Immunogenetics, Epidemiology and Health Ethics, Faculty of Medicine, University Toulouse III Paul Sabatier
Professor Anne Cambon-Thomsen, MD, an immunogeneticist specialized in human biology and health ethics, is Emeritus Research Director at the National Center for Scientific Research (CNRS) in a joint unit on epidemiology and public health of the National Institute of Health and Medical Research (Inserm) and the University of Toulouse, France. She is a member of the European Group on Ethics of Science and New Technologies (EGE) and co-pilots the working group “Ethics, regulation, society” of the French plan “Genomic medicine 2025”. Previously she worked on human genetic variation in populations and diseases, transplantation immunogenetics, then on societal and policy aspects of genomics and biotechnologies.
The development of governance of human germline editing takes into account in all cases the ethical dimension; however, be it in legal provisions, in soft law such as recommendations, professional guidelines, ethics bodies opinions, and according to the national/international orientation, the place and influence of ethical aspects and the hierarchy of values considered in practice are different. A common feature is the recognition of interdisciplinarity as a key element to consider as well as the necessity of pilot studies, stakeholders consultations and long term observation in order to influence future governance. Some examples at European and French level will be given as illustration.