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)

In the wake of the 2008 global financial crisis, an important conceptual battleground for democratic theorists ought to be, it would seem, the capitalist firm. We are now painfully aware that the typical model of government in so-called investor-owned companies remains profoundly oligarchic, hierarchical, and unequal. Renewing with the literature of the 1970s and 1980s on workplace democracy, a few political theorists have started to advocate democratic reforms of the workplace by relying on an analogy between firm and state. To (...) the extent that a firm is an organization comparable to the state, it too ought to be ruled along democratic lines. Our paper tests the robustness of the analogy between firm and state by considering six major objections to it: the objection from a difference in ends, the objection from shareholders’ property rights, the objection from worker’s consent, the objection from workers’ exit opportunities, the objection from workers’ expertise, and the objection from the fragility of firms. We find all of these objections wanting. While the paper does not ambition to settle the issue of workplace democracy at once, our goal is to pave the way for a more in-depth study of the ways in which firms and states can be compared and the possible implications this may have for our understanding of the nature of managerial authority and the governance of firms. (shrink)

As intergenerational interactions increase due to an ageing population, the study of emotion-related responses to the elderly is increasingly relevant. Previous research found mixed results regarding affective mimicry – a measure related to liking and affiliation. In the current study, we investigated emotional mimicry to younger and older actors following an encounter with a younger and older player in a Cyberball game. In a complete exclusion condition, in which both younger and older players excluded the participant, we expected emotional mimicry (...) to be stronger for younger vs. older actors. In a partial inclusion condition, in which the younger player excluded while the older player included the participant, we predicted that the difference in player behaviour would lead to a difference in liking. This increased liking of the older interaction partner should reduce the difference in emotional mimicry towards the two different age groups. Results revealed more mimicry for older actors following partial inclusion especially for negative emotions, suggesting inclusive behaviour by an older person in an interaction as a possible means to increase mimicry and affiliation to the elderly. (shrink)

Based on an extensive review of the literature and field surveys, the paper proposes a conceptualization and operationalization of corporate citizenship meaningful in two countries: the United States and France. A survey of 210 American and 120 French managers provides support for the proposed definition of corporate citizenship as a construct including the four correlated factors of economic, legal, ethical, and discretionary citizenship. The managerial implications of the research and directions for future research are discussed.

This book offers a comprehensive presentation of the Pratyabhij philosophy (elaborated in the 10th and 11th centuries by Utpaladeva and Abhinavagupta) by showing how its main concepts arose from the confrontation of aiva religious dogmas ...

Joseph Priestley, the eighteenth-century scientist who discovered oxygen, was one of the most remarkable thinkers of his time. This collection of essays by a team of experts covers the full range of his work in the fields of education, politics, philosophy, and theology, and firmly re-establishes him as a major intellectual figure.

Alfred North Whitehead has never gone out of print, but for a time he was decidedly out of fashion in the English-speaking world. In a splendid work that serves as both introduction and erudite commentary, Isabelle Stengersâe"one of todayâe(tm)s leading philosophers of scienceâe"goes straight to the beating heart of Whiteheadâe(tm)s thought. The product of thirty yearsâe(tm) engagement with the mathematician-philosopherâe(tm)s entire canon, this volume establishes Whitehead as a daring thinker on par with Gilles Deleuze, Felix Guattari, and Michel Foucault. (...) Reading the texts in broadly chronological order while highlighting major works, Stengers deftly unpacks Whiteheadâe(tm)s often complicated language, explaining the seismic shifts in his thinking and showing how he called into question all that philosophers had considered settled after Descartes and Kant. She demonstrates that the implications of Whiteheadâe(tm)s philosophical theories and specialized knowledge of the various sciences come yoked with his innovative, revisionist take on God. Whiteheadâe(tm)s God exists within a specific epistemological realm created by a radically complex and often highly mathematical language. âeoeTo think with Whitehead today,âe Stengers writes, âeoemeans to sign on in advance to an adventure that will leave none of the terms we normally use as they were.âe. (shrink)

