The article is a report on the World Social Forum held in Montreal, Canada in August of 2016. It reports on philosophical ideas explored by conference participants such as Boaventura de Sousa Santos, Mireille Fanon-Mendes, Helen Lauer, and Immanuel Wallerstein. It also sums up positions articulated by activists such as Brazilians Chico Whitaker and Pedro Fuentes, and reports on some of the largest activities and highlights of the gathering.

In recent years, major disasters have figured prominently in the media. While corporate response to disasters may have raised corporate philanthropy to a new level, it remains an understudied phenomenon. This article draws on comparative research on corporate social responsibility (CSR) and corporate philanthropy to explore the geography of corporate philanthropic disaster response. The study analyzes donation announcements made by Fortune Global 500 firms from North America, Europe and Asia to look for regional patterns across three recent disasters: the South (...) Asian Tsunami, Hurricane Katrina, and the Kashmiri earthquake. The results reveal inter-regional differences in the overall likelihood of donations and in their cash value, in addition to the identification of home-region- and local presence effects. Implications for researchers and practitioners are discussed. (shrink)

Antón Donoso was a teacher and scholar devoted to studying North American, Latin American and Iberian philosophy, along with Marxism from the Soviet Union and Eastern Europe. He explored the works of Jose Ortega y Gasset, Julian Marais, John Dewey, Miguel de Unamuno and others. He was active in philosophical societies that promoted the study of Latin American philosophy, and often wrote review articles that introduced English-speakers to the key new ideas from Brazil, Mexico and Argentina. In a series of (...) journal articles he traced the influence of philosophies across continents, such as Dewey’s influence in Iberia and South America. (shrink)

Stigma can influence the prevention and identification of fetal alcohol spectrum disorder, a leading cause of developmental delay in North America. Understanding the effects of public health practices and policies on stigma is imperative. We reviewed social science and biomedical literatures to understand the nature of stigma in FASD and its relevance from an ethics standpoint in matters of health practices and policies. We propose a descriptive model of stigma in FASD and note current knowledge gaps; discuss the ethical implications (...) of stigma based on two distinct criteria ; and describe two cases and the concerns associated with inadvertent stigmatization by public health initiatives for FASD. We recommend further empirical and ethical analyses to examine whether public health policies and practices inadvertently stigmatize and impact the success of public health initiatives and programs for FASD. (shrink)

I have a painfully vivid memory of performing the Venezuelan choreographer Vincente Nebrada’s ballet Pentimento.After graduating from high school at age 15 and before entering college, I spent a number of years working as a professional ballet dancer with North Carolina Dance Theatre , among other companies. I was a new member of North Carolina Dance Theatre, and although the company had presented the piece on a number of occasions, this was the first time the director was watching from the (...) audience rather than the wings. In the middle of a pas de deux, I choked big time and blanked out on the choreography; try as I may, I could not remember a single step. My partner, who had been with the company for years, knew what was going on and manipulated my limbs until something clicked and I was able to find the choreography again. Following the performance, when we gathered onstage for notes, the director was so appalled that the only comme .. (shrink)

This book challenges traditional approaches to research ethics based on moral principles and advocates a new, relationship-based paradigm for research ethics. The book begins with an explanation of the editors' reservations about the principalist approach pervading current regulations governing research. The editors' concerns are three-fold. First, they cite the continuing errors and abuse of human subjects of research in America despite federal regulations. Secondly, they argue that American regulations, grounded in the principles of autonomy, beneficence and justice, should not be (...) applied in all cultures. Finally, the editors argue that regulation is not the answer to all ethical questions concerning human subject research. In contrast with traditional approaches, the relationships paradigm emphasises relationships, interactions, power, responsibility and contextual and historical considerations in examining moral issues. This book has a case-plus-commentaries approach. Six cases, from …. (shrink)

This paper analyses the activities of five organizations shaping the debate over the global governance of genome editing in order to assess current approaches to public engagement (PE). We compare the recommendations of each group with its own practices. All recommend broad engagement with the general public, but their practices vary from expert-driven models dominated by scientists, experts, and civil society groups to citizen deliberation-driven models that feature bidirectional consultation with local citizens, as well as hybrid models that combine elements (...) of both approaches. Only one group practices PE that seeks community perspectives to advance equity. In most cases, PE does little more than record already well-known views held by the most vocal groups, and thus is unlikely to produce more just or equitable processes or policy outcomes. Our exploration of the strengths, weaknesses, and possibilities of current forms of PE suggests a need to rethink both “public” and “engagement.”. (shrink)

In this target article by Morain and Largent (2023), the authors focus on an investigator’s duty to patient-subjects specifically regarding incidental or collateral findings within the context of e...

