Independent Ethics Advisory Board

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 Bros-Facer

EURORDIS

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.

Deborah Mascalzoni

Uppsala University, Sweden and EURAC Research Bolzano, Italy

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.

Roel Wouters

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).

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