Au polyhandicap sévère, la société a réagi de trois manières différentes : par une « hémiplégie » visuelle d’abord, en l’ignorant, par une atteinte de son narcissisme, liée à sa culpabilité de le rejeter, et par une effraction enfin des enveloppes familiales. Pour les familles et les équipes éducatives, c’est la rencontre pérenne avec la différence, le traumatisme, mais aussi avec le déni. Même si historiquement cette prise en compte évolue, un travail de lien est à réaliser, ce que l’auteure (...) illustre par diverses situations issues de sa pratique. (shrink)

In the wake of the collapse of the Soviet bloc, it is timely to ask what continuing role, if any, the concept of sovereignty can and should play in the emerging "new world order." The aim of _Law, Power, and the Sovereign State_ is both to counter the argument that the end of the sovereign state is close at hand and to bring scholarship on sovereignty into the post-Cold War era. The study assesses sovereignty as status and as power and (...) examines the issue of what precisely constitutes a sovereign state. In determining how a political entity gains sovereignty, the authors introduce the requirements of de facto independence and de jure independence and explore the ambiguities inherent in each. They also examine the political process by which the international community formally confers sovereign status. Fowler and Bunck trace the continuing tension of the "chunk and basket" theories of sovereignty through the history of international sovereignty disputes and conclude by considering the usefulness of sovereignty as a concept in the future study and conduct of international affairs. They find that, despite frequent predictions of its imminent demise, the concept of sovereignty is alive and well as the twentieth century draws to a close. (shrink)

A 2011 National Academies of Sciences report called for an “Information Commons” and a “Knowledge Network” to revolutionize biomedical research and clinical care. We interviewed 41 expert stakeholders to examine governance, access, data collection, and privacy in the context of a medical information commons. Stakeholders' attitudes about MICs align with the NAS vision of an Information Commons; however, differences of opinion regarding clinical use and access warrant further research to explore policy and technological solutions.

In the context of academic research, a diversity of ethical issues, conditioned by the different roles of members within these institutions, arise. Previous studies on this topic addressed mainly the perceptions of researchers. However, to our knowledge, no studies have explored the transversal ethical issues from a wider spectrum, including other members of academic institutions as the research ethics board (REB) members, and the research ethics experts. The present study used a descriptive phenomenological approach to document the ethical issues experienced (...) by a heterogeneous group of Canadian researchers, REB members, and research ethics experts. Data collection involved socio-demographic questionnaires and individual semi-structured interviews. Following the triangulation of different perspectives (researchers, REB members and ethics experts), emerging ethical issues were synthesized in ten units of meaning: (1) research integrity, (2) conflicts of interest, (3) respect for research participants, (4) lack of supervision and power imbalances, (5) individualism and performance, (6) inadequate ethical guidance, (7) social injustices, (8) distributive injustices, (9) epistemic injustices, and (10) ethical distress. This study highlighted several problematic elements that can support the identification of future solutions to resolve transversal ethical issues in research that affect the heterogeneous members of the academic community. (shrink)

Arts and Humanities in Higher Education, Volume 21, Issue 2, Page 198-219, April 2022. This article presents playfulness as an emerging approach to learning in higher education that emphasises the arts and humanities across disciplines. The article is based on a qualitative, hermeneutical literature review in light of educational culture in higher education. The literature review indicates that playful approaches to learning stand in opposition to educational cultures that focus on rapidness and student performance. However, an educational culture of play (...) is about to establish itself, and this culture of play emphasises creativity in learning and human flourishing in education, perspectives that are connected to arts and humanities. The main findings cultures of time, performance and play lead to several questions about societal, institutional, and organisational educational culture, and regarding approaches to teaching, learning, humanity and society. The main contribution of this article is that a focus on playfulness offer the field of arts and humanities new possibilities in future education. (shrink)

Meaningful participant engagement has been identified as a key contributor to the success of efforts to share data via a “Medical Information Commons”. We present findings from expert stakeholder interviews aimed at understanding barriers to engagement and the appropriate role of MIC participants. Although most interviewees supported engagement, they distinguished between individual versus collective forms. They also noted challenges including representation and perceived inefficiency, prompting reflection on political aspects of engagement and efficiency concerns.