We examine two different descriptions of the behavioral functions of the hippocampal system. One emphasizes spatially organized behaviors, especially those using cognitive maps. The other emphasizes memory, particularly working memory, a short-term memory that requires iexible stimulus-response associations and is highly susceptible to interference. The predictive value of the spatial and memory descriptions were evaluated by testing rats with damage to the hippocampal system in a series of experiments, independently manipulating the spatial and memory characteristics of a behavioral task. No (...) dissociations were found when the spatial characteristics of the stimuli to be remembered were changed; lesions produced a similar deficit in both spatial and nonspatial test procedures, indicating that the hippocampus was similarly involved regardless of the spatial nature of the task. In contrast, a marked dissociation was found when the memory requirements were altered. Rats with lesions were able to perform accurately in tasks that could be solved exclusively on the basis of reference memory. They performed at chance levels and showed no signs of recovery even with extensive postoperative training in tasks that required working memory. In one experiment all the characteristics of the reference memory and working memory procedures were identical except the type of memory required. Consequently, the behavioral dissociation cannot be explained by differences in attention, motivation, response inhibition, or the type of stimuli to be remembered. As a result of these experiments we propose that the hippocampus is selectively involved in behaviors that require working memory, irrespective of the type of material that is to be processed by that memory. (shrink)

The Covid‐19 pandemic has concentrated bioethics attention on the “lifeboat ethics” of rationing and fair allocation of scarce medical resources, such as testing, intensive care unit beds, and ventilators. This focus drives ethics resources away from persistent and systemic problems—in particular, the structural injustices that give rise to health disparities affecting disadvantaged communities of color. Bioethics, long allied with academic medicine and highly attentive to individual decision‐making, has largely neglected its responsibility to address these difficult “upstream” issues. It is time (...) to broaden our teaching, research, and practice to match the breadth of the field in order to help address these significant societal inequities and unmet health needs. (shrink)

The current study extends previous literature regarding the effectiveness of learning about academic integrity through peer instruction by assessing the impact of a peer instructional approach for actual and perceived learning gains over time. One trained residence don provided one interactive 30-min presentation covering four major aspects of academic integrity and misconduct to groups of undergraduate students. In total, 192 participants attended the workshop and were surveyed for their knowledge of academic integrity immediately before the presentation, immediately after the presentation, (...) and after a four week delay. Perceptions regarding the presentation also were assessed. Consistent with previous literature, results indicate perceived learning gains and preference for having an interactive presentation delivered by a residence don. In addition, actual gains in knowledge were found immediately after the presentation and gains remained evident over a four-week delay. Outcomes suggest that peer instruction is a viable and effective approach for educating students about academic integrity. (shrink)

Pragmatic clinical trials offer important benefits, such as generating evidence that is suited to inform real-world health care decisions and increasing research efficiency. However, PCTs also present ethical challenges. One such challenge involves the management of information that emerges in a PCT that is unrelated to the primary research question, yet may have implications for the individual patients, clinicians, or health care systems from whom or within which research data were collected. We term these findings as?pragmatic clinical trial collateral findings,? (...) or?PCT-CFs?. In this article, we explore the ethical considerations associated with the identification, assessment, and management of PCT-CFs, and how these considerations may vary based upon the attributes of a specific PCT. Our purpose is to map the terrain of PCT-CFs to serve as a foundation for future scholarship as well as policy-making and to facilitate careful deliberation about actual cases as they occur in practice. (shrink)

Objectives To determine the role played by law in medical specialists9 decision-making about withholding and withdrawing life-sustaining treatment from adults who lack capacity, and the extent to which legal knowledge affects whether law is followed. Design Cross-sectional postal survey of medical specialists. Setting The two largest Australian states by population. Participants 649 medical specialists from seven specialties most likely to be involved in end-of-life decision-making in the acute setting. Main outcome measures Compliance with law and the impact of legal knowledge (...) on compliance. Results 649 medical specialists (of 2104 potential participants) completed the survey (response rate 31%). Responses to a hypothetical scenario found a potential low rate of legal compliance, 32% (95% CI 28% to 36%). Knowledge of the law and legal compliance were associated: within compliers, 86% (95% CI 83% to 91%) had specific knowledge of the relevant aspect of the law, compared with 60% (95% CI 55% to 65%) within non-compliers. However, the reasons medical specialists gave for making decisions did not vary according to legal knowledge. Conclusions Medical specialists prioritise patient-related clinical factors over law when confronted with a scenario where legal compliance is inconsistent with what they believe is clinically indicated. Although legally knowledgeable specialists were more likely to comply with the law, compliance in the scenario was not motivated by an intention to follow law. Ethical considerations (which are different from, but often align with, law) are suggested as a more important influence in clinical decision-making. More education and training of doctors is needed to demonstrate the role, relevance and utility of law in end-of-life care. (shrink)

