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

Sci Eng Ethics. 2019 Oct;25(5):1597-1602. doi: 10.1007/s11948-019-00085-4. Epub 2019 Mar 12.

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: Dynamic e-IC; Genetic data; Two-sided market.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Biological Specimen Banks / ethics*
  • Databases, Genetic / ethics*
  • France
  • Humans
  • Informed Consent*
  • Patient Access to Records*
  • United States