Deborah Mascalzoni

Deborah Mascalzoni

Deborah Mascalzoni

Associate Professor of Biomedical Ethics 

Deborah Mascalzoni is a researcher at CRB and research group leader of the ELSI group at the Institute for Biomedicine at Eurac Research in Bolzano, Italy. Her main research interests are genetics and new technologies including informed consent, rare diseases and vulnerable communities, participant and patient communication, privacy and data sharing. She has been working in projects focusing on research participant engagement, participant rights and dynamic consent.

Deborah Mascalzoni holds a PhD in Bioethics from the Faculty of Law at University of Bologna and has a comprehensive ELSI background. She has authored more than 50 peer reviewed articles, several book chapters, and also published a book. She obtained over 2,000,000 EUR in grant applications from both European and Italian funding bodies. Some of her funded projects are Cyberhealth, and RD Connect. She is also leading work on ethical, legal and social issues in the EU-funded projects ENLIGHTENme and OncoLogics

Deborah Mascalzoni also designed and developed, together with IT experts and scientists, the Dynamic Consent Platform for the Cooperative Health Research in South Tyrol (CHRIS) study at Eurac Research, applied to more than 13.000 individuals since 2011. She has extensive experience in drafting policy documents and is member of the code of conduct drafting group for BBMRI ERIC. She serves as advisor in different projects and is a member of different international and national advisory boards. Deborah Mascalzoni also has experience in teaching (research ethics, bioethics) and supervision in Sweden as well as Italy.

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

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Recent publications

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.

Download our biobank and registry report

Biobank and registry ethics & law, report cover
Last modified: 2023-09-29