An innovative, multifaceted approach to scientific experiments as designed by and shaped through interaction with the modeling process The role of scientific modeling in mediation between theories and phenomena is a critical topic within the philosophy of science, touching on issues from climate modeling to synthetic models in biology, high energy particle physics, and cognitive sciences. Offering a radically new conception of the role of data in the scientific modeling process as well as a new awareness of the problematic aspects (...) of data, this cutting-edge volume offers a multifaceted view on experiments as designed and shaped in interaction with the modeling process. Contributors address such issues as the construction of models in conjunction with scientific experimentation; the status of measurement and the function of experiment in the identification of relevant parameters; how the phenomena under study are reconceived when accounted for by a model; and the interplay between experimenting, modeling, and simulation when results do not mesh. Highlighting the mediating role of models and the model-dependence of data measurement, this volume proposes a normative and conceptual innovation in scientific modeling--that the phenomena to be investigated and modeled must not be precisely identified at the start but specified during the course of the interactions arising between experimental and modeling activities. Contributors: Nancy D. Cartwright, U of California, San Diego; Anthony Chemero, U of Cincinnati; Ronald N. Giere, U of Minnesota; Jenann Ismael, U of Arizona; Tarja Knuuttila, U of South Carolina; Andrea Loettgers, U of Bern, Switzerland; Deborah Mayo, Virginia Tech; Joseph Rouse, Wesleyan U; Paul Teller, U of California, Davis; Michael Weisberg, U of Pennsylvania; Eric Winsberg, U of South Florida. (shrink)

Concerned with the interplay between science, society, and power, Isabelle Stengers offers a unique perspective on the power of scientific theories to modify society, and vice versa. 9 diagrams.

The paper provides a new critical perspective on the propensity interpretation of fitness, by investigating its relationship to the propensity interpretation of probability. Two main conclusions are drawn. First, the claim that fitness is a propensity cannot be understood properly: fitness is not a propensity in the sense prescribed by the propensity interpretation of probability. Second, this interpretation of probability is inessential for explanations proposed by the PIF in evolutionary biology. Consequently, interpreting the probabilistic dimension of fitness in terms of (...) propensities is neither a strong motivation in favor of this interpretation, nor a possible target for substantial criticism. (shrink)

Shavelson et al. (2023) identify an important problem in their Target article: a significant number of terminally ill patients with impaired motor function are wrongfully excluded from receiving ai...

This paper demonstrates how argumentation schemes can be used in decision support systems that help clinicians in making treatment decisions. The work builds on the use of computational argumentation, a rigorous approach to reasoning with complex data that places strong emphasis on being able to justify and explain the decisions that are recommended. The main contribution of the paper is to present a novel set of specialised argumentation schemes that can be used in the context of a clinical decision support (...) system to assist in reasoning about what treatments to offer. These schemes provide a mechanism for capturing clinical reasoning in such a way that it can be handled by the formal reasoning mechanisms of formal argumentation. The paper describes how the integration between argumentation schemes and formal argumentation may be carried out, sketches how this is achieved by an implementation that we have created and illustrates the overall process on a small set of case studies. (shrink)

Biobanks correspond to different situations: research and technological development, medical diagnosis or therapeutic activities. Their status is not clearly defined. We aimed to investigate human biobanking in Europe, particularly in relation to organisational, economic and ethical issues in various national contexts. Data from a survey in six EU countries were collected as part of a European Research Project examining human and non-human biobanking. A total of 147 institutions concerned with biobanking of human samples and data were investigated by questionnaires and (...) interviews. Most institutions surveyed belong to the public or private non-profit-making sectors, which have a key role in biobanking. This activity is increasing in all countries because few samples are discarded and genetic research is proliferating. Collections vary in size, many being small and only a few very large. Their purpose is often research, or research and healthcare, mostly in the context of disease studies. A specific budget is very rarely allocated to biobanking and costs are not often evaluated. Samples are usually provided free of charge and gifts and exchanges are the common rule. Good practice guidelines are generally followed and quality controls are performed but quality procedures are not always clearly explained. Associated data are usually computerised. Biobankers generally favour centralisation of data rather than of samples. Legal and ethical harmonisation within Europe is considered likely to facilitate international collaboration. We propose a series of recommendations and suggestions arising from the EUROGENBANK project. (shrink)

"Isabelle Stengers presents us with a new way of understanding a remarkably diverse range of sciences and their relation to a material and living world. Playing with a position both inside the practices that constitute and transform science and outside the sciences as their mode of conceptualization, Stengers explores the limits, constraints, and inventions that fuse modern science and contemporary society." Elizabeth Grosz --.

