Mucopolysaccharidosis type I (MPS I) is a rare lysosomal storage disorder treated with bone marrow transplantation or enzyme replacement therapy with laronidase, a high-cost orphan drug. Laronidase was approved by the US Food and Drug Administration and the European Medicines Agency in 2003 and by the Brazilian National Health Surveillance Agency in 2005. Many Brazilian MPS I patients have been receiving laronidase despite the absence of a governmental policy regulating access to the drug. Epidemiological and treatment data concerning MPS I (...) are scarce. This study aims to present a demographic profile of Brazilian patients with MPS I, describe the routes of access to laronidase in Brazil, and discuss associated ethical issues relating to public funding of orphan drugs. (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)

Confrontados con la experiencia del mal, se trata de saber para nosotros cómo aún es posible para el hombre afirmarse como ser responsable de sus actos. El objetivo de nuestra reflexión consiste en retomar y superar las objeciones del determinismo de Spinoza y de la teodicea de Leibniz, para reafirmar la libertad humana frente al mal. Es en este punto que se revela pertinente la respuesta kantiana en la medida en que la acción, aunque pueda ser afectada, resulta de una (...) decisión libre. Es cierto que no existe un ser diabólico, pero el hombre es malo porque él mismo elige su propia naturaleza. (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)

‘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.

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)

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)

Dependeria a felicidade do gênero humano do progresso das ciências e das artes? Ou, ao contrário, de um retorno aos primeiros tempos nos quais o homem da natureza, bom e solitário, vivia na tranquilidade das paixões e na ignorância dos vícios? São estas questões que este texto pretende responder.

The relationship between languages and philosophy is so strong that French philosopher Barbara Cassin speaks of 'philosophising in languages'. This paper aims to show how translation can be a means to help disseminate philosophical ideas. It might even be called a political tool, when circulating feminist philosophical thoughts is concerned. The article uses the latest English translation of Simone de Beauvoir's Le deuxième sexe to address the pitfalls philosophy presents translators with. It also aims to defend the Interpretive Theory of (...) Translation as a translation strategy particularly relevant to philosophy. The novelty of the paper lies in the fact that the translation of feminist philosophy is largely underanalysed in the field of Translation Studies. Therefore, the article intend to bridge the gap between those disciplines, in order to enhance the reception of feminist philosophy. (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)

Harry Frankfurt's conception of care and love has largely been considered a seductive theory of personality, but an untenable and irresponsible theory of moral normativity. Contrary to that interpretation, this article aims at showing that it is possible to remain faithful to Frankfurt's metaphysical premises while not falling into some moral relativism. First, by comparing Frankfurt's and Heidegger's conceptions of care, I show that Frankfurt's subordination of ethics to carology apparently commits him to a neutral foundationalism. In the next step, (...) I argue that his calling into question of the relation between rationality and morality does indeed subject moral normativity to some subjective and contingent limits. And finally, I show that the objections raised against such a conclusion can be answered by shifting Frankfurt's frontier between contingency and necessity and by exploiting his concept of wholeheartedness. (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)

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)