Background: Informed consent for genetic tests is a well-established practice. It should be based on good quality information and in keeping with the patient’s values. Existing informed consent assessment tools assess knowledge and values. Nevertheless, there is no consensus on what specific elements need to be discussed or considered in the consent process for genetic tests.Methods: We performed a systematic review to identify all factors involved in the decision-making and consent process about genetic testing, from the perspective of patients. Through (...) public databases, we identified studies reporting factors that influence the decision to accept or decline genetic testing. Studies were included if they reported the perspective of patients or at-risk individuals. All articles were thematically coded.Results: 1989 articles were reviewed: 70 met inclusion criteria and 12 additional articles were identified through the references of included studies. Coding of the 82 articles led to the identification of 45 factors involved in decision-making and consent, which were initially divided into three domains: in favor of, against or with an undetermined influence on genetic testing. Each factor was also divided into three subdomains relating to the informed choice concept: knowledge, values or other. The factors in the “other” subdomain were all related to the context of testing (e.g. timing, cost, influence of family members, etc), and were present in all three domains.Conclusions: We describe the network of factors contributing to decision-making and consent process and identify the context of genetic testing as a third component to influence this process. Future studies should consider the evaluation of contextual factors as an important and relevant component of the consent and decision-making process about genetic tests. Based on these results, we plan to develop and test a more comprehensive tool to assess informed consent for genetic testing. (shrink)

This paper analyzes a model of sequential parimutuel betting described as a two-horse race with a finite number of noise bettors and a finite number of strategic and symmetrically informed bettors. For generic objective probabilities that the favorite wins the race, a unique subgame perfect equilibrium is characterized. Additionally, two explanations for the favorite–longshot bias—according to which favorites win more often than the market's estimate of their winning chances imply—are offered. It is shown that this robust anomalous empirical regularity might (...) be due to the presence of transaction costs and/or to strategic bettors' subjective attitude to probabilities. (shrink)

BackgroundThe spread of COVID-19 has disrupted the lifestyles of the world’s population. In the workplace, the pandemic has affected all sectors and has changed the way work is organized and carried out. The health sector has been severely impacted by the pandemic and has faced enormous challenges in maintaining healthcare services while providing care to those infected by the virus. At the heart of this battle, healthcare managers were key players in ensuring the orchestration of operations and the physical and (...) mental availability of employees during the crisis. Although few studies have been conducted to identify organizational practices or leadership skills to be adopted in a crisis context, the concrete behaviors of managers have not been documented yet. Therefore, this study aims at filling this gap by studying middle managers’ behaviors facing COVID-19 crisis in the healthcare sector.MethodsUsing a qualitative approach, eight focus groups were conducted online during the pandemic with 37 middle managers from the healthcare community of a Quebec health establishment from April to June 2020. Thematic analyses were conducted, and a mixed-methods approach was used to analyse the data based on Viitala’s hierarchical model of management skills.ResultsBased on the six managerial skills proposed in the model of Viitala, 21 specific management behaviors were identified as having been deployed by middle managers at the beginning of the pandemic. Considering that the health sector has been profoundly shaken by this health crisis, in addition to being an environment likely to experience other crises, managers need to develop practical skills in various crisis management situations. Thus, the results guide practitioners by highlighting the importance of team-oriented management behaviors, especially in a crisis context. (shrink)

Functional diversity holds the promise of understanding ecosystems in ways unattainable by taxonomic diversity studies. Underlying this promise is the intuition that investigating the diversity of what organisms actually do—i.e. their functional traits—within ecosystems will generate more reliable insights into the ways these ecosystems behave, compared to considering only species diversity. But this promise also rests on several conceptual and methodological—i.e. epistemic—assumptions that cut across various theories and domains of ecology. These assumptions should be clearly addressed, notably for the sake (...) of an effective comparison and integration across domains, and for assessing whether or not to use functional diversity approaches for developing ecological management strategies. The objective of this contribution is to identify and critically analyze the most salient of these assumptions. To this aim, we provide an “epistemic roadmap” that pinpoints these assumptions along a set of historical, conceptual, empirical, theoretical, and normative dimensions. (shrink)

Visual processing is thought to function in a coarse-to-fine manner. Low spatial frequencies, conveying coarse information, would be processed early to generate predictions. These LSF-based predictions would facilitate the further integration of high spatial frequencies, conveying fine details. The predictive role of LSF might be crucial in automatic face processing, where high performance could be explained by an accurate selection of clues in early processing. In the present study, we used a visual Mismatch Negativity paradigm by presenting an unfiltered face (...) as standard stimulus, and the same face filtered in LSF or HSF as deviant, to investigate the predictive role of LSF vs. HSF during automatic face processing. If LSF are critical for predictions, we hypothesize that LSF deviants would elicit less prediction error than HSF deviants. Results show that both LSF and HSF deviants elicited a mismatch response compared with their equivalent in an equiprobable sequence. However, in line with our hypothesis, LSF deviants evoke significantly reduced mismatch responses compared to HSF deviants, particularly at later stages. The difference in mismatch between HSF and LSF conditions involves posterior areas and right fusiform gyrus. Overall, our findings suggest a predictive role of LSF during automatic face processing and a critical involvement of HSF in the fusiform during the conscious detection of changes in faces. (shrink)