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

Background A significant number of women experience childbirth as traumatic. These experiences are often characterised by a loss of control coupled with a perceived lack of support and inadequate communication with health care professionals. Little is known about the choices women make in subsequent pregnancy(s) and birth(s), or why they make these choices. This study aimed to understand these choices and explore the reasons behind them. Methods A longitudinal Grounded Theory Methods (GTM) study involving 9 women was conducted. Over half (...) of the participants had a formal diagnosis of PTSD and/or PND related to the previous birth. Interviews were carried out at 3 timepoints perinatally. These findings are from the first interviews at 12-20 weeks. Results From the first days of pregnancy, this cohort of women were focused on concerns that this birth would be a repeated traumatic experience. The women were deliberately searching out and analysing information about their choices in this pregnancy and birth, and making plans which had two aims; firstly to avoid a repeat of their previous birth experience, and secondly to avoid a loss of control to other people during the birth. The women considered a range of birth choices, from elective caesareans to freebirth. Some women felt well supported by those around them, including health care professionals, partners, friends and family. Others did not, and were anticipating conflict in trying to assert their birth choices. Many early relationships with health care professionals were characterised by fear and mistrust. Discussion Women who have previously experienced a traumatic birth become pregnant again, have a strong desire to avoid a repeat experience and to feel in control of their birth choices. Access to robust information appears to help reduce uncertainty and arm women in their discussions with professionals. Similarly making plans and seeking to have them agreed with health care professionals at an early stage is used a way to reduce the risk of having a further traumatic experience. Implications for practice include supporting women in formulating and confirming pregnancy and birth plans at an early stage to reduce uncertainty and foster a sense of control. (shrink)

In Vanuatu, small-scale farmers’ subsistence still largely relies on the sustainable use and maintenance of a wide-ranging biodiversity out of which root and tuber crops provide the bulk of daily subsistence. In neighboring countries, foreign influence since the first European contacts, further associated changes and the introduction of new crop species have induced a loss of cultivated diversity. This paper presents a baseline study of the diversity of root and tuber crops in ten communities throughout Vanuatu. In a context where (...) the smallholders’ agrosystems are increasingly considered as key components for the global conservation of crop genetic resources, this study provides clues to better understand the effective roles of biodiversity in traditional agrosystems. It also provides insights on the rationale behind the constitution of agricultural portfolios and discusses how the cultivated diversity allows communities to cope with changes and pressures. The paper also shows that recently introduced crops neither seem to have compromised agricultural diversity nor drastically changed the agrosystems in Vanuatu. On the contrary, such crops are used by farmers to strengthen the resilience of their agrosystems. A discussion then presents the idea of continuity through change and novelty as a critical factor for resilience. The paper concludes by discussing the role of indigenous agriculture and culture in ensuring food security and in development strategies in a larger context. (shrink)

BackgroundMedical assistance in dying (MAID) has been legal in Québec since December 2015 and in the rest of Canada since July 2016. Since then, more than 60 people have donated their organs after MAID. Such donations raise ethical issues about respect of patients’ autonomy, potential pressure to choose MAID, the information given to potential donors, the acceptability of directed donations in such a context and the possibility of death by donation. The objective of this study was to explore Québec professionals’ (...) perspectives on the ethical issues related to organ donation after MAID.MethodsWe conducted semi-directed interviews with 21 health care professionals involved in organ donation such as intensivists and intensive care nurses, operating room nurses, organ donation nurses and coordinators.ResultsThe participants were all favourable to organ donation after MAID in order to respect patients’ autonomy. They also favoured informing all potential donors of the possibility of donating organs. They highlighted the importance of assessing donors’ reasons for requesting MAID during the assessment. They were divided on directed donation, living donation before MAID and death by donation.ConclusionOrgan donation after MAID was widely accepted among the participants, based on the principle of respect for the donor’s autonomy. The findings of this study only provide the perspectives of Québec health care professionals involved in organ donation. Future studies are needed to gather other stakeholders’ perspectives on this issue as well as patients’ and families’ experiences of organ donation after MAID. (shrink)

