BackgroundThe aim of this survey was to determine the level of awareness and understanding of peer review and peer review models amongst junior hospital doctors and whether this influences clinical decision-making.MethodsA 30-question online anonymous survey was developed aimed at determining awareness of peer review models and the purpose of peer review, perceived trustworthiness of different peer review models and the role of peer review in clinical decision-making. It was sent to 800 trainee doctors in medical specialties on the University College (...) London Partners trainee database.ResultsThe response rate was (178/800) 22%. Most respondents were specialist registrars. Checking that research is conducted correctly (152/178, 85%) and the data interpreted correctly (148/178, 83%) were viewed as the most important purposes of peer review. Most respondents were aware of open (133/178, 75%), double-blind (125/178, 70%) and single-blind peer review (121/178, 68%). 101/178 (57%) had heard of collaborative, 87/178 (49%) of post publication and 29/178 (16%) of decoupled peer review. Of those who were aware of double-blind, single-blind open and collaborative peer review, 85 (68%), 82 (68%), 74 (56%) and 24 (24%), respectively, understood how they worked. The NEJM, Lancet and The BMJ were deemed to have most trustworthy peer review, 137/178 (77%), 129/178 (72%) and 115/178 (65%), respectively. That peer review had taken place was important for a journal content to be used for clinical decision-making 152/178 (85%), but the ability to see peer review reports was not as important 22/178 (12%). Most felt there was a need for peer review training and that this should be at the specialist registrar stage of training.ConclusionsJunior hospital doctors view peer review to be important as a means of quality control, but do not value the ability to scrutinize peer review themselves. The unquestioning acceptance of peer review as final validation in the field of medicine emphasises not only the responsibility held by medical journals to ensure peer review is done well but also the need to raise awareness amongst the medical community of the limitations of the current peer review process. (shrink)

ZusammenfassungDie Diskussionen um Sterbehilfe und Patientenverfügung sowie der Ruf nach einer Stärkung der Palliativmedizin nehmen viel Platz in der deutschen Presselandschaft ein. Da Zeitungen einerseits Meinungen und Wissen der Bevölkerung abbilden, andererseits auch zu deren Meinungsbildung und Information beitragen, wurde eine Analyse der Darstellung der Sterbehilfedebatte und der Palliativmedizin durchgeführt. Als empirisches Material dienten 433 Artikel aus den Jahren 2006 und 2007, die mithilfe einer Suche nach den Schlagworten „Palliativmedizin“, „Hospiz“, „Sterbebegleitung“, „Patientenverfügung“, „Patientenautonomie“ und „Sterbehilfe“ in den Print-Archiven verschiedener deutscher (...) Zeitungen identifiziert wurden. Diese Artikel wurden einer qualitativen Inhaltsanalyse unterzogen. Mit Würde, Selbstbestimmung, Unterversorgung und Unsicherheit zeigten sich vier Hauptargumente innerhalb der Sterbehilfedebatte. Würde wird dabei als Argument sowohl für wie gegen aktive Sterbehilfe benutzt. Eine Unsicherheit zeigt sich in der Terminologie der Sterbehilfe. Das Bild der Palliativmedizin ist gekennzeichnet von der Hoffnung, dass sie eine Alternative zur Sterbehilfe bieten kann, sofern sie weiter ausgebaut und besser finanziert wird. Die Ergebnisse bestätigen die in verschiedenen Studien aufgezeigte Bedeutung der Begriffe Würde und Selbstbestimmung für die Einstellung der Bevölkerung zu Sterbehilfe, Suizidbeihilfe und Patientenverfügungen. Das Potential und die noch zu gering ausgebauten Strukturen der Palliativmedizin werden zunehmend erkannt. Demgegenüber erschwert das mangelnde Wissen um die Sterbehilfe-Terminologie und die rechtlichen Grundlagen der Therapiebegrenzung und Patientenverfügungen eine Diskussion um die Sterbehilfe auch auf fachlicher Ebene. (shrink)

Harvey and Gurvir’s Law is a bill proposed to the Legislative Assembly of Ontario (Canada) to reduce stigma and bias associated with Down syndrome, by developing and disseminating quality information about Down syndrome in the context of prenatal testing.

