Rare Disease research has seen tremendous advancements over the last decades, with the development of new technologies, various global collaborative efforts and improved data sharing. To maximize the impact of and to further build on these developments, there is a need for model consent clauses for rare diseases research, in order to improve data interoperability, to meet the informational needs of participants, and to ensure proper ethical and legal use of data sources and participants’ overall protection. A global Task Force (...) was set up to develop model consent clauses specific to rare diseases research, that are comprehensive, harmonized, readily accessible, and internationally applicable, facilitating the recruitment and consent of rare disease research participants around the world. Existing consent forms and notices of consent were analyzed and classified under different consent themes, which were used as background to develop the model consent clauses. The IRDiRC-GA4GH MCC Task Force met in September 2018, to discuss and design model consent clauses. Based on analyzed consent forms, they listed generic core elements and designed the following rare disease research specific core elements; Rare Disease Research Introductory Clause, Familial Participation, Audio/Visual Imaging, Collecting, storing, sharing of rare disease data, Recontact for matching, Data Linkage, Return of Results to Family Members, Incapacity/Death, and Benefits. The model consent clauses presented in this article have been drafted to highlight consent elements that bear in mind the trends in rare disease research, while providing a tool to help foster harmonization and collaborative efforts. (shrink)

This is a book in feminist theory and social and political philosophy. Many of the chapters are versions of earlier papers published as journal articles and as book chapters. It presents a multi-systems theory of social domination, discussing three main ones: economic class, gender and (social) race. It presents a maerialist feminist theory of gender and sexuality and discusses lesbian identity as well as issues of motherhood.

Examines how violence has been conceptually and rhetorically put to use in continental social theory.

Fields of enquiry. Rome Harré on What is social science -- Toby Miller on Cultural studies -- Lawrence Sherman on Criminology -- Jonathan Haidt on Moral psychology -- Robert J. Shiller on Behavioural economics -- Births, deaths and human population. Sarah Franklin on the Sociology of reproductive technology -- Ann Oakley on Women's experience of childbirth -- Sarah Harper on the Population challenge for the 21st century -- Steven Pinker on Violence and human nature -- Social science through different lenses. (...) Gregory Clark on Names -- Robin Dunbar on Dunbar numbers -- David Goldblatt on the Sociology of football -- Trevor Marchand on Craft -- Bruce Hood on the Supernatural -- Doreen Massey on Space -- Politics and social science. Craig Calhoun on Protest movements -- Danny Dorling on Inequality -- Kate Pickett on the Case for equality. (shrink)

Cet article montre ce que la cooccurrence peut nous apprendre sur la monosémie et comment on peut exploiter l’analyse des cooccurrences de deuxième ordre pour quantifier l’analyse sémantique. Les analyses sont conduites sur un corpus technique (1,7 million d’occurrences) relevant du domaine spécialisé des machines-outils pour l’usinage des métaux. Dans cet article, nous expliquons la méthodologie adoptée pour déterminer le degré de monosémie d’un mot technique à partir de l’analyse du recoupement de ses cooccurrences de deuxième ordre. Dans le but (...) d’affiner les résultats de la mesure de recoupement, nous procédons également à quelques expérimentations qui vont au-delà du simple repérage statistique des cooccurrences et qui font varier différents paramètres, tels que la fenêtre d’observation, le seuil de significativité et la forme graphique ou le lemme des cooccurrences de premier et deuxième ordre. Finalement, nous abordons l’importance de l’intégration des étiquettes morphosyntaxiques dans l’analyse des cooccurrences. (shrink)

Background: Person-centred care is often described as an ideal way of preserving vulnerable persons’ wellbeing and dignity and an essential component of quality-care delivery. However, the staff find that making the care dignified is the most challenging issue, often because of effectivity, everyday stress and overload. In the interests of making the care more person-centred, systematic intervention involving ‘one-to-one contact’ (resident – carer) was trialled for 30 min twice a week over 12 months in two units in a nursing home (...) in Eastern Norway. Objectives: The aim of the study was to elicit healthcare staff’s experiences of implementing ‘one-to-one contact’ between residents and carers in nursing homes. Methods: The study has a grounded-theory inspired design. Two groups of health care staff were each interviewed three times. Data were collected over an 18-month period. Ethical considerations: The study was approved by the Data Protection Official for Research under the auspices of the Norwegian Social Science Data Services. Findings: The core category is ‘One-to-one contact’ at a nursing home is possible, but requires open-mindedness. The core category indicates that open-mindedness is required, since it does not take much for scepticism to take over and cause reversion to habitual practices. The category Expectant but Sceptical describes staff thoughts and experiences before the implementation phase got underway. The category Positive but Undecided describes staff experiences 6 months into the intervention and after 12 months. Conclusions: This study has revealed that systematic ‘one-to-one contact’ between resident and carer in nursing home is achievable, and that such a simple action might be an important step towards achieving more person-centred care as the resident is seen more as a person. However, in order to make a more person-centred and dignified approach to care constant attentiveness and awareness is required, as there were ongoing factors counteracting it. (shrink)

