Deborah Mascalzoni

Deborah Mascalzoni

Deborah Mascalzoni

PhD Philosophy
Senior Researcher

Deborah Mascalzoni is senior 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

  • Mascalzoni, Deborah; Biasiotto, Roberta; Borsche, Max; Brüggemann, Norbert et al.

    Balancing scientific interests and the rights of participants in designing a recall by genotype study

    Part of European Journal of Human Genetics, p. 1146-1157, 2021.

    Open access
  • Milne, Richard; Morley, Katherine I.; Almarri, Mohamed A.; Anwer, Shamim et al.

    Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries

    Part of Genome Medicine, 2021.

    Open access
  • Emmert, David B.; Vukovic, Vladimir; Dordevic, Nikola; Weichenberger, Christian X. et al.

    Genetic and Metabolic Determinants of Atrial Fibrillation in a General Population Sample: The CHRIS Study

    Part of Biomolecules, 2021.

    Open access
  • Viberg, Jennifer; Shah, Nisha; Haraldsdóttir, Eik; Bentzen, Heidi Beate et al.

    Governance mechanisms for sharing of health data: An approach towards selecting attributes for complex discrete choice experiment studies

    Part of Technology in society, p. 101625-101625, 2021.

    Open access
  • Shah, N.; Viberg Johansson, Jennifer; Haraldsdóttir, E.; Bentzen, H.B. et al.

    Governing health data across changing contexts: A focus group study of citizen’s views in England, Iceland, and Sweden

    Part of International Journal of Medical Informatics, 2021.

    Open access
  • Melotti, Roberto; Scaggiante, Federica; Falciani, Michela; Weichenberger, Christian X. et al.

    Prevalence and determinants of serum antibodies to SARS-CoV-2 in the general population of the Gardena valley

    Part of Epidemiology and Infection, 2021.

    Open access
  • Prasuhn, Jannik; Borsche, Max; Hicks, Andrew A.; Goegele, Martin et al.

    Task matters-challenging the motor system allows distinguishing unaffected Parkin mutation carriers from mutation-free controls

    Part of Parkinsonism & Related Disorders, p. 101-104, 2021.

  • Biasiotto, Roberta; Pramstaller, Peter P.; Mascalzoni, Deborah

    The dynamic consent of the Cooperative Health Research in South Tyrol (CHRIS) study: broad aim within specific oversight and communication

    Part of BIOLAW JOURNAL-RIVISTA DI BIODIRITTO, p. 277-287, 2021.

    Open access
  • Middleton, Anna; Milne, Richard; Almarri, Mohamed A; Anwer, Shamim et al.

    Global Public Perceptions of Genomic Data Sharing: What Shapes the Willingness to Donate DNA and Health Data?

    Part of American Journal of Human Genetics, p. 743-752, 2020.

    Open access
  • Rubinstein, Yaffa R.; Robinson, Peter N.; Gahl, William A.; Avillach, Paul et al.

    The case for open science: rare diseases

    Part of JAMIA Open, p. 472-486, 2020.

    Open access

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: 2021-12-03