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Clin Genet. 2019 Oct;96(4):330-340. doi: 10.1111/cge.13595. Epub 2019 Jul 11.

French-style genetics v. 2.0: The "e-CohortE" project.

Author information

1
Neglected Human Genetics Laboratory, CEA, Evry, France.
2
Centre National de Recherche en Génomique Humaine (CNRGH), Direction de la Recherche Fondamentale, CEA, Institut de Biologie François Jacob, Université Paris Saclay, Evry, France.
3
Institut Sapiens, Paris, France.
4
Institut Rafaël, Maison de l'après cancer, Levallois-Perret, France.
5
Institut de Radiothérapie et de Radiochirurgie, H Hartmann, Levallois-Perret, France.
6
Sorbonne Paris Cité, Imagine Institute, Paris Descartes University, Paris, France.
7
Laboratory of Human Genetics of Infectious Diseases, INSERM UMR 1163, Necker Branch, Paris, France.
8
Département de la Recherche et de l'Enseignement, Musée du Quai Branly - Jacques Chirac, Paris, France.
9
UVSQ (Laboratoire DANTE - EA 4498), Montigny-le-Bretonneux, France.
10
Attorney, Paris, France.
11
Sociéte Flatot, Paris, France.
12
International Academy of Ethics, Medicine and Public Health, Paris Descartes University, Paris, France.
13
Department of Urology, Cochin hospital, Paris, France.
14
Paris Descartes University, Sorbonne Paris Cité, Paris, France.
15
Institut Coeur Effort Santé, Paris, France.
16
Service de Médecine de la Reproduction & Préservation de la Fertilité, Hôpital Antoine Béclère, Clamart, France.
17
French National Reference Center for Primary Immune Deficiencies (CEREDIH), Necker-Enfants Malades University Hospital, Assistance Publique-Hôpitaux de Paris, Paris, France.
18
Neglected Human Genetics Laboratory, INSERM, Université Paris Descartes, Paris, France.

Abstract

In the digital age, a genetics cohort has become much more than a simple means of determining the cause of a disease. Two-sided markets, of which 23andMe, Ancestry DNA and MyHeritage are the best known, have showed this perfectly over the last few years: a cohort has become a means of producing massive amounts of data for medical, scientific and commercial exploitation, and for genetic use in particular. French law does not currently allow these foreign private companies to develop on French national territory and also forbids the creation of similar entities in France. However, at least in theory, this same law does not preclude the creation of new types of cohorts in France inspired by the success of two-sided markets but retaining features specific to the French healthcare management system. We propose an optimal solution for France, for genomic studies associated with multi-subject questionnaires, still purely theoretical for the moment: the development, with no need for any change in the law, of France's own version of "Genetics v.2.0": "e-CohortE."

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