The Independent Ethics Advisory Board (IEAB) will review all ethical aspects of the research activities carried out in the project and will particular advise on all aspects related to data sharing, patient rights and privacy. It is composed of a EURORDIS representative and two external experts for law and bioethics and ethics in next generation sequencing.
Roseline joined EURORDIS in February 2022 as Research Policy and Initiatives Director. Roseline brought a decade of experience in rare diseases, first as a consultant by setting up and managing EU-funded projects; then, at the French Foundation for Rare Diseases, where she supported clinicians and researchers by speeding up their rare diseases research projects.
Between 2019 and 2021, Roseline coordinated and developed MOOCs as part of the European Joint Programme on Rare Diseases (EJP RD). Roseline has an academic background (MA) in Social Sciences and Humanities in France and Canada. She first acted as a researcher in Geopolitics for public bodies and NGOs. She then moved to the international cooperation field through the development of a Euro-Mediterranean think tank and the coordination of research capacity programmes in sub-Saharan Africa.
Roseline specialised in the set-up, development and management of international projects and capacity-building programmes in Europe and worldwide. Through her experiences, she developed a good knowledge of EU public policies and funding schemes.
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, Deborah planned and developed the dynamic consent platform for the CHRIS study (2011-ongoing) at Eurac, applied to more than 13.000 participants.
Deborah is author/co-author of >30 articles, 40 conference papers, and six book chapters. She published a book on biobanks and law in the EU context. She obtained >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, Deborah has been teaching research ethics and bioethics in Sweden and Italy. She 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.
University Medical Center Utrecht, The Netherlands; Princess Máxima Center for Pediatric Oncology, The Netherlands
Roel is a postdoctoral researcher in medical ethics. His research is focused mainly on ethical issues in genetics and oncology. He wrote a PhD thesis on the ethically responsible introduction of next-generation sequencing in cancer care. . He is also a medical doctor and works as a practicing physician in the Netherlands. He holds a master’s degree in Applied Ethics (Philosophy).