BBMRI.it, our Italian National Node, recently co-developed two key ELSI matrices for good practice in biobanking research. At the same time, an agreement with the Italian Research Ethics Committees on minimum requirements for an ethical review of biobank-based research was reached.
Both the agreement and the two ELSI matrices came about thanks to the effort made by various players, including Ricerc@, the National Ethics Committees Network, Uniamo F.I.M.R., the Rare Disease Italian Alliance, F.A.V.O, the Italian Federation of Cancer Associations, as well as researchers, ELSI experts, biobanks, ethics committees, research institutions, and a total 107 institutionally endorsed participants. Three national ELSI working groups were established as part of the process.
The outcomes of the initiative were discussed during the BBMRI.it National Day. Patient associations and research ethics committees in Italy are now ready to test the matrices in the field. Additionally, a roadmap for validation and dissemination was launched in 2018 and is due to involve BBMRI-ERIC.
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