Information that Should be Given to HIV Cohort Participants During Ongoing Research: The Viewpoints of Patient Representatives and Research Professionals.

Abstract : While investigators have a duty to provide research participants with summary findings at the end of a study, providing general information during the course of research is rarely considered. However, this raises an important ethical issue in the context of long-term studies such as cohorts or biobanks. We investigated this issue in the context of two ANRS cohorts of HIV-infected patients, AQUITAINE and COPILOTE. Face-to-face interviews were conducted with HIV patient representatives and research professionals concerning the delivery of information in the course of the research. Respondents stated that participants wish to be informed of research results (both aggregate and individual) but also expect general information about the cohort itself, research progression, and what their participation may provide. It was concluded that information provided during the course of the research may help participants to distinguish between care and research. The essential role of clinicians-investigators in providing information was emphasized.
Type de document :
Article dans une revue
Journal of Empirical Research on Human Research Ethics, SAGE Publications (UK and US), 2011, 6 (4), pp.76-83. 〈10.1525/jer.2011.6.4.76〉
Liste complète des métadonnées

Littérature citée [15 références]  Voir  Masquer  Télécharger

http://www.hal.inserm.fr/inserm-00658527
Contributeur : Nathalie Duchange <>
Soumis le : mardi 10 janvier 2012 - 15:34:53
Dernière modification le : lundi 6 novembre 2017 - 16:50:01
Document(s) archivé(s) le : lundi 14 mai 2012 - 13:19:41

Fichier

JER0604_08.pdf
Fichiers éditeurs autorisés sur une archive ouverte

Identifiants

Collections

Citation

Sandra Franrenet, Grégoire Moutel, François Raffi, François Dabis, Mathias Bruyand, et al.. Information that Should be Given to HIV Cohort Participants During Ongoing Research: The Viewpoints of Patient Representatives and Research Professionals.. Journal of Empirical Research on Human Research Ethics, SAGE Publications (UK and US), 2011, 6 (4), pp.76-83. 〈10.1525/jer.2011.6.4.76〉. 〈inserm-00658527〉

Partager

Métriques

Consultations de la notice

277

Téléchargements de fichiers

200