The COVID‐19 pandemic has placed extraordinary stress on frontline healthcare providers as they encounter significant challenges and risks while caring for patients at the bedside. This study used qualitative research methods to explore nurses and respiratory therapists' experiences providing direct care to COVID‐19 patients during the first surge of the pandemic at a large academic medical center in the Northeastern United States. The purpose of this study was to explore their experiences as related to changes in staffing models and to (...) consider needs for additional support. Twenty semi‐structured interviews were conducted with sixteen nurses and four respiratory therapists via Zoom or by telephone. Interviews were transcribed verbatim, identifiers were removed, and data was coded and analyzed thematically. Five major themes characterize providers' experiences: a fear of the unknown, concerns about infection, perceived professional unpreparedness, isolation and alienation, and inescapable stress and distress. This manuscript analyzes the relationship between these themes and the concept of moral distress and finds that some, but not all, of the challenges that providers faced during this time align with previous definitions of the concept. This points to the possibility of broadening the conceptual parameters of moral distress to account for providers' experiences of treating patients with novel illnesses while encountering institutional and clinical challenges. (shrink)

Analysis of sites of newly integrated DNA in cellular genomes is important to several fields, but methods for analyzing and visualizing these datasets are still under development. Here, we describe tools for data analysis and visualization that take as input integration site data from our INSPIIRED pipeline. Paired-end sequencing allows inference of the numbers of transduced cells as well as the distributions of integration sites in target genomes. We present interactive heatmaps that allow comparison of distributions of integration sites to (...) genomic features and that support numerous user-defined statistical tests. To summarize integration site data from human gene therapy samples, we developed a reproducible report format that catalogs sample population structure, longitudinal dynamics, and integration frequency near cancer-associated genes. We also introduce a novel summary statistic, the UC50, which provides a single number summarizing possible clonal expansion. Using these tools, we characterize ongoing longitudinal characterization of a patient from the first trial to treat severe combined immunodeficiency-X1, showing successful reconstitution for 15 years accompanied by persistence of a cell clone with an integration site near the cancer-associated gene CCND2. Software is available at https://github.com/BushmanLab/INSPIIRED. (shrink)

Ce livre retrace la vie et l’activité éducative de Marie Souvestre, qui crée durant la seconde moitié du XIXe siècle deux établissements d’enseignement non confessionnels destinés à accueillir des jeunes filles en internat. Avec Caroline Dussaut – dont on sait peu de choses – elle fonde le premier, baptisé « Les Ruches », à Avon (Fontainebleau). Cette institution novatrice, réservée à des élèves non françaises, est dirigée par les deux femmes de 1864 à 1883. Après sa rupture – à (...) la fois amour... (shrink)

The law of the Milanese Church in early modern times was both postulated and experimental. Just after Trent, Carlo Borromeo exercised the “immemorial” rights of the archbishopric without demonstrating them. His successors interpreted his show of strength as custom, highlighting the fame of archbishop’s acts, therefore the consensus populi, at a time when this argument faded into canonical doctrine. But the common experience was only valid to confirm saint Carlo’s intuition and deeds. In 1620, such reasoning justified the bearing of (...) arms by the Archbishop’s minions, with description and evidence: was it narratively and legally effective? (shrink)

This article provides an account of the cultural changes induced by the pandemic, and draws on the tradition of critical theory (especially the work of Horkheimer and Adorno, and Fromm) and the work of Bernard Stiegler to critically assess their impact. It is argued that the rise of online forms of consumption based around streaming have had a deleterious impact on the critical faculties of the individual, and argues that the practice of walking – as proposed by Frederic Gros – (...) could potentially provide a remedy to the problems caused by the increase of uncritical cultural consumption. In this respect, it provides an original account of the relevance of both the tradition of critical theory and the work of Stiegler to the pandemic, together with providing a discussion around the act of walking as an active measure that one can implement in one’s life to counteract and (hopefully) overcome the detrimental effects that the commodification of leisure time has fostered during the pandemic. (shrink)

De son vivant, Josephine Butler (1828-1906) fut tout autant vilipendée que couverte d’éloges et, aujourd’hui encore, force est de constater que sa figure et son combat sont loin de faire consensus. Josephine Butler était-elle féministe? Ses convictions religieuses primaient-elles sur ses engagements en faveur de la condition des femmes? Tout en rendant accessible au public francophone les débats historiographiques quant à la sexualité à l’ère victorienne et les thèses débattues parmi les hi...