In cognitive science, there is a tacit norm that phenomena such as cultural variation or synaesthesia are worthy examples of cognitive diversity that contribute to a better understanding of cognition, but that other forms of cognitive diversity (e.g., autism, attention deficit hyperactivity disorder/ADHD, and dyslexia) are primarily interesting only as examples of deficit, dysfunction, or impairment. This status quo is dehumanizing and holds back much-needed research. In contrast, the neurodiversity paradigm argues that such experiences are not necessarily deficits but rather (...) are natural reflections of biodiversity. Here, we propose that neurodiversity is an important topic for future research in cognitive science. We discuss why cognitive science has thus far failed to engage with neurodiversity, why this gap presents both ethical and scientific challenges for the field, and, crucially, why cognitive science will produce better theories of human cognition if the field engages with neurodiversity in the same way that it values other forms of cognitive diversity. Doing so will not only empower marginalized researchers but will also present an opportunity for cognitive science to benefit from the unique contributions of neurodivergent researchers and communities. (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)

Understanding the clinical significance of variants associated with hereditary cancer risk requires access to a pooled data resource or network of resources—a “cancer gene variant commons”—incorporating representative, well-characterized genetic data, metadata, and, for some purposes, pathways to case-level data. Several initiatives have invested significant resources into collecting and sharing cancer gene variant data, but further progress hinges on identifying and addressing unresolved policy issues. This commentary provides insights from a modified policy Delphi process involving experts from a range of stakeholder (...) groups involved in the data-sharing ecosystem. In particular, we describe policy issues and options generated by Delphi participants in five domains critical to the development of an effective cancer gene variant commons: incentives, financial sustainability, privacy and security, equity, and data quality. Our intention is to stimulate wider discussion and lay a foundation for further work evaluating policy options more in-depth and mapping them to those who have the power to bring about change. Addressing issues in these five domains will contribute to a cancer gene variant commons that supports better care for at-risk and affected patients, empowers patient communities, and advances research on hereditary cancers. (shrink)

In "Implementing Expanded Prenatal Genetic Testing: Should Parents Have Access to Any and All Fetal Genetic Information?," Bayefsky and Berkman argue in favor of establishing three categorie...

Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons. We identify participant-centricity and trustworthiness as the most important features of an MIC and discuss the implications for those seeking to create a sustainable, useful, and widely available collection of linked resources for research and other purposes.

Glycerol is a small and simple molecule produced in the breakdown of glucose, proteins, pyruvate, triacylglycerols and other glycerolipid, as well as release from dietary fats. An increasing number of observations show that glycerol is probably involved in a surprising variety of physiopathologic mechanisms. Glycerol has long been known to play fundamental roles in several vital physiological processes, in prokaryotes and eukaryotes, and is an important intermediate of energy metabolism. Despite some differences in the details of their operation, many of (...) these mechanisms have been preserved throughout evolution, demonstrating their fundamental importance. In particular, glycerol can control osmotic activity and crystal formation and then act as a cryoprotective agent. Furthermore, its properties make it useful in numerous industrial, therapeutic and diagnostic applications. Few studies have focussed directly on glycerol, however, and while its metabolism is increasingly well documented, much of the details remain unknown. Considering the importance of glycerol in multiple vital physiological processes, its study could help unlock important physiopathological mechanisms. BioEssays 23:534–542, 2001. © 2001 John Wiley & Sons, Inc. (shrink)

