A conceptualisation of a governance model for biobanks in the digital society

Iacomussi, Sofia (2022) A conceptualisation of a governance model for biobanks in the digital society, [Dissertation thesis], Alma Mater Studiorum Università di Bologna. Dottorato di ricerca in Law, science and technology, 34 Ciclo. DOI 10.48676/unibo/amsdottorato/10458.
Documenti full-text disponibili:
[img] Documento PDF (English) - Richiede un lettore di PDF come Xpdf o Adobe Acrobat Reader
Disponibile con Licenza: Salvo eventuali più ampie autorizzazioni dell'autore, la tesi può essere liberamente consultata e può essere effettuato il salvataggio e la stampa di una copia per fini strettamente personali di studio, di ricerca e di insegnamento, con espresso divieto di qualunque utilizzo direttamente o indirettamente commerciale. Ogni altro diritto sul materiale è riservato.
Download (1MB)


Biobanks are key infrastructures in data-driven biomedical research. The counterpoint of this optimistic vision is the reality of biobank governance, which must address various ethical, legal and social issues, especially in terms of open consent, privacy and secondary uses which, if not sufficiently resolved, may undermine participants’ and society’s trust in biobanking. The effect of the digital paradigm on biomedical research has only accentuated these issues by adding new pressure for the data protection of biobank participants against the risks of covert discrimination, abuse of power against individuals and groups, and critical commercial uses. Moreover, the traditional research-ethics framework has been unable to keep pace with the transformative developments of the digital era, and has proven inadequate in protecting biobank participants and providing guidance for ethical practices. To this must be added the challenge of an increased tendency towards exploitation and the commercialisation of personal data in the field of biomedical research, which may undermine the altruistic and solidaristic values associated with biobank participation and risk losing alignment with societal interests in biobanking. My research critically analyses, from a bioethical perspective, the challenges and the goals of biobank governance in data-driven biomedical research in order to understand the conditions for the implementation of a governance model that can foster biomedical research and innovation, while ensuring adequate protection for biobank participants and an alignment of biobank procedures and policies with society’s interests and expectations. The main outcome is a conceptualisation of a socially-oriented and participatory model of biobanks by proposing a new ethical framework that relies on the principles of transparency, data protection and participation to tackle the key challenges of biobanks in the digital age and that is well-suited to foster these goals.

Tipologia del documento
Tesi di dottorato
Iacomussi, Sofia
Dottorato di ricerca
Settore disciplinare
Settore concorsuale
Parole chiave
Biobanks, Ethics, Governance, Human biological samples, Biomedical big data, data-driven biomedical research, Reserach ethics, Transparency, Data protection, Participation..
Data di discussione
15 Settembre 2022

Altri metadati

Statistica sui download

Gestione del documento: Visualizza la tesi