Deborah Mascalzoni
Forskning om etik och policy för avancerade forskningsmetoder inom genetik och biomaterial med integrering av deltagarcentrerade metoder.
Deborah Mascalzoni är docent i biomedicinsk etik vid Uppsala Universitet och leder ELSI-forskningsgruppen vid IfB (Eurac Research, Italien). Hennes huvudsakliga forskningsintressen är de bredare konsekvenserna av genetik och ny teknik för mänskliga rättigheter, med fokus på sällsynta sjukdomar och utsatta grupper.
Deborah Mascalzoni är intresserad av etik och policy för avancerade forskningsmetoder inom genetik och biomaterial med integrering av deltagarcentrerade metoder. Hon har utsetts av WHO till ledamot i den tekniska rådgivande gruppen för genomik. Hon är fellow vid Helex Center i Oxford och har tidigare varit fellow vid Kennedy School of Government, Harvard.

Publikationer
Ethical framework for FACILITATE: a foundation for the return of clinical trial data to participants
Staunton, Ciara; Blom, Johanna M. C.; Mascalzoni, Deborah
Ingår i Frontiers in Medicine, 2024
- DOI för Ethical framework for FACILITATE: a foundation for the return of clinical trial data to participants
- Ladda ner fulltext (pdf) av Ethical framework for FACILITATE: a foundation for the return of clinical trial data to participants
Dynamic governance: A new era for consent for stem cell research
Isasi, Rosario; Bentzen, Heidi B.; Fabbri, Morris; Fuhr, Antonie et al.
Ingår i Stem Cell Reports, s. 1233-1241, 2024
- DOI för Dynamic governance: A new era for consent for stem cell research
- Ladda ner fulltext (pdf) av Dynamic governance: A new era for consent for stem cell research
Artificial Intelligence Needs Data: Challenges Accessing Italian Databases to Train AI
Staunton, Ciara; Biasiotto, Roberta; Tschigg, Katharina; Mascalzoni, Deborah
Ingår i Asian Bioethics Review, s. 423-435, 2024
- DOI för Artificial Intelligence Needs Data: Challenges Accessing Italian Databases to Train AI
- Ladda ner fulltext (pdf) av Artificial Intelligence Needs Data: Challenges Accessing Italian Databases to Train AI
Ethical and social reflections on the proposed European Health Data Space
Staunton, Ciara; Shabani, Mahsa; Mascalzoni, Deborah; Mezinska, Signe et al.
Ingår i European Journal of Human Genetics, s. 498-505, 2024
- DOI för Ethical and social reflections on the proposed European Health Data Space
- Ladda ner fulltext (pdf) av Ethical and social reflections on the proposed European Health Data Space
Biasiotto, Roberta; Viberg Johansson, Jennifer; Alemu, Melaku Birhanu; Romano, Virginia et al.
Ingår i Journal of Medical Internet Research, 2023
Blom, Johanna Maria Catharina; Benatti, Cristina; Mascalzoni, Deborah; Tascedda, Fabio et al.
Ingår i Frontiers in Psychiatry, 2023
- DOI för Editorial: Digital biomarkers in testing the safety and efficacy of new drugs in mental health: A collaborative effort of patients, clinicians, researchers, and regulators
- Ladda ner fulltext (pdf) av 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
Ingår i BMC Medical Informatics and Decision Making, 2023
- DOI för Precision cancer medicine and the doctor-patient relationship: a systematic review and narrative synthesis
- Ladda ner fulltext (pdf) av Precision cancer medicine and the doctor-patient relationship: a systematic review and narrative synthesis
International Genetic Testing and Counseling Practices for Parkinson's Disease.
Saunders-Pullman, Rachel; Raymond, Deborah; Ortega, Roberto A; Shalash, Ali et al.
Ingår i Movement Disorders, s. 1527-1535, 2023
Genetic Testing in Parkinson's Disease.
Pal, Gian; Cook, Lola; Schulze, Jeanine; Verbrugge, Jennifer et al.
Ingår i Movement Disorders, s. 1384-1396, 2023
Biasiotto, Roberta; Kösters, Maria; Tschigg, Katharina; Pramstaller, Peter P et al.
Ingår i European Journal of Human Genetics, s. 1218-1227, 2023
- DOI för Participant perspective on the recall-by-genotype research approach: a mixed-method embedded study with participants of the CHRIS study
- Ladda ner fulltext (pdf) av Participant perspective on the recall-by-genotype research approach: a mixed-method embedded study with participants of the CHRIS study
Italians locked down: people's responses to early COVID-19 pandemic public health measures
Romano, Virginia; Ancillotti, Mirko; Mascalzoni, Deborah; Biasiotto, Roberta
Ingår i Humanities and Social Sciences Communications, 2022
- DOI för Italians locked down: people's responses to early COVID-19 pandemic public health measures
- Ladda ner fulltext (pdf) av Italians locked down: people's responses to early COVID-19 pandemic public health measures
Pattaro, Cristian; Barbieri, Giulia; Foco, Luisa; Weichenberger, Christian X. et al.
Ingår i Pathogens and Global Health, s. 128-136, 2022
- DOI för Prospective epidemiological, molecular, and genetic characterization of a novel coronavirus disease in the Val Venosta/Vinschgau: the CHRIS COVID-19 study protocol
- Ladda ner fulltext (pdf) av Prospective epidemiological, molecular, and genetic characterization of a novel coronavirus disease in the Val Venosta/Vinschgau: the CHRIS COVID-19 study protocol
Milne, Richard; Morley, Katherine I.; Almarri, Mohamed A.; Atutornu, Jerome et al.
