IHEM external speaker Prof. Ruth Horn: public ZOOM access

Title: Ethical and social implications of public–private partnerships in the context of genomic/big health data collection

Abstract: This talk discusses the ethical and social issues raised by public-private partnerships in the context of large-scale genomics initiatives in France, Germany, the United Kingdom and Israel, i.e. collaborations where commercial entities are given access to publicly held genomic data. While the public sector relies on partnerships with commercial entities to exploit the full potential of the data it holds, such collaborations may have an impact on the return of benefits to the public sector and on public trust, and subsequently challenge the social contract.

Prof. Horn will present the ways in which the four countries examined respond to the challenges posed to the social contract, and what safeguards they put in place to secure public trust. She will then present three approaches to address the challenges of private-public partnerships in secondary data use. In conclusion, she offers a set of minimum requirements for these partnerships within solidarity-based publicly funded healthcare systems.

If you would like to attend online, please use the following Zoom dial-in info:

https://tum-conf.zoom.us/j/63062412184

Meeting-ID: 630 6241 2184

Code: 536634

Bio Prof. Ruth Horn

Ruth is professor of medical ethics and deputy director of the Institute for Ethics and History of Health in Society, University of Augsburg, and associate professor at the Ethox Centre, University of Oxford. She has studied sociology at the LMU, Munich and the EHESS, Paris. She has held positions at the ENS, Paris and University of Bristol, and guest professorships at the University Paris 7, the Maison des Sciences de l’Homme, Paris, and the University of Bochum. Ruth works on ethical questions raised by new technologies in different socio-cultural contexts. Her comparative empirical bioethics approach is at the intersection between bioethics, sociology and law/social policy. Currently, she is leading a UK ESRC funded project exploring the ethical issues of non-invasive prenatal testing in England, France, and Germany; and a DFG funded collaborative study on ethical issues of cystic fibrosis genetic testing in Germany and Israel (with A. Raz, BGU, IL). Ruth is co-lead of the UK-France-Germany Genomics and Ethics Network (UK-FR+ GENE), and, among others, member of the French CNRS Ethics Committee (COMETS), and the ethics advisory committees of Genomics England, the British Society for Genetic Medicine Prenatal Genomics Group, and the German Human Genome-Phenome Archive.