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)

Listening to someone from some distance in a crowded room you may experience the following phenomenon: when looking at them speak, you may both hear and see where the source of the sounds is; but when your eyes are turned elsewhere, you may no longer be able to detect exactly where the voice must be coming from. With your eyes again fixed on the speaker, and the movement of her lips a clear sense of the source of the sound will (...) return. This ‘ventriloquist’ effect reflects the ways in which visual cognition can dominate auditory perception. And this phenomenological observation is one what you can verify or disconfirm in your own case just by the slightest reflection on what it is like for you to listen to someone with or without visual contact with them. (shrink)

I have not seen the papyrus, but if β and μ are correctly reported, and if the space between would admit three letters, I tentatively suggest . sed haec quidem uituperatio.

Az értelmiségi mint történelmi probléma -- Dic cur hic -- Van-e a filozófiának múltja? (hiszen örök) -- A német kontraszt -- Beszéd a félelem nélküli beszédről -- Öt tanács a hazának -- Utolsó feljegyzések -- Felhívás a Bürök című folyóirat megalapítására -- Jegyzetek -- Életrajzi kísérlet.

In the tradition of Western ethical thought, “charity” refers to two ideas. Although now distinguishable, they are historically connected. The first is an attitude: the attitude of selfless love which is treated in the Christian tradition as the most fundamental of the virtues. The second is a kind of action: the action of rendering material assistance to those who need it. Derivative from this second idea is the current use of “a charity” to refer to an organization through which such (...) assistance is coordinated. (shrink)

The empirical investigations over the past fifteen years of evolutionary biologists and cognitive scientists have demonstrated the accessibility and power of the human brain. Whatever moral concepts used to acknowledge the normative appraisals of human conduct are now explained through neurological hardwiring. This essay outlines some of the main views of proponents, but especially Marc Hauser, and I argue that it does not render the end of morals. It does provide an opportunity to view the facts of how the brain (...) functions but this essay finds a large domain of valuing unable to be justified by these new scientific challenges. (shrink)

Le volume s'enquiert des liens entre l'affectivite et l'activite philosophique. Sur le mode historique et/ou problematique il s'agit de traiter de questions telles que: Y a-t-il une ou des tonalites affectives specifiques a la philosophie: etonnement, angoisse, ennui, serenite, melancolie,...? L'activite philosophique est-elle associee a un deni de l'affectivite et sous quelles formes: nihilisme, detachement, refoulement...? Quel rapport le philosophe noue-t-il a l'ambivalence de l'affect (indecidabilite, double bind,...)? Qu'en est-il de la reception thematique de l'affectivite en philosophie: une philosophie ou (...) une phenomenologie de l'affectivite est-elle possible? Quel statut philosophique pour des sciences nouvelles - les neurosciences -qui pretendent etudier objectivement et techniquement l'affectivit. (shrink)

In the past, hypothesis testing in medicine has employed the paradigm of the repeatable experiment. In statistical hypothesis testing, an unbiased sample is drawn from a larger source population, and a calculated statistic is compared to a preassigned critical region, on the assumption that the comparison could be repeated an indefinite number of times. However, repeated experiments often cannot be performed on human beings, due to ethical or economic constraints. We describe a new paradigm for hypothesis testing which uses only (...) rearrangements of data present within the observed data set. The token swap test, based on this new paradigm, is applied to three data sets from cardiovascular pathology, and computational experiments suggest that the token swap test satisfies the Neyman Pearson condition. (shrink)