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.
Virginie joined EURORDIS in 2015 as Research Infrastructure Project Manager, later becoming Scientific Director. Her responsibilities include managing all EURORDIS activities related to infrastructures and technologies facilitating rare disease research such as patient registries, biobanks, clinical bioinformatics and next generation sequencing as well as ethical issues surrounding this pre-clinical research.
Prior to joining EURORDIS, Virginie worked for several research funding organisations in the UK, including as Director of Medical Research for Sparks, a children's medical research charity based in London.
Virginie holds an MSc and a PhD in Neuroscience from King's College London and also worked at the UCL Institute of Neurology on several research projects aiming to develop new therapeutic strategies for motor neuron disease and other neuromuscular disorders.
Virginie has a niece with a rare form of CDG syndrome and has recently moved back to France after spending 16 years in the UK.
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).