Jusqu’à une date récente, la voiture reposait sur des principes bien établis de mécanique et de thermodynamique, elle doit maintenant intégrer les technologies numériques. Tiraillé entre l’appel du progrès et les peurs qui y sont associées, le législateur a un rôle clé à jouer dans les nombreux domaines qui seront touchés par la montée en puissance de l’intelligence artificielle. Sous le chapitre des véhicules autonomes tout particulièrement, accepter de confier sa sécurité à une intelligence artificielle est un pas essentiel, mais (...) délicat, dans le processus du développement. C’est pourquoi on peut se demander si le principe de précaution pourrait protéger efficacement contre les appréhensions légitimes liées à ces innovations. (shrink)

Virtue and the Moral Life brings together distinguished philosophers and theologians with younger scholars of consummate promise to produce ten essays that engage both academics and students of ethics. This collection explores the role virtues play in identifying the good life and the good society.

Virtue and the Moral Life brings together distinguished philosophers and theologians with younger scholars of consummate promise to produce ten essays that engage both academics and students of ethics. This collection explores the role virtues play in identifying the good life and the good society.

Background: Family members are often required to act as substitute decision-makers when health care or research participation decisions must be made for an incapacitated relative. Yet most families are unable to accurately predict older adult preferences regarding future health care and willingness to engage in research studies. Discussion and documentation of preferences could improve proxies' abilities to decide for their loved ones. This trial assesses the efficacy of an advance planning intervention in improving the accuracy of substitute decision-making and increasing (...) the frequency of documented preferences for health care and research. It also investigates the financial impact on the healthcare system of improving substitute decision-making.Methods/DesignDyads (n = 240) comprising an older adult and his/her self-selected proxy are randomly allocated to the experimental or control group, after stratification for type of designated proxy and self-report of prior documentation of healthcare preferences. At baseline, clinical and research vignettes are used to elicit older adult preferences and assess the ability of their proxy to predict those preferences. Responses are elicited under four health states, ranging from the subject's current health state to severe dementia. For each state, we estimated the public costs of the healthcare services that would typically be provided to a patient under these scenarios. Experimental dyads are visited at home, twice, by a specially trained facilitator who communicates the dyad-specific results of the concordance assessment, helps older adults convey their wishes to their proxies, and offers assistance in completing a guide entitled My Preferences that we designed specifically for that purpose. In between these meetings, experimental dyads attend a group information session about My Preferences. Control dyads attend three monthly workshops aimed at promoting healthy behaviors. Concordance assessments are repeated at the end of the intervention and 6 months later to assess improvement in predictive accuracy and cost savings, if any. Copies of completed guides are made at the time of these assessments.DiscussionThis study will determine whether the tested intervention guides proxies in making decisions that concur with those of older adults, motivates the latter to record their wishes in writing, and yields savings for the healthcare system.Trial RegistrationISRCTN89993391. (shrink)

The objective of this paper is to investigate, through a qualitative study based on 38 semi-structured interviews with agents who provide assurance of sustainability reports, how they perceive and manage ethical issues underlying the verification of sustainability reports. Most of the ethical issues observed involve four interconnected aspects: the commercialism underlying sustainability assurance, the symbolic nature of the verification process, interdependency between auditing and consulting activities, and familiarity with the audited companies. The findings shed light on the reflexivity of assurance (...) providers on these issues and the legitimation strategies used to explain how they reconcile the independence and impartiality required for auditing activities with commercial aspects related to client–provider relationships. The study also shows the role of contextual variables in the ethics of assurance services. The paper contributes to the literature on the legitimacy of sustainability assurance and commercialism of the audit function. Practical implications and avenues for future research are also developed. (shrink)

