Genetic Data, Two-Sided Markets and Dynamic Consent: United States Versus France.


Journal

Science and engineering ethics
ISSN: 1471-5546
Titre abrégé: Sci Eng Ethics
Pays: England
ID NLM: 9516228

Informations de publication

Date de publication:
10 2019
Historique:
received: 22 01 2018
accepted: 16 01 2019
pubmed: 14 3 2019
medline: 14 5 2020
entrez: 14 3 2019
Statut: ppublish

Résumé

Networks for the exchange and/or sharing of genetic data are developing in many countries. We focus here on the situations in the US and France. We highlight some recent and remarkable differences between these two countries concerning the mode of access to, and the storage and use of genetic data, particularly as concerns two-sided markets and dynamic consent or dynamic electronic informed consent (e-IC). This brief overview suggests that, even though the organization and function of these two-sided markets remain open to criticism, dynamic e-IC should be more widely used, especially in France, if only to determine its real effectiveness.

Identifiants

pubmed: 30864046
doi: 10.1007/s11948-019-00085-4
pii: 10.1007/s11948-019-00085-4
doi:

Types de publication

Journal Article Research Support, Non-U.S. Gov't

Langues

eng

Sous-ensembles de citation

IM

Pagination

1597-1602

Références

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Auteurs

Henri-Corto Stoeklé (HC)

Laboratory of Neglected Human Genetics (NHG), CNRGH-CEA, Evry, France.
Centre National de Recherche en Génomique Humaine (CNRGH), Direction de la recherche fondamentale, CEA, Institut de biologie François Jacob, Université Paris Saclay, Evry, France.

Mauro Turrini (M)

Université de Nantes - Maison des Sciences de l'Homme (MSH), Nantes, France.

Philipe Charlier (P)

Département de la Recherche et de l'Enseignement, Musée du Quai Branly - Jacques Chirac, 222 rue de l'Université, 75007, Paris, France.
UVSQ (Laboratoire DANTE - EA 4498), 2 avenue de la source de la Bièvre, 78180, Montigny-le-Bretonneux, France.

Jean-François Deleuze (JF)

Centre National de Recherche en Génomique Humaine (CNRGH), Direction de la recherche fondamentale, CEA, Institut de biologie François Jacob, Université Paris Saclay, Evry, France.
LaBex GenMed, Fondation Jean Dausset, Paris, France.
Centre d'études du polymorphisme humain (CEPH), Fondation Jean Dausset, Paris, France.

Christian Hervé (C)

International Academy of Ethics, Medicine and Public Health, Paris Descartes University, Paris, France.

Guillaume Vogt (G)

Laboratory of Neglected Human Genetics (NHG), CNRGH-CEA, Evry, France. guillaume.vogt@inserm.fr.
Centre National de Recherche en Génomique Humaine (CNRGH), Direction de la recherche fondamentale, CEA, Institut de biologie François Jacob, Université Paris Saclay, Evry, France. guillaume.vogt@inserm.fr.
Laboratoire Neglected Human Genetics, INSERM, Université Paris Descartes, Paris, France. guillaume.vogt@inserm.fr.

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Classifications MeSH