Centre for Research Ethics & Bioethics (CRB)

Deborah Mascalzoni

Deborah Mascalzoni

PhD Philosophy
Senior Researcher

Deborah Mascalzoni joined CRB in April 2013. She holds a PhD in Bioethics from the Faculty of Law at Bologna University and has worked extensively on ELSI issues related to biobank and registry research, especially the population based CHRIS project at the Center of Biomedicine, European Academy (EURAC).

Deborah Mascalzoni has been teaching ethics at the 'Claudiana' University of Roma in Bolzano. She is a member of the Ethical board of South Tyrol and the local health system ethical board of Bolzano as well as the Telethon Advisory Board. She is involved in the WIKI platform of BBMRI.IT, a member of the BRIF project and a member of the ethical group of the International Genetic Epidemiological Society (IGES). Her main research interests are genetics and new technologies, informed consent, patient communication, privacy & data sharing and the role of stakeholders in medicine.

Currently, Deborah Mascalzoni is working on rare diseases in RD-Connect and rheumatoid arthritis within Euro-TEAM and Be the Cure. She is also involved in BBMRI.se.

E-mail: deborah.mascalzoni@crb.uu.se
Phone: +46 18 471 62 32

Biobank and registry ethics & law

For many years, researchers at CRB have provided constructive advise on how to deal with ethical and legal aspects of research using human tissue material and personal data. We have collaborated with biomedical scientists and published our findings in peer reviewed journals. As a summary of this research we have compiled a list of publications with abstracts. We have grouped them thematically to help you find the ones you might be interested in reading. Our publications deal with ethical frameworks and policy, regulatory aspects of biobank and registry research, informed consent, ethical review, integrity concerns, trust, genetic testing, indicental findings, commercialization, public and patient perceptions, rare diseases, children & biobanks & genetics, and biobank studies.

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Biobank and registry ethics & law, report