Jeffery Aubin ,Marie Chantal ,Dianne Cole ,Julio Chaves ,Cathelyne Duchesne ,Christel Freu ,Steve Johnston ,Brice Jones ,Amaury Levillayer ,Stéphanie Machabée ,Paul-Hubert Poirier ,Philippe Therrien ,Jonathan von Kodar ,Martin Voyer ,Jennifer Wees ,Eric Crégheur.

Die Diskussionen um Sterbehilfe und Patientenverfügung sowie der Ruf nach einer Stärkung der Palliativmedizin nehmen viel Platz in der deutschen Presselandschaft ein. Da Zeitungen einerseits Meinungen und Wissen der Bevölkerung abbilden, andererseits auch zu deren Meinungsbildung und Information beitragen, wurde eine Analyse der Darstellung der Sterbehilfedebatte und der Palliativmedizin durchgeführt. Als empirisches Material dienten 433 Artikel aus den Jahren 2006 und 2007, die mithilfe einer Suche nach den Schlagworten „Palliativmedizin“, „Hospiz“, „Sterbebegleitung“, „Patientenverfügung“, „Patientenautonomie“ und „Sterbehilfe“ in den Print-Archiven verschiedener deutscher (...) Zeitungen identifiziert wurden. Diese Artikel wurden einer qualitativen Inhaltsanalyse unterzogen. Mit Würde, Selbstbestimmung, Unterversorgung und Unsicherheit zeigten sich vier Hauptargumente innerhalb der Sterbehilfedebatte. Würde wird dabei als Argument sowohl für wie gegen aktive Sterbehilfe benutzt. Eine Unsicherheit zeigt sich in der Terminologie der Sterbehilfe. Das Bild der Palliativmedizin ist gekennzeichnet von der Hoffnung, dass sie eine Alternative zur Sterbehilfe bieten kann, sofern sie weiter ausgebaut und besser finanziert wird. Die Ergebnisse bestätigen die in verschiedenen Studien aufgezeigte Bedeutung der Begriffe Würde und Selbstbestimmung für die Einstellung der Bevölkerung zu Sterbehilfe, Suizidbeihilfe und Patientenverfügungen. Das Potential und die noch zu gering ausgebauten Strukturen der Palliativmedizin werden zunehmend erkannt. Demgegenüber erschwert das mangelnde Wissen um die Sterbehilfe-Terminologie und die rechtlichen Grundlagen der Therapiebegrenzung und Patientenverfügungen eine Diskussion um die Sterbehilfe auch auf fachlicher Ebene. (shrink)

The primary goal of this article is point out certain close parallels between some ideas of the radical feminist theorist Mary Daly and those of the French philosopher Henri Bergson. These similarities are particularly striking regarding distinctions made by both authors between two fundamentally contrasting types of cognitive faculty, of time and temporal experience, and of self and emotion. Daly departs from Bergson inasmuch as she employs these distinctions in her own way. She does not—like Bergson—employ them to depict (...) the result of a natural process of consciousness or life, and the dangers for human freedom and thought of not properly respecting these differences. Rather, she locates these differences within a more liberatory, ethical perspective to ground a sharp, inimical contrast between feminist creative movement on the one hand, and static, fixing, and “fixating” patriarchy, with its “technocratic” pretensions, on the other. My hope is that highlighting the similarities between Daly and Bergson will open new paths of appreciation and critique of Daly’s work. (shrink)

BackgroundIn the early phase of the COVID-19 pandemic, many restrictions hit people in ways never seen before. Mental wellbeing was affected and burden was high, especially for high-risk groups such as parents. However, to our knowledge no research has yet examined whether being a parent was not only a risk for psychological burden but also a way to cope with the COVID-19 pandemic.MethodsAn online survey was used to collect data from 1,121 participants from April to June 2020. In addition to (...) demographic variables, risk factors and protective factors were collected. The dataset was divided into three groups: parents whose children lived at home, parents whose children did not live at home, and people who were not parents.ResultsA linear mixed effect model showed that parents had no higher burden than non-parents, and even less when children did not live at home. Expected risk factors were generally less important, and there were no differences between parents and non-parents. In contrast, parents had advantages in protective factors.ConclusionIn the early phase of the COVID-19 pandemic, it was shown that parents were not necessarily at risk due to additional burden, but also had prospects of coping better with the situation than people without children. (shrink)

