title: [Toward dynamic informed consent].
abstract: "Personalized medicine" or "data medicine" should make it possible to use mass data to tailor patient treatment. These data are collected from analyses of biological samples, combined with clinical data. At a time when all sorts of information are instantly available via the Internet, the protection of genetic data, in particular, raises new issues with regard to the nature, means, status and usage of these data. Solutions to these problems are required, together with a clear, unambiguous legal, moral and ethical stance, to facilitate the spatial and temporal development of personalized medicine. At the forefront of these issues is the model of informed consent, which consent that has not been modified, despite many advances in technology. Medicine is now much more dynamic, and the possibilities for the real-time exchange and sharing of information, genetic data, or even biological samples, between patients, clinicians, researchers and industrial partners, must now be considered. We describe herein the particular advantages of a so-called "dynamic" and "enriched" consent, given via electronic means, in the context of the development of personalized medicine.
authors.affiliation: Laboratoire d'éthique médicale et médecine légale, EA4569, Université Paris Descartes, Centre universitaire des Saints Pères, 45, rue des Saints-Pères, 75006 Paris, France - Cancer research for personalized medicine (CARPEM), Paris Descartes, APHP (HEGP, Cochin, Necker) Inserm, Paris, France.
authors.forename: Henri-Corto
authors.initials: HC
authors.lastname: Stoeklé
authors.affiliation: Centre national de génotypage, Institut de génomique, CEA, 2, rue Gaston Crémieux, 91057 Évry, France - LaBex GenMed, Fondation Jean Dausset, Paris, France.
authors.forename: Jean-François
authors.initials: JF
authors.lastname: Deleuze
authors.affiliation: Laboratoire d'éthique médicale et médecine légale, EA4569, Université Paris Descartes, Centre universitaire des Saints Pères, 45, rue des Saints-Pères, 75006 Paris, France - Centre national de génotypage, Institut de génomique, CEA, 2, rue Gaston Crémieux, 91057 Évry, France - Laboratory of neglected human genetics, CNG, CEA, Évry, France.
authors.forename: Guillaume
authors.initials: G
authors.lastname: Vogt
authors.affiliation: Laboratoire d'éthique médicale et médecine légale, EA4569, Université Paris Descartes, Centre universitaire des Saints Pères, 45, rue des Saints-Pères, 75006 Paris, France - Cancer research for personalized medicine (CARPEM), Paris Descartes, APHP (HEGP, Cochin, Necker) Inserm, Paris, France.
authors.forename: Christian
authors.initials: C
authors.lastname: Hervé
mesh_terms: D003219:Confidentiality; D032921:Consensus; D003657:Decision Making / Q000941:ethics; D030881:Disclosure / Q000331:legislation & jurisprudence; D005602:France; D005820:Genetic Testing / Q000331:legislation & jurisprudence / Q000592:standards; D006801:Humans; D007258:Informed Consent / Q000331:legislation & jurisprudence / Q000592:standards; D057285:Precision Medicine / Q000941:ethics