In what will be a special year for infrastructure consolidation due to the implementation throughout Europe of two regulations defining a new framework for research and biobanking, bbmri.it has been working on addressing existing challenges as well as issues related to ELSI, quality and interoperability across-the-board, employing a participatory approach.
Starting in early April, six national working groups will be operational, following a busy schedule until November 2017 to work on the following issues:
How to promote and ensure public information, awareness in a perspective of public engagement?
How to modulate the information on biobanking and research, starting from the need of the individual and of the community they belong to?
How to evaluate a biobanking protocol with competence and method?
How to harmonize the activities of research ethics committees?
How to co-build and share the requirements of good practice for biobanking?
How to harmonise procedures and protocols of a large community of biobankers in order to guarantee interoperability and shared (homogeneous) quality?
Each group includes 30 participants, institutionally delegated, and representative of the heterogeneity of Italian regional systems, of the the different types of biobanks, as well as first and second degree patient associations.
In particular, biobankers, representatives of patients, research ethics committees and research institutions, ELSI experts, will work in peer groups, keeping in mind the current debate and taking into account existing practices, for:
a good practice of informed consent with RD patients,
a good practice of informed consent with Cancer patients,
a good practice of ethical evaluation of biobanking,
shared biobank management procedures and technical protocols,
improved interoperability within the National infrastructure.
On the BBMRI.it web page, everyone will be able to follow the work in progress. The outcomes of each working group will be shared on the bbmri.it National Day at the end of November 2017.