UK-FR GENE (Genomics and Ethics Network)

In 2018, France and the UK announced enhanced cooperation between Genomics England and the French ‘Médecine Génomique 2025’ project in order to deliver a global leading public genomic medicine service. The successful achievement of this aim requires the development of common approaches, not only to standardisation of the new technologies, but also to ethical standards in research and practice.

For the first time, two publicly funded health care systems imbed the use of whole genome sequencing into routine patient care; yet each system is based on different values and principles that give rise to different ways of implementing new genomic technologies into clinical practice. In order to develop common approaches to good ethical practice, we need a clear understanding of existing debates, regulations and practices, and of the underlying norms in each country.

UK-FR GENE (Genomics and Ethics Network) provides a platform for British and French researchers and other stakeholders in the field to reflect on the ethical and social questions of genomic technologies and their clinical application that emerge in each national context.

Its aim is to identify pressing ethical issues in each country and understand their socio-cultural and normative underpinnings. Exploring these issues from a comparative perspective will enable us to shed new light on them and offer potential solutions that are adapted to each context. UK-FR GENE creates an opportunity to develop joint research agendas and collaborations that aim to inform ethical standards in the use of genomic technologies in clinical practice in the UK and France.

If you are interested in the network, whether you are from the UK, France, or any other country, and would like to be informed about our activities, please get in touch with ruth.horn@ethox.ox.ac.uk. 

Coordinators

• Ruth Horn (Ethox Centre, Wellcome Centre for Ethics and Humanities, Oxford; Ethics of Medicine, Augsburg)
• Jennifer Merchant (University Paris 2)

Steering Committee

• Mark Bale (Genomics England)
• Anne Cambon-Thomsen (CNRS)
• Hervé Chneiweiss (CNRS)
• Marie Gaille (CNRS)
• Ruth Horn (Ethox Centre, Wellcome Centre for Ethics and Humanities, Oxford; Ethics of Medicine, Augsburg)
• Jennifer Merchant (University Paris 2)
• Michael Parker (Ethox Centre, Wellcome Centre for Ethics and Humanities, Oxford)

Activities

• 4th workshop: Value(s) of large-scale genomic initiatives. 17-18 June 2024. Big Data Institute, Oxford. Organised by Ruth Horn, Angeliki Kerasidou and Jennifer Merchant.
• 3rd Workshop: Ethical and social implications of public-private partnerships in the context of genomic/big health data collection. 4-5 April 2023. Big Data Institute, Oxford. Organised by Ruth Horn and Jennifer Merchant.
• 2nd workshop: ‘The Social Contract & Genomic Data: Collecting, Managing & Sharing’, 22-23 November 2021, French Embassy in London (organized by Ruth Horn and Jennifer Merchant). Funded by the French Embassy in London
• 1st workshop: ‘Comparative Perspectives on Ethical, Legal and Social Issues of Genomics in Research and Practice’, 30 September- 1 October 2019, BDI Oxford (organized by Ruth Horn and Marie Gaille). Funded by the Big Data Institute Oxford, French Embassy in London, SPHERE, University Paris 7, Maison Francaise d’Oxford
• Kick-off meeting with steering committee: 5 November 2018, SPHERE, University Paris 7, Paris (organized by Ruth Horn and Marie Gaille). Funded by Ethox/WEH, Oxford and SPHERE, University of Paris 7

Outputs

• Horn, R., Merchant, J. & The UK-FR+GENE (Genetics and Ethics Network) Consortium. Ethical and social implications of public–private partnerships in the context of genomic/big health data collection. Eur J Hum Genet (2024). https://doi.org/10.1038/s41431-024-01608-9
• Horn, R., Merchant, J. & The UK-FR GENE Consortium. Managing expectations, rights, and duties in large-scale genomics initiatives: a European comparison. Eur J Hum Genet (2022). https://doi.org/10.1038/s41431-022-01247-y
• Gaille, M., Horn, R. & The UK-FR GENE (Genetics and Ethics Network) Consortia. The ethics of genomic medicine: redefining values and norms in the UK and France. Eur J Hum Genet 29, 780–788 (2021). https://doi.org/10.1038/s41431-020-00798-2

UK-FR GENE Workshop, 23 November 2022

Title Image courtesy of National Human Genome Research Institute