Moral or ethical questions are vital because they affect our daily lives: what is the best choice we can make, the best action to take in a given situation, and ultimately, the best way to live our lives? Health ethics has contributed to moving ethics toward a more experience-based and user-oriented theoretical and methodological stance but remains in our practice an incomplete lever for human development and flourishing. This context led us to envision and develop the stance of a “living (...) ethics”, described in this inaugural collective and programmatic paper as an effort to consolidate creative collaboration between a wide array of stakeholders. We engaged in a participatory discussion and collective writing process known as instrumentalist concept analysis. This process included initial local consultations, an exploratory literature review, the constitution of a working group of 21 co-authors, and 8 workshops supporting a collaborative thinking and writing process. First, a living ethics designates a stance attentive to human experience and the role played by morality in human existence. Second, a living ethics represents an ongoing effort to interrogate and scrutinize our moral experiences to facilitate adaptation of people and contexts. It promotes the active and inclusive engagement of both individuals and communities in envisioning and enacting scenarios which correspond to their flourishing as authentic ethical agents. Living ethics encourages meaningful participation of stakeholders because moral questions touch deeply upon who we are and who we want to be. We explain various aspects of a living ethics stance, including its theoretical, methodological, and practical implications as well as some barriers to its enactment based on the reflections resulting from the collaborative thinking and writing process. (shrink)

The eight essays contained in this book explore the portrayal of women, and various philosophical responses to that portrayal in contemporary post-civil rights society. They bring feminist voices to the conversation about gender and attests to the importance of feminist critique in what is sometimes claimed to be a post-feminist era.

In this review, we describe some of the central philosophical issues facing origins-of-life research and provide a targeted history of the developments that have led to the multidisciplinary field of origins-of-life studies. We outline these issues and developments to guide researchers and students from all fields. With respect to philosophy, we provide brief summaries of debates with respect to (1) definitions (or theories) of life, what life is and how research should be conducted in the absence of an accepted theory (...) of life, (2) the distinctions between synthetic, historical, and universal projects in origins-of-life studies, issues with strategies for inferring the origins of life, such as (3) the nature of the first living entities (the “bottom up” approach) and (4) how to infer the nature of the last universal common ancestor (the “top down” approach), and (5) the status of origins of life as a science. Each of these debates influences the others. Although there are clusters of researchers that agree on some answers to these issues, each of these debates is still open. With respect to history, we outline several independent paths that have led to some of the approaches now prevalent in origins-of-life studies. These include one path from early views of life through the scientific revolutions brought about by Linnaeus (von Linn.), Wöhler, Miller, and others. In this approach, new theories, tools, and evidence guide new thoughts about the nature of life and its origin.We also describe another family of paths motivated by a” circularity” approach to life, which is guided by such thinkers as Maturana & Varela, Gánti, Rosen, and others. These views echo ideas developed by Kant and Aristotle, though they do so using modern science in ways that produce exciting avenues of investigation. By exploring the history of these ideas, we can see how many of the issues that currently interest us have been guided by the contexts in which the ideas were developed. The disciplinary backgrounds of each of these scholars has influenced the questions they sought to answer, the experiments they envisioned, and the kinds of data they collected. We conclude by encouraging scientists and scholars in the humanities and social sciences to explore ways in which they can interact to provide a deeper understanding of the conceptual assumptions, structure, and history of origins-of-life research. This may be useful to help frame future research agendas and bring awareness to the multifaceted issues facing this challenging scientific question. (shrink)

Aworkshop was held August 26–28, 2015, by the Earth- Life Science Institute (ELSI) Origins Network (EON, see Appendix I) at the Tokyo Institute of Technology. This meeting gathered a diverse group of around 40 scholars researching the origins of life (OoL) from various perspectives with the intent to find common ground, identify key questions and investigations for progress, and guide EON by suggesting a roadmap of activities. Specific challenges that the attendees were encouraged to address included the following: What key (...) questions, ideas, and investigations should the OoL research community address in the near and long term? How can this community better organize itself and prioritize its efforts? What roles can particular subfields play, and what can ELSI and EON do to facilitate research progress? (See also Appendix II.) The present document is a product of that workshop; a white paper that serves as a record of the discussion that took place and a guide and stimulus to the solution of the most urgent and important issues in the study of the OoL. This paper is not intended to be comprehensive or a balanced representation of the opinions of the entire OoL research community. It is intended to present a number of important position statements that contain many aspirational goals and suggestions as to how progress can be made in understanding the OoL. The key role played in the field by current societies and recurring meetings over the past many decades is fully acknowledged, including the International Society for the Study of the Origin of Life (ISSOL) and its official journal Origins of Life and Evolution of Biospheres, as well as the International Society for Artificial Life (ISAL). (shrink)

