3rd UK-FR+ GENE Workshop

Big Data Institute, Oxford
4th-5th April 2023

Abstract

In our third UK-FR GENE+ (Genomics and Ethics Network) workshop, we would like to explore how England, France and Germany, and also other countries like Israel, address the challenge of public-private partnerships in genomic data collection, storage and transfer. More often than naught, these partnerships are perceived by patients and the public at large as lacking transparency, which creates an uncertain environment for patients/participants about what they can expect in terms of benefits, outcome, and future usage of their data. Surveys in countries with solidarity based public health care systems that are committed to benefit the good of the public, have shown that public trust in large-scale health data initiatives decreases when private, profit-driven companies come in. Indeed, when participant data leaves the initial trusted environment and transit downstream through a public-private partnership, it becomes difficult for patients/public to trust the upstream data safeguarding and future use. In this regard, our 2023 meeting proposes to further examine these partnerships and how public trust is maintained (or challenged).

Organisers: Ruth Horn, Universitites of Oxford (UK) and Augsburg (GER) and Jennifer Merchant, University of Paris 2, Institut Universitaire de France

UK-FR GENE steering-committee: Michael Parker, University of Oxford (UK); Mark Bale, Genomics England (UK); Natalie Banner, Genomics England (UK); Anne Cambon-Thomsen, CNRS (FR); Herve Chneiweiss, CNRS (FR)

Financial support: Wellcome Centre for Ethics and Humanities (WEH), Oxford (UK); Inserm Ethics Committee (FR); Institut Universitaire de France (FR); French Embassy in London (FR); University of Augsburg (GER)

For further information, including the programme, please see this pdf-flyer

or contact Ruth Horn: ruth.horn@ethox.ox.ac.uk or Jennifer Merchant: jennifer.merchant@u-paris2.fr