Date: Friday 24 January 2020, 13:30 - 14:30 CET
Materials: Slides Ethical, legal and societal issues in international data sharing
Contact: Vera Matser
Overview
The CINECA webinar series continues with a presentation by Dr. Éloïse Gennet (INSERM) and Dr. Melanie Goisauf (BBMRI-ERIC) on Ethical, Legal and Societal Issues in international data sharing.
The goal of this webinar will be to present the first findings of the ELSI activities in the CINECA project, ranging from questions of ethics of data sharing across continents to legal basis of secondary processing of personal data, consent requirements and vulnerable groups or public and stakeholders’ attitudes toward sharing of genomic and health related data for research.
The CINECA webinar series aims to discuss ways to address common challenges and share best practices in the field of cohort data analysis, as well as distribute CINECA project results. All CINECA webinars include an audience Q&A session during which attendees can ask questions and make suggestions. Please note that all webinars are recorded and available for posterior viewing.
About the speaker:
Dr. Éloïse Gennet is currently working as a post-doc at the French national institute for health and biomedical research (INSERM). Outside of her own research, she is involved in two H2020 projects (CINECA and EASI-Genomics) and is a new member of the editorial committee of the International Journal of Bioethics. Trained in law, specialized in health law, Éloïse Gennet did an interdisciplinary and international PhD in law at the University of Aix-Marseille (France) and in bioethics at the University of Basel (Switzerland). She received the 2019 prize from the French Association of Health Law, the 2018 prize in law from Aix-Marseille University as well as the 2018 PhD prize in European law from the legal faculty of Aix-Marseille University for her PhD thesis entitled “Vulnerable people and clinical trials. Reflexions in European law”. She is thus specialized in the fields of health law, bioethics, European law clinical trials, research ethics as well as on the concept of vulnerability, in particular on the concept of “health vulnerability”. She is now steering her research interests towards innovative and data-driven technologies in public health research notably when in favour of vulnerable groups of patients.
Dr. Melanie Goisauf is a social scientist and serves as Research Officer at the European research infrastructure for biobanking BBMRI-ERIC. She is Visiting Researcher within the School of Geography, Politics and Sociology at Newcastle University and Lecturer at the Department of Science and Technology Studies at the University of Vienna. She studied Sociology at the University of Vienna and at Royal Holloway University of London, and completed the post-graduate programme „Sociology of Social Practice“ at the Institute for Advanced Studies (IHS) in Vienna. Melanie Goisauf holds a doctoral degree from the University of Vienna. Her dissertation was awarded the prize for best thesis in 2017 by the research network “Gender and Agency” of the University of Vienna. Her current research focuses on the ethical, legal and societal implications (ELSI) of biobanking and related questions of governance and data sharing. Her recent research activities include the implementation of public engagement events within the Austrian national node of BBMRI and of a Europe-wide survey to identify challenges arising from ethical and legal developments in the field of biobanking.
About CINECA:
This webinar introduces the CINECA (Common Infrastructure for National Cohorts in Europe, Canada, and Africa) project, which aims to develop a federated cloud enabled infrastructure to make population scale genomic and biomolecular data accessible across international borders, to accelerate research, and improve the health of individuals across continents. CINECA will leverage international investment in human cohort studies from Europe, Canada, and Africa to deliver a paradigm shift of federated research and clinical applications. The CINECA consortium will create one of the largest cross-continental implementations of human genetic and phenotypic data federation and interoperability with a focus on common (complex) disease, one of the world’s most significant health burdens. CINECA has assembled a virtual cohort of 1.4M individuals from population, longitudinal and disease studies. Federated analyses will deliver new scientific knowledge, harmonisation strategies and the necessary ELSI framework supporting data exchange across legal jurisdictions enabling federated analyses in the cloud. CINECA will provide a template to achieve virtual longitudinal and disease specific cohorts of millions of samples, to advance benefits to patients. It will leverage partner membership of standards and infrastructures like the Global Alliance for Global Health, BBMRI, ELIXIR, and EOSC driving the state of the art in standards development, technical implementation and FAIR data.