Background There is considerable variation in the functionality of bioethical services in different institutions and countries for children in hospital, despite new challenges due to increasing technology supports for children with serious illness and medical complexity. We aimed to understand how bioethics services address bioethical concerns that are increasingly encountered in paediatric intensive care. Methods A qualitative descriptive design was used to describe clinician’s perspectives on the functionality of clinical bioethics services for paediatric intensive care units. Clinicians who were members (...) of formal or informal clinical bioethics groups, or who were closely involved with the process of working through ethically challenging decisions, were interviewed. Interviews took place online. Resulting transcripts were analysed using thematic analysis. Results From 33 interviews, we identified four themes that described the functionality of bioethics services when a child requires technology to sustain life: striving for consensus; the importance of guidelines; a structure that facilitates a time-sensitive and relevant response; and strong leadership and teamwork. Conclusions Clinical bioethics services have the potential to expand their role due to the challenges brought by advancing medical technology and the increasing options it brings for treatment. Further work is needed to identify where and how bioethics services can evolve and adapt to fully address the needs of the decision-makers in PICU. (shrink)

Cherche à mettre en évidence les principes théoriques qui peuvent être au fondement de toute recherche ou réflexion en sociologie de la musique.

Much of the sustained attention on pandemic preparedness has focused on the ethical justification for plans for the “crisis” phase of a surge when, despite augmentation efforts, the demand for life...

Schizophrenia is a severe mental illness, which affects sense of identity. While the ability to have a coherent vision of the self relies partly on its reciprocal relationships with autobiographical memories, little is known about how memories ground “self-images” in schizophrenia. Twenty-five patients with schizophrenia and 25 controls were asked to give six autobiographical memories related to four self-statements they considered essential for defining their identity. Results showed that patients’ self-images were more passive than those of controls. Autobiographical memories underlying (...) self-images were less thematically linked to these self-images in patients. We also found evidence of a weakened sense of self and a deficient organization of autobiographical memories grounding the self in schizophrenia. These abnormalities may account for the poor cohesiveness of the self in schizophrenia. (shrink)

The goal of this paper is to review and describe the characteristics and outcomes of ethics consultations on a gastrointestinal oncology service and to identify areas for systems improvement and staff education. This is a retrospective case series derived from a prospectively-maintained database of the ethics consultation service at Memorial Sloan Kettering Cancer Center. The study analyzed all ethics consultations requested for patients on the gastrointestinal medical oncology service from September 2007 to January 2016. A total of 64 patients were (...) identified. The most common primary ethical issue was the DNR order, followed by medical futility. The most common contextual issues were dispute/conflict between staff and family, dispute/conflict intra-family, and cultural/ethnic/religious issues. The majority of ethical issues leading to consultation were resolved ; i.e., the patient, surrogate, and/or healthcare team followed the recommendation of the ethics consultant. 22% had a DNR order prior to the ethics consult and 69% had a DNR order after the consult. In this population of patients on a gastrointestinal oncology service, ethics consultations are most often called regarding patients with advanced cancers and the most common ethical conflicts arose between families and the health care team over goals of care at the end of life, specifically related to the DNR order and perceived futility of continued/escalation of treatment. Ethics consultations assisted with conflict resolution. Conflicts might be reduced with improved communication about prognosis and earlier end of life care planning. (shrink)

The purpose of this research report is twofold: First, we analyze a complex of attitudes about rape myths, adversarial sexual beliefs, and gender-role conservatism; and second, we evaluate the impact of rape-education intervention strategies on American college students' attitudes. Using the Solomon four-group design, we randomly assigned 14 classes of Sociology 101 students to three different treatment conditions: a live rape-education workshop, a video of the workshop, and a control group. We found significant gender differences in students' attitudes on all (...) the scales, with women being more knowledgeable about rape, less likely to blame the victim, and less accepting of adversarial sexual beliefs and gender-role conservatism. Most important, we found that within the limits of the study, rape-education intervention works in changing some attitudes about rape for both men and women students. We examine the impact of the different educational strategies and explore curricular implications, including the need to teach about rape within a feminist context. (shrink)

