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)

The essence of religion was once widely thought to be a unique form of experience that could not be explained in neurological, psychological, or sociological terms. In recent decades scholars have questioned the privileging of the idea of religious experience in the study of religion, an approach that effectively isolated the study of religion from the social and natural sciences. Religious Experience Reconsidered lays out a framework for research into religious phenomena that reclaims experience as a central concept while bridging (...) the divide between religious studies and the sciences. Ann Taves shifts the focus from "religious experience," conceived as a fixed and stable thing, to an examination of the processes by which people attribute meaning to their experiences. She proposes a new approach that unites the study of religion with fields as diverse as neuroscience, anthropology, sociology, and psychology to better understand how these processes are incorporated into the broader cultural formations we think of as religious or spiritual. Taves addresses a series of key questions: how can we set up studies without obscuring contestations over meaning and value? What is the relationship between experience and consciousness? How can research into consciousness help us access and interpret the experiences of others? Why do people individually or collectively explain their experiences in religious terms? How can we set up studies that allow us to compare experiences across times and cultures? Religious Experience Reconsidered demonstrates how methods from the sciences can be combined with those from the humanities to advance a naturalistic understanding of the experiences that people deem religious. (shrink)

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

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)

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)

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 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)

This is a ground-breaking study of the way educated people were trained to think in Renaissance Europe. As Ann Moss demonstrates, the commonplace-book of quotations which every schoolboy of the period was taught to use opens a window on to the manner in which attitudes were structured, a moral consensus was established, and styles of writing evolved. Printed Commonplace-Books and the Structuring of Renaissance Thought is much more than an account of humanist classroom practice: it is a major work of (...) cultural history. (shrink)

There has been little previous research regarding the effectiveness of ethics education interventions for residential care‐givers. The Researching Interventions to Promote Ethics in social care project responded to the question: Which is the most effective ethics education intervention for care‐givers in residential social care? A pragmatic cluster trial explored the impact of three ethics education interventions for: (a) interactive face‐to‐face ethics teaching; (b) reflective ethics discussion groups; and (c) an immersive simulation experience. There was also a control arm (d). 144 (...) trial participants were recruited from 39 residential care homes for older people in southern England. Change scores compared across intervention arms showed a significant reduction in work‐related moral stress in the teaching arm compared with control group (p =.03); there were no significant differences between control and intervention arms in change scores for moral sensitivity, interpersonal reactivity (empathy) or ethical leadership. Qualitative data themes were as follows: ethical care; care challenges; and ethical care inhibitors. Overall findings stimulate reflection on the value of three different ethics education interventions and the most appropriate means to evaluate their impact. Findings suggest the complexity and diverse nature of ethical competence in care. We suggest a way forward for research evaluating ethics education. (shrink)

Companies increasingly seek to use gay protagonists in audio-visual commercials to attract a new affluent target group. There is also growing demand for the diversity present in society to be reflected in media formats such as advertising. Studies have shown, however, that heterosexual consumers, who may be part of the company's loyal consumer base, tend to react negatively to gay-themed advertising campaigns. Searching for an instrument to mitigate this unwanted effect, the present study investigated whether carefully selected background music can (...) shape the perceived gender of gay male advertising protagonists. In a 2 × 2 between-subjects online experiment, 218 heterosexual participants watched a commercial promoting engagement rings that featured gay male protagonists, scored with feminine- or masculine-connoted background music. As expected, women generally reacted more positively than men to the advertising. Men exposed to the masculine-connoted background music rated the promoted brand more positively, and masculine music also enhanced these men's acceptance of gay men in general more than was the case for feminine background music. Carefully selected background music affecting the perceived gender of gay male advertising protagonists may prevent negative reactions from heterosexual audiences and, therefore, motivate companies to use gay protagonists in television commercials on a more regular basis. (shrink)

“Humanism” is a term that has designated a remarkably disparate set of ideologies. Nonetheless, strains of religious, secular, existential, and Marxist humanism have tended to circumscribe the category of the human with reference to the themes of reason, autonomy, judgment, and freedom. This essay examines the emergence of a new humanistic discourse in feminist theory, one that instead finds its provocation in the unwilled passivity and vulnerability of the human body, and in the vulnerability of the human body to suffering (...) and violence. Grounded in a descriptive ontology that privileges figures such as exposure, dispossession, vulnerability, and “precariousness,” this new humanism is a corporeal humanism. This essay probes both the promise and the limitations of this emergent humanism with particular reference to recent work by feminist philosophers Judith Butler and Adriana Cavarero. (shrink)

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.

ABSTRACTThis essay explores the phenomenology of hunger in reference to work by Jean-Paul Sartre, Maurice Merleau-Ponty and Simone de Beauvoir. Considering the wealth of references to hunger in phenomenological literature, very little has been written that acknowledges the importance of hunger in French existential phenomenology in particular. With reference to work by the above authors, this essay examines how hunger alters one’s basic experience of space and time, no less one’s sense of social belonging. Phenomenology illuminates dimensions of the human (...) experience of hunger that remain veiled in other discourses, and it is vital that efforts to understand hunger engage the profound narratives of disorientation, illness and shame that come to the fore in this body of work. (shrink)