Ingår i Genetics in Medicine, s. 1120-1129, 2022
- DOI för Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries
- Ladda ner fulltext 1 (pdf) av Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries
- Ladda ner fulltext 2 (pdf) av Return of genomic results does not motivate intent to participate in research for all: Perspectives across 22 countries
Staunton, Ciara; Slokenberga, Santa; Parziale, Andrea; Mascalzoni, Deborah
Ingår i Frontiers in Genetics, 2022
- DOI för Appropriate Safeguards and Article 89 of the GDPR: Considerations for Biobank, Databank and Genetic Research
- Ladda ner fulltext (pdf) av Appropriate Safeguards and Article 89 of the GDPR: Considerations for Biobank, Databank and Genetic Research
Digital Biomarkers in Psychiatric Research: Data Protection Qualifications in a Complex Ecosystem
Parziale, Andrea; Mascalzoni, Deborah
Ingår i Frontiers in Psychiatry, 2022
- DOI för Digital Biomarkers in Psychiatric Research: Data Protection Qualifications in a Complex Ecosystem
- Ladda ner fulltext (pdf) av Digital Biomarkers in Psychiatric Research: Data Protection Qualifications in a Complex Ecosystem
What ethical approaches are used by scientists when sharing health data?: An interview study
Viberg, Jennifer; Bentzen, Heidi Beate; Mascalzoni, Deborah
Ingår i BMC Medical Ethics, 2022
- DOI för What ethical approaches are used by scientists when sharing health data?: An interview study
- Ladda ner fulltext (pdf) av What ethical approaches are used by scientists when sharing health data?: An interview study
Winkler, Thomas W.; Rasheed, Humaira; Teumer, Alexander; Gorski, Mathias et al.
Ingår i Communications Biology, 2022
- DOI för Differential and shared genetic effects on kidney function between diabetic and non-diabetic individuals
- Ladda ner fulltext (pdf) av Differential and shared genetic effects on kidney function between diabetic and non-diabetic individuals
Clinical relevance and translational impact of reduced penetrance in genetic movement disorders
Heinzel, Sebastian; Mascalzoni, Deborah; Bäumer, Tobias; Berg, Daniela et al.
Ingår i Medizinische Genetik, s. 151-156, 2022
- DOI för Clinical relevance and translational impact of reduced penetrance in genetic movement disorders
- Ladda ner fulltext (pdf) av Clinical relevance and translational impact of reduced penetrance in genetic movement disorders
Laurie, Steven; Piscia, Davide; Matalonga, Leslie; Corvo, Alberto et al.
Ingår i Human Mutation, s. 717-733, 2022
- DOI för The RD-Connect Genome-Phenome Analysis Platform: Accelerating diagnosis, research, and gene discovery for rare diseases
- Ladda ner fulltext (pdf) av The RD-Connect Genome-Phenome Analysis Platform: Accelerating diagnosis, research, and gene discovery for rare diseases
Tschigg, Katharina; Consoli, Luca; Biasiotto, Roberta; Mascalzoni, Deborah
Ingår i European Journal of Human Genetics, s. 1000-1010, 2022
- DOI för Ethical, legal and social/societal implications (ELSI) of recall-by-genotype (RbG) and genotype-driven-research (GDR) approaches: a scoping review
- Ladda ner fulltext (pdf) av 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.
Ingår i European Journal of Human Genetics, s. 1391-1397, 2022
- DOI för Ten years of dynamic consent in the CHRIS study: informed consent as a dynamic process
- Ladda ner fulltext (pdf) av Ten years of dynamic consent in the CHRIS study: informed consent as a dynamic process
Biasiotto, Roberta; Pramstaller, Peter P.; Mascalzoni, Deborah
Ingår i BIOLAW JOURNAL-RIVISTA DI BIODIRITTO, s. 277-287, 2021
- DOI för The dynamic consent of the Cooperative Health Research in South Tyrol (CHRIS) study: broad aim within specific oversight and communication
- Ladda ner fulltext (pdf) av The dynamic consent of the Cooperative Health Research in South Tyrol (CHRIS) study: broad aim within specific oversight and communication
Viberg, Jennifer; Shah, Nisha; Haraldsdóttir, Eik; Bentzen, Heidi Beate et al.
Ingår i Technology in society, s. 101625-101625, 2021
Law, Genetics and Genomics: An Unfolding Relationship
Tomasi, Marta; Penasa, Simone; Cozzi, Alessia-Ottavia; Mascalzoni, Deborah
Ingår i BioLaw Journal - Rivista di BioDiritto, s. 1-5, 2021
- DOI för Law, Genetics and Genomics: An Unfolding Relationship
- Ladda ner fulltext (pdf) av Law, Genetics and Genomics: An Unfolding Relationship
The commercial genetic testing landscape for Parkinson's disease
Cook, Lola; Schulze, Jeanine; Verbrugge, Jennifer; Beck, James C. et al.
Ingår i Parkinsonism & Related Disorders, s. 107-111, 2021
- DOI för The commercial genetic testing landscape for Parkinson's disease
- Ladda ner fulltext (pdf) av The commercial genetic testing landscape for Parkinson's disease
Projekt
Projekt vid andra lärosäten
Undervisning
- Biomedicinsk etik
- Bioetik
- Miljöetik
Doktorandhandledare
- Katharina Tschigg