Date: 1 October 2020
Time: 4:00 pm CEST
Materials: Slides Status update code of conduct: teaming up & talking about it
Speaker: Michaela Th. Mayrhofer, BBMRI-ERIC
Contact: Marta Lloret Llinares
Overview
The CINECA webinar series continues with a presentation by Dr. Michaela Th. Mayrhofer (BBMRI-ERIC) on Status Update Code of Conduct: Teaming up & Talking about it.
Committed to the drafting of a Code of Conduct for the sector of health research according to Art. 40 GDPR, our initiative is advancing slowly but steadily. Throughout Europe, national jurisdictions differ to a great deal in their interpretations of the GDPR, especially in regard to its application in health research. This is due to some quite vague provisions (public interest, not incompatible clause) as wells as to numerous exemption/derogation clauses concerning the use of health data for research purposes, which encourage States to set up national rules – enhancing fragmentation. Notably, a Code of Conduct can help to bridge the harmonization gaps that may exist between Member States in their application of data protection law. On a practical level, a code is potentially a cost-effective method to achieve greater levels of consistency of protection as well as a mechanism to demonstrate compliance with the GDPR. By spring 2020, several hundred individuals representing around 90 organizations in the field of health research have indicated their interest and support for the Code of Conduct for Health Research. At this stage, this does not yet indicate an endorsement but means that they see a benefit in the development of such a code and are interested in partaking in the process. Additionally, several exchanges take place with national and sectoral codes in order to use synergies and finds ways for collaboration. This webinar is intended to inform you about the latest results.
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:
Michaela Th. Mayrhofer is a political scientist and historian by training. She was educated in Vienna, Louvain-la-Neuve, Essex and Paris. In 2010, she has earned her PhD from both the Ecole des Hautes Etudes en Sciences Sociales and the University of Vienna, which was shortlisted by the Austrian Society for Political Science for 'best thesis 2010'. Prior to her involvement in BBMRI-ERIC, she was investigator in several national and international research projects focusing on the politics of biotechnology and the life sciences, especially the governance of biobanks. Her academic career led to various positions at the Centre de Recherche Médecine, Sciences, Santé et Société, the University of Vienna, the Institute of Science, Technology and Society Studies at Alpen-Adria-Universität Klagenfurt/ Vienna/Graz, the Technical University of Vienna and the Medical University of Graz. Today, she serves as the Chief Policy and Coordination Officer of BBMRI-ERIC and coordinates the Code of Conduct for Health Research initiative.
About CINECA:
The CINECA (Common Infrastructure for National Cohorts in Europe, Canada, and Africa) project 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.