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.

A survey of the distribution of information regarding hearing loss to parents by hospitals and pediatricians in the St. Louis area

This paper discusses a survey undertaken to review information on hearing loss distributed by St. Louis area hospitals and pediatricians.

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.

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.

Provision of information about drug side-effects to patients

To make informed decisions about taking medicinal drugs, people need accurate information about side-effects. A European Union guideline now recommends use of qualitative descriptions for five bands of risk, ranging from very rare (affecting < 0·01% of the population), to very common (>10%). We did four studies of more than 750 people, whom we asked to estimate the probability of having a side-effect on the basis of qualitative and quantitative descriptions. Our results showed that qualitative descriptions led to gross overestimation of risk. Until further work is done on how patients taking the drugs interpret these terms, the terms should not be used in drug information leaflets.

Evaluating explanations about drug prescriptions: effects of varying the nature of information about side effects and its relative position in explanations

This study evaluates computer-generated written explanations about drug prescriptions that are based on an analysis of both patient and doctor informational needs. Three experiments examine the effects of varying the type of information given about the possible side effects of the medication, and the order of information within the explanation. Experiment 1 investigated the effects of these two factors on people's ratings of how good they consider the explanations to be and of their perceived likelihood of taking the medication, as well as on their memory for the information in the explanation. Experiment 2 further examined the effects of varying information about side effects by separating out the contribution of number and severity of side effects. It was found that participants in this study did not “like” explanations that described severe side effects, and also judged that they would be less likely to take the medication if given such explanations. Experiment 3 therefore investigated whether information about severe side effects could be presented in such a way as to increase judgements of how good explanations are thought to be, as well as the perceived likelihood of adherence. The results showed some benefits of providing additional explanatory information.