Schizophrenia is a severe mental illness affecting sense of identity. Autobiographical memory deficits observed in schizophrenia could contribute to this altered sense of identity. The ability to give a meaning to personally significant events is also critical for identity construction and self-coherence. Twenty-four patients with schizophrenia and 24 control participants were asked to recall five self-defining memories. We assessed meaning making in participants’ narratives and afterwards asked them explicitly to give a meaning to their memories . We found that both (...) spontaneous and cued meaning making were impaired in patients with schizophrenia. This impairment was correlated with executive dysfunctions and level of negative symptoms. Our results suggest that patients’ difficulties in drawing lessons about past experiences could contribute to explain the lack of coherence observed in their life trajectories and their impaired social adjustment abilities. Implications for psychotherapy are also discussed. (shrink)

The rural health context in the United States presents unique ethical challenges to its approximately 60 million residents, who represent about one quarter of the overall population and are distributed over three-quarters of the country’s land mass. The rural context is not only identified by the small population density and distance to an urban setting but also by a combination of social, religious, geographical, and cultural factors. Living in a rural setting fosters a sense of shared values and beliefs, a (...) strong work ethic, self-reliance, and a tendency for close-knit extended social structures where overlapping relationships are commonplace. (shrink)

The sexual abuse scandal in the Catholic Church captured headlines and mobilized public outrage in January 2002. But much of the commentary that immediately followed was reductionistic, focusing on single "causes" of clerical abuse such as mandatory celibacy, homosexuality, sexual repressiveness or sexual permissiveness, anti-Catholicism, and a decadent secular culture. _Predatory Priests, Silenced Victims: The Sexual Abuse Crisis and the Catholic Church_, a collection of groundbreaking articles edited by Mary Gail Frawley-O'Dea and Virginia Goldner, eschews such one-size-fits-all theorizing. In (...) its place, the abuse situation is explored in all its troubling complexity, as contributors take into account the experiences, respectively, of the victim/survivor, the abuser/perpetrator, and the bystander. Setting polemics to the side, _Predatory Priests, Silenced Victims_ provides a sober and sobering analysis of the interlacing historical, doctrinal, and psychological issues that came together in the sexual abuse scandal. It is mandatory reading for all who seek thoughtful, informed commentary on a crisis long in the making and yet to be resolved. (shrink)

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Background: Nurses and midwives have a professional obligation to promote health and prevent disease, and therefore they have an essential role to play in vaccination. Despite this, some nurses and midwives have been found to take an anti-vaccination stance and promulgate misinformation about vaccines, often using Facebook as a platform to do so. Research question: This article reports on one component and dataset from a larger study – ‘the positives, perils and pitfalls of Facebook for nurses’. It explores the specific (...) issue of nurses and midwives who take an anti-vaccination stance, deemed to be unprofessional by crossing professional boundaries and by providing medical information on Facebook that is not within their scope of practice. Participants: Data were collected via an online worldwide survey from nurse and midwife participants, distributed and ‘snowballed’ through relevant nursing and midwifery groups on Facebook. In total, 1644 Registered Nurses and Midwives, and Enrolled Nurses worldwide attempted the online survey. There were 1100 completed surveys and 54 partially completed surveys. Semi-structured interviews were also conducted online using Skype® with 17 participants in Australia. Ethical considerations: Ethical processes and procedures have been adhered to relating to privacy, confidentiality and anonymity of the participants. Findings/results: A mixed-methods approach was used, including descriptive and content analysis of the quantitative survey data and thematic analysis of the qualitative interview data. The main theme ‘blurred boundaries’ was generated, which comprised three sub-themes: ‘follow the science, ‘abuse of power and erosion of trust’ and ‘the moral and ethical responsibility to safeguard public health’. The results offer an important and unique understanding of how nurses and midwives interpret the conduct of fellow health professionals as unprofessional and crossing the professional boundary if they used Facebook to promulgate anti-vaccination messages and/or give medical advice online. Conclusion: There are many positives and negatives for nurses and midwives associated with using Facebook for personal and professional communication, which is in keeping with the results of the larger study from which this article is taken. Professional behaviour is a key theme in the larger research as is the ethical construct of ‘every act has a consequence’; however, in this article, the theme ‘blurred boundaries’ offers an overall understanding of how nurses and midwives interpret the behaviour of their colleagues who espouse anti-vaccination sentiment and/or give medical advice online that is outside their scope of practice and education. (shrink)

Visual analytics is a new interdisciplinary field of study that calls for a more structured scientific approach to understanding the effects of interaction with complex graphical displays on human cognitive processes. Its primary goal is to support the design and evaluation of graphical information systems that better support cognitive processes in areas as diverse as scientific research and emergency management. The methodologies that make up this new field are as yet ill defined. This paper proposes a pathway for development of (...) visual analytics as a translational cognitive science that bridges fundamental research in human/computer cognitive systems and design and evaluation of information systems in situ. Achieving this goal will require the development of enhanced field methods for conceptual decomposition of human/computer cognitive systems that maps onto laboratory studies, and improved methods for conducting laboratory investigations that might better map onto real-world cognitive processes in technology-rich environments. (shrink)

