The right to remain silent : the ethics of invasion and evasion in Paul Sayer’s ''The Comforts of Madness''

Este artigo considera as implicações do silêncio e da ética da experimentação médica no romance de Paul Sayer, The Comforts of Madness, vencedor do prémio Whitbread. O romance de Sayer debruça-se sobre um paciente emestado catatónico, Peter, o qual procura retirar-se para um estado de pura subjetividade como consequência de uma série de eventos traumáticos. Inicialmente tratado num hospital tradicional, é posteriormente transferido para uma clínica experimental onde é submetido a uma série de «tratamento» invasivos e bárbaros com o objectivo de «curá-lo». A abordagem de Sayer dos temas relacionados com a insanidade, o silêncio pessoal e a medicina progressiva levanta questões relativas ao direito do indivíduo de rejeitar o mundo comunitário e à ética de extrair a narrativa retida da narrativa relutante. Ao examinar os processos de normalização e resistência, o romance levanta questões relativamente à ética da inclusão forçada e estabelece uma legitimidade de não-cooperação, o direito ao silêncio, o qual funciona em paralelo com a legitimidade da voz marginalizada. A tendência recente nos estudos literários tem sido no sentido da exposição e promoção das vozes anteriormente ostracizadas pela indústria editorial e pelo público leitor, mas, de um modo geral, este processo tem partido da premissa de que a voz perdida beneficia de tal exposição. Para Sayer, existe o caso igualmente persuasivo relacionado com o reconhecimento do direito à privacidade, em risco de ser preterido numa era de transparência excessiva. Este ensaio discute o modo como o romance de Sayer aborda estas preocupações e salienta a sua consciência do processo complexo de lidar com o indivíduo para quem a recusa a falar corresponde a um gesto social ambíguo.

The Maré Museum: an integrated project of community development

The Maré Museum, founded on 8 May 2006, arose from the desire of the inhabitants of the community to have a place of memory, a place that is immersed in the past and looks to the future, a place that reflects on this community, on their conditions and identities and on their territorial and cultural diversity. The intention of the Maré Museum is to break with the tradition that the experiences to be recollected and the places of memory to be remembered are those elected by the official version, the "winner" version of the story that restricts the representations of history and memory of large portions of the population. The Maré Museum, as a pioneer initiative in the city scene, proposed to expand the museological concept, so that it is not restricted to intellectual social groups and cultural spaces that are not accessible to the general population. The museum has established recognition that the slum is a place of memory and so has initiated a museographic reading of the Mare community. ..

Effective parenting in terms of language development

This paper discusses means of providing extra support for parents of newly diagnosed hearing impaired children to help with language development.

The relationship of language development to theory of mind understanding in young deaf children

This paper studies cognitive development in young deaf children, specifically Theory of Mind development and its link to language abilities.

The Ethics of Ethics Reviews in Global Health Research: Case Studies Applying a New Paradigm

With increasing calls for global health research there is growing concern regarding the ethical challenges encountered by researchers from high-income countries (HICs) working in low or middle-income countries (LMICs). There is a dearth of literature on how to address these challenges in practice. In this article, we conduct a critical analysis of three case studies of research conducted in LMICs.We apply emerging ethical guidelines and principles specific to global health research and offer practical strategies that researchers ought to consider. We present case studies in which Canadian health professional students conducted a health promotion project in a community in Honduras; a research capacity-building program in South Africa, in which Canadian students also worked alongside LMIC partners; and a community-university partnered research capacity-building program in which Ecuadorean graduate students, some working alongside Canadian students, conducted community-based health research projects in Ecuadorean communities.We examine each case, identifying ethical issues that emerged and how new ethical paradigms being promoted could be concretely applied.We conclude that research ethics boards should focus not only on protecting individual integrity and human dignity in health studies but also on beneficence and non-maleficence at the community level, explicitly considering social justice issues and local capacity-building imperatives.We conclude that researchers from HICs interested in global health research must work with LMIC partners to implement collaborative processes for assuring ethical research that respects local knowledge, cultural factors, the social determination of health, community participation and partnership, and making social accountability a paramount concern.

Sociodemographic and nutritional correlates of neurobehavioral development: a study of young children in a rural region of Ecuador

To identify and describe the sociodemographic and nutritional characteristics associated with neurobehavioral development among young children living in three communities in the northeastern Andean region of Cayambe-Tabacundo, Ecuador. Women in the study communities who had a child 3 to 61 months of age completed a questionnaire about maternal and child health and sociodemographic characteristics. The Ages and Stages Questionnaire (ASQ) was directly administered to 283 children by two trained interviewers. Growth measurements and a hemoglobin finger-prick blood test were obtained in 2003–2004. Prevalence of developmental delay was calculated, and associations between child development and maternal, child, and household characteristics were explored. High frequencies of developmental delay were observed. Children 3 to 23 months old displayed delay in gross motor skills (30.1%), and children 48 to 61 months old displayed delay in problem-solving skills (73.4%) and fine motor skills (28.1%). A high frequency of both anemia (60.4%) and stunting (53.4%) was observed for all age groups. Maternal educational level was positively associated with communication and problem-solving skills, and monthly household income was positively associated with communication, gross motor, and problem-solving skills. The results suggest a high prevalence of developmental delay and poor child health in this population. Child health status and the child’s environment may contribute to developmental delay in this region of Ecuador, but sociodemographic factors affecting opportunities for stimulation may also play a role. Research is needed to identify what is causing high percentages of neurobehavioral developmental delay in this region of Ecuador.

The Ethics of Ethics Reviews in Global Health Research: Case Studies Applying a New Paradigm

With increasing calls for global health research there is growing concern regarding the ethical challenges encountered by researchers from high-income countries (HICs) working in low or middle-income countries (LMICs). There is a dearth of literature on how to address these challenges in practice. In this article, we conduct a critical analysis of three case studies of research conducted in LMICs.We apply emerging ethical guidelines and principles specific to global health research and offer practical strategies that researchers ought to consider. We present case studies in which Canadian health professional students conducted a health promotion project in a community in Honduras; a research capacity-building program in South Africa, in which Canadian students also worked alongside LMIC partners; and a community-university partnered research capacity-building program in which Ecuadorean graduate students, some working alongside Canadian students, conducted community-based health research projects in Ecuadorean communities.We examine each case, identifying ethical issues that emerged and how new ethical paradigms being promoted could be concretely applied.We conclude that research ethics boards should focus not only on protecting individual integrity and human dignity in health studies but also on beneficence and non-maleficence at the community level, explicitly considering social justice issues and local capacity-building imperatives.We conclude that researchers from HICs interested in global health research must work with LMIC partners to implement collaborative processes for assuring ethical research that respects local knowledge, cultural factors, the social determination of health, community participation and partnership, and making social accountability a paramount concern.