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

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 co...

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Autores principales: Gaille, Marie, Horn, Ruth
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Springer International Publishing 2021
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8110530/
https://www.ncbi.nlm.nih.gov/pubmed/33456054
http://dx.doi.org/10.1038/s41431-020-00798-2
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author Gaille, Marie
Horn, Ruth
author_facet Gaille, Marie
Horn, Ruth
author_sort Gaille, Marie
collection PubMed
description 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.
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spelling pubmed-81105302021-05-11 The ethics of genomic medicine: redefining values and norms in the UK and France Gaille, Marie Horn, Ruth Eur J Hum Genet Article 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. Springer International Publishing 2021-01-17 2021-05 /pmc/articles/PMC8110530/ /pubmed/33456054 http://dx.doi.org/10.1038/s41431-020-00798-2 Text en © The Author(s) 2021 https://creativecommons.org/licenses/by/4.0/Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made. The images or other third party material in this article are included in the article’s Creative Commons license, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons license and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this license, visit http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) .
spellingShingle Article
Gaille, Marie
Horn, Ruth
The ethics of genomic medicine: redefining values and norms in the UK and France
title The ethics of genomic medicine: redefining values and norms in the UK and France
title_full The ethics of genomic medicine: redefining values and norms in the UK and France
title_fullStr The ethics of genomic medicine: redefining values and norms in the UK and France
title_full_unstemmed The ethics of genomic medicine: redefining values and norms in the UK and France
title_short The ethics of genomic medicine: redefining values and norms in the UK and France
title_sort ethics of genomic medicine: redefining values and norms in the uk and france
topic Article
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8110530/
https://www.ncbi.nlm.nih.gov/pubmed/33456054
http://dx.doi.org/10.1038/s41431-020-00798-2
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