Nearly two hundred years ago, Mary Wollstonecraft wrote what is considered to be the first major work of feminist political theory: A Vindication of the Rights of Women . Much has been written about this work, and about Wollstonecraft as the intellectual pioneer of feminism, but the actual substance and coherence of her political thought have been virtually ignored. Virginia Sapiro here provides the first full-length treatment of Wollstonecraft's political theory. Drawing on all of Wollstonecraft's works and treating them (...) thematically rather than sequentially, Sapiro shows that Wollstonecraft's ideas about women's rights, feminism, and gender are elements of a broad and fully developed philosophy, one with significant implications for contemporary democratic and liberal theory. The issues raised speak to many current debates in theory, including those surrounding interpretation of the history of feminism, the relationship between liberalism and republicanism in the development of political philosophy, and the debate over the canon. For political scientists, most of whom know little about Wollstonecraft's thought, Sapiro's book is an excellent, nuanced introduction which will cause a reconsideration of her work and her significance both for her time and for today's concerns. For feminist scholars, Sapiro's book offers a rounded and unconventional analysis of Wollstonecraft's thought. Written with considerable charm and verve, this book will be the starting point for understanding this important writer for years to come. (shrink)

Cancers rely on multiple, heterogeneous processes at different scales, pertaining to many biomedical fields. Therefore, understanding cancer is necessarily an interdisciplinary task that requires placing specialised experimental and clinical research into a broader conceptual, theoretical, and methodological framework. Without such a framework, oncology will collect piecemeal results, with scant dialogue between the different scientific communities studying cancer. We argue that one important way forward in service of a more successful dialogue is through greater integration of applied sciences (experimental and clinical) (...) with conceptual and theoretical approaches, informed by philosophical methods. By way of illustration, we explore six central themes: (i) the role of mutations in cancer; (ii) the clonal evolution of cancer cells; (iii) the relationship between cancer and multicellularity; (iv) the tumour microenvironment; (v) the immune system; and (vi) stem cells. In each case, we examine open questions in the scientific literature through a philosophical methodology and show the benefit of such a synergy for the scientific and medical understanding of cancer. (shrink)

When the COVID-19 surge hit New York City hospitals, the Division of Medical Ethics at Weill Cornell Medical College, and our affiliated ethics consultation services, faced waves of ethical issues sweeping forward with intensity and urgency. In this article, we describe our experience over an eight-week period (16 March through 10 May 2020), and describe three types of services: clinical ethics consultation (CEC); service practice communications/interventions (SPCI); and organizational ethics advisement (OEA). We tell this narrative through the prism of time, (...) describing the evolution of ethical issues and trends as the pandemic unfolded. We delineate three phases: anticipation and preparation, crisis management, and reflection and adjustment. The first phase focused predominantly on ways to address impending resource shortages and to plan for remote ethics consultation, and CECs focused on code status discussions with surrogates. The second phase was characterized by the dramatic convergence of a rapid increase in the number of critically ill patients, a growing scarcity of resources, and the reassignment/ redeployment of staff outside their specialty areas. The third phase was characterized by the recognition that while the worst of the crisis was waning, its medium- and long-term consequences continued to pose immense challenges. We note that there were times during the crisis that serving in the role of clinical ethics consultant created a sense of dis-ease as novel as the coronavirus itself. In retrospect we learned that our activities far exceeded the familiar terrain of clinical ethics consultation and extended into other spheres of organizational life in novel ways that were unanticipated before this pandemic. To that end, we defined and categorized a middle level of ethics consultation, which we have termed service practice communication intervention (SPCI). This is an underappreciated dimension of the work that ethics consult services are capable of in times of crisis. We believe that the pandemic has revealed the many enduring ways that ethics consultation services can more robustly contribute to the ethical life of their institutions moving forward. (shrink)

The Search for the Legacy of the USPHS Syphilis Study at Tuskegee is a collection of essays from experts in a variety of fields seeking to redefine the legacy of the infamous Tuskegee Syphilis Study. The essayists place the legacy of the study within the evolution of racial and ethnic relations in the United States. Contributors include two leading historians on the study, two former United States Surgeons General, and other prominent scholars from a wide range of fields.

