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)

Scholars have long asserted that public relations (PR) professionals should play the role of organizational conscience, but little research has focused on why and how they play this role effectively. We found that PR professionals who played the role of organizational conscience had broadened conceptions of their roles and responsibilities, including a fervent duty to the public interest. This often put them in the position of providing criticism to powerful organizational players. Rather than raising their ethical concerns as persuasive orators, (...) they used subtle, resourceful, and experiential approaches to persuasion. Playing the role of organizational conscience typically necessitated gaining access to informal coalitions since access to dominant power coalitions often was limited or late. Organizations with participative cultures supported the role of organizational conscience. (shrink)

How veridical is perception? Rather than representing objects as they actually exist in the world, might perception instead represent objects only in terms of the utility they offer to an observer? Previous work employed evolutionary modeling to show that under certain assumptions, natural selection favors such “strict‐interface” perceptual systems. This view has fueled considerable debate, but we think that discussions so far have failed to consider the implications of two critical aspects of perception. First, while existing models have explored single (...) utility functions, perception will often serve multiple largely independent goals. (Sometimes when looking at a stick you want to know how appropriate it would be as kindling for a campfire, and other times you want to know how appropriate it would be as a weapon for self‐defense.) Second, perception often operates in an inflexible, automatic manner—proving “impenetrable” to shifting higher‐level goals. (When your goal shifts from “burning” to “fighting,” your visual experience does not dramatically transform.) These two points have important implications for the veridicality of perception. In particular, as the need for flexible goals increases, inflexible perceptual systems must become more veridical. We support this position by providing evidence from evolutionary simulations that as the number of independent utility functions increases, the distinction between “interface” and “veridical” perceptual systems dissolves. Although natural selection evaluates perceptual systems only on their fitness, the most fit perceptual systems may nevertheless represent the world as it is. (shrink)

After years of near total neglect, the problem of childhood obesity is now in the limelight. Terms like “epidemic,” “crisis,” and “emergency” are used frequently when describing the trend. Progress is defined with strong language and fueled by statistics such as the observation that this generation of children will be the first to live shorter lives than their parents. Multi-disciplinary journals such as the Journal of Law, Medicine & Ethics have dedicated symposiums to the issue, and conferences have been convened (...) not only by health professionals but by government agencies, the food industry, and even professionals who market to children. The seriousness of childhood obesity is no longer in doubt, and finally attention has turned to the more complex question – what must be done? (shrink)

The 2017 Commission on Public Relations Education report found new professionals are not meeting employers’ expectations regarding ethics knowledge, skills and abilities. This mixed-method s...

Traditionally, ontology, or at least western ontology, bas been an anthropocentric enterprise, that takes only human experiences into account. In this paper I argue that a prolific biocentric ontology can be based on UexkülI's Umwelt theory. UexkülI offers the basis of an ontology according to which the study of experiences is a much wider field than it is as depicted by classical ontology and contemporary philosophy of consciousness. Based on the thoughts of the contemporary philosopher Thomas Nagel I claim that (...) there might very well be Iifeforms that are totally unimaginable to us. I argue that this view is compatible with the Umwelt theory, and that it should be adopted by biosemioticians. Furthermore, I argue that a biosemiotic possibilism should be implemented. Followingly, one should not claim to know which characteristics of living beings are universally and necessarily valid, but restrict oneself to statements about life as we know it. (shrink)

Childhood obesity has become a public health epidemic, and currently a battle exists over how to frame and address this problem. This paper explores how public policy approaches can be employed to address obesity. We present the argument that obesity should be viewed as the consequence of a “toxic environment” rather than the result of the population failing to take enough “personal responsibility.” In order to make progress in decreasing the prevalence of obesity, we must shift our view of obesity (...) away from the medical model to a public health model . At the same time, we must be sensitive to the problem of weight bias.Potential obstacles to taking a public policy approach are identified, as well as suggestions on how to overcome them. (shrink)