Objectification is a foundational concept in feminist theory, used to analyze such disparate social phenomena as sex work, representation of women's bodies, and sexual harassment. However, there has been an increasing trend among scholars of rejecting and re-evaluating the philosophical assumptions which underpin it. In this work, Cahill suggests an abandonment of the notion of objectification, on the basis of its dependence on a Kantian ideal of personhood. Such an ideal fails to recognize sufficiently the role the body plays in (...) personhood, and thus results in an implicit vilification of the body and sexuality. The problem with the phenomena associated with objectification is not that they render women objects, and therefore not-persons, but rather that they construct feminine subjectivity and sexuality as wholly derivative of masculine subjectivity and sexuality. Women, in other words, are not objectified as much as they are derivatized, turned into a mere reflection or projection of the other. Cahill argues for an ethics of materiality based upon a recognition of difference, thus working toward an ethics of sexuality that is decidedly ­and simultaneously ­incarnate and intersubjective. (shrink)

This paper investigates the spatial dimensions of olfactory perception, challenging philosophical views that marginalize smell in spatial navigation and cognition compared to visual phenomenology. I argue that both olfactory and visual perceptions—despite smell often being considered non-spatial or minimally spatial—involve intricate spatial structuring when processed through unconscious cognitive processes. An information-theoretical approach shows that cognitive inferences turn spatially deficient sensory data into spatialized perceptual content to generate spatial perception across sensory modalities. This challenges the idea that spatial perception is tied (...) to external features. My argument is supported by two lines of evidence: (i) figure-ground segregation across sensory modalities, suggesting a general mechanism in perceptual processing; (ii) recent neuroscientific evidence demonstrating how spatial information is processed in olfaction for navigation and environmental mapping. My analysis calls for a reevaluation of assumptions about the non-spatial nature of smell, highlighting significant cognitive and spatial capabilities in olfaction. (shrink)

This paper examines the three US national security strategies released by Presidents George W. Bush and Barack Obama since 9/11. These national security strategies are required presidential statements describing US plans for national security. The authors analyze Bush’s two and Obama’s one post-9/11 national security strategies and evaluate the argumentative framework of imperial righteousness in the documents. The rhetoric of American imperial righteousness contains four themes: national security, the nature of the enemy, freedom and democracy, and American morality. While there (...) are some differences between the documents, the authors argue that Bush and Obama both promoted the idea of imperial righteousness in their plans for American national security. Moreover, the four themes of imperial righteousness worked together effectively to advance America’s interests in world affairs. (shrink)

It is one of Jacques Derrida’s later texts, Le Toucher—Jean-Luc Nancy , wherein one finds his most sustained commentary on the philosophy of Maurice Merleau-Ponty. I argue that Derrida’s criticisms of Merleau-Ponty in this text conceal a significant proximity between his own elaboration of sensibility and that of Merleau-Ponty. Their respective accounts of sensibility are similar in two respects. Firstly, for them both, sensibility is born of a parsing of the self in a hiatus or interval that disrupts the movement (...) of auto-affection. The self can only be known as such through this exposure to alterity. Secondly, this exposure and opening is in no way normative for either thinker, which is to say that their accounts of sensibility are similar not only in structure but also insofar as sensibility for them both is a non-normative opening to ethics; it is an elaboration of embodiment that provokes the question of response but no definitive or prescriptive answer. Hence the structure of sensibility begs the question of ethics, and the problem of response, but can provide little by way of a normative ethics. (shrink)

The classroom community of inquiry aims at helping children make better judgments. If we can show that emotions are judgments or appraisals, it follows that they are educable. Such education of the emotions optimally should take place within the environment of communal inquiry with its focus on respect for persons, dialogue, concept formation, critical, creative and caring thinking. Children need help learning to identify their emotions, detecting assumptions upon which they lie and justifying these emotions to themselves and to others. (...) Such work involves helping children to be sensitive to the salient aspects of individual situations, developing a consciousness of criteria and the ideals from which these criteria ensue, and fostering a disposition to be willing to self correct when we discover through inquiry that our emotions are based on unwarranted beliefs. (shrink)

Fair competition law and public health law talk past each other when discussing pharmaceutical pricing and distribution. The former cannot agree on the relevant definition of consumer welfare. The latter does not fully comprehend the highly complex but inherently collective nature of pharmaceutical drug acquisition in the United States. This essay proposes to inject public health discourse into this debate to enrich it, focus it, and render it more accessible to those who must live by its outcome.

The feminist philosopher and social scientist shows how "gendering" has affected the social and natural sciences as she reconciles the long-standing dichotomy between the quantitative and qualitative methods and demonstrates the tandem use of both experimental and intuitive approaches.

