Deborah Mascalzoni

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

Phone: +46 18 471 62 32

Recent publications

  • 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, 2020.

  • Mascalzoni, Deborah; Bentzen, Heidi Beate; Budin-Ljosne, Isabelle; Bygrave, Lee Andrew et al.

    Are Requirements to Deposit Data in Research Repositories Compatible With the European Union's General Data Protection Regulation?

    Part of Annals of Internal Medicine, p. 332-334, 2019.

  • Goisauf, Melanie; Martin, Gillian; Bentzen, Heidi Beate; Budin-Ljösne, Isabelle et al.

    Data in question: A survey of European biobank professionals on ethical, legal and societal challenges of biobank research

    Part of PLoS ONE, 2019.

    Open access
  • Motta, Benedetta M.; Grander, Christoph; Gogele, Martin; Foco, Luisa et al.

    Microbiota, type 2 diabetes and non-alcoholic fatty liver disease: protocol of an observational study

    Part of Journal of Translational Medicine, 2019.

    Open access
  • Staunton, Ciara; Slokenberga, Santa; Mascalzoni, Deborah

    The GDPR and the research exemption: considerations on the necessary safeguards for research biobanks

    Part of European Journal of Human Genetics, p. 1159-1167, 2019.

    Open access
  • Howard, Heidi Carmen; Mascalzoni, Deborah; Mabile, Laurence; Houeland, Gry et al.

    How to responsibly acknowledge research work in the era of big data and biobanks: ethical aspects of the Bioresource Research Impact Factor (BRIF).

    Part of Journal of Community Genetics, p. 169-176, 2018.

    Open access
  • Piciocchi, Cinzia; Ducato, Rossana; Martinelli, Lucia; Perra, Silvia et al.

    Legal issues in governing genetic biobanks: the Italian framework as a case study for the implications for citizen's health through public-private initiatives.

    Part of Journal of Community Genetics, p. 177-190, 2018.

    Open access
  • Gainotti, Sabina; Mascalzoni, Deborah; Bros-Facer, Virginie; Petrini, Carlo et al.

    Meeting Patients' Right to the Correct Diagnosis: Ongoing International Initiatives on Undiagnosed Rare Diseases and Ethical and Social Issues

    Part of International Journal of Environmental Research and Public Health, 2018.

    Open access
  • Kodra, Yllka; Weinbach, Jerome; Posada-de-la-Paz, Manuel; Coi, Alessio et al.

    Recommendations for Improving the Quality of Rare Disease Registries

    Part of International Journal of Environmental Research and Public Health, 2018.

    Open access
  • Borry, Pascal; Bentzen, Heidi Beate; Budin-Ljøsne, Isabelle; Cornel, Martina C et al.

    The challenges of the expanded availability of genomic information: an agenda-setting paper.

    Part of Journal of Community Genetics, p. 103-116, 2018.

    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