Rare diseases, defined as having a prevalence inferior to 1/2000, are poorly understood scientifically and medically. Appropriate diagnoses and treatments are scarce, adding to the burden of living with chronic medical conditions. The moral significance of rare disease experiences is often overlooked in qualitative studies conducted with adults living with rare diseases. The concept of morally problematic situations arising from pragmatist ethics shows promise in understanding these experiences. The objectives of this study were to (1) acquire an in-depth understanding of (...) morally problematic situations experienced by adults living with rare diseases in the province of Québec and (2) to develop an integrative model of the concept of morally problematic situations. To this end, an online survey targeting this population was developed through a participatory action research project. Respondents provided 90 long testimonies on the most important morally problematic situations they faced, often in healthcare settings. An integrative model was developed based on various qualitative analyses of these testimonies and relevant literature. The integrative model showcases that morally problematic situations have causes (i.e., contextual and relational factors, personal factors, jeopardized valuations), have affective repercussions (i.e., emotions and feelings, internal tensions), prompt action (i.e., through empowerment strategies leading to the evolution of situations), and elicit outcomes (i.e., factual consequences, residual emotions and feelings, positive or negative resolutions). In sum, this study advances understanding of the moral experiences of adults living with rare diseases while proposing a comprehensive conceptual tool to guide future empirical bioethics research on moral experiences. (shrink)

Background Rare diseases are generally poorly understood from scientific and medical standpoints due, to their complexity and low prevalence. As a result, individuals living with rare diseases struggle to obtain timely diagnoses and suitable care. These clinical difficulties add to the physical and psychological impacts of living with chronic and often severe medical conditions. From the standpoint of pragmatist ethics, the morally problematic situations that adults living with rare diseases experience matter crucially. However, there is little known about these experiences.Methods (...) A survey study was conducted with 121 adults living with rare diseases in Québec, Canada, to identify morally problematic situations encountered in the healthcare system and everyday life as part of a participatory action research project. Morally problematic situations elicited internal tensions and constraints to agency.Results Adults living with rare diseases experienced morally problematic situations of stigmatization, disbelief, and sometimes abuse in the healthcare system. These situations were compounded by diagnostic delays, inadequate care, and suboptimal follow-up, and led some individuals to opt-out of medical care. In their personal lives, these individuals sometimes found themselves in situations of physical and financial dependency. They often also had to give up professional occupations, academic training, or life projects.Conclusions Adults living with rare diseases experience important morally problematic situations navigating the healthcare system and their everyday lives, some of which could be alleviated through interventions developed through future participatory action research. (shrink)

BackgroundTrial registration helps minimize publication and reporting bias. In leading medical journals, 96% of published trials are registered. The aim of this study was to determine the proportion of randomized controlled trials published in key nursing journals that met criteria for timely registration.MethodsWe reviewed all RCTs published in three (two general, one mental health) nursing journals between August 2011 and September 2016. We classified the included trials as: 1. Not registered, 2. Registered but not reported in manuscript, 3. Registered retrospectively, (...) 4. Registered prospectively (before the recruitment of the first subject into the trial). 5. Timely registration (as 4 but the trial identification number is reported in abstract).ResultsWe identified 135 trials published in the three included journals. The majority (n = 78, 58%) were not registered. Thirty-three (24%) were retrospectively registered. Of the 24 (18%) trials that were prospectively registered, 11 (8%) met the criteria for timely registration.ConclusionsThere is an unacceptable difference in rates of trial registration between leading medical and nursing journals. Concerted effort is required by nurse researchers, reviewers and journal editors to ensure that all trials are registered in a timely way. (shrink)

In this article, we explore the possibility of adding a new role to the clinical encounter: an illness doula. Even though research and education in medical humanities and narrative medicine have made improvements in humanizing healthcare, progress is slow and ongoing. There needs to be an intervention in the practice of healthcare now for people currently going through the system. An illness doula, like a birth doula, would facilitate and insure that attention is paid to the personal needs and desires (...) of the patient in the present system. We envision illness doulas having the ability and availability to accompany the patient throughout the healthcare process, to help communicate with clinicians, and to ensure that patient preferences are understood and respected along the way. We discuss how this idea emerged through the clinical encounters of two of our authors, the possibilities and limitations of creating a new role for illness doulas, and the logistics of how to put this new role into play. (shrink)