In lieu of an abstract, here is a brief excerpt of the content:Misquotations from RealityAnn Lauterbach (bio)In the girdle of Aphrodite, in the crown, in the body of Helen and her phantom, beauty is superimposed over necessity, cloaking it in deceit. The necessary has a certain splendor, and behind any splendor one senses a metallic coldness, as though of a weapon poised to strike. The real split in Greek consciousness, like all other irreversible steps it took, comes when Plato for (...) the first time affirms, ‘How very different is the nature of the necessary from the nature of the good.’ And he means an immense, an unbridgeable distance—the same distance that made atheists of ‘those who study astronomy and other sciences of the necessary, when they see that what is, is so out of necessity and not out of any plan conceived by some will to accomplish the good.’ The Beautiful, in this scenario, must either be quickly reabsorbed into the Good—as its agent, instrument, and pedagogue—or left up in the air, like a malignant spell (goeteuma) bewitching the mind only to subject it even more helplessly to the fiat of necessity.—Roberto Calasso, The Marriage of Cadmus and Harmonyl. The Stranger’s HandOnce at the circus, when I was young we were strolling around in a throng of clowns and cotton candy, bright sun, I looked up to find that the hand I was holding was that of a stranger.Just before dawn, ejected from sleep, I am unraveled into another condition.The place between these two conditions is complex and difficult, a peculiar suspension between two exclusive frames for which there is no dialogue box. The familiar crosses into the unfamiliar and back again.What separates works of art from the fallible empirical world is not their higher degree of perfection but their ability to actualize themselves in a brilliant and expressive appearance just like fireworks. 1Fireworks! Temporality construed as ephemeral vision.And so: In every work of art something appears that does not exist. 2And so: The question of the truth of art comes into view when a non-existent is seen to rise as if it were real. In terms of its form, art promises what is not real. Objectively, it raises the claim, however obliquely this may come out, that just because something appears, it [End Page 143] must be possible to imbue it with being. The unquenchable longing excited by the beautiful is the longing for the fulfillment of a promise. 3The promise of meaning.One of my students writes, “We deem beautiful that which offers meaning to our meaningless lives.”I failed to draw a map and you followed it perfectly because the word for ‘cannot’ inscribes itself here to define an atmosphere of absolute trust which both fastens and unfastens us. 4Day unblooms into insatiable prerogatives vetoedsustained in their august sudden ramifications as if saying soEvery frame is danger and security. Poems that interest me are poems that show me how to proceed, not where to go or what to look at. They assuage the panic of the Stranger’s Hand by awakening curiosity rather than fear. The poem attests to the mobility of the frame, not to the totality of the picture.Thus the grip of realism has found a picture chosen to cover the space occupied by another picture establishing a flexibility so we are not immobile like a car that spends its night outside a window, but mobile like a spirit. 5* * * but we were not, we are not shadows; as we walk, heel and sole leave our sandal-prints in the sand, though the wounded heel treads lightly and more lightly follow, the purple sandals. 6 [End Page 144]2. The Real ThingA poet too has constantly to ask himself: “but is what I am writing really true?”—and this does not necessarily mean: “Is this how it happens in reality?” 7I do not remember when or why I became interested in looking at the ways in which notions of the truth and notions of the real had become blurred. Perhaps in the slogans of advertising. Perhaps it was the political discourse around the Vietnam... (shrink)

Entanglement and non-locality are non-classical global characteristics of quantum states important to the foundations of quantum mechanics. Recent investigations have shown that environmental noise, even when it is entirely local in influence, can destroy both of these properties in finite time despite giving rise to full quantum state decoherence only in the infinite time limit. These investigations, which have been carried out in a range of theoretical and experimental situations, are reviewed here.

Domain analysis is useful for examination of individual spheres of intellectual activity, both academic and otherwise, and has been used in the knowledge organization (KO) literature to explore specific communities and uses, including web pornography (Beaudoin and Ménard 2015), virtual online worlds (Sköld, Olle 2015), gourmet cooking (Hartel 2010), healthy eating (McTavish 2015), art studies (Ørom 2003), the Knowledge Organization journal (Guimarães et al. 2013), and domain analysis itself (Smiraglia 2015). The results of domain analyses are useful for the development (...) of controlled vocabularies, taxonomies, ontologies, metadata schemas, and other systems for the documentation, description, and discovery of resources, as well as for knowledge discovery in general (Smiraglia 2015; Hjørland 2017). This research describes a methodology for the elucidation of knowledge organization systems (KOS) currently in use on image websites that document graffiti, graffiti art, and street art around the world. (shrink)

This collection presents stimulating and diverse essays by scholars from several different fields; the contributors have made important contributions to the ...

Film Theory addresses the core concepts and arguments created or used by academics, critical film theorists, and filmmakers, including the work of Dudley Andrew, Raymond Bellour, Mary Ann Doane, Miriam Hansen, bell hooks, Siegfried Kracauer, Raul Ruiz, P. Adams Sitney, Bernard Stiegler, and Pier Paolo Pasolini. This volume takes the position that film theory is a form of writing that produces a unique cinematic grammar; and like all grammars, it forms part of the system of rules that govern a (...) language, and is thus applicable to wider range of media forms. In their creation of authorial trends, identification of the technology of cinema as a creative force, and production of films as aesthetic markers, film theories contribute an epistemological resource that connects the technologies of filmmaking and film composition. This book explores these connections through film theorisations of processes of the diagrammatisation of cinematic matters of the filmic world. (shrink)