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

Sandra Franrenet 1 Grégoire Moutel 1 François Raffi 2 François Dabis 3 Mathias Bruyand 3 Christian Hervé 1 Catherine Leport 4 Nathalie Duchange 1, *
* Auteur correspondant
1 EA 4569 - Laboratoire Ethique Politique et Santé
2 Maladies infectieuses et tropicales
3 Epidémiologie et Biostatistique [Bordeaux]
4 Modèles et méthodes de l'évaluation thérapeutique des maladies chroniques
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.
Keywords : cohort information after inclusion research participants HIV therapeutic misconception
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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〉
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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〉

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