In lieu of an abstract, here is a brief excerpt of the content:Wild LoveCynthia Willett’s Biosocial Eros EthicsAnn V. MurphyI’ll frame my comments in honor of Cynthia Willett’s work in light of two recent anecdotes:Anecdote I: It happened that one evening as I was reading Willett’s most recent monograph Interspecies Ethics—in particular the chapter on animals’ capacity for laughter and humor—my wonderful (if somewhat insubordinate) Airedale terrier, Nora Mae Murphy, heard me laughing, trotted into the living room, jumped on the (...) couch, looked at me with concern, stared down at the book in my hand, then placed her paw on my arm as if to check my pulse, eyes wide and ears slicked back. Nora is used to me reading philosophy at night; but she is not used to me laughing loudly while doing so. Clearly, she was curious. I smiled in recognition of what Nora’s behavior had enabled me to realize: I don’t often laugh when I read philosophy, not like I did that night while reading Willett’s work.Anecdote II: Cindy came out to New Mexico last spring to give the keynote address at our department’s annual graduate student conference. The afternoon she arrived, a few graduate students had arranged to take her on a hike in a nature preserve, a beautiful tract of land alongside the Rio Grande, which winds through Albuquerque. The next day, two of [End Page 50] the graduate students were in my office and I asked how the hike went. The students looked at each other, shuffled a bit, and stared at the floor until one announced, “Well, we kind of got locked in the preserve.” Me: “You got locked in the nature preserve?” “Yep, but it all worked out okay. She was cool with it,” one student reported. The other added: “Yeah, she’s pretty wild.”That conversation happened months before I was asked to speak on and to Willett’s work, but that conversation, that compliment, that word—“wild”—came to mind many times as I was preparing these comments in her honor. And I mean “wild” in the best sense: as rowdy and irreverent and joyful. There is a wildness to Willett’s texts in their performative aspect, one that marks them as singular. Bucking certain philosophical tendencies to overindulge a metaphorics of war and violence, Willett’s own work evinces an entirely different philosophical orientation, one that takes love, and more specifically eros, as its bedrock. The wildness of Willett’s ethical philosophy comes into play in the truly variable scenes in which Willett locates eros and its promise. It’s a wild kind of love that informs Willett’s ethics, one that refuses domestication, refuses to be hemmed in by the borders between species, refuses to be fixed. The scope that Willett assigns eros is broad, countering the tendency to reduce it to the sexualized and sentimental contexts in which it is often placed.1At the heart of Willett’s deliberations across her four monographs and many articles is an abiding concern with, and celebration of, eros as a site of social, political, and ethical promise. A preoccupation with eros is evident in her work from the very beginning. In her first monograph, Maternal Ethics and Other Slave Moralities (1995), Willett frames her project in reference to Audre Lorde’s claim (in Lorde’s essay “Uses of the Erotic: The Erotic as Power”) that European American culture has perpetuated an understanding of power that parses the erotic from the spiritual and political and as a consequence has “suppressed the deepest source of power and knowledge in our lives” (Lorde 1984, 55, cited in Willett 1995, 7). This first book suggests new conceptions of freedom and ethical subjectivity based on social eroticism, a project furthered in her second monograph The Soul of Justice: Social Bonds and Racial Hubris (2001), where hubris is understood with and against the Greeks as an assault on this primary sociality. “In response to the Greeks we might say that the person is born, not of honor, but of love. Sociality, or social eros, and not honor is the origin and the goal of the person and the positive core of freedom... (shrink)

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)

A FALSE DICHOTOMY BETWEEN INTEGRITY AND IMPARTIALITY HAS become entrenched in contemporary ethical and political theory. Drawing on the work of Bernard Williams and Alasdair MacIntyre, this essay sketches the dichotomy and argues for its ultimate falseness. Eco-theologians' innovative use of the term "integrity" suggests directions for transcending the false dichotomy. Increasingly, the term "integrity of creation" is used to flag religioethical dimensions of ecology. This usage changes the subject of integrity from individuals to systems, implying that personal integrity is (...) a derivative concept that is related to how one responds to the complexity of systems. A structurally parallel change in the subject of integrity would benefit political theory. It would promote an "ecological politics" that integrates alternative definitions of integrity as wholeness, consistency, and balance. It also would suggest new conceptions of civic virtue that avoid dichotomizing between personal integrity and public impartiality. (shrink)

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)

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.

In our time of increasing reliance on digital media the history of the book has a special role to play in studying the codex form and the persistence of old media alongside the growth of new ones. As a contribution to recent work on the continued use of manuscript in the handpress era, I focus on some examples of manuscripts copied from printed books in the Rylands Library and discuss the motivations for making them. Some of these manuscripts were luxury (...) items signalling wealth and prestige, others were made for practical reasons – to own a copy of a book that was hard to buy, or a copy that could be customized in the process of copying. The act of copying itself was also considered to have devotional and/or pedagogical value. (shrink)

Recent discussions of boundary theory, particularly in the field of ethnic relations, emphasize varying degrees of porousness of social boundaries and the importance of considering the effects of the intersections of multiple boundaries, most notably those of gender, ethnicity/race, and class. It is also increasingly acknowledged that within-group characteristics, including identities, of subordinate as well as of dominant groups may change, without their becoming less authentic distinctive collectivities. This article examines the changing identities of a specific collectivity—French-speaking Canadian women living (...) in Ontario—who, during the past century, have been either marginalized by, or excluded from, several larger collectivities for various reasons—religion, race/ethnicity, language, nationalism, region, and gender—related to boundary definitions of their multiple, intersecting identities. It explores the emergence of these various marginalities and the ability of these feminists to construct institutions and agendas on their own terms. (shrink)