This paper makes a plea for more reflexive attempts to develop and anchor the emerging concept of responsible research and innovation. RRI has recently emerged as a buzzword in science policy, becoming a focus of concerted experimentation in many academic circles. Its performative capacity means that it is able to mobilise resources and spaces despite no common understanding of what it is or should be ‘made of’. In order to support reflection and practice amongst those who are interested in and (...) using the concept, this paper unpacks understandings of RRI across a multi-disciplinary body of peer-reviewed literature. Our analysis focuses on three key dimensions of RRI that remain particularly opaque. A total of 48 publications were selected through a systematic literature search and their content was qualitatively analysed. Across the literature, RRI is portrayed as a concept that embeds numerous features of existing approaches to govern and assess emerging technologies. Our analysis suggests that its greatest potential may be in its ability to unify and provide political momentum to a wide range of long-articulated ethical and policy issues. At the same time, RRI’s dynamism and resulting complexity may represent its greatest challenge. Further clarification on what RRI has to offer in practice—beyond what has been offered to date—is still needed, as well as more explicit engagement with research and institutional cultures of responsibility. Such work may help to realise the high political expectations that are attached to nascent RRI. (shrink)

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)

El presente volumen forma parte de una serie de publicaciones internacionales con un enfoque específico en el campo de los estudios hispánicos. Conforman la misma tanto estudios monográficos como volúmenes colectivos en idioma alemán, español, portugués e inglés. Los editores de este número, Angela Schrott y Jan-Henrik Witthaus, son catedráticos de la Universidad de Kassel, Alemania, en Lingüística Románica y Literatura Española e Hispanoamericana, respectivamente.

Esse texto é a apresentação inicial de uma leitura de conjunto da obra de Merleau-Ponty. Ele é essencialmente crítico pois nele apenas discutimos as interpretações de Carlos Alberto Ribeiro de Moura e Renaud Barbaras - interpretações que, apesar de suas diferenças, convergem no diagnóstico de que se trata de uma "filosofia da consciência". Procuramos mostrar o que nos parece insuficiente e parcial nessas interpretações. Merleau-Ponty. “Filosofia da consciência”. Cogito. Sujeito. Carlos Alberto Ribeiro de Moura. Renaud Barbaras.This paper constitutes (...) the initial presentation of a comprehensive interpretation of Merleau-Ponty's work. It is essentially critical, as we only discuss here the views of Carlos Alberto Ribeiro de Moura and Renaud Barbaras, which, their differences notwithstanding, agree in the diagnosis that Merleau-Ponty brought about a "philosophy of conscience". We intend to point out aspects of their interpretations which strike us as insufficient and partial.Merleau-Ponty. “Philosophy of conscience”. Cogito. Subject. Carlos Alberto Ribeiro de Moura. Renaud Barbaras. (shrink)

A fenomenologia de Renaud Barbaras é uma das poucas que continua hoje tentando aprofundar, de maneira original, o caminho aberto pela fenomenologia husserliana. Mas qual é, precisamente, o caminho escolhido por Barbaras para se inscrever na tradição fenomenológica? De que modo se insere no diálogo aberto por esta tradição? Neste texto, tentaremos repor os problemas e conceitos principais que nos permitem compreender a continuidade e a ruptura que apresenta a fenomenologia barbarasiana em relação a esta tradição, assim como alguns dos (...) limites de sua própria proposta. (shrink)

This paper explores the interconnectedness of persons with disabilities, technologies and the environment by problematizing Western notions of the independent, autonomous subject. Drawing from Deleuze and Guattari’s reconfiguration of the static subject as active becoming, prevailing discourses valorizing independence are critiqued as contributing to the marginalization of bodies marked as disabled. Three examples of disability “dependencies”—man-dog, man-machine, and woman-woman connectivities—are used to illustrate that subjectivity is partial and transitory. Disability connectivity thus serves a signpost for an expanded understanding of subjectivity (...) and suggests a radically altered ethics that is no longer premised on individual rights. (shrink)

We surveyed 223 APA members to investigate the roles of therapists' sex, theoretical orientation, interpersonal boundaries, and clients' sex in predicting therapists' assessments of the ethicality of nonerotic dual relationships with their clients. Results indicated that therapists' sex, interpersonal boundaries, and theoretical orientation influenced ethical judgments of these relationships. Theoretical and practical implications of our findings are discussed.

Not at all self-evident, the so-called isomorphisms between the phenomenology and physiology of dreams have been interpreted by Hobson et al. in an arbitrary manner to state that dreams are stimulated by chaotic brainstem stimulation (an assumption also adopted by Vertes & Eastman). I argue that this stimulation is not chaotic at all; nor does it occur in the absence of control from the cerebral cortex, which contributes complexity to brainstem activity as well as meaningful information worth consolidating in the (...) brain during sleep. [Hobson et al.; Vertes & Eastman]. (shrink)

"The term 'model' has become fashionable". What Mary Hesse characterized in the mid-1960s as a trend in logic, mathematics, and the natural sciences, applies today in general for a broad spectrum of disciplines. Today models appear to be of "extraordinary importance" compared to the first half of the twentieth century, when models were neither mentioned nor contemplated, either generally in scientific publications or specifically in the philosophy of science. It is even assumed that models are "the key to science" and (...) that today's science is largely... (shrink)

Over the past three decades, two separate federal regulatory structures have emerged, each seeking to assure separate aspects of the integrity and ethics of research conducted using federal funding. One set of regulations is described in the Public Health Service Policies on Research Misconduct and relates to research misconduct, defined as consisting of fabrication of data or results, falsification of data and results, or plagiarism, in accordance with the federal‐wide definition adopted by the Office of Science and Technology Policy. The (...) second set of regulations, set forth in the Department of Health and Human Services regulations on the protection of human subjects (known as the “Common Rule”), prescribes a set of ethical and procedural protections for research involving human subjects.These two sets of research regulations are distinguished from each other by having different foci of enforcement, priorities of protection, oversight officials, oversight procedures, seizure of evidence, standards of proof, expectations of privacy, and appeal procedures for researchers who are subject to adverse findings and penalties. These differences are significant and fundamental. They complicate the process of compliance for institutions and researchers, who are expected to adhere to both sets of standards for the same federally funded research activities in research with human subjects. Compliance is especially complicated when suspected violations of both sets of standards must be investigated and resolved concurrently. This document represents an effort to provide institutions and individuals with practical suggestions as they try to comply with both sets of regulations. (shrink)

There is a tension in the Gospel of Matthew between two very different images of God. In the Sermon on the Mount, God is portrayed as being boundlessly gracious and forgiving, while in eight Matthean parables, God is seen as vindictive and punitive. This poses an ethical dilemma: which God is with us and whom should we emulate?

This issue is a continuation of the theme of Catholic Peacemakers in the Americas with a focus on Latin American peacemakers such as ArchbishopOscar Romero and Ignacio Ellacuria, S.J. The relationship between the Catholic Church and Latin American politics is one in which the "cross and crown" symbolize a relationship that dates back to the sixteenth century and the Spanish conquest of indigenous peoples throughout the Americas.