People reject ‘paradoxical’ inferences, such as: Luisa didn't play music; therefore, if Luisa played soccer, then she didn't play music. For some theorists, they are invalid for everyday conditionals, but valid in logic. The theory of mental models implies that they are valid, but unacceptable because the conclusion refers to a possibility inconsistent with the premise. Hence, individuals should accept them if the conclusions refer only to possibilities consistent with the premises: Luisa didn't play soccer; therefore, if Luisa played a (...) game then she didn't play soccer. Two experiments corroborated this prediction for three sorts of ‘paradox’, including a disjunctive paradox. (shrink)

After years of the welfare state, the rise of technology, combined with neoliberal governmental apparatuses, has established a new society of the precarious. In this new way of the world, productivity is not just connected to labor in the traditional sense of work hours, but more totally, to the formation of the self: work becomes performative and affective, and personal identities seep more and more into working ones. This new mode of being has another side, however: it can lead to (...) new forms of self-organization, resistance and exodus. In it we see the emergence of a new and disobedient self-government of the precarious. (shrink)

The Occupy movements in 2011 – this essay focuses mainly on Spain and the United States – have been more than moments of grassroots or direct democracy: they have been collective political practices testing forms of non-representationist democracy in the Europe of representative democracy to an unusually great extent. The precarious subjects of post-Fordism rejected political representation, and at the same time they struggled for a ‘real’ democracy. This oxymoron between representation and democracy structures the political philosophy of Jacques Rancière (...) and corresponds with his well-known distinction between police and politics. This is one of the reasons why his thinking is helpful to understand them as decidedly political ones. However, the assembly as one of the central topoi of theories of democracy plays no prominent role in Rancière’s political philosophy. In contrast to this, I focus on the central practice of the assemblies in the Occupy movements and develop a concept of presentist democracy. (shrink)

This study investigates whether the market valuation of the two summary accounting measures, book value of equity and net income, is higher for firms with reputation for sustainability leadership, when compared to firms that do not enjoy such reputation. The results are interpreted through the lens of a framework combining signalling theory and resource-based theory, according to which firms signal their commitment to sustainability to influence the external perception of reputation. A firm’s reputation for being committed to sustainability is an (...) intangible resource that can increase the value of a firm’s expected cash flows and/or reduce the variability of its cash flows. Our findings are according to expectations and show that the net income of firms with good sustainability reputation has a higher valuation by the market, when compared to their counterparts. (shrink)

Recent years have seen a notable increase in the production of scientific expertise by large multidisciplinary groups. The issue we address is how reports may be written by such groups in spite of their size and of formidable obstacles: complexity of subject matter, uncertainty, and scientific disagreement. Our focus is on the International Panel on Climate Change, unquestionably the best-known case of such collective scientific expertise. What we show is that the organization of work within the IPCC aims to make (...) it possible to produce documents that are indeed expert reports. To do so, we first put forward the epistemic norms that apply to expert reports in general, that is, the properties that reports should have in order to be useful and to help decision-making. Section 2 claims that these properties are: intelligibility, relevance and accuracy. Based on this analysis, section 3 points to the difficulties of having IPCC reports indeed satisfying these norms. We then show how the organization of work within the IPCC aims at and to a large extent secures intelligibility, relevance and accuracy, with the result that IPCC reports can be relied on for decision-making. Section 4 focuses on the fundamentals of IPCC’s work organization--that is, division of labour within the IPCC--while section 5 investigates three frameworks that were introduced over the course of the functioning of the IPCC: the reviewing procedure of IPCC reports, the language that IPCC authors use to express uncertainty and the Coupled Model Intercomparison Project. Concluding remarks are offered in section 6. (shrink)

Although the mapping between form and meaning is often regarded as arbitrary, there are in fact well-known constraints on words which are the result of functional pressures associated with language use and its acquisition. In particular, languages have been shown to encode meaning distinctions in their sound properties, which may be important for language learning. Here, we investigate the relationship between semantic distance and phonological distance in the large-scale structure of the lexicon. We show evidence in 100 languages from a (...) diverse array of language families that more semantically similar word pairs are also more phonologically similar. This suggests that there is an important statistical trend for lexicons to have semantically similar words be phonologically similar as well, possibly for functional reasons associated with language learning. (shrink)

