UK-FR GENE Workshop

UK-FR GENE Workshop

Comparative Perspectives on Ethical, Legal and Social Issues of Genomics in Research and Practice

Big Data Institute, Oxford
30th September - 1st October 2019


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 publically funded health care systems will 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 where British and French researchers and other stakeholders in the field can reflect on 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. UKFR GENE creates an opportunity to develop joint research agendas, and collaborative projects and grant applications that will lead to important outcomes informing ethical standards in the use of genomic technologies and their implementation in clinical practice in the UK and France

This workshop is the first of a series of workshops of our network. It provides an overview of some of the main issues raised by genomics and of the different approaches in each country. The workshop creates an opportunity to identify themes for future workshop and to develop joint research agendas, collaborative projects and joint grant applications.

Steering committee:
Ruth Horn (The Ethox Centre, WEH, Oxford), Marie Gaille (SPHERE, CNRS, University Paris Diderot), Michael Parker (The Ethox Centre, WEH, Oxford), Mark Bale (Genomics England), Hervé Chneiweiss (CNRS), Jennifer Merchant (University Paris 2 Panthéon-Assas), Anne Cambon-Thomsen (University of Toulouse, CNRS), Fiona Maleady-Crowe (Genomics England)


Monday 30th September

10.30-10.45 Welcome (Marie Gaille and Ruth Horn)


Session 1: National initiatives in genomic research and medicine and international challenges
Chair: Anne Cambon-Thomsen (CNRS)


Mark Bale, Genomics England and Franck Lethimonnier, France Médecine Génomique
Overview of Genomics England and France Médecine Génomique
11:15-11:45 Edward Dove, University of Edinburgh
The EU General Data Protection Regulation: Implications for International Genomic Research
11:45-12:15 James Buchanan, University of Oxford
Improving the health economics evidence base for genomic testing
12:15-12:30 General discussion
12:30-13:30 Lunch Break


Session 2: Collecting, storing and curating genomic data
Chair: Hervé Chneiweiss (CNRS)


Xavier Guchet, University of Technology of Compiègne
Biobanks in the era of Personalized Medicine

14:30-15:00 Alexandra Soulier, University of Uppsala
Politicising research ethics? The case of genomic data
14:00-14:30 Angus Clarke, University of Cardiff
Life World: research participants as co-constructing our knowledge of their deliberations
15:00-15:30 Coffee Break


Session 3: Clinical genomics and data
Chair: Elizabeth Ormondroyd (University of Oxford)

15:30-16:00 Anneke Lucassen, University of Southampton
The ‘return’ of genomic findings in healthcare: an oxymoron belying deterministic views of genetics?
16:00-16:30 Adam Hedgecoe, University of Cardiff
Uncertainty of sequencing in the clinic
16:30-17:00 Catherine Bourgain, INSERM
Making precision medicine doable in the clinic. Insights from a French case study


Tuesday 1st October

Session 4: Social contract, trust and privacy
Chair: Nina Hallowell (University of Oxford)

09:30-10:00 Arnaud de Guerra, French Ministry of Solidarities and Health
Developing consent forms and patient information sheets for genomic testing in the health care context
10:00-10:30 Michael Parker, University of Oxford
Ethics and the social contract for genomics
10:30-10:45 Coffee Break
10:45-11:15 Angeliki Kerasidou, University of Oxford
Genomics data sharing and trust
11:15-11:45 Jennifer Merchant, Paris University Pantheon-Assas
The Concept of “Genetic Privacy” and Its Regulation: France/United Kingdom/United States
11:45-12:00 General discussion
12:00-13:00 Lunch Break


Session 5: Ethical issues in pre-/ neonatal genomics
Chair: Angus Clarke (University of Cardiff)

13:00-13:30 Ruth Horn, University of Oxford
Ethical issues of prenatal whole genome/exome sequencing: the PAGE study
13:30-14:00 Marie Gaille, CNRS
Ethical issues related to neonatal testing and screening
14:00-14:30 Carine Vassy, Paris University 13
Access to cell-free foetal DNA testing in France: national guidelines and economic calculations
14:30-14:45 Coffee Break
14:45-15:15 Future directions, projects and collaborations



30 September - 1 October

10:00 AM - 6:00 PM


Big Data Institute | University of Oxford
Li Ka Shing Centre for Health Information and Discovery
Seminar Room 1
Old Road Campus

Oxford, OX3 7LF, United Kingdom
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(+44)(0)1865 2 87770