_Edward Bibring Photographs the Psychoanalysts of His Time_ provides us with a unique pictorial window into a fascinating period of psychoanalytic history. It is the gift of Edward Bibring, a passionate photographer who, Rolleiflex in hand, chronicled international psychoanalytic congresses from 1932 to 1938. The period in question spans the ascendancy of Hitler, the great exodus of analysts to England and the U.S., and the Anschluss of 1938. A year after the Paris Congress, the last meeting photographed by Bibring, Europe (...) would be in flames. At Wiesbaden in 1932, we find an ever dignified Ernest Jones relaxing aboard a sight-seeing ship, and Helene Deutsch and Heinz Hartmann delightfully at ease at a coffee shop. At the Lucerne Congress of 1934, Anna Freud, Ludwig Jekels, Wilhelm Reich, Grete Bibring, Max Eitingon, and Franz Alexander happily converse outside a hotel. At Marienbad in 1936, there are smiling new faces: Annie Reich, Ernst Kris, Otto Fenichel, Edward Glover, and others. At Budapest in1937 the women – Anna Freud, Vilma Kovacs, Dorothy Burlingham, and Elisabeth Geleerd – speak animatedly among themselves. A demure Margaret Mahler and a chic Marianne Kris make their appearance. In 1938, we see a series of table shots, where analysts, now with suit jackets removed and even a few collars loosened, relax with their food, wine, and cigars. Bracketed by Sanford Gifford’s brief introduction and biographical sketches of all the captured parties, Bibring’s photographs, digitized and enlarged, retain just enough graininess to evoke a different era in the history of psychoanalysis. It is heartening to see the paragons of “classical psychoanalysis” as warmly human, their analytic reserve supplanted by relaxed affability. But it is sobering to remember that the high spirit engendered by Congresses – in Bibring’s time no less than our own – may overlay the gravest political developments and the deepest personal anxieties. (shrink)

Achille Varzi è uno dei maggiori metafisici viventi. Nel corso degli anni ha scritto testi fondamentali di logica, metafisica, mereologia, filosofia del linguaggio. Ha sconfinato nella topologia, nella geografia, nella matematica, ha ragionato di mostri e confini, percezione e buchi, viaggi nel tempo, nicchie, eventi e ciambelle; e non ha disdegnato di dialogare con gli abitanti di Flatlandia, con Neo e con Terminator. Tra le sue opere principali: Holes and Other Superficialities e Parts and Places. The Structures of Spatial Representation, (...) entrambi scritti insieme a R. Casati per MIT Press; Il mondo messo a fuoco, Laterza; e il suo libro più recente: Le tribolazioni del filosofare, con C. Calosi, per Laterza. -/- Da una giornata all’Università di Urbino nasce questa conversazione a molte voci sulla e con la filosofia di Achille C. Varzi. In un dialogo critico al quale l’Autore si presta con generosità e onestà intellettuale, Andrea Borghini, Francesco Calemi, Claudio Calosi, Elena Casetta, Valeria Giardino, Pierluigi Graziani, Patrizia Pedrini, Daniele Santoro e Giuliano Torrengo lo interrogano e mettono alla prova sui temi affrontati, nel corso degli anni, in campi diversi. Il risultato è un percorso che si snoda attraverso molti mondi, dalla logica alla metafisica, dalla filosofia del linguaggio alla filosofia della matematica, dalla mereologia alla filosofia del tempo, spingendosi in qualche caso oltre i confini del saggio filosofico. (shrink)

Diversity of evidence is widely claimed to be crucial for evidence amalgamation to have distinctive epistemic merits. Bayesian epistemologists capture this idea in the variety-of-evidence thesis: ceteris paribus, the strength of confirmation of a hypothesis by an evidential set increases with the diversity of the evidential elements in that set. Yet, formal exploration of this thesis has shown that it fails to be generally true. This article demonstrates that the thesis fails in even more circumstances than recent results would lead (...) us to expect. Most importantly, it can fail whatever the chance that the evidential sources are unreliable. Our results hold for two types of degrees of variety: reliability independence and testable aspect independence. We conclude that the variety-of-evidence thesis can, at best, be interpreted as an exception-prone rule of thumb. (shrink)

It is common to hear talk of the aim of belief and to find philosophers appealing to that aim for numerous explanatory purposes. What belief 's aim explains depends, of course, on what that aim is. Many hold that it is somehow related to truth, but there are various ways in which one might specify belief 's aim using the notion of truth. In this article, by considering whether they can account for belief 's standard of correctness and the epistemic (...) norms governing belief, I argue against certain prominent specifications of belief 's aim given in terms of truth, and advance a neglected alternative. (shrink)