Investigating the causes of unethical behaviors in academia, such as scientific misconduct, has become a highly important research subject. The current performance measurement practices (e.g., equating research performance with the number of publications in top-tier journals) are frequently referred to as being responsible for scientists’ unethical behaviors. We conducted qualitative semi-structured interviews with different stakeholders of the higher education system (e.g., professors and policy makers; N = 43) to analyze the influence of performance measurement on scientists’ behavior. We followed a (...) three-step coding procedure and found (1) that the participants described a variety of positive behavioral consequences (e.g., higher productivity) but mainly negative behavioral consequences (e.g., questionable publishing practices) of current performance measurement practices in academia; (2) that scientists’ behavior can be described as gaming performance measurement (i.e., achieving performance goals by reducing performance quality and focusing on those tasks that are measured); and (3) that gaming performance measurement shares the same characteristics as deviant workplace behavior (i.e., a voluntary violation of organizational norms that harms the university). We discuss that gaming performance measurement has not been considered as a type of deviant workplace behavior in the previous literature. Furthermore, we draw from research on deviant workplace behavior and goal setting to discuss psychological processes that may underlie gaming performance measurement. Our results indicate the importance of connecting literature on deviant workplace behavior and goal setting to advance our understanding of gaming performance measurement. (shrink)

So far, the conceptualization and measurement of parental burnout have been deduced from those of job burnout. As a result, it is unclear whether current measures of parental burnout constitute the best representation of the parental burnout construct/syndrome: the possibility cannot be excluded that some dimensions ought to be added, which would change the structure and definition of parental burnout. In this study, the conceptualization and measurement of parental burnout were approached using an inductive method, in which the parental burnout (...) phenomenon was (re)constructed based solely on the testimonies of burned-out parents. Items extracted from their testimonies were presented to a sample of French-speaking and English-speaking parents (N = 901) and submitted to factor analyses. An identifiable parental burnout syndrome including four dimensions was found (exhaustion in one’s parental role, contrast with previous parental self, feelings of being fed up with one’s parental role and emotional distancing from one’s children). The resulting instrument, the Parental Burnout Assessment (PBA) presents good validity. Factorial invariance across gender and languages was also found. Finally, the results of this study replicate previous findings that psychological traits of the parents, parenting factors and family functioning account for more variance in parental burnout than sociodemographic factors. (shrink)

This article examines how the Kashmiri non-dualistic Śaiva philosophers Utpaladeva (tenth century) and Abhinavagupta (10th–11th centuries) present and criticize a theory expounded by certain Buddhist philosophers, identified by the two Śaiva authors as Sautrāntikas. According to this theory, no entity external to consciousness can ever be perceived since perceived objects are nothing but internal aspects (ākāra) of consciousness. Nonetheless we must infer the existence of external entities so as to account for the fact that consciousness is aware of a variety (...) of objects: just as a mirror takes on a variegated appearance only by reflecting a multiplicity of objects that remain external to it, in the same way, phenomenal variety can be explained only by assuming the existence of various objects external to consciousness. In Īśvarapratyabhijñākārikās I, 5, 8–9 and their commentaries, Utpaladeva and Abhinavagupta endeavour to criticize this theory, which challenges their own idealistic principles: according to them, the Sautrāntikas’ inference is neither legitimate nor even possible. The passage is particularly telling as regards the strategy developed by Pratyabhijñā philosophers with respect to their Buddhist opponents: they make use of certain arguments propounded by Dharmakīrti in defense of Vijñānavāda in order to criticize the Sautrāntikas’ inference, but they also exploit this discussion to underline the superiority of their idealism over that of the Vijñānavādins. (shrink)

Idealism is the core of the Pratyabhijñã philosophy: the main goal of Utpaladeva (fl. c. 925–950 AD) and of his commentator Abhinavagupta (fl. c. 975–1025 AD) is to establish that nothing exists outside of consciousness. In the course of their demonstration, these Śaiva philosophers endeavour to distinguish their idealism from that of a rival system, the Buddhist Vijñānavāda. This article aims at examining the concept of otherness (paratva) as it is presented in the Pratyabhijñā philosophy in contrast with that of (...) the Vijñānavādins’. Although, according to the Pratyabhijñā, the other subjects are not ultimately real since all subjects are nothing but limited manifestations of a single absolute subject, the fact that we are aware of their existence in the practical world has to be accounted for. The Vijñānavādins explain it by arguing the we infer the others’ existence. The Pratyabhijñā philosophers, while refuting their opponents’ reasoning as it is expounded in Dharmakīrti’s Santānāntarasiddhi, develop a particulary original analysis of our awareness of the others, stating that this awareness is neither a perception (pratyakṣa) nor an inference (anumāna), but rather a guess (ūha) in which we sense the others’ freedom (svātantrya). (shrink)

