Other affiliationsHeLEX: Centre for Health, Law and Emerging Technologies
Deborah Mascalzoni, PhD, is Research Group Leader at EURAC IfB and Senior Researcher at Uppsala University with a comprehensive ELSI background. Her main research interests are genetics and new technologies including informed consent, patient communication, privacy and data sharing. She has been leading projects in research participants engagement and dynamic consent. She works on ELSI of biobanking and registries both in the rare diseases (RD-connect, Euroteam, BT-Cure) and in the population’s studies area (CHRIS). Together with IT experts, D. Mascalzoni planned and developed the dynamic consent platform for the CHRIS study (2011-ongoing) at Eurac, applied to more than 13.000 participants (https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-015-0704-9).
D. Mascalzoni is author/co-author of more than 30 articles, 40 conference papers, and six book chapters. She published a book on biobanks and law in the EU context.
D. Mascalzoni obtained over 1.000.000 Euro in grant applications from both European and Italian funding bodies.
Holding a PhD in Bioethics from the Faculty of Law at Bologna University, D. Mascalzoni has been teaching research ethics and bioethics in Sweden and Italy.
Dr Mascalzoni serves on a number of advisory boards: vice president of the South Tyrol Health system ethical board, member of the ELSI Group of BBMRI (Biobanking and Biomolecular Resources Research Infrastructure) Italy, Ethical Advisor for Telethon Italy, Ethical Advisor for UNIAMO, National Referent for legal and ethical issues WIKI Platform of BBMRI, member of the ethical group of the International Genetic Epidemiology Society (IGES). She is experienced in drafting policy documents and is a member of the code of conduct drafting group for BBMRI ERIC.