TY - JOUR
T1 - The ethics of genomic medicine
T2 - Redefining values and norms in the UK and France
AU - Gaille, Marie
AU - Horn, Ruth
AU - Consortia, The UK-FR GENE (Genetics and Ethics Network)
A2 - Bale, Mark
A2 - Bourgain, Catherine
A2 - Buchanan, James
A2 - Cambon-Thomsen, Anne
A2 - Chneiweiss, Herve
A2 - Clarke, Angus
A2 - Dove, Edward
A2 - Guchet, Xavier
A2 - Hallowell, Nina
A2 - Kerasidou, Angeliki
A2 - Lucassen, Anneke
A2 - Maleady-Crowe, Fiona
A2 - Merchant, Jennifer
A2 - Parker, Michael
A2 - Soulier, Alexandra
A2 - Vassy, Carine
PY - 2021/5
Y1 - 2021/5
N2 - 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.
AB - 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.
U2 - 10.1038/s41431-020-00798-2
DO - 10.1038/s41431-020-00798-2
M3 - Article
SN - 1476-5438
VL - 29
SP - 780
EP - 788
JO - European Journal of Human Genetics
JF - European Journal of Human Genetics
IS - 5
ER -