| Titre : | Involving citizens in the ethics of biobank research : Informing institutional policy through structured public deliberation. (2012) |
| Auteurs : | O'DOHERTY (Kieran-C) : CAN. Department of psychology. University of Guelph. Guelph. ON. ; Michael-M BURGESS ; Alice-K HAWKINS |
| Type de document : | Article |
| Dans : | Social science and medicine (vol. 75, n° 9, 2012) |
| Pagination : | 1604-1611 |
| Langues: | Anglais |
| Mots-clés : | Ethique ; Banque tissu ; Politique santé ; Canada ; Confidentialité ; Homme ; Amérique ; Consentement ; Amérique du Nord |
| Résumé : | [BDSP. Notice produite par INIST-CNRS DD8R0xDj. Diffusion soumise à autorisation]. This paper reports on the design, implementation, and results of a structured public deliberation on human tissue biobanking conducted in Vancouver, Canada, in 2009. This study builds on previous work on the use of deliberative democratic principles and methods to engage publics on the social and ethical implications of human tissue biobanking. In a significant refinement of methods, we focus on providing public input to institutional practice and governance of biobanks using a tailored workbook structure to guide participants'discussion. Our focus is on the local context and practices of a particular institution, the BC BioLibrary. However, elements of both the methodological innovations and the ethical guidance implied by our findings are generalisable for biobanking internationally. Recommendations from the deliberative forum include issues of informed consent, privacy protections, collection of biospecimens, governance of biobanks, and how to manage the process of introduction between biobanks and potential donors. Notable findings include public support for research use of anonymised unconsented tissue samples when these come from archived collections, but lack of support when they are collected prospectively. |
Service Documentation EHESP
Me connecter
PORTAIL DOCUMENTAIRE
École des hautes études en santé publique
Catalogue
Multi-bases
Accueil
Sélection de la langue
Adresse
Service Documentation EHESPBibliothèque Rennes Avenue du Professeur Léon Bernard – CS 74312 – 35043 Rennes Cedex Bibliothèque MSSH Paris 20 avenue George Sand - 93210 La Plaine Saint-Denis
France
Bibliothèque Rennes : 02 99 02 29 50 Bibliothèque MSSH Paris : 02 99 02 24 50
contact