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.”
Highlights
French genetic research still has a relatively “classical,” if not archaic view of the nature of a cohort.[1]
As highlighted by a recent expert opinion from the French national consultative committee for ethics (CCNE),* apart from being rather small, French cohorts are subject to a number of other problems: data dispersion, gaps in interoperability and insufficient sharing and coordination of resources
Two national platforms are being set up to deal with these difficulties: the French national plan for genetic data, MFG-2025 (Plan France Médecine Génomique 2025†) and the Health data hub.‡ the real effectiveness of these platforms remains, at this stage highly relative
Summary
French genetic research still has a relatively “classical,” if not archaic view of the nature of a cohort.[1]. E-CE would make it possible to create an online computer interface (website) “connecting” participants in research studies, doctors, investigating researchers and study coordinators for the storage and use of data (responses to questions, test results, database) and biological samples (Figure 2).
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