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Med Sci (Paris). 2018 Dec;34(12):1100-1104. doi: 10.1051/medsci/2018291. Epub 2019 Jan 9.

[The ownership of genetic data: from data to information].

[Article in French]

Author information

1
Laboratoire de Génétique Humaine Négligée, CNRGH-CEA, Évry, France - Centre National de Recherche en Génomique Humaine (CNRGH), Direction de la recherche fondamentale, CEA, Institut de biologie François Jacob, Université Paris Saclay, Évry, France.
2
Centre de Droit Européen, Université Paris II Panthéon-Assas, Paris, France.
3
Université de Nantes - Maison des Sciences de l'Homme (MSH), Nantes, France.
4
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.
5
Académie Internationale Éthique, Médecine et Politiques Publiques, Université Paris Descartes, Paris, France.
6
Centre National de Recherche en Génomique Humaine (CNRGH), Direction de la recherche fondamentale, CEA, Institut de biologie François Jacob, Université Paris Saclay, Évry, France - LaBex GenMed, Fondation Jean Dausset, Paris, France - Centre d'études du polymorphisme humain (CEPH), Fondation Jean Dausset, Paris, France.
7
Laboratoire de Génétique Humaine Négligée, CNRGH-CEA, Évry, France - Centre National de Recherche en Génomique Humaine (CNRGH), Direction de la recherche fondamentale, CEA, Institut de biologie François Jacob, Université Paris Saclay, Évry, France - Laboratoire de Génétique Humaine Négligée, Inserm, Université Paris Descartes, Paris, France.

Abstract

In France, genetic data are not covered by property laws. They are considered to be equivalent to a part of the human body, to be protected rather than as something of economic value. However, in this highly competitive world, France must find solutions to increase the scientific and economic values of its genetic data. One possibility would be to define genetic data as raw information with no value for use. The choice of such a value of use (clinical, scientific, economic, etc.), following various key analysis and treatment processes will thus transform genetic data into useful information. In this case, and under certain conditions, intellectual property law could consider this information to be an original creation with an economic value, whilst maintaining current levels of protection for genetic data. France thus faces a choice between changing its laws concerning the protection of genetic data, bringing them into line with the North American approach, according to which data are a form of capital that everyone has the right to increase or sell, and making the distinction between genetic data and information clearer.

PMID:
30623772
DOI:
10.1051/medsci/2018291

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