Title of Presentation
Towards a collaborative biobanks: patients & citizens participation as an infrastructural key process
Date and Place
Session: Plenary B1
A clinical bioethicist by training but a practical philosopher by imprinting, very fond of participatory approaches & deliberative methods, from the very beginning she has understood bioethics as a process of democratization of scientific knowledge and citizens engagement. She studied in Milan, Paris, Siena, London and Madrid developing together with patients, professionals, institutions, inclusive models for a participatory medicine and a collaborative biomedical research. After her “Magister in Bioética Clinica” and her first PhD on “Ethical deliberation and good clinical practice” earned from both the Universidad Complutense – Madrid and the Siena University, she was twice nationally awarded for her participatory research in action.
At the forefront with Eurordis, UNIAMO F.I.M.R. onlus and many patients Organizations, she directs national projects dealing with ELSI issues of advanced research, with particular attention to biobanking, biomolecular fields, genetic/cellular therapies (included no validated therapies due to the Italian Stamina case). In 2013-2014 thanks to the national program “Determinazione Rara” funded by Social Policy Minister, she has pioneered an innovative systemic empowerment focusing on collaborative science and inclusion as key factor.
Coordinator in drafting National guidelines on biobanking and on informed consent governance. As member of many IRBs/Advisory Boards as well as President of Milano-Bicocca University Research Ethical Committee has a privileged observatory on frontiers issues of Scientific Ethics.
A collaborative biobanking plays an increasingly recognized role as the key infrastructure of precision medicine, through collecting and analysing global data.
It seems a century has elapsed since Eurobarometer 2010 described, besides a very low awareness, a very heterogeneous attitude among European citizens with respect to biobanking, pointing out a strong difference between Northern Countries and Central and Southern ones. The role of citizens and of patients in biobanking have been changing from being seen merely as viewers and/or donors, to concrete collaborators in the improvement and governance of biobanks.
Not just because biobanks need involvement and engagement to consolidate a good practice for a large scale research and to avoid the risk of withdraw of participants; patients themselves are pushing for a quality biobanking, being increasingly aware of its close relationship with personalized diagnosis and therapy. It emerges more and more participation as a two-way process. Analysing some European key-contexts of patients and citizens acting as partners at the heart of biobanking, with particular attention to genetic, oncological and cohorts experiences, we intend to outline the actual state of the art from a bottom up perspective, to better understand the decision-making to participate and the valuable resource that participation is for a biobank. We aim to highlight the cross requirements of good practice of engagement in biobanking as well as the dynamic lessons learned both from the patients/citizens and the different professionals involved.