Informed consent in biobank research: A deliberative approach to the debate

As acknowledged in the literature, public consultation related to biobanks has been largely oriented to assuring and informing rather than seeking considered input. In April and May of 2007, the authors participated in running a deliberative public engagement event in British Columbia, Canada, which sought to enhance public input related to the governance of biobanks. The topic of the event was 'Biobanking in British Columbia (BC)' and at the event a random-digit dialed demographically stratified sample of 21 participants deliberated on what values and interests ought to be considered in the regulation and use of biobanks for health research. In this paper, we report results related to debate over the place of informed consent in biobank research. Drawing on a pre/post-survey and qualitative analysis of event transcripts, we show that participants indicated strong support for biobanks, for a general reduction in concern for withdrawal of samples, and placed a strong emphasis on the need for review of biobanks research that is independent of funders and researchers. In this context, there was persistent disagreement about when consent was required for new research activities

The Ethical Public Scholar

As scholars, we have a critical responsibility to uphold principles such as intellectual honesty, rigour, and open communication. Those who work outside the academy, or whose scholarship spans the academic and non-academic realms, have additional responsibilities and often face more complex or different ethical dilemmas and conflicting moral imperatives in their work. This workshop will feature three experts speaking to the ethical dimensions of scholarship in different contexts: in work involving community engagement or partnership, in the health field, and in the work of ‘public intellectuals’ from any sector.Arts, Faculty ofGraduate and Postdoctoral StudiesNon UBCAnthropology, Department ofGeography, Department ofUnreviewedFacultyGraduat

Informed consent in biobank research: A deliberative approach to the debate

As acknowledged in the literature, public consultation related to biobanks has been largely oriented to assuring and informing rather than seeking considered input. In April and May of 2007, the authors participated in running a deliberative public engagement event in British Columbia, Canada, which sought to enhance public input related to the governance of biobanks. The topic of the event was 'Biobanking in British Columbia (BC)' and at the event a random-digit dialed demographically stratified sample of 21 participants deliberated on what values and interests ought to be considered in the regulation and use of biobanks for health research. In this paper, we report results related to debate over the place of informed consent in biobank research. Drawing on a pre/post-survey and qualitative analysis of event transcripts, we show that participants indicated strong support for biobanks, for a general reduction in concern for withdrawal of samples, and placed a strong emphasis on the need for review of biobanks research that is independent of funders and researchers. In this context, there was persistent disagreement about when consent was required for new research activities.Informed consent Biobanks Public engagement Deliberative democracy Canada

O pajé e o caboclo: de homem a entidade

O personagem do caboclo, representado pelos médiuns durante a possessão, é uma figura central dos cultos de possessão da Amazônia urbana. O termo designa também, de modo pejorativo, as populações ribeirinhas da região. Neste artigo, procuramos entender a relação entre o caboclo invisível e poderoso dos cultos e o caboclo-homem visto como atrasado. Após situar o processo de formação dessa categoria do mundo invisível, e sua especificidade, voltamo-nos, com base na literatura folclórica, para a construção de seu significado enquanto designação de um tipo de população regional. Observamos que os intelectuais amazônicos, suavizando as conotações negativas do termo, tentaram fundamentar nele uma construção identitária original. Esta valorização do caboclo-homem veio ao encontro do prestígio do migrante nortista no domínio religioso. Tal fenômeno favoreceu a multiplicação de referências a entidades invisíveis designadas como caboclo. No entanto, ao contrário do que ocorreu no resto do Brasil onde essa categoria se restringiu a um estereótipo do índio, na Amazônia ela se abriu aos mais diversos tipos de população, permitindo a sua identificação com ela.<br>The persona of the caboclo or 'mestizo,' represented by mediums during possession, is a central figure in the possession cults of urban Amazonia. Yet the term is also used pejoratively to designate the region's riverine populations. This article aims at understanding the relationship between the invisible and powerful caboclo found in the cults, and the human caboclo perceived as backward. After establishing the specific way in which this category of the invisible world takes shape, the paper turns to folkloric literature and examines the evolution of caboclo's meaning as a designation for a type of regional population. We find that Amazonian intellectuals, softening the term's negative connotations, attempted to use it as the basis for an authentic regional identity. This valorization of the human caboclo combined with the religious prestige of the Northern migrant, a phenomenon which in effect stimulated an increase in the number of allusions to invisible entities designated by the term. However, in contrast to the rest of Brazil where the category caboclo was restricted to a stereotype of the Indian, in Amazonia the category opened itself to a wide range of populations, allowing their identification with it