Les associations de patients et la recherche clinique académique et industrielle

Abstract : The notion of "health democracy" was introduced as a core principle into the French health law in 2002. Accordingly, stronger individual rights were recognized to patients and, at the same time, patients' representatives have progressively served at all levels of the governance of health system. In clinical research, it is mandatory since 2004 that institutional review board include patient representatives (I). Patient associationsplay a role in clinical research in financing and/or helping to organize clinical trials. In addition, associations play a role in protecting patients from abusive research--as well as from being possibly not solicited as a subject in trials that could open access to medical innovation. There is no question that, with the support of associations, a patient with HIV or myopathy--eligible but who was not solicited--will obtain to participate in a trial of his or her choice (II). If the role of patients' association in health democracy has become both unquestionable and important, it is nevertheless limited. Patients may be disadvantaged if no combative association is committed on their disease. Patients' associations' role is no substitute to that of the State and the law-only able to devote equitable rights to individuals (III).
Type de document :
Article dans une revue
Bulletin de l'Académie Nationale de Médecine, Elsevier Masson, 2015, 199 (4-5), pp.589-96
Liste complète des métadonnées

Littérature citée [13 références]  Voir  Masquer  Télécharger

https://hal.archives-ouvertes.fr/hal-01340984
Contributeur : Philippe Amiel <>
Soumis le : lundi 4 juillet 2016 - 15:52:13
Dernière modification le : jeudi 15 novembre 2018 - 20:27:37
Document(s) archivé(s) le : mercredi 5 octobre 2016 - 12:55:49

Fichiers

2015-A-AcadNatleMed_vAuteur.pd...
Fichiers produits par l'(les) auteur(s)

Identifiants

  • HAL Id : hal-01340984, version 1
  • PUBMED : 27509679

Collections

Citation

Philippe Amiel. Les associations de patients et la recherche clinique académique et industrielle. Bulletin de l'Académie Nationale de Médecine, Elsevier Masson, 2015, 199 (4-5), pp.589-96. 〈hal-01340984〉

Partager

Métriques

Consultations de la notice

422

Téléchargements de fichiers

304