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Publications Rapports Presse Livres Protocoles Publications Rapports Presse Livres Protocoles Laboratory of Neglected Human Genetics Publications scientifiques Rapports Presse Livres Protocoles de recherche On parle de nous... Mise a jour le 24 Septembre 2020 Directeur: guillaume.vogt@inserm.fr, Généticien @VOGT_Guillaume contact Cliquez ici pour accéder à l'article en version Anglaise en Open Access (GRATUIT) Cliquez ici pour télécharger la traduction française lien PubMed VIDEO YouTube French-style genetics v. 2.0: the “e-CohortE” project Stoeklé HC, Bollet M, Cobat A, Charlier P, Bloch OCh, Flatot J, Draghi C, Tolyan V, Hervé C, Desvaux P, Uzan L, Grynberg M, Alcaïs A, Tolédano A, VOGT G Clin. Genet. (2019 Jun 29) 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 demonstrated 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 ». This article is protected by copyright. All rights reserved. Publications scientifiques Cliquez ici pour accéder à l'article Society, law, morality and bioethics: A systemic point of view Société, droit, morale et bioéthique : un point de vue systémique Stoeklé HC, Deleuze JF, Vogt G Ethics, Medicine and Public Health, Volume 10 , July–September 2019, Pages 22-26 Summary Society can be seen as a system that organizes interactions between individuals to ensure its survival, through legal and moral standards in particular. Law and morality enact and apply these standards, whereas bioethics studies their operationality in the precise case of the emergence of new phenomena relating to natural sciences or medicine. In other words, whereas law and morality judge new phenomena, bioethics studies them to identify the ethical issues they raise, to evaluate the associated risks and benefits and to propose solutions, which may include modifying the standards, to maximize the survival of society. This systemic approach can help us to understand why and how bioethics differs from law and morality, and more. Résumé Postulons qu’une société est un système, qui organise les interactions entre individus en fonction de sa survie, en particulier grâce à des normes juridiques et morales. Le droit et la morale édictent, et appliquent, alors ces normes, tandis que la bioéthique étudie leur opérationnalité, dans le cas précis de l’émergence d’un phénomène relatif aux sciences naturelles, ou à la médecine. En d’autres termes, pendant que le droit et la morale jugent ce phénomène, la bioéthique l’étudie, pour identifier les enjeux éthiques, évaluer les bénéfices, ainsi que les risques, et proposer des solutions impliquant de modifier, ou non, ces normes, mais maximisant la survie de cette société. Cette approche systémique permet ainsi de mieux comprendre pourquoi, et comment, la bioéthique diffère du droit et de la morale, et plus encore. Cliquez ici pour accéder à l'article en version Anglaise en Open Access (GRATUIT) Cliquez ici pour télécharger la traduction française lien PubMed French-style genetics v. 2.0: the “e-CohortE” project Stoeklé HC, Bollet M, Cobat A, Charlier P, Bloch OCh, Flatot J, Draghi C, Tolyan V, Hervé C, Desvaux P, Uzan L, Grynberg M, Alcaïs A, Tolédano A, VOGT G Clin. Genet. (2019 Jun 29) 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 demonstrated 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 ». This article is protected by copyright. All rights reserved. Cliquez ici pour accéder à l'article Genetic data, two-sided markets and dynamic consent: United States versus France Stoeklé HC, Turrini M, Charlier P, Deleuze JF, Hervé C, Vogt G Sci Eng Ethics. (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. Cliquez ici pour accéder à l'article La propriété des données génétiques : protection, valorisation et information [The ownership of genetic data: protection, valuation and information] Stoeklé HC, Forster N, Turrini M, Charlier P, Hervé C, Deleuze JF, Vogt G Medecine Sciences (Paris) ( 2018 ; 34 : 1100-4) 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 extremely competitive world, France must solutions to increase the scientific and economic value 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, patent 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. Résumé En France, la donnée génétique n’est pas accessible au travers du droit de la propriété. Elle est assimilée à un élément du corps humain à protéger, et non un bien à valoriser. Pourtant, dans notre monde extrêmement concurrentiel, il est indispensable que la France trouve des solutions lui permettant de valoriser scientifiquement, et économiquement, les données génétiques de façon p
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