Beginnings : a Russian émigré's first interviews (1932-1949) -- Russian girl jeers at U.S. for depression complaint, Oakland Tribune, 1932 -- True picture of Russian girls' love life tragic, Boston Post, 1936 -- The woman of tomorrow, WJZ radio, 1949 -- On campus : Ayn Rand talks with future intellectuals (1962-1966) -- Objectivism versus conservatism -- The campaign against extremism -- The robber-barons -- Myths of capitalism -- The political structure of a free society -- The American Constitution -- Objective (...) law -- The role of a Free Press -- Education -- Romantic literature -- Romanticism versus naturalism -- The visual arts -- Cyrano de Bergerac -- Favorites in art -- The nature of humor -- The foundations of morality -- Altruism -- Individual rights -- The ethics of objectivism -- On television and radio : Ayn Rand in America's living rooms (1959-1981) -- The Mike Wallace interview, ABC-TV, 1959 -- For the intellectual, University of Michigan television, with Professor James McConnell, 1961 -- The Tonight Show with Johnny Carson, NBC-TV, August 1967 -- The Tonight Show with Johnny Carson, NBC-TV, October 1967 -- Speaking freely with Edwin Newman, NBC-TV, 1972 -- Day and Night, a television program hosted by James Day, 1974 -- Focus on youth, a radio show hosted by Garth R. Ancier, 1976 -- The Raymond Newman Journal, a radio show, 1980 -- Louis Rukeyser's Business Journal, 1981. (shrink)

ABSTRACTThe idea that metaphorical meaning is guided by speakers’ experiences of the world is central to Conceptual Metaphor Theory. Yet little is known about the ways in which speakers’ understandings of objects in the world around them influence how they use words in metaphorical and non-metaphorical ways. This article is a corpus linguistic analysis of the collocational patterns of metaphorical and non-metaphorical bridge instances from the Corpus of American English Corpus of Contemporary American English. The study shows that metaphorical and (...) non-metaphorical uses of words are systematically linked to different types of real world experiences. It is argued that lexical metaphors are, in fact, lexico-encyclopedic conceptual metaphors, and that they are constrained by cognitive salience. (shrink)

The extent to which visual information on the contralateral, unattended side influences the performance of patients with hemispatial neglect was studied in a visuomotor reaching task. We replicated the well-established finding that, relative to target-alone trials, normal subjects are slower to reach to targets in the presence of visual distractors which appear either ipsilateral or contralateral to the target, with greater interference in the former condition. Six patients with hemispatial neglect showed even greater interference than did the normal subjects when (...) the distractor appeared ipsilaterally but showed no significant interference from contralateral distractors. This pattern of performance was qualitatively similar for patients with lesions restricted to posterior regions and for patients with more extensive lesions involving both posterior and anterior brain regions. These findings suggest that, in the visuomotor domain, information on the contralateral side is processed minimally, if at all, in patients with hemispatial neglect. (shrink)

ABSTRACTDeliberative democratic theorists often trace their idea that vigorous democracies rely on open deliberation to ancient Athenian democracy. Furthermore, deliberative theorists claim that eq...

Se analizan saberes docentes de una maestra al enseñar el tema, las aportaciones de Darwin: adaptación y selección natural, en grado primero de secundaria en una escuela rural en el estado de Tlaxcala- México. Es un estudio etnográfico, en él se describen y examinan fragmentos de clase y se encuentra que sus saberes se asocian con tres aspectos de la dimensión colectiva de la enseñanza, referidos a: cómo involucrar a los niños en el trabajo grupal, cómo recapitular contenidos en beneficio (...) de la clase y cómo organizar el trabajo para el grupo. Estudios de esta naturaleza son importantes porque permiten comprender la acción docente más allá de prescripciones documentadas y aportan a la discusión de las investigaciones educativas en México. (shrink)

