Comme l’indique le sous-titre, ce livre n’est pas une biographie, mais une enquête sur la disparition dans la mémoire collective d’une grande résistante, une des six femmes Compagnons de la Libération, Laure Diebold-Mutschler. Engagée dès 1940 dans la Résistance, à l’âge de vingt-cinq ans, elle est notamment agent de liaison du réseau Mithridate avant d’entrer à Lyon dans les Forces Françaises libres et de devenir la secrétaire de Jean Moulin. Elle sera arrêtée le 24 septembre 1943 à Paris, a...

The visual attention (VA) span is defined as the amount of distinct visual elements which can be processed in parallel in a multi-element array. Both recent empirical data and theoretical accounts suggest that a VA span deficit might contribute to developmental dyslexia, independently of a phonological disorder. In this study, this hypothesis was assessed in two large samples of French and British dyslexic children whose performance was compared to that of chronological-age matched control children. Results of the French study show (...) that the VA span capacities account for a substantial amount of unique variance in reading, as do phonological skills. The British study replicates this finding and further reveals that the contribution of the VA span to reading performance remains even after controlling IQ, verbal fluency, vocabulary and single letter identification skills, in addition to phoneme awareness. In both studies, most dyslexic children exhibit a selective phonological or VA span disorder. Overall, these findings support a multi-factorial view of developmental dyslexia. In many cases, developmental reading disorders do not seem to be due to phonological disorders. We propose that a VA span deficit is a likely alternative underlying cognitive deficit in dyslexia. (shrink)

Recent efforts in a range of scientific fields have emphasised research and methods concerning individual differences and individualisation. This article brings together various scientific disciplines—ecology, evolution, and animal behaviour; medicine and psychiatry; public health and sport/exercise science; sociology; psychology; economics and management science—and presents their research on individualisation. We then clarify the concept of individualisation as it appears in the disciplinary casework by distinguishing three kinds of individualisation studied in and across these disciplines: Individualisation ONE as creating/changing individual differences (the (...) process that generates differences between individuals: intrapopulation or intraspecific variation/heterogeneity); Individualisation TWO as individualising applications (the tailoring or customising of something—information, treatment, a product or service, etc.—for an individual or specific group of individuals); and Individualisation THREE as social changes influencing autonomy, risk, and responsibilities (the process discussed under the rubric of sociological individualisation theory). Moreover, we analyse conceptual links between individualisation and individuality, and characterise different sorts of individuality that the disciplines study. This paper aims to promote interdisciplinary research concerning individualisation by establishing a common conceptual-theoretical basis, while leaving room for disciplinary differences. (shrink)

There is a need for empirically based research on social and ethical challenges related to informed consent processes, particularly in studies focusing on adolescent sexual and reproductive health. In a pilot study of a school-based pregnancy prevention intervention in rural Zambia, the majority of the guardians who were asked to consent to their daughters’ participation, refused. In this paper we explore the reasons behind the low participation in the pilot with particular attention to challenges related to the community engagement and (...) informed consent process. The pilot was implemented in two schools and examined the acceptability of a package of interventions including economic support to families to keep their girls in school, pocket money for girls, youth club meetings on reproductive health, and community meetings to sensitize the community. Focus group discussions were conducted with girls who participated in the pilot, boys in their class and with parents. Individual semi-structured interviews were conducted with teachers, peer educators and community health workers involved in the coordination of the intervention as well as with religious and traditional leaders. Data were analyzed through thematic analysis. The findings indicate that inadequate use of recognized community communication channels during the community engagement process and dissemination of information about the pilot resulted in limited understanding of the pilot concept by the community. This surfaced through uncertainty and fear that the intervention may result in loss of control over daughters, worries about why money was provided unconditionally to girls, and suspicion of links to satanism. The sense of insecurity appeared to be exacerbated by low literacy levels, poverty, fear of loss of bride wealth, perceived disregard for local perceptions of social status, and scanty trust in the actors implementing the pilot. Inadequate use of locally appropriate channels in the dissemination of information created room for interpretation and facilitated development of mistrust, undermining the conditions for community engagement and actual informed consent. A key lesson learnt is the importance of taking seriously the complexity of local values and structures that may impact people’s capability to consent or not consent to a study in an informed manner. (shrink)

BackgroundThe discovery of biomarkers of ageing has led to the development of predictors of impending natural death and has paved the way for personalised estimation of the risk of death in the general population. This study intends to identify the ethical resources available to approach the idea of a long-lasting dying process and consider the perspective of death prediction. The reflection on human mortality is necessary but not sufficient to face this issue. Knowledge about death anticipation in clinical contexts allows (...) for a better understanding of it. Still, the very notion of prediction and its implications must be clarified. This study outlines in a prospective way issues that call for further investigation in the various fields concerned: ethical, psychological, medical and social.MethodsThe study is based on an interdisciplinary approach, a combination of philosophy, clinical psychology, medicine, demography, biology and actuarial science.ResultsThe present study proposes an understanding of death prediction based on its distinction with the relationship to human mortality and death anticipation, and on the analogy with the implications of genetic testing performed in pre-symptomatic stages of a disease. It leads to the identification of a multi-layered issue, including the individual and personal relationship to death prediction, the potential medical uses of biomarkers of ageing, the social and economic implications of the latter, especially in regard to the way longevity risk is perceived.ConclusionsThe present study work strives to propose a first sketch of what the implications of death prediction as such could be - from an individual, medical and social point of view. Both with anti-ageing medicine and the transhumanist quest for immortality, research on biomarkers of ageing brings back to the forefront crucial ethical matters: should we, as human beings, keep ignoring certain things, primarily the moment of our death, be it an estimation of it? If such knowledge was available, who should be informed about it and how such information should be given? Is it a knowledge that could be socially shared? (shrink)

