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The ethics of genomic medicine: redefining values and norms in the UK and France

Authors :
Gaille, Marie
Horn, Ruth
Bale, Mark
Bourgain, Catherine
Buchanan, James
Cambon-Thomsen, Anne
Chneiweiss, Herve
Clarke, Angus
Dove, Edward
Guchet, Xavier
Hallowell, Nina
Kerasidou, Angeliki
Lucassen, Anneke
Maleady-Crowe, Fiona
Merchant, Jennifer
Parker, Michael
Soulier, Alexandra
Vassy, Carine
Consortia, The UK-FR GENE (Genetics and Ethics Network)
CERMES3 - Centre de recherche Médecine, sciences, santé, santé mentale, société (CERMES3 - UMR 8211 / U988 / UM 7)
École des hautes études en sciences sociales (EHESS)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Centre National de la Recherche Scientifique (CNRS)-Université de Paris (UP)
Institut d'Histoire et de Philosophie des Sciences et des Techniques (IHPST)
Université Paris 1 Panthéon-Sorbonne (UP1)-Centre National de la Recherche Scientifique (CNRS)
Consortia, UK-FR GENE (Genetics and Ethics Network)
Buchanan, J
Hallowell, N
Kerasidou, A
Parker, M
Centre National de la Recherche Scientifique (CNRS)-Université Paris 1 Panthéon-Sorbonne (UP1)
Sciences, Philosophie, Histoire (SPHERE UMR 7219)
Centre National de la Recherche Scientifique (CNRS)-Université de Paris (UP)
Source :
European Journal of Human Genetics, European Journal of Human Genetics, Nature Publishing Group, 2021, 29, pp.780-788. ⟨10.1038/s41431-020-00798-2⟩, Gaille, M, Horn, R, Bale, M, Bourgain, C, Buchanan, J, Cambon-Thomsen, A, Chneiweiss, H, Clarke, A, Dove, E, Guchet, X, Hallowell, N, Kerasidou, A, Lucassen, A, Maleady-Crowe, F, Merchant, J, Parker, M, Soulier, A, Vassy, C & Consortia, T UK-FR GENE G A E N 2021, ' The ethics of genomic medicine : Redefining values and norms in the UK and France ', European Journal of Human Genetics, vol. 29, no. 5, pp. 780–788 . https://doi.org/10.1038/s41431-020-00798-2, European Journal of Human Genetics, Nature Publishing Group, 2021, 29 (5), pp.780-788. ⟨10.1038/s41431-020-00798-2⟩
Publication Year :
2021
Publisher :
HAL CCSD, 2021.

Abstract

This paper presents a joint position of the UK-France Genomics and Ethics Network (UK-FR GENE), which has been set up to reflect on the ethical and social issues arising from the integration of genomics into routine clinical care in the UK and France. In 2018, the two countries announced enhanced cooperation between their national strategies, Genomics England and Plan France Médecine Génomique 2025, which offers a unique opportunity to study the impact of genomic medicine and relevant policies in different national contexts. The paper provides first insights into the two national strategies and the norms, values and principles at stake in each country. It discusses the impact of genomic medicine on established relationships and existing regulations, and examines its effects on solidarity and trust in public healthcare systems. Finally, it uses the social contract as an analytical lens to explore and redefine the balance between individual rights and collective duties in the context of genomic medicine. This paper leads to three key observations: (1) despite each country’s strategy being at a different stage of implementation, the two countries face similar ethical issues; (2) each country tries to solve these issues by (re-)defining individual rights and collective duties in its own way; (3) the social contract presents a useful tool to analyse the ways the UK and France address the ethical challenges raised by genomics. This overview lays the groundwork for future in-depth comparison, and drive collaborative research, between the UK and France.

Details

Language :
English
ISSN :
10184813 and 14765438
Database :
OpenAIRE
Journal :
European Journal of Human Genetics, European Journal of Human Genetics, Nature Publishing Group, 2021, 29, pp.780-788. ⟨10.1038/s41431-020-00798-2⟩, Gaille, M, Horn, R, Bale, M, Bourgain, C, Buchanan, J, Cambon-Thomsen, A, Chneiweiss, H, Clarke, A, Dove, E, Guchet, X, Hallowell, N, Kerasidou, A, Lucassen, A, Maleady-Crowe, F, Merchant, J, Parker, M, Soulier, A, Vassy, C & Consortia, T UK-FR GENE G A E N 2021, ' The ethics of genomic medicine : Redefining values and norms in the UK and France ', European Journal of Human Genetics, vol. 29, no. 5, pp. 780–788 . https://doi.org/10.1038/s41431-020-00798-2, European Journal of Human Genetics, Nature Publishing Group, 2021, 29 (5), pp.780-788. ⟨10.1038/s41431-020-00798-2⟩
Accession number :
edsair.doi.dedup.....3b46e9bb3effb3e36d116a17cca3d5a5
Full Text :
https://doi.org/10.1038/s41431-020-00798-2⟩