Self‐management programmes provide strategies to optimise health while educating and providing resources for living with enduring illnesses. The current paper describes the development of a community‐based programme that combines a transdiagnostic approach to self‐management with mindfulness to enhance psychological coping for older people with long‐term multimorbidity. The six steps of intervention mapping (IM) were used to develop the programme. From a needs assessment, the objectives of the programme were formulated; the theoretical underpinnings then aligned to the objectives, which informed programme (...) design, decisions on implementation, programme adoption and evaluation steps. Bandura's social cognitive theory informed the methods and practical strategies of delivery. Among the features addressed with participants are transdiagnostic dimensions such as fatigue, pain, breathlessness, sleep disturbances. The programme utilises mindfulness to aid coping and ameliorate the psychological distresses associated with chronicity. Findings from an initial feasibility study and subsequent pilot assisted in conceptualising our programme. In conclusion, applying IM gave the planners confidence the programme is robust and evidence‐based with clearly articulated links between the behavioural goals and design elements to obtain the desired outcomes. (shrink)

Genomic research results and incidental findings with health implications for a research participant are of potential interest not only to the participant, but also to the participant's family. Yet investigators lack guidance on return of results to relatives, including after the participant's death. In this paper, a national working group offers consensus analysis and recommendations, including an ethical framework to guide investigators in managing this challenging issue, before and after the participant's death.

Preparing the Next Generation of Oral Historians is an invaluable resource to educators seeking to bring history alive for students at all levels. Filled with insightful reflections on teaching oral history, it offers practical suggestions for educators seeking to create curricula, engage students, gather community support, and meet educational standards. By the close of the book, readers will be able to successfully incorporate oral history projects in their own classrooms.

There are many different forms and interpretations of rewilding: the concept and its practice vary from country to country, with distinct interpretations according to its geographical location. Despite the term rewilding having been present in the lexicon for three decades, the concept of rewilding in England has experienced a prolonged developmental stage. This paper argues that a unique form of English rewilding is now emerging, which is distinct from rewilding in other parts of the world. Compared to other locations rewilding (...) in England operates at smaller spatial scales; its ambitions to increase biodiversity, restore ecosystem functioning and increase natural autonomy are somewhat curtailed; it involves higher levels of human intervention; and, perhaps most tellingly of all, it goes by another name - 'wilding', 'wild' or 'wilder' with little mention of the much-maligned prefix 're'. This conclusion has been developed following a comparative case study of two English 'rewilding' sites (the Avalon Marshes and Wild Ennerdale) involving 49 semi-structured interviews: twelve expert interviews and nineteen and eighteen stakeholder/practitioner interviews at the Avalon Mashes and Wild Ennerdale respectively. (shrink)

Feminism is sometimes equated with demands for equal rights for women. Mary Wollstonecraft in the eighteenth century argued, against Rousseau, that women should be accorded the same rights and freedoms based on rational principles that were being demanded for men. In the nineteenth century, John Stuart Mill and Harriet Taylor Mill, rejecting prevailing views of the time, called for an end to the subjection of women through an extension to women of equal rights and equal opportunities. Women, they argued, should (...) have the same rights as men to own property, to vote, to receive education, and to enter any profession. In the twentieth century, women's movements often focused their attention on winning for women the right to vote, achieved in the United States in 1920, in England in 1918 and 1928, in France in 1946, and in Switzerland only in 1971. The second wave of the women's movement in the United States, starting in the late 1960s, placed strong emphasis on achieving an Equal Rights Amendment to the US Constitution (the amendment failed to be ratified by the required number of states), and on ending discrimination against women in all its forms. Arguments for welfare rights, valid independently of feminism, were seen as particularly important to women: how could a person enjoy rights to freedom or equal protection of the laws without assurance of the means to stay alive and to feed her children? Either employment and child care must be available, or persons must have access by right to the basic necessities of life. Negative freedoms from discriminatory interferences are insufficient; positive enablements to be free and equal agents must also be assured by rights. (shrink)

Returning genomic research results to family members raises complex questions. Genomic research on life-limiting conditions such as cancer, and research involving storage and reanalysis of data and specimens long into the future, makes these questions pressing. This author group, funded by an NIH grant, published consensus recommendations presenting a framework. This follow-up paper offers concrete guidance and tools for implementation. The group collected and analyzed relevant documents and guidance, including tools from the Clinical Sequencing Exploratory Research Consortium. The authors then (...) negotiated a consensus toolkit of processes and documents. That toolkit offers sample consent and notification documents plus decision flow-charts to address return of results to family of living and deceased participants, in adult and pediatric research. Core concerns are eliciting participant preferences on sharing results with family and on choice of a representative to make decisions about sharing after participant death. (shrink)