Achieving an ambitious goal frequently requires succeeding in a sequence of intermediate tasks, some being critical for the final outcome, and others not. However, individuals are not always able to provide a level of effort sufficient to guarantee success in all such intermediate tasks. The ability to manage effort throughout the sequence of tasks is, therefore, critical when resources are limited. In this paper, we propose a criterion of importance that is person- and context-specific, as it is based on how (...) an individual should optimally allocate a limited stock of exhaustible efforts over tasks. We test this importance criterion in a laboratory experiment that reproduces the main features of a tennis match. We show that our importance criterion is able to predict the individuals’ performance and it outperforms the Morris-importance criterion that defines the importance of a point in terms of its impact on the probability of achieving the final outcome. (shrink)

In this article we argue that the social value of health research should be conceptualized as a function of both the expected benefits of the research and the priority that the beneficiaries deserve. People deserve greater priority the worse off they are. This conception of social value can be applied for at least two important purposes: in health research priority setting when research funders, policy-makers, or researchers decide between alternative research projects; and in evaluating the ethics of proposed research proposals (...) when research ethics committees assess whether the social value of the research is sufficient to justify the risks and burdens to research participants and others. In assessing how far a proposed research project will advance the interests of people who are more disadvantaged, research priority setters and RECs should examine the diseases that the research targets and the type of research. Just as certain diseases impose a greater burden on people who are more disadvantaged, so certain types of intervention and forms of research are more likely to benefit people who are more disadvantaged. We outline which populations are likely to be representative of the global worst off and identify what types of health research, and which disease categories, are priorities for these populations. (shrink)

Respect and dignity are central to moral life, and have a particular importance in health care settings such as the intensive care unit (ICU). We conducted 15 semistructured interviews with 21 participants during an ICU admission to explore the definition of, and specific behaviors that demonstrate, respect and dignity during treatment in the ICU. We transcribed interviews and conducted thematic qualitative analysis. Seven themes emerged that focused on what it means to be treated with respect and/or dignity: treated as a (...) person; Golden Rule; acknowledgement; treated as family/friend; treated as an individual; treated as important/valuable; and treated as equal. Participants described particular behaviors or actions that were considered related to demonstrating treatment with respect and dignity: listening; honesty/giving information; attention to body/modesty/appearance; caring/bedside manner; patient and family as an information source; attention to pain; and responsiveness. These behaviors provide a framework for improving experiences with care in the ICU. (shrink)

Although clinical ethics consultation is a high-stakes endeavor with an increasing prominence in health care systems, progress in developing standards for quality is challenging. In this article, we describe the results of a pilot project utilizing portfolios as an evaluation tool. We found that this approach is feasible and resulted in a reasonably wide distribution of scores among the 23 submitted portfolios that we evaluated. We discuss limitations and implications of these results, and suggest that this is a significant step (...) on the pathway to an eventual certification process for clinical ethics consultants. (shrink)

Mary Wollstonecraft's A Vindication of the Rights of Woman was a ground-breaking work of literature which still resonates in feminism and human rights movements of today.

First published in 1999. Routledge is an imprint of Taylor & Francis, an informa company.

Simone Weil was a defining figure of the twentieth century; a philosopher, Christian, resistance fighter, Labour activist and teacher, described by Albert Camus as 'the only great spirit of our time'. In 1941 Weil was introduced to Father Joseph-Marie Perrin, a Dominican priest whose friendship became a key influence on her life. When Weil asked Perrin for work as a farm hand he sent her to Gustave Thibon, a farmer and Christian philosopher. Weil stayed with the Thibon family, (...) working in the fields and writing the notebooks which became _Gravity and Grace _and other posthumous works. Perrin and Thibon met Weil at a time when her spiritual life and creative genius were at their height. During the short but deep period of their acquaintance with her, they came to know her as she actually was. First published in English in 1953, and now introduced by J.P. Little, this unique portrait depicts Weil through the eyes of her friends, not as a strange and unaccountable genius but as an ardent and human person in search of truth and knowledge. (shrink)

Treating patients and their family members with respect and dignity is a broadly accepted goal of health care. The work presented in this article is part of a larger project aimed at better understanding what constitutes treatment with respect and dignity in the ICU to improve the care that patients and family members receive in this regard. Direct observation was selected as one of the methods to facilitate this understanding because it provides the opportunity to see and document what actually (...) occurs during encounters among patients, their families, and clinicians. This article reports seven major thematic domains and many subthemes that together create a detailed account of the interpersonal and environmental components of treatment with respect and dignity. Attention to these components might enhance the experience and treatment of patients and family members. (shrink)

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

Guidelines advise that x-rays do not contribute to the clinical management of simple nasal fractures. However, in cases of simple nasal fracture secondary to assault, a facial x-ray may provide additional legal evidence should the victim wish to press charges, though there is no published guidance. We examine the ethical and medico-legal issues surrounding this controversial area.