In a recent article in The Journal of Clinical Ethics, David Wendler argues that worries about the therapeutic misconception (TM) are not only misconceived, but detract from the larger agenda of a proper informed consent for subjects involved in clinical research. By contrast, we argue that Wendler mischaracterizes those who support TM research, and that his arguments are fragmentary, often illogical, and neglect a critical difference between clinical care and clinical research. A clear explanation about the chief aim of research (...) is, in fact, what gives the other elements in a consent process their meaning. We argue that informed consent must be both trial-specific and context-sensitive, and that concern about the TM is needed now more than ever. (shrink)

Over several decades, ethics and law have been applied to medical education and practice in a way that reflects the continuation during the twentieth century of the strong distinction between facts and values. We explain the development of applied ethics and applied medical law and report selected results that reflect this applied model from an empirical project examining doctors’ decisions on withdrawing/withholding treatment from patients who lack decision-making capacity. The model is critiqued, and an alternative “constitutive” model is supported on (...) the basis that medicine, medical law, and medical ethics exemplify the inevitable entanglement of facts and values. The model requires that ethics and law be taught across the medical education curriculum and integrated with the basic and clinical sciences and that they be perceived as an integral component of medical evidence and practice. Law, in particular, would rank as equal in normative authority to the relevant clinical scientific “facts” of the case, with graduating doctors having as strong a basic command of each category as the other. The normalization of legal knowledge as part of the clinician’s evidence base to be utilized in practice may provide adequate consolation for clinicians who may initially resent further perceived incursions on their traditional independence and discretion. (shrink)

It has been hypothesized that postperformance memory gaps occur in highly skilled individuals because experts generally perform their skills without conscious attention. In contrast, we hypothesize that such memory gaps may occur when performers focus so intently on their unfolding actions that their ongoing attention interferes with long-term memory formation of what was previously attended to, or when performers are highly focused on aspects of their bodily skills that are not readily put into words. In neither case, we argue, does (...) performance proceed automatically yet both situations, we suggest, may lead to an inability to recollect performance. (shrink)

Research shows that the physician’s personal attributes and social characteristics have a strong association with their end-of-life decision making. Despite efforts to increase patient, family and surrogate input into EOL decision making, research shows the physician’s input to be dominant. Our research finds that physician’s social values, independent of religiosity, have a significant association with physician’s tendency to withhold or withdraw life sustaining, EOL treatments. It is suggested that physicians employ personal social values in their EOL medical coping, because they (...) have to cope with existential dilemmas posed by the mystery of death, and left unresolved by medical decision making mechanisms such as advanced directives and hospital ethics committees. (shrink)

Ethically challenging situations routinely arise in the course of illness and healthcare. However, very few studies have surveyed patients and family members about their experiences with ethically challenging situations. To address this gap in the literature, we surveyed patients and family members at three hospitals. We conducted a content analysis of their responses to open-ended questions about their most memorable experience with an ethical concern for them or their family member. Participants described 219 unique ethical experiences that spanned many of (...) the prevailing themes of bioethics, including the patient-physician relationship, end-of-life care, decision-making capacity, healthcare costs, and genetic testing. Participants focused on relational issues in the course of experiencing illness and receiving medical care and concerns regarding the patient-physician encounters. Many concerns arose outside of a healthcare setting. These data indicate areas for improvement for healthcare providers but some concerns may be better addressed outside of the traditional healthcare setting. (shrink)

Respect and dignity are central to moral life, and have a particular importance in health care settings such as the intensive care unit (ICU). We conducted 15 semistructured interviews with 21 participants during an ICU admission to explore the definition of, and specific behaviors that demonstrate, respect and dignity during treatment in the ICU. We transcribed interviews and conducted thematic qualitative analysis. Seven themes emerged that focused on what it means to be treated with respect and/or dignity: treated as a (...) person; Golden Rule; acknowledgement; treated as family/friend; treated as an individual; treated as important/valuable; and treated as equal. Participants described particular behaviors or actions that were considered related to demonstrating treatment with respect and dignity: listening; honesty/giving information; attention to body/modesty/appearance; caring/bedside manner; patient and family as an information source; attention to pain; and responsiveness. These behaviors provide a framework for improving experiences with care in the ICU. (shrink)