Does shame have a limited moral role because it is associated with a loss of self-respect or is it an important emotional support for socially beneficial behaviours? Aristotle supports the latter position. In his ethical theory, he famously claims that shame is a semi-virtue essential in the habituation of moral norms. He clarifies this role in the Rhetoric’s lesser-known distinction between true and conventional shame, which implies human beings make subjective evaluations of those appropriated cultural norms. Importantly, he locates this (...) potential for ethical assessment in friendship and not in public discourse, as he thinks it would be shameless to publicly evaluate moral rules. The article ends by exploring potential critiques to his position and argues that Aristotle’s approach makes shame indispensable for moral progress, even though we might want to consider some limited role for shameless public protest. (shrink)

Ce texte avance une hypothèse sur ce qui fait la spécificité de l’herméneutique, et sur la façon dont elle peut être située dans le paysage de pensée contemporain. Les deux auteurs convoqués sont Gadamer et Derrida. Partant d’une certaine position de Derrida relativement à la question de l’interprétation, on s’efforce d’en évaluer la pertinence à la lumière de Gadamer. Les perspectives de pensée ouvertes par Gadamer se laissent-elles ranger dans le cadre dessiné par Derrida, ou peuvent-elles servir d’instruments pour ébranler (...) ce cadre ?This text puts forward a hypothesis regarding what constitutes the specificity of hermeneutics, and on how it can be situated in the landscape of contemporary thought. The two authors dealt with are Gadamer and Derrida. We will start from a position held by Derrida concerning the question of interpretation, and examine this position in the light of Gadamer’s writings. Do the perspectives offered by Gadamer simply fall into the framework drawn out by Derrida, or can they serve as means to destabilize this very framework ? (shrink)

Este artigo, realizado por meio de estudo bibliográfico, pretende abordar a respeito dos desafios do uso de tecnologias na sala de aula para a educação no século XXI. A cultura analógica na escola com práticas tradicionais seculares é conflitante com a cultura digital provocando dissonâncias entre o mundo dos estudantes e o mundo da escola. A pandemia provocou catalisação no uso das tecnologias devido ao ensino remoto. Os avanços e a propagação do uso das tecnologias digitais de informação e comunicação (...) na educação têm ampliado as possibilidades de melhorar a aprendizagem de forma atraente, significativa e personalizada. A escola tem a responsabilidade de formar cidadãos críticos e criativos para solucionar os problemas antigos e novos da sociedade. Porém, os desafios são grandes e provocados por desigualdades de acesso e pela necessidade de revisão na formação inicial e continuada de educadores. (shrink)

Name der Zeitschrift: Frühmittelalterliche Studien Jahrgang: 36 Heft: 2 Seiten: 432-435.

This case recounts the story of Rajat Gupta, a Goldman Sachs board member and seniorpartner emeritus of McKinsey & Co., who was accused by the government of giving critical nonpublicfinancial information to Raj Rajaratnam, Galleon Group founder, during the financial crisisof 2008. The information passed along to Rajaratnam was about a pending $5 billion investment byWarren Buffett’s Berkshire Hathaway in Goldman Sachs at a time when its stock had been faltering.The government alleged that based on this information, Rajaratnam purchased a (...) large number ofshares in the company and then sold them when the deal became public and Goldman’s stock rose.Rajaratnam purportedly made $18 million on these trades. (shrink)

General Electric has a rich history of being in the center of public discourse regarding the intersection of corporate strategy and environmental concerns. During Jeffrey Immelt’s tenure as Chief Executive Officer, G.E. has taken a proactive approach to coupling corporate social responsibility with organizational profitability in its Ecomagination initiatives. Critics abound with some investor groups questioning the utility of Immelt’s approach for shareholder returns while other stakeholder groups question G.E.’s motives and methods. This case study reviews G.E.’s past CSR efforts (...) and the more recent Ecomagination program and its efficacy and sustainability. The case was developed from public sources. (shrink)

