– National ELS working group “Access and sharing. For the best practice of sharing, from data to results

Based on a participatory approach, it is the alive infrastructure of the Italian Common Service ELSI, designing dynamically, through the co-produced process, the ELS sharing challenges to face. In 2017-2018, working on informed consent process as a good practice, two critical issues remained open: an effective sharing of data/samples and the access governance, inclusive of patient/citizens representatives. And these were the pillars of the current national ELS group “Access and sharing. For the best practice of sharing, from data to results”.

Meanwhile, the hardcore is the assumption and the implementation of data/samples/results sharing as the driving force and purpose both of biobanking and of research infrastructures. This process is possible within a shared ELSI/FAIR horizon in which everyone has a decisive role, institutions, biobanks, ethical committees as guarantors, researchers using and returning results to patients, citizens and their representatives, who through the provision of data/samples are partners throughout the process.

Within a co-production process, we plan as deliverables: a DTA/MAT and a guideline for sharing, pooling together governance models, ELS requirements and best practices. The work is going on.