The _Physics_ is a foundational work of western philosophy, and the crucial one for understanding Aristotle's views on matter, form, essence, causation, movement, space, and time. This richly annotated, scrupulously accurate, and consistent translation makes it available to a contemporary English reader as no other does—in part because it fits together seamlessly with other closely associated works in the New Hackett Aristotle series, such as the _Metaphysics_, _De Anima_, and forthcoming _De Caelo_ and _On Coming to Be and Passing Away_. (...) Eventually the series will include all of Aristotle's works. Sequentially numbered endnotes provide the information most needed at each juncture, while a detailed Index of Terms indicates places where focused discussion of key notions occurs. An illuminating general Introduction describes the book that lies ahead, explaining what sort of work it is and what sorts of evidence it relies on. (shrink)

David Annis is professor of philosophy at Ball State University. In this essay, Annis offers an alternative to the foundationalist-coherent controversy: "contextualism." This theory rejects both the idea of intrinsically basic beliefs in the foundational sense and the thesis that coherence is sufficient for justification. he argues that justification is relative to the varying norms of social practices.

Justice requires that public policy improve the lives of disadvantaged members of society. Dementia is a source of disadvantage, and a growing global public health challenge. This article examines the theoretical and ethical connections between theories of justice and public dementia policy. Disability in general, and dementia in particular, poses important challenges for theories of justice, especially social contract theories. First, the article argues that non-contractarian accounts of justice such as the Capabilities and Disadvantage approaches are better equipped than their (...) contractarian counterparts to analyse issues of justice and dementia. Secondly, using a capabilities framework, I analyse original empirical data from qualitative interviews and discussion groups with health and social care professionals. The article concludes that social connection is a ‘fertile functioning’—a multiplier of advantage that enables people to live well with dementia together—and should therefore be a priority for public dementia policy. (shrink)

In this chapter we introduce concepts for analyzing proofs, and for analyzing undergraduate and beginning graduate mathematics students’ proving abilities. We discuss how coordination of these two analyses can be used to improve students’ ability to construct proofs. -/- For this purpose, we need a richer framework for keeping track of students’ progress than the everyday one used by mathematicians. We need to know more than that a particular student can, or cannot, prove theorems by induction or contradiction or can, (...) or cannot, prove certain theorems in beginning set theory or analysis. It is more useful to describe a student’s work in terms of a finer-grained framework that includes various smaller abilities that contribute to proving and that can be learned in differing ways and at differing periods of a student’s development. (shrink)

In a recent paper, Al Mele (2003) suggests that the Simple View of intentional action is “fiction” because it is “wholly unconstrained” by a widely shared (folk) concept of intentional action. The Simple View (Adams, 1986, McCann, 1986) states that an action is intentional only if intended. As evidence that the Simple View is not in accord with the folk notion of intentional action, Mele appeals to recent surveys of folk judgments by Joshua Knobe (2003, 2004a, 2004b). Knobe’s surveys appear (...) to show that the folk judge unintended but known side effects of actions to be performed intentionally. In this paper we will reject Mele’s suggestion that the Simple View is “fiction.” We will also discuss the relationship between surveys and philosophical theories, and the abilities of surveys to access folk core concepts. We will argue that considerations of both fail to support Mele’s suggestion. (shrink)

Sometimes, learning about the origins of a belief can make it irrational to continue to hold that belief—a phenomenon we call ‘genealogical defeat’. According to explanationist accounts, genealogical defeat occurs when one learns that there is no appropriate explanatory connection between one’s belief and the truth. Flatfooted versions of explanationism have been widely and rightly rejected on the grounds that they would disallow beliefs about the future and other inductively-formed beliefs. After motivating the need for some explanationist account, we raise (...) some problems for recent versions of explanationism. Learning from their failures, we then produce and defend a more resilient explanationism. (shrink)

Examines the lived experience of social encounters drawing on phenomenological insights.

Infallibilism is the view that a belief cannot be at once warranted and false. In this essay we assess three nonpartisan arguments for infallibilism, arguments that do not depend on a prior commitment to some substantive theory of warrant. Three premises, one from each argument, are most significant: if a belief can be at once warranted and false, then the Gettier Problem cannot be solved; if a belief can be at once warranted and false, then its warrant can be transferred (...) to an accidentally true belief; if a belief can be at once warranted and false, then it can be warranted and accidentally true. We argue that each of these is either false or no more plausible than its denial. Along the way, we offer a solution to the Gettier Problem that is compatible with fallibilism. (shrink)

Friendship was an important topic for classical philosophers; the analysis, Value, And duties of friendship all received considerable attention. But friendship has been a relatively dormant topic among more recent philosophers. This paper (a) presents an analysis of friendship and explains its core elements, (b) discusses several different models for explaining the value of friendship, And (c) argues that there are special duties of friendship and that these aren't based solely on utilitarian considerations.

