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.
Phone: +46 18 471 62 32
Recently in the media
- Solidarity, trust and the governance of data sharing during a public health emergency, BMJ Journal of Medical Ethics, 2021-05-12
- Selling Our Genes: Government inaction allowing private sector to take control of our DNA, The Journal.ie, 2020-10-04
- International Rare Diseases Research Consortium (IRDiRC) - The principles for sharing: BBMRI-ERIC Newsflash 2015-08-27
Rare disease research
RD-Connect is a 7th framework project that aims to build an integrated platform connecting registries, biobanks and clinical bioinformatics for rare disease research. We address the ethical, legal and social issues (ELSI).
Health data in cyber space
We are part of a Nordforsk funded project that develops recommendations for resilient governance mechanisms for cyberhealth.
ELSI-Service for BBMRI.se
We have run ELSI-Services for BBMRI.se (BioBanking and Molecular Resource Infrastructure of Sweden): a national effort for efficient and automated collection of biological material funded by the Swedish Research Council. Now replaced by Biobank Sweden.
Arthritis: Early treatment
The development of new therapeutic agents against Rheumatoid arthritis (RA) and RA-like diseases requires a dynamic interaction between studies in humans and in animal models of disease.
Citizen health in genomics
We are part of CHIP ME, a community of researchers and stakeholders to promote public-private initiatives in public health genomics.
Biobanks and registries in research
We aim for a biobank and registry management that satisfies ethical and legal demands from the research community, the public and the individual.
Arthritis risk communication
Euro-TEAM is a 7th framework programme aiming towards early diagnosis and biomarker validation in arthritis management. We are working with risk communication.
Appropriate Safeguards and Article 89 of the GDPR: Considerations for Biobank, Databank and Genetic Research
Part of Frontiers in Genetics, 2022.
Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries
Part of Genetics in Medicine, p. 1120-1129, 2022.
The RD-Connect Genome-Phenome Analysis Platform: Accelerating diagnosis, research, and gene discovery for rare diseases
Part of Human Mutation, p. 717-733, 2022.
Part of BMC Medical Ethics, 2022.
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.
Demonstrating trustworthiness when collecting and sharing genomic data: public views across 22 countries
Part of Genome Medicine, 2021.
Genetic and Metabolic Determinants of Atrial Fibrillation in a General Population Sample: The CHRIS Study
Part of Biomolecules, 2021.
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.
Part of Biopreservation and Biobanking, p. 483-492, 2021.
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.
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.