Biobanks and Patient Representatives Together in a Participatory Process: From the BBMRI.it Informed Consent Matrix to the Informed Consent Model of TNGB-Fondazione Telethon Network of Genetic Biobanks.
INTRODUCTION Over the last decade, European Regulations have altered the landscape of the ethical, legal, and societal implications (ELSI). In 2017-2018, the BBMRI.it Common Service (CS) ELSI led two working groups on informed consent (IC) involving key biobanking stakeholders (i.e., patients, biobankers, research inst...