Deborah Mascalzoni
Research about ethics and policy for advanced research approaches in genetics and biomaterials with the integration of participant-centric approaches.
Deborah Mascalzoni is an Associate Professor in Biomedical Ethics at Uppsala University and leads the ELSI Research Group at the IfB (Eurac Research, Italy). Her main research interests are the broader human rights implications of genetics and new technologies, with a focus on rare diseases and vulnerable communities.
Deborah Mascalzoni is interested in ethics and policy for advanced research approaches in genetics and biomaterials with the integration of participants centric approaches. She has been appointed by WHO for the Technical Advisory Group on Genomics. She is fellow of the Helex Center in Oxford and past fellow at the Kennedy School of Government, Harvard.
Publications
Mascalzoni, Deborah; Kösters, Maria; Tschigg, Katharina; Pramstaller, Peter P et al.
Part of European Journal of Human Genetics, 2023
Genetic Testing in Parkinson's Disease.
Pal, Gian; Cook, Lola; Schulze, Jeanine; Verbrugge, Jennifer et al.
Part of Movement Disorders, p. 1384-1396, 2023
International Genetic Testing and Counseling Practices for Parkinson's Disease.
Saunders-Pullman, Rachel; Raymond, Deborah; Ortega, Roberto A; Shalash, Ali et al.
Part of Movement Disorders, p. 1527-1535, 2023
Biasiotto, Roberta; Viberg Johansson, Jennifer; Alemu, Melaku Birhanu; Romano, Virginia et al.
Part of Journal of Medical Internet Research, 2023
Blom, Johanna Maria Catharina; Benatti, Cristina; Mascalzoni, Deborah; Tascedda, Fabio et al.
Part of Frontiers in Psychiatry, 2023
- DOI for Editorial: Digital biomarkers in testing the safety and efficacy of new drugs in mental health: A collaborative effort of patients, clinicians, researchers, and regulators
- Download full text (pdf) of Editorial: Digital biomarkers in testing the safety and efficacy of new drugs in mental health: A collaborative effort of patients, clinicians, researchers, and regulators
Grauman, Åsa; Ancillotti, Mirko; Veldwijk, Jorien; Mascalzoni, Deborah
Part of BMC Medical Informatics and Decision Making, 2023
Winkler, Thomas W.; Rasheed, Humaira; Teumer, Alexander; Gorski, Mathias et al.
Part of Communications Biology, 2022
Clinical relevance and translational impact of reduced penetrance in genetic movement disorders
Heinzel, Sebastian; Mascalzoni, Deborah; Bäumer, Tobias; Berg, Daniela et al.
Part of Medizinische Genetik, p. 151-156, 2022
Italians locked down: people's responses to early COVID-19 pandemic public health measures
Romano, Virginia; Ancillotti, Mirko; Mascalzoni, Deborah; Biasiotto, Roberta
Part of Humanities and Social Sciences Communications, 2022
Tschigg, Katharina; Consoli, Luca; Biasiotto, Roberta; Mascalzoni, Deborah
Part of European Journal of Human Genetics, p. 1000-1010, 2022
- DOI for Ethical, legal and social/societal implications (ELSI) of recall-by-genotype (RbG) and genotype-driven-research (GDR) approaches: a scoping review
- Download full text (pdf) of Ethical, legal and social/societal implications (ELSI) of recall-by-genotype (RbG) and genotype-driven-research (GDR) approaches: a scoping review
Ten years of dynamic consent in the CHRIS study: informed consent as a dynamic process
Mascalzoni, Deborah; Melotti, Roberto; Pattaro, Cristian; Pramstaller, Peter Paul et al.
Part of European Journal of Human Genetics, p. 1391-1397, 2022
Pattaro, Cristian; Barbieri, Giulia; Foco, Luisa; Weichenberger, Christian X. et al.
Part of Pathogens and Global Health, p. 128-136, 2022
- DOI for Prospective epidemiological, molecular, and genetic characterization of a novel coronavirus disease in the Val Venosta/Vinschgau: the CHRIS COVID-19 study protocol
- Download full text (pdf) of Prospective epidemiological, molecular, and genetic characterization of a novel coronavirus disease in the Val Venosta/Vinschgau: the CHRIS COVID-19 study protocol
What ethical approaches are used by scientists when sharing health data?: An interview study
Viberg, Jennifer; Bentzen, Heidi Beate; Mascalzoni, Deborah
Part of BMC Medical Ethics, 2022
Milne, Richard; Morley, Katherine I.; Almarri, Mohamed A.; Atutornu, Jerome et al.
Part of Genetics in Medicine, p. 1120-1129, 2022
- DOI for Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries
- Download full text 1 (pdf) of Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries
- Download full text 2 (pdf) of Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries
Laurie, Steven; Piscia, Davide; Matalonga, Leslie; Corvo, Alberto et al.
Part of Human Mutation, p. 717-733, 2022
Staunton, Ciara; Slokenberga, Santa; Parziale, Andrea; Mascalzoni, Deborah
Part of Frontiers in Genetics, 2022
Digital Biomarkers in Psychiatric Research: Data Protection Qualifications in a Complex Ecosystem
Parziale, Andrea; Mascalzoni, Deborah
Part of Frontiers in Psychiatry, 2022
Biasiotto, Roberta; Pramstaller, Peter P.; Mascalzoni, Deborah
Part of BIOLAW JOURNAL-RIVISTA DI BIODIRITTO, p. 277-287, 2021
- DOI for The dynamic consent of the Cooperative Health Research in South Tyrol (CHRIS) study: broad aim within specific oversight and communication
- Download full text (pdf) of The dynamic consent of the Cooperative Health Research in South Tyrol (CHRIS) study: broad aim within specific oversight and communication
Milne, Richard; Morley, Katherine I.; Almarri, Mohamed A.; Anwer, Shamim et al.
Part of Genome Medicine, 2021
Viberg, Jennifer; Shah, Nisha; Haraldsdóttir, Eik; Bentzen, Heidi Beate et al.
Part of Technology in society, p. 101625-101625, 2021
Law, Genetics and Genomics: An Unfolding Relationship
Tomasi, Marta; Penasa, Simone; Cozzi, Alessia-Ottavia; Mascalzoni, Deborah
Part of BioLaw Journal - Rivista di BioDiritto, p. 1-5, 2021
Romano, Virginia; Milne, Richard; Mascalzoni, Deborah
Part of Wellcome Open Research, 2021
The commercial genetic testing landscape for Parkinson's disease
Cook, Lola; Schulze, Jeanine; Verbrugge, Jennifer; Beck, James C. et al.
Part of Parkinsonism & Related Disorders, p. 107-111, 2021
Preferences of the Public for Sharing Health Data: Discrete Choice Experiment
Viberg Johansson, Jennifer; Bentzen, Heidi Beate; Shah, Nisha; Haraldsdóttir, Eik et al.
Part of JMIR Medical Informatics, 2021
Melotti, Roberto; Scaggiante, Federica; Falciani, Michela; Weichenberger, Christian X. et al.
Part of Epidemiology and Infection, 2021
Projects
Projects outside Uppsala University
Teaching
- Biomedical ethics
- Bioethics
- Environmental ethics
PhD-supervision
Katharina Tschigg