_BMC Medical Ethics_ is an open access journal publishing original peer-reviewed research articles in relation to the ethical aspects of biomedical research and clinical practice, including professional choices and conduct, medical technologies, healthcare systems and health policies. _BMC __Medical Ethics _is part of the _BMC_ series which publishes subject-specific journals focused on the needs of individual research communities across all areas of biology and medicine. We do not make editorial decisions on the basis of the interest of a study or (...) its likely impact. Studies must be scientifically valid; for research articles this includes a scientifically sound research question, the use of suitable methods and analysis, and following community-agreed standards relevant to the research field. Specific criteria for other article types can be found in the submission guidelines. _BMC series - open, inclusive and trusted_. (shrink)

Despite wide recognition of the importance of treating patients with respect and dignity, little is known about what constitutes treatment in this regard. The intensive care unit (ICU) is a unique setting that can pose specific threats to treatment with respect and dignity owing to the critical state of patients, stress and anxiety amongst patients and their family members, and the highly technical nature of the environment. In attempt to understand various stakeholders’ perspectives of treatment with respect and dignity, patients (...) and family members were interviewed, a wide range of health care professionals participated in focus groups, and third party observers took field notes of interactions in the ICU. This paper compares and contrasts the data that were generated using these different methods. Triangulating the data in this way contributes to a more complete and nuanced understanding of treatment with respect and dignity in the ICU. (shrink)

The principles of the 3Rs—replacement, refinement, and reduction—strongly shape discussion of methods for performing more humane animal research and the regulation of this contested area of technoscience. This special issue looks back to the origins of the 3Rs principles through five papers that explore how it is enacted and challenged in practice and that develop critical considerations about its future. Three themes connect the papers in this special issue. These are the multiplicity of roles enacted by those who use and (...) care for animals in research, the distribution of “feelings that matter” across species and spaces of laboratory animal practice, and the growing importance of “cultures of care” in animal research. (shrink)

The informed consent process for genetic testing does not commonly address preferences regarding disclosure of results in the event of the patient's death. Adults being tested for familial colorectal cancer were asked whether they want their exome sequencing results disclosed to another person in the event of their death prior to receiving the results. Of 78 participants, 92% designated an individual and 8% declined to. Further research will help refine practices for informed consent.

Background Currently there is increasing recognition of the need for research in developing countries where disease burden is high. Understanding the role of local factors is important for undertaking ethical research in developing countries. We explored factors relating to information and communication during the process of informed consent, and the approach that should be followed for gaining consent. The study was conducted prior to a family-based genetic study among people with podoconiosis (non-filarial elephantiasis) in southern Ethiopia. Methodology/Principal Findings We adapted (...) a method of rapid assessment validated in The Gambia. The methodology was entirely qualitative, involving focus-group discussions and in-depth interviews. Discussions were conducted with podoconiosis patients and non-patients in the community, fieldworkers, researchers, staff of the local non-governmental organisation (NGO) working on prevention and treatment of podoconiosis, and community leaders. We found that the extent of use of everyday language, the degree to which expectations of potential participants were addressed, and the techniques of presentation of information had considerable impact on comprehension of information provided about research. Approaching podoconiosis patients via locally trusted individuals and preceding individual consent with community sensitization were considered the optimal means of communication. Prevailing poverty among podoconiosis patients, the absence of alternative treatment facilities, and participants' trust in the local NGO were identified as potential barriers for obtaining genuine informed consent. Conclusions Researchers should evaluate the effectiveness of consent processes in providing appropriate information in a comprehensible manner and in supporting voluntary decision-making on a study-by-study basis. (shrink)

There is growing evidence that a sense of meaning in life may emerge, in part, from the social relationships that people maintain. But it is not clear how the relationship between social ties and a sense of meaning might arise. The purpose of this study is to see if meaning in life is associated with three socially focused virtues: compassion, forgiveness of others, and providing social support to others. In the process, an effort is made to see if these social (...) virtues arise from social relationships in religious institutions. Two main findings emerge from a recent nationwide survey. First, people who are more compassionate, more forgiving, and who help others more often have a stronger sense of meaning in life. Second, individuals who receive more spiritual support from fellow church members are more likely to adopt these social virtues. The theoretical basis of these relationships is discussed. (shrink)