Diversity of evidence is widely claimed to be crucial for evidence amalgamation to have distinctive epistemic merits. Bayesian epistemologists capture this idea in the variety-of-evidence thesis: ceteris paribus, the strength of confirmation of a hypothesis by an evidential set increases with the diversity of the evidential elements in that set. Yet, formal exploration of this thesis has shown that it fails to be generally true. This article demonstrates that the thesis fails in even more circumstances than recent results would lead (...) us to expect. Most importantly, it can fail whatever the chance that the evidential sources are unreliable. Our results hold for two types of degrees of variety: reliability independence and testable aspect independence. We conclude that the variety-of-evidence thesis can, at best, be interpreted as an exception-prone rule of thumb. (shrink)

Siopis has always engaged in a critical and controversial way with the concepts of ‘race’ and ‘ethnicity’ in South Africa. For politically sensitive artists whose work has involved confronting the injustices of apartheid, the current post-apartheid situation has forced a reassessment of their practice and the terms on which they might engage with the fundamental changes which are now affecting all of South African society. Where mythologies of race and ethnicity have been strategically foregrounded in the art of any engaged (...) artist, to the exclusion of many other concerns, the demise of apartheid offers the possibility of exploring other dimensions of lived experience in South Africa. For feminists, this is potentially a very positive moment when questions of gender – so long subordinated to the structural issue of ‘race’ under apartheid – can now be explored. Penny Siopis’ work has long been concerned with the lived and historical relations between black and white women in South Africa. The discussion focuses on the ambivalent and dependent relationships formed between white middle-class women and black domestic labour during apartheid. Siopis’ work engages with how the appropriation of black women's time, lives, labour and bodies has shaped her ‘own’ history. (shrink)

Twenty-first-century biology rejects genetic determinism, yet an exaggerated view of the power of genes in the making of bodies and minds remains a problem. What accounts for such tenacity? This article reports an exploratory study suggesting that the common reliance on Mendelian examples and concepts at the start of teaching in basic genetics is an eliminable source of support for determinism. Undergraduate students who attended a standard ‘Mendelian approach’ university course in introductory genetics on average showed no change in their (...) determinist views about genes. By contrast, students who attended an alternative course which, inspired by the work of a critic of early Mendelism, W. F. R. Weldon, replaced an emphasis on Mendel’s peas with an emphasis on developmental contexts and their role in bringing about phenotypic variability, were less determinist about genes by the end of teaching. Improvements in both the new Weldonian curriculum and the study design are in view for the future. (shrink)

In Lukács: Praxis and the Absolute, Daniel Andrés López reassembles Lukács’s philosophy of praxis on a Hegelian basis, as a conceptual-historical totality, both defending him and proposing an unprecedented, immanent critique that raises problems for Marxian philosophy as a whole.

" Qualia " is an unfamiliar term for something that could not be more familiar to each of us: the ways things seem to us. As is so often the case with philosophical jargon, it is easier to give examples than to give a definition of the term. Look at a glass of milk at sunset; the way it looks to you--the particular, personal, subjective visual quality of the glass of milk is the quale of your visual experience at the (...) moment. The way the milk tastes to you then is another, gustatory quale, and how it sounds to you as you swallow is an auditory quale; These various "properties of conscious experience" are prime examples of qualia. Nothing, it seems, could you know more intimately than your own qualia ; let the entire universe be some vast illusion, some mere figment of Descartes' evil demon, and yet what the figment is made of will be the qualia of your hallucinatory experiences. Descartes claimed to doubt everything that could be doubted, but he never doubted that his conscious experiences had qualia, the properties by which he knew or apprehended them. (shrink)

In this study, we examined the perception of actual and ideal ethical climate type among 95 nurses working in the internal medicine wards of one central hospital in the state of Israel. We also examined whether nurses’ demographic characteristics influence that perception and if a relationship between perceptions of an actual and an ideal ethical climate type influences nurses’ job satisfaction. A questionnaire composed of three subquestionnaires was administered and the responses analyzed using multiple linear regressions, analysis of variance and (...) Pearson’s correlation coefficient. The results demonstrated that demographic characteristics (such as: gender, job tenure and level of education) partially influence the perception of an ideal ethical climate. Incongruence in perceptions of ‘caring’ and ‘independence’ climate types indicated a decline in nurses’ job satisfaction, while perception of actual ‘caring’ and ‘service’ climates positively influenced all aspects of job satisfaction. We recommend constructing training programs emphasizing the ethics of nursing practice and also to help lead nurses to clarify an ethical framework and guide nursing staff in dealing with ethical dilemmas. (shrink)

