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.

This webinar will focus on how the CINECA project is applying FAIR (Findable, Accessible, Interoperable, Reusable) principles in practice. Enabling federated data discovery, data access, and research and analysis, by using open standards across the federated network, is crucial in order to fully exploit the potential of human cohorts to drive personalised medicine. CINECA is working in collaboration with other GA4GH driver projects developing and implementing the methods and infrastructure which will allow effective use of widely-dispersed data to improve the size and quality of datasets available for disease research.

The FAIR principles – standing for Findability, Accessibility, Interoperability, and Reusability – have become the guiding principles for the wider sharing of research data in the life sciences. While FAIR provides guidance for the management of data as well as tools and workflows, the institutional conditions and organizational challenges associated with data sharing need to be taken into account to ensure responsible and fair data practices. This requires considering the context of legal requirements, for instance the principle of fairness and transparency in GDPR, expectations of research participants/data subjects, societal aspects and the “ethics work” that is an integral part of data flows, as well as fairness, equity and benefit sharing within transnational collaborations, which is of utmost importance. This webinar will, from the perspective of ethical, legal and societal implications (ELSI), discuss this broader context of responsible and fair data sharing associated with FAIR.

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.