#EBW24 previews: Chairs for panel session ‘Citizen & Patient Involvement: Emerging best practices?’
We are pleased to confirm the chairs for the panel session ‘Citizen & Patient Involvement: Emerging best practices?’: Dr. Ciara Staunton from the Institute for Biomedicine, Eurac Research and Dr. Eric Vermeulen, chair of the BBMRI.ERIC Stakeholder Forum Patient and Citizens Pillar. The session takes place on Thursday 16 May 2024 as part of the EBW24 programme.
Dr. Ciara Staunton
Dr. Ciara Staunton is a Senior Researcher at the Institute for Biomedicine, Eurac Research (Italy) and a Consultant to the WHO on WHO principles for human genomic data sharing. In addition she is an Honorary Research Fellow at the University of Kwazulu-Natal. Her research focuses on the governance of new and emerging technologies, in particular stem cell research, genomic research and biobanking, and the use of health data in research. Ciara is currently a consultant to many global health institutions as the NICD. She is a member of a number of international advisory boards providing ethico-legal oversight on these topics and is a member of the National Irish COVID-19 Biobank – Research Ethics Committee (NICB-REC).
Ciara has been in receipt of grants from the Wellcome Trust, the National Institutes of Health (NIH) and the Irish Research Council. She has been involved in the development of policy in Ireland, Bahrain and Africa and in 2021 led the development of the Framework for the Governance of Personal Data for the Access to COVID-19 Tools Accelerator.
From 2010-2013 she was a post-doctorate researcher at the Centre for Medical Ethics and Law, Stellenbosch University. During this time, she co-ordinated the Advancing Research Ethics in Southern Africa (ARESA) Program and was a member of the H3Africa Ethics and Regulatory Issues Working Group. She obtained her PhD from NUI, Galway for her thesis The Regulation of Stem Cell Research in Ireland.
Prior to starting her academic career, Ciara was a Legal Researcher at the Law Reform Commission of Ireland.
Dr. Eric Vermeulen
Dr. Eric Vermeulen is chair of the BBMRI.ERIC Stakeholder Forum Patient and Citizens Pillar. He is advisor patient engagement for PostCovid NL, a Dutch patient association for patients with Long Covid.
He is a nurse and sociologist by training. As a nurse he worked in a neonatal ward. As sociologist he wrote a dissertation on neonatal decision making in two European countries. In later research he investigated patient opinions on research with residual tissues and consent regimes for this research.
Since 2017 he is member of the Stakeholder Forum on behalf of the Dutch association for rare and genetic diseases and Health RI. He is chair of the Health RI ‘Public and Patient Advisory Committee’.
Eric is also member of the Dutch Central Committee on Research Involving Human Subjects as an ‘Assessor specifically from the perspective of the human subject’.