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Science and Engineering Ethics

, Volume 25, Issue 5, pp 1597–1602 | Cite as

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

  • Henri-Corto Stoeklé
  • Mauro Turrini
  • Philipe Charlier
  • Jean-François Deleuze
  • Christian Hervé
  • Guillaume VogtEmail author
Opinion

Abstract

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.

Keywords

Genetic data Two-sided market Dynamic e-IC 

Notes

Acknowledgements

Funding was provided by ATIGE.

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Copyright information

© Springer Nature B.V. 2019

Authors and Affiliations

  • Henri-Corto Stoeklé
    • 1
    • 2
  • Mauro Turrini
    • 3
  • Philipe Charlier
    • 4
    • 5
  • Jean-François Deleuze
    • 2
    • 6
    • 7
  • Christian Hervé
    • 8
  • Guillaume Vogt
    • 1
    • 2
    • 9
    Email author
  1. 1.Laboratory of Neglected Human Genetics (NHG)CNRGH-CEAEvryFrance
  2. 2.Centre National de Recherche en Génomique Humaine (CNRGH), Direction de la recherche fondamentale, CEA, Institut de biologie François JacobUniversité Paris SaclayEvryFrance
  3. 3.Université de Nantes - Maison des Sciences de l’Homme (MSH)NantesFrance
  4. 4.Département de la Recherche et de l’EnseignementMusée du Quai Branly - Jacques ChiracParisFrance
  5. 5.UVSQ (Laboratoire DANTE - EA 4498)Montigny-le-BretonneuxFrance
  6. 6.LaBex GenMedFondation Jean DaussetParisFrance
  7. 7.Centre d’études du polymorphisme humain (CEPH)Fondation Jean DaussetParisFrance
  8. 8.International Academy of Ethics, Medicine and Public HealthParis Descartes UniversityParisFrance
  9. 9.Laboratoire Neglected Human GeneticsINSERM, Université Paris DescartesParisFrance

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