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个人简介
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 right 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 is author of more than 50 peer reviewed articles, several book chapters, and published a book. She obtained over 2.000.000 Euro in grant applications from both European and Italian funding bodies. Some of her funded projects are Cyberhealth (on cybersecurity in health research, aiming to develop recommendations for resilient governance mechanisms for health cyberspace that can meet social expectations regarding the security and privacy of health data, while enabling broad use of health data to benefit society; started April 2018), and RD Connect – Rare diseases Connect (on building infrastructures for data sharing, aiming to create a unique infrastructure for rare disease research free to use by scientists and clinicians in Europe and around the world; 2012-2018; http://rd-connect.eu).
Deborah Mascalzoni 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 14.000 individuals since 2011 (https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-015-0704-9).
Deborah has experience in drafting policy documents and she 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 has experience in teaching (research ethics, bioethics) and supervision in Sweden and Italy.
She is leading the WP ELSI in the projects:
• enlighten me https://www.enlightenme-project.eu
• OncoLogics https://www.digitallifenorway.org/research/druglogics/news/european-funding.html
• Governance of Data in Cyberspace https://www.nordforsk.org/projects/governance-health-data-cyberspace
. Protect move https://protect-move.de
https://orcid.org/ 0000-0003-4156-1464
https://scholar.google.com/citations?user=HgrVF2sAAAAJ&hl=it
https://www.law.ox.ac.uk/people/deborah-mascalzoni
研究兴趣
论文共 101 篇作者统计合作学者相似作者
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Mohamed S Sarhan, Giacomo Antonello,Hansi Weissensteiner, Claudia Mengoni,Deborah Mascalzoni, Levi Waldron,Nicola Segata,Christian Fuchsberger
Cellno. 10 (2025): 2561-2566
Rebecca Lundin,Roberto Melotti, Laura Barin, Martin Gögele,Stefano Lombardo, Antonio Fanolla, Paola Zuech,Johannes Rainer,David Emmert,Christian Fuchsberger,Deborah Mascalzoni,Alessandro De Grandi,Francisco S Domingues, Andrew A Hicks, Peter P Pramstaller,Cristian Pattaro
International journal of epidemiologyno. 3 (2025)
EUROPEAN JOURNAL OF HUMAN GENETICS (2024): 342-342
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Elena Ambrosino, Ahmad N Abou Tayoun,Marc Abramowicz,Bin Alwi Zilfalil,Tiffany Boughtwood,Yosr Hamdi,Tim Hubbard,Kazuto Kato, Iscia Lopes-Cendes,Partha Pratim Majumder,Deborah Mascalzoni,Rokhaya Ndiaye,Michèle Ramsay,Gabriela M Repetto,Vorasuk Shotelersuk,Sherry Taylor,John C Reeder, Anna Laura Ross
Nature medicineno. 10 (2024): 2711-2713
European Journal of Human Genetics (2024)
Frontiers in Medicine (2024)
Roberta Biasiotto,Jennifer Viberg Johansson,Melaku Birhanu Alemu,Virginia Romano,Heidi Beate Bentzen,Jane Kaye,Mirko Ancillotti,Johanna Maria Catharina Blom,Gauthier Chassang,Dara Hallinan, Guobjoerg Andrea Jonsdottir,Anibal Monasterio Astobiza,Emmanuelle Rial-Sebbag,David Rodriguez-Arias,Nisha Shah,Lea Skovgaard,Ciara Staunton,Katharina Tschigg,Jorien Veldwijk,Deborah Mascalzoni
Journal of Medical Internet Research (2023): e47066-e47066
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作者统计
#Papers: 101
#Citation: 3570
H-Index: 27
G-Index: 59
Sociability: 7
Diversity: 3
Activity: 19
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