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DNA sequencer output.

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

Activities

Outputs

  • 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 Group Meeting November 2022

UK-FR GENE Workshop, 23 November 2022

Title Image courtesy of National Human Genome Research Institute