Cet ouvrage est issu du colloque « Le corps en lambeaux : violences sexuelles et violences sexuées faites aux femmes », organisé en 2014 à l’Université de Poitiers par différents laboratoires de sciences humaines. La diversité de méthodes d’analyses représentées (historiques, littéraires, sociologiques ou psychanalytiques) a pour but de faire dialoguer les différentes disciplines afin d’affiner la compréhension des violences faites aux femmes dans leurs multiples aspects et d’en prévenir les...

En droit pénal, le « parricide » et l’« infanticide » figurent parmi les circonstances aggravantes d’un crime. En 2014, les associations féministes ont sollicité la Délégation aux droits des femmes de l’Assemblée nationale afin que le « féminicide » soit également introduit dans le Code pénal en France. Dans la langue, le mot « féminicide » n’est entré au Robert qu’en 2015. Des dates, des définitions, des lois, des coutumes, des cas, voilà le point de départ de ce livre (...) d’une actualité tragiq... (shrink)

. Computational chemistry grew in a new era of “desktop modeling,” which coincided with a growing demand for modeling software, especially from the pharmaceutical industry. Parameterization of models in computational chemistry is an arduous enterprise, and we argue that this activity leads, in this specific context, to tensions among scientists regarding the epistemic opacity transparency of parameterized methods and the software implementing them. We relate one flame war from the Computational Chemistry mailing List in order to assess in detail the (...) relationships between modeling methods, parameterization, software and the various forms of their enclosure or disclosure. Our claim is that parameterization issues are an important and often neglected source of epistemic opacity and that this opacity is entangled in methods and software alike. Models and software must be addressed together to understand the epistemological tensions at stake. (shrink)

The author attempts to encompass the self, or a self, that, while at some times appears to be his own, at other times not, thus encompassing and continually morphing. It is a mixture of poetry and prose.

This selection consists of extracts from writings of women concerned solely with the pursuit of abstract ideas, historically contextualized. The texts, for the most part, reflect issues widely debated in their contemporary societies. Extracts from lesser-known writers are also included, providing a diversity of arguments spanning four centuries and including some notable contemporary philosophers.

A leader in the modern commentary on ethics and philosophy, Mary Warnock casts a critical eye over her life and times.

How is hope to be found amid the ethical and political dilemmas of modern life? Writer and philosopher Mary Zournazi brought her questions to some of the most thoughtful intellectuals at work today. She discusses "joyful revolt" with Julia Kristeva, the idea of "the rest of the world" with Gayatri Spivak, the "art of living" with Michel Serres, the "carnival of the senses" with Michael Taussig, the relation of hope to passion and to politics with Chantal Mouffe and Ernesto Laclau. (...) A dozen stimulating minds weigh in with their visions of a better social and political order. The result is a collaboration - of writing, of thinking, and of politics - that demonstrates more clearly than any single-authored project could how ideas encountering one another can produce the vision needed for social change. (shrink)

All religion and much philosophy has been concerned with the contrast between the ephemeral and the eternal. Human beings have always sought ways to overcome time, and to prove that death is not the end. This book consists then in an exploration of certain closely related ideas: personal identity, time, history and our commitment to the future, and the role of imagination in life.

En este libro, la autora desarrolla su concepción del juicio reflexionante inspirada en Emmanuel Kant y en Hannah Arendt para concentrarse en cómo cierto tipo de narraciones modelan nuestras nociones de lo que consideramos moral. Lara nos ofrece distintas concepciones sobre el mal en su formulación histórica mediante los ejemplos de las tragedias griegas, las diferentes concepciones sobre el mal en la obra de Shakespeare, el uso literario de la metáfora en la obra de Joseph Conrad y en narraciones fílmicas (...) que describen la crueldad humana. Lara sugiere que el aprendizaje moral es un proceso en el que intervienen las instituciones sociales, la voluntad de los individuos y de las sociedades para comprometerse a un debate abierto y con ello modelar los juicios colectivos sobre el pasado. Lara enfatiza que el juicio reflexionante se da entre un evento, una narración de dicho evento y la recepción pública de dicha narrativa. En este libro se aportan importantes métodos para la comprensión del fenómeno moral del mal, porque introducen nuevas verdades desvelatorias acerca de eventos particulares que no pueden ser simplemente captados por medio de categorías conceptuales. Lara utiliza como fuentes a Jürgen Habermas, Walter Benjamin, Primo Levi, Giorgio Agamben y Ariel Dorfman para probar la conclusión de este tipo de narraciones: la acción (de crueldad) ata de manera definitiva al perpetrador con su víctima. (shrink)