Date: October 29, 2021
Time: 14:00-16:00 CEST / 08:00-10:00 EDT
Location: Online
Host: EUCAN ELSI Collaboratory
Contact: Anna-Lena Guske, Erika Granath, Marta Lloret Llinares
Overview
The seven projects making up the EUCAN ELSI Collaboratory (EUCANCan, euCanSHare, CINECA, iReceptor Plus, EUCAN-Connect, ReCoD-ID, and EuCanImage) will host a joint webinar about how fostering stakeholder engagement can improve transparency and accountability in international sharing of health data.
The two-hour webinar will consist of two parts. The first part will include four 15-minute presentations and conclude with a Q&A. The second part will be dedicated to horizon scanning, providing a space for researchers in the EUCAN ELSI projects to discuss a wide verity of themes concerning the future of international data sharing, including ongoing barriers to be remover; future research that needs to be conducted; and affirmation of certain already existing frameworks.
The event is free of charge and open to everyone interested in learning more about international data sharing in the health research space and beyond.
Agenda
14:00-14:05 CEST / 8:00-8.05 EDT
Welcome and introductions
14:05-15:10 CEST / 8:05-9.10 EDT
Session 1: Making international data sharing work: lessons learnt from the EUCAN ELSI Collaboratory
Chair: Pilar Nicolas
The first part of the webinar will include four 15-minute presentations:
Interoperable data governance
Speaker: Alexander BernierLessons from the euCanSHare consortium: Incentives for Data Sharing
Speakers: Thijs DevriendtCOVID-19 data sharing: Broad consent for future data use
Speaker: Lauren MaxwellA focus on the S in ELSI: societal engagement and social aspects of data sharing
Speaker: Michaela Mayrhofer
15:10-16:00 CEST / 9:10-10.00 EDT
Session 2: Horizon scanning: Recommendations for data sharing in the future
Chair: Bartha Knoppers
The second part of the webinar attempts to provide a glimpse into what the future holds for international data sharing. Members of the EUCAN ELSI projects will discuss identified challenges to sharing health data within and between institutions and research centres and explore possible solutions.
About the speakers
Pilar Nicolás Jiménez, PhD in Law. Senior research fellow (Public Law Department. Faculty of Law. Research Group: Chair in Law and the Human Genome. University of the Basque Country, Spain.). Teaching: Criminal Law (graduate level) and Biolaw (postgraduate level). Her research interest field (in publications and projects) is biolaw in general and, in particular: health and genetic data protection, patient’s rights, biobanks, personalized medicine, artificial intelligent or cross border health care. Among other institutions or committees, she is member of the Research Ethics Committee of the Instituto de Salud Carlos III (Ministry of Science and Innovation. Spain), of the Ethics, Policy and Governance Working Group of the ICGC Argo and of the ELSI group in the European '1+ Million Genomes' Initiative. She has collaborated with the Spanish Ministry of Science and Innovation in the preparation of biomedical legislation.
Bartha Maria Knoppers, PhD, Full Professor, Canada Research Chair in Law and Medicine. Director, Centre of Genomics and Policy, McGill University. Holds four Doctorates Honoris Causa. Fellow of the AAAS, the Hastings Center (bioethics), the CAHS, and the RSC. Officer, Order of Canada and Quebec.
Awarded, Henry G. Friesen International Prize in Health Research (2019), the Till and McCulloch Award for science policy (2020) and Lifetime Bioethics Achievement Award (CBS) (2021). Serves, Canada’s Vaccine Task Force, Health Data Strategy Expert Advisory Group, CanCOGen’s HostSeq project and the COVID Cloud (DNAstack). Co-PI:EuCanCan and EuCanShare.
Alexander Bernier, J.D., LL.M., is an Academic Associate at the Centre of Genomics and Policy, situated at McGill University. In this capacity, he coordinates the ethico-legal workpackages of select international health research consortia, including the Human Cell Atlas, EUCANCan and Canada’s national COVID-19 Immunity Task Force. Alexander is a doctoral candidate at the University of Toronto Faculty of Law, where he performs research on the intersection of law, open science, and infrastructure for data-driven health research.
Thijs Devriendt completed a Master in the Biomedical Sciences (KU Leuven, 2018). Between 2017-2018, Thijs worked on several ethical issues within the field of anti-doping research, such as usage of samples coming from sports drug testing, enrolling human subjects in research, and access of athletes to the Athlete Biological Passport (ABP) data. Thijs started his PhD “Data Sharing in Biomedical Sciences: The Impact of Incentive Policies and Data Governance Models” at KU Leuven, Belgium, in April 2019 under the supervision of Prof. Pascal Borry.
Lauren Maxwell: is a quantitative epidemiologist based at Universitätsklinikum Heidelberg’s Heidelberger Institut für Global Health. She works on addressing statistical and political, ethical, administrative, regulatory, and legal (PEARL) issues in the reuse of longitudinal, participant-level data from surveillance systems, electronic medical records, and observational and intervention research. She leads or co-leads the ethics- and data management-related work packages for the HORIZON 2020-funded Reconciliation of Cohort Data for Infectious Diseases (ReCoDID) and European Clinical Research Alliance for Infectious Diseases (ECRAID) projects. Her current work focuses on exploiting synergies in COVID-19-related data sharing efforts through improving platforms’ and registries’ adherence to the FAIR principles for data resources.
Dr. Michaela Th. Mayrhofer is a social scientist by training educated in Vienna, Louvain-la-Neuve, Essex and Paris. In 2010, she received her PhD from both the Ecole des Hautes Etudes en Sciences Sociales and the University of Vienna. The thesis was shortlisted by the Austrian Society for Political Science for the ‘best thesis 2010’ young scientist award. Her academic career led her to various to the Centre de Recherche Médecine, Sciences, Santé et Société, the University of Vienna, the Institute of Technology and Society Studies at the Alpen-Adria-Universität Klagenfurt/Vienna/Graz, the Technical University of Vienna, the Fondation Brocher and the Medical University of Graz. She was involved in the coordination of the BBMRI Preparatory Phase (2008-2013) and is experienced in the management of national and international research projects. Recent research Fellowships comprise the Alpen-Adria-Universität Klagenfurt and the University of Newcastle. She was member of the editorial staff of the Austrian Journal of Political Science (2013-2017). Since 2018, she leads the Code of Conduct for Health Research initiative, which aims at developing a code along article 40 of the EU GDPR, considering the specific features of processing personal data in health research. Since 2019, she is Head of ELSI Services & Research of BBMRI-ERIC. From February to August 2020, she took on the role as Interim Co-Director General of BBMRI-ERIC. She serves in several (S)EABs, most notably as chair of the Human Brain Project’s EAB. Trained in qualitative methodology and science and technology studies, her current research focus lies on the governance of the life sciences and the ethics of AI.
About the EUCAN ELSI Collaboratory
The EUCAN ELSI Collaboratory is a cross-project collaboration consisting of seven Horizon 2020-funded research projects, EUCANCan, euCanSHare, CINECA, iReceptor Plus, EUCAN-Connect, ReCoD-ID, and EuCanImage. The Collaboratory offers a platform for people who work with Ethical, Legal and Social Implications (ELSI) issues in one or several of the projects to exchange knowledge and discuss topics of common interest. Participants in the EUCAN ELSI Collaboratory meet on a bi-monthly basis to share the output of their work and build consensus regarding best practices for data sharing in compliance with ethics and the law.