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.
Siobhán is a lecturer in Medical Ethics and Law at the Royal College of Surgeons of Ireland. She is also Chief Bioethics Officer at the Department of Health and is responsible for providing advice on policy and legislative instruments on bioethics related issues. From 2002-2010, Siobhán was Director of the Irish Council for Bioethics an independent, autonomous body to consider the ethical issues raised by developments in science and medicine. She is Vice-Chair of the European Group on Ethics in Science & New Technologies, an independent, multidisciplinary body advising the European Commission in connection with Community legislation or policies. She is the Irish delegate to the Committee on Bioethics in the Council of Europe. Siobhán received her Doctorate of Medicine from Karolinska Institutet, Stockholm in 1998. She holds a Masters in HealthCare Ethics in Law and a Diploma in Leadership and a Masters in Human Rights Law.
Roel works in research as a medical ethicist at the Department of Medical Humanities, Julius Center, University Medical Center Utrecht, The Netherlands. His research is focused on ethical issues in genetics and oncology. He is currently finishing his PhD thesis on the ethics of personalized oncology, in which he studies the ethically responsible introduction of next-generation sequencing in cancer care and research. He is a Medical Doctor by training and also hold a master’s degree in Applied Ethics (Philosophy).