Previous research has demonstrated that speakers adapt individual characteristics of speech production to the social context, for example via phonetic convergence. Studies have measured the impact of social dynamics on convergence in typical speakers, but the impact of individual differences is less well-explored. The present study measures phonetic convergence before and after a cooperative interaction with an undergraduate student by comparing teens with a history of autism spectrum disorder (ASD) and with typical development. Results revealed a small temporal convergence effect (...) for typically developing dyads; in contrast, dyads including autistic teens showed no convergence. Furthermore, the degree of convergence was negatively related to severity of ASD symptomatology and atypical sensory profiles. While social and sensory processing abilities may play a role in phonetic convergence, high covariance between these measures makes it difficult to differentiate their contributions in isolation. (shrink)

Advance refusals of life-sustaining treatment involve three potentially conflicting interests: those of the patient; those of the doctor; and those of the law. The state's interest in protecting life can clash with the patient's right to self determination which, in turn, can conflict with the doctor's desire to act in the patient's best interests. Against this background, we present the case of a patient who was treated (arguably) contrary to his advance refusal but in accordance with English law.

Les femmes écrivains développent-elles une pensée politique spécifique durant la première modernité européenne? Telle est l’interrogation centrale de l’étude de Jacqueline Broad et Karen Green, toutes deux enseignantes dans le département de philosophie et de bioéthique de l’Université Monash en Australie. Le livre étudie l’œuvre de très nombreuses auteures de l’époque moderne, certaines qu’il faut évidemment mobiliser pour répondre à ce type de questionnaire comme Christine de Pisan, Margue...

Increasingly, stories are emerging about businesses that engage in ethical behaviors above and beyond mere compliance with regulations. These positive deviations along the ethical continuum provide an opportunity to explore how some companies’ business philosophy leads them to pursue an array of outcomes beyond the bottom line. This paper presents a case study of Green Mountain Coffee Roasters, the leading ethical company in the U.S. as rated by Forbes magazine, exploring the company culture and operating philosophy from a perspective (...) of the author calls conscientious capitalism, a paradigm based on three interdependent assumptions: interconnectedness, holistic wealth, and multiple generations of time. Considerations discussed for future research. (shrink)

Fictionalists about an area of discourse take the view that the value of participating in that discourse does not depend on the truth of the sentences one utter.

In 1933 Margaret Lasker, a biochemist who worked at the labs of Montefiore Hospital in New York, developed an accurate method for the differentiation between pentosuria and diabetes. Research into pentosuria, and mostly its genetic aspects, became Lasker’s lifelong passion. Since research was not part of her job description, she conducted the chief part of her study in her home kitchen. Lasker’s extensive and personal correspondence with her patients and their families may be the secret key for her success in (...) maintaining a prolonged research career against all odds. Laker’s last article was published in 1955 in Human Biology, presenting data on 72 cases of pentosuria, which occurs almost exclusively in Ashkenazi Jews. More than half a century later, and long after Lasker was gone, her well kept data and family records allowed the discovery of two mutations in the DCXR gene, by Mary-Claire King and her team. (shrink)

This volume challenges the view that women have not contributed to the historical development of political ideas, and highlights the depth and complexity of women’s political thought in the centuries prior to the French Revolution. -/- From the late medieval period to the enlightenment, a significant number of European women wrote works dealing with themes of political significance. The essays in this collection examine their writings with particular reference to the ideas of virtue, liberty, and toleration. The figures discussed include (...) Christine de Pizan, Catherine d’Amboise, Isabella d’Este, Elizabeth I, Katherine Chidley, Elizabeth Poole, Margaret Cavendish, Damaris Masham, Mary Astell, Elizabeth Carter, Catharine Macaulay, Mary Wollstonecraft, and Cornélie Wouters. These women actively contributed to the political practice and discourse of their times. Some of the women question their exclusion from political power and argue in favour of women’s virtue, prudence, and capacity to govern. Others aim to demonstrate women’s spiritual equality with men, to defend liberty of conscience, and to highlight the importance of education as a means to moral development. And some women explore the notion of female citizenship or attempt to come to terms with issues of religious freedom and religious toleration. -/- Virtue, Liberty, and Toleration serves as an introduction to a rich and as yet under-explored period in the history of women’s ideas. (shrink)