Photographic representations of women living with or beyond breast cancer have gained prominence in recent decades. Postmillennial visual narratives are both documentary projects and dialogic sites of self-construction and reader-viewer witness. After a brief overview of 30 years of breast cancer photography, this essay analyzes a collaborative photo-documentary by Stephanie Byram and Charlee Brodsky, Knowing Stephanie , and a memorial photographic essay by Brodsky written ten years after Byram’s death, “Remembering Stephanie” . The ethics of representing women’s (...) postsurgical bodies and opportunities for reader-viewers to engage in “productive looking” are the focal issues under consideration. (shrink)

Dans le cadre de notre thèse, nous avons confronté les Lais de Marie de France datant du xiie siècle qui présentent la particularité alors inédite d’avoir pour auteur une femme et le Genji Monogatari de Murasaki Shikibu (une femme également), écrit au xie siècle au Japon, qui fait aussi figure d’exception dans un paysage scriptural majoritairement masculin, a fortiori pour une œuvre d’une telle ampleur. Le rapprochement entre les deux œuvres était avant tout motivé par une thématique de fond, l’imaginaire (...) féminin, déployé dans deux cultures géographiquement et sociologiquement éloignées, cependant immergées dans un milieu élitiste, celui de la Cour. Ce choix s’inscrivait surtout dans la perspective d’une approche mythocritique plutôt que strictement littéraire, dont l’intérêt se situait en deçà du cadre du texte, puisqu’il puisait dans la mythologie fondatrice des deux cultures, source de l’émergence d’un imaginaire féminin à des époques chiches de féminité. Or, cette analyse, que nous avons qualifiée de contrastive, a permis l’ouverture de la réflexion sur d’autres perspectives que seul autorisait un tel rapprochement ; elle a également cherché à distinguer, parmi les motifs communs aux deux textes, ceux qui relevaient d’une universalité (contextuelle) de ceux qui relevaient d’une commune origine eurasiatique. La réflexion était axée sur la notion d’altérité selon une acception très large mais concentrée sur la représentation par l’imaginaire féminin de l’Autre sexe et d’un Ailleurs avant tout textuel et narratif. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Toward Mindful Music Education:A Response To Bennett ReimerSandra L. StaufferIn her book Composing a Life, Mary Catherine Bateson reminds us to acknowledge our antecedents—those who have gone before in whatever way or whatever path.1 I believe we should also acknowledge our co-conspirators—those who have listened to us and wrestled with our ideas. Following Bateson, I wish to recognize the contributions of my teachers and my colleagues, particularly the (...) members of the doctoral seminar at Arizona State University. I am grateful for your contributions to the life of my mind and the words of this morning. For the record, I also want to say that Bennett Reimer is both antecedent and co-conspirator for everyone in this room, and we are indebted to him."The first task of philosophy involves learning to ask a good question," says Walter Feinberg in his essay on the philosophical scholar.2 Reimer asks us, "Who is philosophy of music education for?"—a provocative question indeed. He also gives us an answer: K-12 students.I agree, but not really. How can that be? Imagine this. A music teacher I know, Stephanie, was engaged with some first-grade children in singing songs and moving and reading rhythms. She turned to write on the white board. When she turned back to the children, one boy, Alex, was standing, perfectly still, on his head. What happened next? I will tell you in few minutes. Reimer says, "Philosophical issues are not disconnected to or incidental to musical experience. [End Page 135] They are foundational for musical experience, because one's values, beliefs, desires, preferences, and so forth, directly affect how one engages with music and what one gets from doing it." Abridging those two sentences at my own peril, Reimer appears to be saying that philosophical issues are foundational to musical experience.That idea works for me only if I am standing, figuratively and metaphorically, not literally, on my head. It seems to me that experience is the foundation of philosophy or, put another way, that one's philosophy derives from one's experiences; the richer the experiences, the richer the philosophy. A philosophy based on limited or weak experience is a limited or weak philosophy. This, however, is only surface-level logic for a deeper epistemological question—where does one's philosophy come from? If I take the Deweyan perspective that philosophy derives from experience, then surely I am obligated, in this forum, to define my terms—particularly "experience." It would be easy to say that experience means making music and listening to music, and surely it does. By experience, however, I mean not only these actions—the doing of music—but also thinking, or what Ellen Langer calls mindfulness.3 Langer describes mindful learning as having three characteristics: "the continuous creation of new categories; openness to new information; and an implicit awareness of more than one perspective."4 I like how Robert Duke articulates the same idea: "Teach things that are intellectually interesting and functionally valuable."5 Engage students not just in doing, but also in thinking—in mindful learning. Rich experience makes for rich philosophy. If we are talking about music education at all levels that is not only participatory, but also mindful, then I am all for it.Reimer asks a second question: how are we to accomplish the teaching of philosophy to K-12 students? I want to know what we are trying to accomplish. Are we trying to teach the content of philosophy or are we trying to help students develop their own abilities to think about their experiences as musicians, whether as listeners or as music makers, in whatever contexts they find themselves? The former seems to be a reification of philosophy in which I am not eager to engage most K-12 students. I hope we are aiming for the latter. If so, then our task is to provide rich and mindful experiences in every music setting. Our task is to model the disposition of a philosopher—one who asks questions, is curious, and is engaged in the life of the mind.This seems so obvious. Why aren't we doing it already? There... (shrink)

