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

Marie Gaille, Ruth Horn, Mark Bale (Member of Consortium), Catherine Bourgain (Member of Consortium), James Buchanan (Member of Consortium), Anne Cambon-Thomsen (Member of Consortium), Herve Chneiweiss (Member of Consortium), Angus Clarke (Member of Consortium), Edward Dove (Member of Consortium), Xavier Guchet (Member of Consortium), Nina Hallowell (Member of Consortium), Angeliki Kerasidou (Member of Consortium), Anneke Lucassen (Member of Consortium), Fiona Maleady-Crowe (Member of Consortium), Jennifer Merchant (Member of Consortium), Michael Parker (Member of Consortium), Alexandra Soulier (Member of Consortium), Carine Vassy (Member of Consortium), The UK-FR GENE (Genetics and Ethics Network) Consortia

Research output: Contribution to journalArticlepeer-review

Abstract / Description of output

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.
Original languageEnglish
Pages (from-to)780–788
JournalEuropean Journal of Human Genetics
Volume29
Issue number5
Early online date17 Jan 2021
DOIs
Publication statusPublished - May 2021

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