_Strange Wonder_ confronts Western philosophy's ambivalent relationship to the Platonic "wonder" that reveals the strangeness of the everyday. On the one hand, this wonder is said to be the origin of all philosophy. On the other hand, it is associated with a kind of ignorance that ought to be extinguished as swiftly as possible. By endeavoring to resolve wonder's indeterminacy into certainty and calculability, philosophy paradoxically secures itself at the expense of its own condition of possibility. _Strange Wonder_ locates a (...) reopening of wonder's primordial uncertainty in the work of Martin Heidegger, for whom wonder is first experienced as the shock at the groundlessness of things and then as an astonishment that things nevertheless _are_. Mary-Jane Rubenstein traces this double movement through the thought of Emmanuel Levinas, Jean-Luc Nancy, and Jacques Derrida, ultimately thematizing wonder as the awesome, awful opening that exposes thinking to devastation as well as transformation. Rubenstein's study shows that wonder reveals the extraordinary in and through the ordinary, and is therefore crucial to the task of reimagining political, religious, and ethical terrain. (shrink)

_Strange Wonder_ confronts Western philosophy's ambivalent relationship to the Platonic "wonder" that reveals the strangeness of the everyday. On the one hand, this wonder is said to be the origin of all philosophy. On the other hand, it is associated with a kind of ignorance that ought to be extinguished as swiftly as possible. By endeavoring to resolve wonder's indeterminacy into certainty and calculability, philosophy paradoxically secures itself at the expense of its own condition of possibility. _Strange Wonder_ locates a (...) reopening of wonder's primordial uncertainty in the work of Martin Heidegger, for whom wonder is first experienced as the shock at the groundlessness of things and then as an astonishment that things nevertheless _are_. Mary-Jane Rubenstein traces this double movement through the thought of Emmanuel Levinas, Jean-Luc Nancy, and Jacques Derrida, ultimately thematizing wonder as the awesome, awful opening that exposes thinking to devastation as well as transformation. Rubenstein's study shows that wonder reveals the extraordinary in and through the ordinary, and is therefore crucial to the task of reimagining political, religious, and ethical terrain. (shrink)

. The author first engages the problem of defining the value of a photograph, not in terms of its commercial or monetary value but of its actual or potential use. Walter Benjamin's influential writings on photography are discussed, notably his complex metaphor of "aura" as applied to both handmade art and the photograph, with the author challenging Benjamin's contention that works of art do not require titles, whereas photographs do.

Introduction: Wonder and the births of philosophy -- Socrates' small difficulty -- The wound of wonder -- The death and resurrection of Thaumazein -- The Thales dilemma -- Repetition : Martin Heidegger -- Metaphysics small difficulty -- Wonder and the first beginning -- Wonder and the other beginning -- Theaetetus redux : the ghost of the Pseudes Doxa -- Once again to the cave -- Rethinking Thaumazein -- Openness : Emmanuel Levinas -- Passivity and responsibility -- The ethics of the (...) cave -- Infinity and astonishment -- Opening out : from existent to existence -- Closing down : from existence to existent -- Locking up : totality and infinity -- The phantom of the autrement -- Awakening -- Relation : Jean-Luc Nancy -- The problem of Mitsein -- Mitsein as essential inessentiality -- The myth of essentialism -- Unworking -- Interruption -- Repetition -- Decision : Jacques Derrida -- Thaumazein, the irresponsible, and the undecidable -- Hospitality -- Undecidability revisited -- Much madness is divinest sense (or, who comes after the decision?) -- How to avoid the subject (or, that's not my hedgehog!) -- Undecidability, take three : think here of Kierkegaard -- Mysterium tremendum -- Postlude: Possibility. (shrink)