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)

Does the establishment of a permanent InternationalWar Crimes Tribunal (International Criminal Court - ICC) constitute a challenge to national sovereignty? According to previous US governments and several American observers, the answer is yes. Establishing a world court that acts independently of the states that gave birth to it renders the idea of sovereignty meaningless. This article analyzes the American objections to the ICC and the conception of sovereignty and international law underlying these objections. It first considers the structure and intent (...) behind the criminal court and attempts to unveil the logic hiding behind the idea of ‘America’s historical uniqueness.’ It touches on the diverging US and European conceptions of sovereignty and ends up arguing that governments that stick to traditional conceptions of sovereignty and international law in the employment of their foreign policy may lose the moral legitimacy that has proven increasingly important for winning the sympathy of allies and regaining world leadership. Keywords: The ICC; US opposition to the court; sovereignty; international law; exceptionalism (Published: 19 May 2009) Citation: Ethics & Global Politics, Vol. 2, No. 2, 2009, pp. 83-108. DOI: 10.3402/egp.v2i2.1973. (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)

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)

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)

In recent years, calls for philosophy to interact more with the public have grown louder in the German-speaking world as well as elsewhere. Public philosophy, as it were, has a long-standing tradition, reaching back to Enlightenment-era German “Popularphilosophie” and of course to Socrates and the Sophists. This section presents four short articles on some current aspects of the public-philosophy debate: on the overall conditions for transferring content from academic philosophy to the public in Germany; on the relations between philosophers’ mediatic (...) presence and their disciplinary expertise; on 18th-century guidelines for accessible philosophical writing; and on public philosophy as a social practice that is more than mere unidirectional knowledge transfer. (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 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)

La presente investigación surge como parte del análisis para la creación de políticas de ecoeficiencia en las empresas y tiene como finalidad el conocer las buenas prácticas ambientales aplicadas por las empresas del sector servicios en la ciudad de Girardot. Se presenta como un estudio descriptivo-analítico con enfoque cualitativo, utilizando como instrumento la ficha de observación aplicada a una muestra de 30 empresas del sector de servicios. Dentro de los resultados obtenidos se encuentra la calificación de acuerdo con un puntaje (...) entre 0.0 y 1.0 y el análisis del resultado total con ponderación de 0% a 100% a 11 criterios evaluados. (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)

This study conducted life story interviews with 40 members of the PRSA College of Fellows to examine the influence of crucibles (i.e. trials, challenges or growth opportunities) in the moral development and psychology of public relations exemplars. The outcomes were the development of an illustration of their moral and leader development journey drawing on Rest’s four-component model of ethical decision making, and a moral psychology profile of the key characteristics of public relations exemplars. The profile that emerged is that of (...) leaders who exemplify moral courage, resilience, generosity, genuine care about others and are willing to listen and learn. When they faced trials, they emerged stronger and stayed true to their values and character. (shrink)

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)

Dit boek bevat de uitgebreide, geannoteerde en geïllustreerde versie van de 48ste Huizinga-lezing die Marlene Dumas vrijdagavond 6 december 2019 heeft uitgesproken in de Pieterskerk in Leiden. Dumas spreekt onder meer over het onderscheid tussen de kunstenaar en diens werk, het nadeel van een titel en de naaktheid van mannen in de kunst. 0Het boek bevat tevens een interview met Marlene Dumas, een schets van het leven en werk van Johan Huizinga, de naamgever van de lezing, en een (...) korte geschiedenis van de Huizinga-lezing, die al sinds 1972 bestaat. (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)

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)

Referenciado na Análise Institucional do Discurso, o estudo investigou os sentidos atribuídos ao "ser alguém na vida" no discurso de estudantes do ensino médio de uma escola pública do litoral paranaense. Realizaram-se entrevistas, cuja análise buscou delinear os modos de produção de subjetividade, ..

El propósito de este ensayo es mostrar que el fenómeno globalizador impulsado desde Occidente, ha venido configurando un escenario, que amenaza reducir lo identitario a una lógica de guerra entre lo propio y lo ajeno. Además, se muestra a Occidente desde otras voces, cuyos argumentos de resistencia a toda visión reduccionista de la experiencia humana cuestionan la universalización monologizante de Occidente, y nos instan a revalorizar nuestros legados culturales e identitarios más próximos, y a redescubrir lo comunitario como un espacio (...) de encuentro y potenciación de aquellas necesidades y expresiones más constitutivas de lo humano. (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...

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