such contract...

Volume 20, Issue 8, August 2020, Page 46-49.

Currently, there is consensus that community engagement and partnerships are essential to inclusive patient-centered clinical research. Yet there is variation about what it means to do this well an...

Mary Wollstonecraft's A Vindication of the Rights of Woman was a ground-breaking work of literature which still resonates in feminism and human rights movements of today.

Based on research conducted over the past two decades, this lecture examines how the feminist political economy perspective can aid us in understanding the experiences of two populations of African women: Zimbabwean women cross-border traders in South Africa and African immigrant women in the northeastern United States. Feminist political economy compels us to explore the impact of the current phase of globalization as well as the roles of intersectionality and agency in the lives of African women. This research stems from (...) fieldwork conducted in Harare and Bulawayo, Zimbabwe and Johannesburg and Cape Town, South Africa, as well as in metropolitan Boston and Philadelphia. Despite the many challenges that African migrant women face in these different venues, they continue to demonstrate much creativity and resilience and, in the process, they contribute to community development. (shrink)

Environmental education aims to affect environmental knowledge and attitude to ultimately induce pro-environmental behavior. Based on 247 upper elementary school students, we tested the impact of an outdoor-based earth education program on environmental knowledge and attitude with a pre-post design. Both outcome measures were Rasch scales. Environmental knowledge is a composite of 27 system, action, and effectiveness knowledge items, and environmental attitude is a composite of 13 evaluative statements and 11 self-reported behaviors about nature preservation. Our analysis revealed gains in (...) environmental knowledge and attitude. The convergence between knowledge and attitude increased significantly from pre- to post-program, and attitude played a significant role in knowledge acquisition. (shrink)

Using the Remember/Know procedure, we compared the impact of a reflective repetition by refreshing and a perceptual repetition on subjective experience during recognition memory. Participants read aloud words as they appeared on a screen. Critical words were presented once , immediately repeated , or followed by a dot signalling the participants to think of and say the just-previous word . In Experiments 1 and 2, Remember responses benefited from refreshing a word . In Experiment 2, this benefit disappeared when participants (...) had to refresh one of three active items. Perceptual repetition increased Remember responses in Experiment 1, but not in Experiment 2 regardless of whether participants had just previously seen 1- or 3-items. These findings indicate that under some circumstances, reflective and perceptual repetition may have different consequences for later subjective experience during remembering, suggesting differences in their underlying functional mechanisms. (shrink)

Recently the relevance of the philosophy of Martin Heidegger has been critiqued in nursing literature. However, this critique is based primarily upon an appropriation of Heidegger that does not reflect an understanding of meaning as grounded in temporality. Therefore, this paper aims to (1) explicate Heidegger's grounding of meaning, (2) briefly contrast Heidegger's and Husserl's notions of the origin of meaning, (3) describe how Heidegger was first introduced to nursing, and (4) illustrate through examples from a research study how the (...) philosophy of Heidegger might inform the phenomenological researcher. (shrink)

From certain sorts of premise, individuals reliably infer invalid conclusions. Two Experiments investigated a possible cause for these illusory inference: Reasoners fail to think about what is false. In Experiment 1, 24 undergraduates drew illusory and control inferences from premises based on exclusive disjunctions (“or else”). In one block, participants were instructed to falsify the premises of each illusory and control inference before making the inference. In the other block, participants did not receive these instructions. There were more correct answers (...) for illusory disjunctions whose premises had been falsified than there were for illusory disjunctions that had not been falsified. A second Experiment introduced illusory inferences in a real world context that accentuated falsification of premises. Accuracy also improved. Knowledge of how to falsify premises and to consider their implications for true premises transferred to a new problem introduced at the end of the Experiment without the falsification instruction. The participants' ratings of the difficulty of the inferences showed that they did not err simply because illusory inferences are perceived to be more difficult than control problems. The model theory predicts these results because it postulates that the limitations of working memory preclude the representation of false information. (shrink)

Scientists of the Human Genome Project tend to rely on three metaphors to describe their work, each of which implicitly tells much the same story. Whether they claim to interpret the ultimate "book," to fix a flawed "machine," or to map a mysterious "wilderness," they invariably cast the researcher as one who dominates and exploits the Other. This essay, which explores the ways such a story conflicts with feminist values, proposes an alternative.

This article examines strategies used by human rights advocates to lobby for policy at intergovernmental organizations. We suggest that the literatures’ central questions are about how best to organize, connect, and communicate, which are usually seen through theory on transnational advocacy networks and framing. We add that these questions should be seen as gendered, given the continued male dominance within diplomatic corps. With unusual access to their strategy, we conduct a case study of one advocate’s successful campaign to get the (...) United Nations to adopt a country-specific resolution. Like others, we found this campaigning relies upon the use of networks to overcome formal obstacles to access, human rights language to frame the problem, analysis of tally sheets of member states’ voting, and in-person lobbying. We also point out strategies key to their success that are not usually noticed by scholars, such as the gendered dynamics that get advocates in the door. (shrink)