The social sciences playa variety of multifaceted roles in the policymaking process. So varied are these roles, indeed, that it is futile to talk in the singular about the use of social science in policymaking, as if there were one constant relationship between two fixed and stable entities. Instead, to address this issue sensibly one must talk in the plural about uses of dif ferent modes of social scientific inquiry for different kinds of policies under various circumstances. In some cases, (...) the influence of social scientific research is direct and tangible, and the connection between the find ings and the policy is easy to see. In other cases, perhaps most, its influence is indirect-one small piece in a larger mosaic of politics, bargaining, and compromise. Occasionally the findings of social scientific studies are explicitly drawn upon by policymakers in the formation, implementation, or evaluation of particular policies. More often, the categories and theoretical models of social science provide a general background orientation within which policymakers concep tualize problems and frame policy options. At times, the in fluence of social scientific work is cognitive and informational in nature; in other instances, policymakers use social science primarily for symbolic and political purposes in order to le gitimate preestablished goals and strategies. Nonetheless, amid this diversity and variety, troubling general questions persistently arise. (shrink)

This paper argues that the augmented reality gaming application for smart devices, _Pokémon GO_ shows the fate of the legal subject as a neoliberal monster subjugated to the limitations imposed by hypercapitalism. The game, derived from Nintendo’s iconic Pokémon franchise, reveals the legal subject as a frenzied, diminished and impulsive being, allowed to see, move, catch and accumulate but unable to participate in more meaningful self-narration. It is not that the game is lawless, notwithstanding, anxieties in the semiosphere about users (...) trespassing or engaging in criminal behaviour. Rather the game is over structured and highly limited, both within its game-play which is repetitive and impulsive, and in its absence of narrative. Unlike the classic Nintendo Pokémon games which are within the role-playing game genre, _Pokémon GO_ abstracts the seeing, moving, catching and accumulating features of the classic games without the overarching narrative, questing and competition. In this _Pokémon GO_ manifests the transformation of the liberal legal subject of capitalism to the neoliberal subject of a digital orientated hypercapitalism where seeing, moving, catching and accumulating is immediate and impulsive, obliterating the ‘prudent’ subject participating in their own self-narration. (shrink)

Supererogatory acts are those that lie “beyond the call of duty.” There are two standard ways to define this idea more precisely. Although the definitions are often seen as equivalent, I argue that they can diverge when options are infinite, or when there are cycles of better options; moreover, each definition is acceptable in only one case. I consider two ways out of this dilemma.

1. Happiness, then and now -- Happiness, eudaimonia, and practical reasoning -- Happiness as eudaimonia -- Happiness and virtuous activity -- New directions from old debates -- 2. Happiness then: the sufficiency debate -- Aristotle's case against the sufficiency thesis -- 3. Happiness now: rethinking the self -- Socrates' case for the sufficiency thesis -- Epictetus and the stoic self -- The Stoics' case for the sufficiency thesis -- The embodied conception of the self -- The embodied conception and psychological (...) well-being -- The Stoics' case against the embodied conception. (shrink)

L’article se propose de confronter l’herméneutique du sujet, telle qu’elle est définie par Ricœur dans son ouvrage Soi-même comme un autre à celle qui fait l’objet du cours donné par Michel Foucault en 1981-1982 au Collège de France. Il s’agit, sous la forme d’une conversation imaginaire, de préciser le sens donné par les deux auteurs à l’herméneutique du sujet et d’en dégager les implications sur la constitution du sujet, la conception de la liberté et le statut de l’éthique. L'argumentation s'appuie (...) sur l'ouvrage majeur Soi-même comme un autre , que Ricœur a élaboré dans la période qui correspond aux dernières œuvres de Foucault. This paper intends to compare the hermeneutics of the subject by Ricœur in Oneself as Another with the lessons given by Foucault at the Collège de France in 1981-1982 about The Hermeneutics of the Subject . Presented as an invented conversation, it tries to specify the meaning of both authors’ hermeneutics and to find their implications about the subject’s constitution, the conception of freedom and the status of ethics. The argumentation is based on the essential book Oneself as Another , conceived by Ricœur at the same time Foucault was writing his last works. (shrink)

Sometimes it takes years of debate for philosophers to discover what it is they really disagree about. Sometimes they talk past each other in long series of books and articles, never guessing at the root disagreement that divides them. But occasionally a day comes when something happens to coax the cat out of the bag. "Aha!" one philosopher exclaims to another, "so that's why you've been disagreeing with me, misunderstanding me, resisting my conclusions, puzzling me all these years!".