Originally published in French in seven volumes, Cosmopolitics investigates the role and authority of the sciences in modern societies and challenges their claims to objectivity, rationality, and truth. Cosmopolitics II includes the first English-language translations of the last four books: Quantum Mechanics: The End of the Dream, In the Name of the Arrow of Time: Prigogine’s Challenge, Life and Artifice: The Faces of Emergence, and The Curse of Tolerance. Arguing for an “ecology of practices” in the sciences, Isabelle Stengers (...) explores the discordant landscape of knowledge derived from modern science, seeking intellectual consistency among contradictory, confrontational, and mutually exclusive philosophical ambitions and approaches. For Stengers, science is a constructive enterprise, a diverse, interdependent, and highly contingent system that does not simply discover preexisting truths but, through specific practices and processes, helps shape them.Stengers concludes this philosophical inquiry with a forceful critique of tolerance; it is a fundamentally condescending attitude, she contends, that prevents those worldviews that challenge dominant explanatory systems from being taken seriously. Instead of tolerance, she proposes a “cosmopolitics” that rejects politics as a universal category and allows modern scientific practices to peacefully coexist with other forms of knowledge. (shrink)

Prenatal and preimplantation testing technologies have offered unprecedented access to information about the genetic and congenital makeup of our prospective progeny. Future developments such as preconception testing, non-intrusive prenatal testing and more extensive preimplantation testing promise to increase that access further still. The result may be greater reproductive choice, but it also increases the burden on women and men to avail themselves of these technologies in order to avoid having a child with a disability. The overwhelming question for legislators has (...) been whether and, if so, how to regulate the use of these technologies in the face of compelling but seemingly contradictory claims about the advancement of reproductive choice and the dangers of eugenic or discriminatory effects. This book examines the evolution of this legislative oversight across a number of jurisdictions and explores the tensions and ambiguities that inform these laws. (shrink)

Many scholars study the global diffusion of culture, looking at how institutions spread culture around the world or at how intermediaries adapt foreign culture in the local context. This research can tell us much about brokers’ “cultural-matching” or “congruence-building” strategies. To date, however, few scholars have examined brokers’ interpretive work. In this article, the author argues that globalization research needs to pay more attention to interpretation. Building on translation studies, the author shows that brokers’ work is shaped by how they (...) imagine their dual roles, how they imagine different parts of the world, how they interpret a text’s intertextuality, and how their audience imagines the foreign Other. In this way, the author lays the groundwork for a hermeneutic model of cultural globalization. (shrink)

The multifaceted nature of empathy requires a comprehensive conceptualization of core and related emotional and mindreading processes. Here I argue that new paradigms are needed that allow for a more ecologically valid and parametric assessment of empathy subprocesses and their neuronal correlates. Towards that goal, cognitive neuroscience studies should make use of audiovisual stimuli that more closely approximate real-life settings and include online social interaction paradigms.

Depuis qu'elles existent, les sciences dites exactes se prétendent différentes des autres savoirs. Comment comprendre cette prétention? Faut-il, à la manière des épistémologues anglo-saxons ou de Karl Popper, tenter d'identifier les critères qui la justifient? Peut-on, suivant le modèle nouveau des études sociales des sciences, y voir une simple croyance? Ce livre propose un dépassement fructueux de l'opposition, apparemment irréconciliable, entre ces deux approches des sciences. Et si la tension entre objectivité scientifique et croyance était justement constitutive des sciences, enjeu (...) des pratiques inventées et réinventées par les scientifiques? Réussir à parler des sciences avec humour, sans en faire un objet de vénération, ni de dénonciation, en restant au plus proche de la passion des scientifiques, tel est ici le pari d'Isabelle Stengers. Mais ce livre ne se limite pas à un discours sur les sciences. Il s'agit bien plutôt de prolonger l'histoire de leur invention. Comment comprendre les liens multiples entre la science et les pouvoirs qui la mobilisent aujourd'hui? Comment concevoir les rapports entre science, expertise et démocratie? La nouveauté de L'invention des sciences modernes est de faire de ces différents problèmes intellectuels, pratiques et politiques les enjeux du processus par où pourrait s'inventer et se renouveler l'identité même des sciences. (shrink)