General Electric (G.E.) has a rich history of being in the center of public discourse regarding the intersection of corporate strategy and environmental concerns. During Jeffrey Immelt’s tenure as Chief Executive Officer, G.E. has taken a proactive approach to coupling corporate social responsibility with organizational profitability in its Ecomagination initiatives. Critics abound with some investor groups questioning the utility of Immelt’s approach for shareholder returns while other stakeholder groups question G.E.’s motives and methods. This case study reviews G.E.’s past CSR (...) efforts and the more recent Ecomagination program and its efficacy and sustainability. The case was developed from public sources. (shrink)

This contribution traces the parallel development of two distinct approaches to peasant agroecological education: the peasant-to-peasant horizontal method that disseminated across Mesoamerica and the Caribbean beginning in the 1970s, and the political-agroecological training schools of combined consciousness-building and skill-formation that have been at the heart of the educational processes of member organizations of La Via Campesina since the 1990s. Applying a theoretical framework that incorporates territorial struggle, agroecology and popular education, we examine spatial and organizational aspects of each of these (...) models for peasant education and movement-building. Recognizing that the models, their respective contexts, and the dialectical relationships therein have been in constant evolution, we share findings on the movement-place as a territorial system with socio-historical subjectivity, that is, peasant movements as territorially-embedded, collective historical actors. This leads to some conclusions in moving past educational theory that has centered upon individual subjects, and approaching a conception of territory as a subject of learning processes. (shrink)

This paper explores the relationship between people's mental imagery for their experiences of paths and roads and the metaphorical use of path and road in discourse. We report the results of two studies, one a survey examining people's mental imagery about their embodied experiences with paths and roads, with the second providing a corpus analysis of the ways path and road are metaphorically used in discourse. Our hypothesis is that both people's mental imagery for path and road, and speakers' use (...) of these words in metaphorical contexts are strongly guided by their embodied understandings of real-world events related to travel on paths and roads. The results of these studies demonstrate how bodily experiences with artifacts partly constrains not only how specific conceptual metaphors emerge, but how different metaphorical understandings are applied in talk about abstract entities and events. (shrink)

How the new spirit of capitalism confronts the new modes of workplace radicalism The period 2008-2009 has seen a spate of workplace conflicts obeying a common logic in terms of the modes of mobilisation. The conflicts emerge inside the sphere of production. They occur in the wake of the announcement of a partial or total suspension of production and their stated goal is to save jobs and/or to negotiate redundancy payments going beyond the legal entitlement. The aim of the article (...) is to confront the paradigm which Luc Boltanski and Eve Chiapello formulated in The New Spirit of Capitalism in order to articulate the concepts of the civic and the critical to the features of the new discursive protocols which have emerged in the context of these recent conflicts. The article addresses two questions. The hypothesis put forward is that the discursive protocol which those promoting militant action draw upon goes beyond a model of intelligibility that is fundamentally built around the reference to a corrective critique and thus fails to take account of the place in which the discourse of radical critique is actually rooted. (shrink)

‘Culturology’ is an integral, often compulsory, part of Russian university courses; the discipline has largely replaced chairs in Marxist-Leninism and dialectical materialism, and bookshops are full of texts on the subject. This article is based on analysis of more than ten university textbooks recommended to first-year students. Marlène Laruelle examines why culturology has become so important, the place claimed for it within the human sciences, and what it means for changing Russian ideas of identity and nation.

This article tackles the tricky problem of identifying metaphors in language that includes prepositions. We demonstrate how the Procedure for Identifying Metaphorical Scenes (PIMS) reflected and evoked by linguistic expressions in discourse, Johansson Falck & Okonski, accepted) can be used to identify metaphorical relations reflected in language. The scenes evoked correspond to conceptualizations that are directly attested by the specific linguistic constructions in the sentences under analysis. We present two studies that test the reliability of the procedure and the sensitivity (...) of the tool for prepositions. Results show that PIMS provides a simple procedure that increases both reliability and sensitivity for prepositional constructions. By focusing on the scenes evoked by linguistic constructions, the procedure highlights the contextual meanings of the constructions and the specific experiences that they code. (shrink)