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'Biobanks' "engagements": engendering trust or engineering consent?'

The rapid development of biobanks internationally reflects the considerable expectations attached to the exploitation of genetics knowledge. However, establishing consent and legitimacy for the new generation of biobanks is not without its challenges because they tend to be prospective in nature, in...

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Detalles Bibliográficos
Autor principal: Petersen, Alan
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer Berlin Heidelberg 2007
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5424930/
http://dx.doi.org/10.1186/1746-5354-3-1-31
Descripción
Sumario:The rapid development of biobanks internationally reflects the considerable expectations attached to the exploitation of genetics knowledge. However, establishing consent and legitimacy for the new generation of biobanks is not without its challenges because they tend to be prospective in nature, involving the collection of DNA, personal medical and lifestyle data generally held over a very long period of time for unspecified research purposes. Thus far, biobanks have tended to be established ahead of wide-ranging debate about their broad implications. Making specific reference to the 'engagement' processes employed by UK Biobank during its establishment phase, this article focuses on the politics of 'public engagement'. It examines the context of arguments for 'public engagement', drawing attention to how particular approaches to 'engagement' within biobank projects may serve to limit debate on substantive questions arising from their development. Unless biobanks' 'engagements' substantially involve publics in deliberations about their development, it is argued, publics are likely to become distrustful of projects and perhaps resist other similar population-based health initiatives in the future.