The ethics of genomic medicine: redefining values and norms in the UK and France
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 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.
Codes of Ethics, Ethics, Medical, France, Genetics, Medical/ethics, Genomics/ethics, Humans, Patient Rights, United Kingdom
780-788
Gaille, Marie
0450ed8a-66fa-469b-9d44-9cf21b944a17
Horn, Ruth
eb5e881d-9620-42e4-af35-f4f0126a56a5
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
UK-FR GENE (Genetics and Ethics Network) Consortia
17 January 2021
Gaille, Marie
0450ed8a-66fa-469b-9d44-9cf21b944a17
Horn, Ruth
eb5e881d-9620-42e4-af35-f4f0126a56a5
Lucassen, Anneke
2eb85efc-c6e8-4c3f-b963-0290f6c038a5
Gaille, Marie, Horn, Ruth and Lucassen, Anneke
,
UK-FR GENE (Genetics and Ethics Network) Consortia
(2021)
The ethics of genomic medicine: redefining values and norms in the UK and France.
European Journal of Human Genetics, 29 (5), .
(doi:10.1038/s41431-020-00798-2).
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.
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Published date: 17 January 2021
Keywords:
Codes of Ethics, Ethics, Medical, France, Genetics, Medical/ethics, Genomics/ethics, Humans, Patient Rights, United Kingdom
Identifiers
Local EPrints ID: 474713
URI: http://eprints.soton.ac.uk/id/eprint/474713
ISSN: 1018-4813
PURE UUID: 7f24f643-bbe2-4213-9d64-20e345ebda60
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Date deposited: 01 Mar 2023 18:03
Last modified: 17 Mar 2024 02:54
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Author:
Marie Gaille
Author:
Ruth Horn
Corporate Author: UK-FR GENE (Genetics and Ethics Network) Consortia
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