Treating patients and their family members with respect and dignity is a broadly accepted goal of health care. The work presented in this article is part of a larger project aimed at better understanding what constitutes treatment with respect and dignity in the ICU to improve the care that patients and family members receive in this regard. Direct observation was selected as one of the methods to facilitate this understanding because it provides the opportunity to see and document what actually (...) occurs during encounters among patients, their families, and clinicians. This article reports seven major thematic domains and many subthemes that together create a detailed account of the interpersonal and environmental components of treatment with respect and dignity. Attention to these components might enhance the experience and treatment of patients and family members. (shrink)

A goal of living as well as possible is central to practice and research with young adults living with home mechanical ventilation (HMV). Significant effort has been put into conceptualizing and measuring the quality of life (QOL) as a proxy for living well. Yet, dominant understandings of QOL have been influenced by normative, ableist, and biomedical discourses about what constitutes a good life that, when applied in practice and systems with those living with HMV, can contribute to exclusion and constrain (...) opportunities to live well. Inquiry into what certain understandings of living well can do is critical to opening up possibilities to reimagine living well with HMV. This paper draws on findings from a critical narrative inquiry that explored the experiences of five young adults (ages 18–40 years) living with HMV. Data were co‐constructed virtually through an initial interview and photo‐elicitation using participant‐generated photographs. A critical narrative analysis of participants' stories made visible the ideological effects of ableist, biomedical, and individualist discourses and how the young adults reproduced and resisted these dominant discourses. Their stories further opened up possibilities for nurses and other healthcare providers to see living well and QOL differently. (shrink)

Over the past decade, the number of clinical trials registered with the Food and Drug Administration has increased dramatically. The business of clinical research has become more diverse, involving academic institutions, clinician-researchers in community settings, pharmaceutical companies, and contract research organizations. This growth has been accompanied by increasing concerns about the ethical conduct of research. Much of this concern has been directed to procedural issues including institutional review board review, data monitoring, and informed consent forms. However, the protection of human (...) subjects cannot be achieved by relying solely on procedural safeguards. There are more nuanced issues related to recruitment and retention of subjects, and to the process of informed consent, that are generated during the interaction between study staff and subjects. It is only through an examination of these relationships that one can more fully define and understand the challenges of protecting subjects in research. (shrink)

The three important target articles make a strong case for regarding racism as a public health crisis. Each calls for advocacy by the bi...

Background: The factors influencing parents’ willingness to enroll their children in biobanks are poorly understood. This study sought to assess parents’ willingness to enroll their children, and their perceived benefits, concerns, and information needs under different consent and data-sharing scenarios, and to identify factors associated with willingness. Methods: This large, experimental survey of patients at the 11 eMERGE Network sites used a disproportionate stratified sampling scheme to enrich the sample with historically underrepresented groups. Participants were randomized to receive one of (...) three consent and data-sharing scenarios. Results: In total, 90,000 surveys were mailed and 13,000 individuals responded (15.8% response rate). 5737 respondents were parents of minor children. Overall, 55% (95% confidence interval 50–59%) of parents were willing to enroll their youngest minor child in a hypothetical biobank; willingness did not differ between consent and data-sharing scenarios. Lower educational attainment, higher religiosity, lower trust, worries about privacy, and attitudes about benefits, concerns, and information needs were independently associated with less willingness to allow their child to participate. Of parents who were willing to participate themselves, 25% were not willing to allow their child to participate. Being willing to participate but not willing to allow one’s child to participate was independently associated with multiple factors, including race, lower educational attainment, lower annual household income, public health care insurance, and higher religiosity. Conclusions: Fifty-five percent of parents were willing to allow their youngest minor child to participate in a hypothetical biobank. Building trust, protecting privacy, and addressing attitudes may increase enrollment and diversity in pediatric biobanks. (shrink)

It is simple enough to claim that academic research institutions ought to be trustworthy. Building the culture and taking the steps necessary to earn and preserve institutional trust are, however, complex processes. The experience motivating this special report—a request for the Center for Talented Youth at Johns Hopkins University to collaborate on research regarding the genetics of intelligence—illustrates how ensuring institutional trustworthiness can be in tension with a commitment to fostering research. In this essay, we explore the historical context for (...) biomedical research institutions like Johns Hopkins that have worked to build local community trust. In so doing, we consider how the example under focus in this special report can lead to greater consideration of how research institutions balance fostering trust with their other commitments. (shrink)