Research Group Leader
Institut für Biomedizin
Dr Deborah Mascalzoni is research group leader of the ELSI group at the Institute for Biomedicine (IfB) of Eurac Research in Bolzano, Italy, and senior researcher at the Center for Research Ethics and Bioethics (CRB), Uppsala University, Sweden. Her main research interests are genetics and new technologies including informed consent, rare diseases and vulnerable communities, participant and patient communication, privacy and data sharing. She has been working in projects focusing on research participant engagement, participant right and dynamic consent. Deborah Mascalzoni holds a PhD in Bioethics from the Faculty of Law at University of Bologna and has a comprehensive ELSI background.
She is author of more than 50 peer reviewed articles, several book chapters, and published a book.
She obtained over 2.000.000 Euro in grant applications from both European and Italian funding bodies. Some of her funded projects are Cyberhealth (on cybersecurity in health research, aiming to develop recommendations for resilient governance mechanisms for health cyberspace that can meet social expectations regarding the security and privacy of health data, while enabling broad use of health data to benefit society; started April 2018), and RD Connect – Rare diseases Connect (on building infrastructures for data sharing, aiming to create a unique infrastructure for rare disease research free to use by scientists and clinicians in Europe and around the world; 2012-2018; http://rd-connect.eu).
Deborah Mascalzoni designed and developed, together with IT experts, the Dynamic Consent Platform for the Cooperative Health Research in South Tyrol (CHRIS) study at Eurac Research, applied to more than 13.000 individuals since 2011 (https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-015-0704-9). Deborah has extensive experience in drafting policy documents and she is member of the code of conduct drafting group for BBMRI ERIC. She serves as advisor in different projects and is a member of different international and national advisory boards. Deborah Mascalzoni has experience in teaching (research ethics, bioethics) and supervision in Sweden and Italy.
She is leading the ELSI WP in the projects:
- Enlighten me https://www.enlightenme-project.eu
- OncoLogics https://www.digitallifenorway.org/research/druglogics/news/european-funding.html
- Governance of Data in Cyberspace https://www.nordforsk.org/projects/governance-health-data-cyberspace
- IMI facilitate