UK-FR-D+ GENE (Genomics and Ethics Network)

Large national genomic programmes have been created globally, including in many European countries like France, England and Germany, to advance the realisation of the potential genomic medicine holds to promote health and prevent disease as well as to drive industry and economic growth. 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. Such standards are of particular importance where national genomic programmes (e.g. Genomics England, the Plan France Médecine Génomique 2025, or the German genomeDE) are developed within publicly funded solidarity-based health systems that require the equitable return of benefits of these programmes to society as a whole.

UK-FR-D+ GENE (Genomics and Ethics Network) provides a platform for researchers and other relevant stakeholders (e.g. clinicians and policy makers) from the UK, France, Germany, but also other European and extra-European countries, to reflect on the ethical and social questions of genomic technologies and their clinical application that emerge in different national contexts but also across nations. To gain an in-depth understanding of the social and ethical issues at stake, we propose a comparative perspective that sheds new light on these issues and offers potential solutions that are context sensitive. UK-FR-D+ 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 across Europe. The network was launched in 2018 by Ruth Horn and Marie Gaille, and is coordinated today by Ruth Horn and Jennifer Merchant.

If you are interested in the network, whether you are from the UK, France, Germany or any other country, and would like to be informed about our activities, please get in touch with Ruth Horn.

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 (Our Future Health)
Natalie Banner (Genomics England)
Anne Cambon-Thomsen (CNRS)
Hervé Chneiweiss (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

5th workshop: (In)equity in the context of large-scale genomic programmes. 15-16 December 2025, Big Data Institute, Oxford.
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., Kerasidou, A., Merchant, J. et al. The value of large-scale programmes in human genomics. Eur J Hum Genet (2025). https://doi.org/10.1038/s41431-025-01844-7
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