by Charlee BrodskyStephanie Byram was my friend. She died of breast cancer at age thirty-eight on June 9, 2001. She lived eight years after the disease was discovered.With her cancer diagnosis at age thirty, Stephanie’s life changed. She became more known to others than she would have otherwise. She always had a close circle of friends who were drawn to her because of her candor, her intellect, her impish humor, her steadiness, her sensitivity. But after her diagnosis, many more (...) people knew of Stephanie Byram because of her willingness to share. Stephanie went public with breast cancer.Stephanie called the work that we produced our “art project.” The work consisted of my photographs and her words, and it took many forms. We exhibited in galleries; published pieces in newspapers, magazines, and journals; produced a thirty-minute video with filmmaker Mary Rawson; and the Univeristy of Pittsburgh published the work as a book. The project garnered recognition and many awards.Recently, I d .. (shrink)

“Remembering Stephanie” by Charlee Brodsky is part of the symposium “Disease, Communication, and the Ethics of Visibility” published in the 11 issue of the Journal of Bioethical Inquiry and guest edited by Martha Stoddard Holmes and Monika Pietrzak-Franger. Although this article was included in the print version of the journal, in error it was not published online or included in the table of contents for the symposium. We republish it in the 12 issue of the Journal of Bioethical Inquiry (...) for these reasons.Additionally, the article “Documenting Women’s Postoperative Bodies: Knowing Stephanie and ‘Remembering Stephanie’ as Collaborative Cancer Narratives” by Mary K. DeShazer, which was published in the 11 symposium and is available at DOI 10.1007/s11673-014-9582-8, comments on and makes direct reference to “Remembering Stephanie” by Charlee Brodsky. (shrink)

The ethical debate about neurotechnologies—including both drugs and implanted devices—has been largely framed around the questions of whether and when these technologies could damage or promote authenticity. Patients can experience changes in mood, behavior, emotion, or preferences—seemingly, changes in character or personality. Some describe such changes by saying they feel like different people; that they have become either more or less themselves; or that they feel as though some of their moods, behaviors, emotions or preferences are not their own. These (...) kinds of statements are used to describe both changes that a drug or device is... (shrink)

At no time in recent decades has more attention been paid to ethical issues in pregnancy. Particularly riveting—and alarming, to many—was the passage of Senate Bill 8, a Texas law banning abortion...

This book exploits the power of phenomenological methods to access and describe lived moral experiences of pain and suffering for patients, their families and the wider community. Creating new fields of communication for patients, their family members and health professionals in shared decision making processes, this book builds on knowledge about suffering to help and guide correct action in preventing and relieving chronic pain and improving systems of care. It offers a new phenomenology for understanding moral experience in serious illness (...) and suffering, and its implication for policy, practice and research. A series of applied chapters, looking at individual experiences of suffering and care experiences, present some areas of ethical inquiry, including: pain and suffering maternal care ethics evaluation and moral deliberation about treatment options decision-making and moral agency end-of-life experiences of care. Exploring how moral phenomenology could provide fruitful alternatives to traditional frameworks in bioethics, this is an important addition to the literature. It will be of interest to scholars and students of bioethics and phenomenological methods in the health and human services. (shrink)

Adolescence, defined in the US as 11–21 years of age, is a critical period for prevention, as it marks the onset of risk behaviors. Minor (<18 years) self-consent and inclusion in biomedical resear...

Many ethical frameworks require artificial intelligence (AI) systems to be explainable. Explainable AI (XAI) models are frequently tested for their adequacy in user studies. Since different people may have different explanatory needs, it is important that participant samples in user studies are large enough to represent the target population to enable generalizations. However, it is unclear to what extent XAI researchers reflect on and justify their sample sizes or avoid broad generalizations across people. We analyzed XAI user studies (N = (...) 220) published between 2012 and 2022. Most studies did not offer rationales for their sample sizes. Moreover, most papers generalized their conclusions beyond their target population, and there was no evidence that broader conclusions in quantitative studies were correlated with larger samples. These methodological problems can impede evaluations of whether XAI systems implement the explainability called for in ethical frameworks. We outline principles for more inclusive XAI user studies. (shrink)

Volume 20, Issue 5, June 2020, Page 72-74.

Positive claims about narrative approaches to healthcare suggest they could have many benefits, including supporting person-centred healthcare (PCH). Narrative approaches have also been criticised, however, on both theoretical and practical grounds. In this paper we draw on epistemological work on narrative and knowledge to develop a conception of narrative that responds to these concerns. We make a case for understanding narratives as accounts of events in which the way each event is described as influenced by the ways other events in (...) the narrative are described. This view of narratives recognises that they can contribute knowledge of different kinds of connections between events: not just causal, and not just of patient’s perspectives. Additionally, narratives can add further epistemic value by suggesting potentially useful lines of inquiry. We take narrative approaches to healthcare to include clinicians considering both patients’ informational offerings and their own professional understandings as narratives. On this understanding, our account is able to overcome the major theoretical and practical criticisms that have been levelled against the use of narrative approaches in healthcare, and can help to explain why and how narrative approaches are consistent with PCH. (shrink)

El estudio de la brecha de género ha despertado el interés de los organismos internacionales y de los investigadores. Este trabajo obtiene una visión general de la situación de la mujer en Europa. La investigación se realiza partiendo de variables de genero disponibles en repositorios internacionales y utilizando técnicas de análisis de datos. De modo general, la situación en Europa es positiva. Si bien, es necesario acometer mejoras en algunos países en ámbitos como el empresarial, el jurídico, y el político. (...) También las mujeres de algunas naciones se beneficiarían de medidas para corregir la discriminación en el ámbito familiar. (shrink)

A User's Guide to Melancholy takes Robert Burton's encyclopaedic masterpiece The Anatomy of Melancholy (first published in 1621) as a guide to one of the most perplexing, elusive, attractive, and afflicting diseases of the Renaissance. Burton's Anatomy is perhaps the largest, strangest, and most unwieldy self-help book ever written. Engaging with the rich cultural and literary framework of melancholy, this book traces its causes, symptoms, and cures through Burton's writing. Each chapter starts with a case study of melancholy - from (...) the man who was afraid to urinate in case he drowned his town to the girl who purged a live eel - as a way into exploring the many facets of this mental affliction. A User's Guide to Melancholy presents in an accessible and illustrated format the colourful variety of Renaissance melancholy, and contributes to contemporary discussions about wellbeing by revealing the earlier history of mental health conditions. (shrink)

This book explores the ethical implications of managing uncertainty in clinical decision-making during the COVID-19 pandemic. It develops an ethics of clinical uncertainty that brings together insights from the clinical and biomedical ethical literatures. The book sets out to recognize the central role uncertainty plays in clinical decision-making and to acknowledge the different levels, kinds, and dimensions of clinical uncertainty. It also aims to aid clinicians and patients in managing clinical uncertainty, and to recognize the ethical duty they have to (...) manage clinical uncertainty. The book addresses four ethical duties related to clinical uncertainty: (1) the duty to advance the welfare of those in clinical medicine, (2) to respect the rights of those in clinical medicine, (3) to promote just access to health care, and (4) to care for one another in clinical medicine. These duties took on select urgency during the COVID-19 pandemic because clinical risk assessments about COVID-19 were limited, we were asked to give informed consent in the context of limited and changing knowledge, the pandemic unearthed myriad problems about the distribution of health care, and the pandemic raised questions about how we care for each other in medicine. An Ethics of Clinical Uncertainty will appeal to scholars, advanced students, and medical professionals working in philosophy of medicine, biomedical ethics, clinical medicine, nursing, public health care, and gerontology. (shrink)