Digital Biomarkers in Psychiatric Research: Data Protection Qualifications in a Complex Ecosystem

por Parziale, Andrea, Mascalzoni, Deborah
Publicado 2022

Rare disease research: Breaking the privacy barrier

por Mascalzoni, Deborah, Paradiso, Angelo, Hansson, Matts
Publicado 2014

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

por Staunton, Ciara, Slokenberga, Santa, Mascalzoni, Deborah
Publicado 2019

Italian public’s views on sharing genetic information and medical information: findings from the ‘Your DNA, Your Say’ study

por Romano, Virginia, Milne, Richard, Mascalzoni, Deborah
Publicado 2021

Informed Consent in the Genomics Era

por Mascalzoni, Deborah, Hicks, Andrew, Pramstaller, Peter, Wjst, Matthias
Publicado 2008

Appropriate Safeguards and Article 89 of the GDPR: Considerations for Biobank, Databank and Genetic Research

por Staunton, Ciara, Slokenberga, Santa, Parziale, Andrea, Mascalzoni, Deborah
Publicado 2022

What ethical approaches are used by scientists when sharing health data? An interview study

por Viberg Johansson, Jennifer, Bentzen, Heidi Beate, Mascalzoni, Deborah
Publicado 2022

Ethical, legal and social/societal implications (ELSI) of recall-by-genotype (RbG) and genotype-driven-research (GDR) approaches: a scoping review

por Tschigg, Katharina, Consoli, Luca, Biasiotto, Roberta, Mascalzoni, Deborah
Publicado 2022

Italians locked down: people’s responses to early COVID-19 pandemic public health measures

por Romano, Virginia, Ancillotti, Mirko, Mascalzoni, Deborah, Biasiotto, Roberta
Publicado 2022

Return of research results (RoRR) to the healthy CHRIS cohort: designing a policy with the participants

por Staunton, Ciara, Kösters, Maria, Pramstaller, Peter P., Mascalzoni, Deborah
Publicado 2021

Editorial: Digital biomarkers in testing the safety and efficacy of new drugs in mental health: A collaborative effort of patients, clinicians, researchers, and regulators

por Blom, Johanna Maria Catharina, Benatti, Cristina, Mascalzoni, Deborah, Tascedda, Fabio, Pani, Luca
Publicado 2023

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

por Piciocchi, Cinzia, Ducato, Rossana, Martinelli, Lucia, Perra, Silvia, Tomasi, Marta, Zuddas, Carla, Mascalzoni, Deborah
Publicado 2017

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

por Howard, Heidi Carmen, Mascalzoni, Deborah, Mabile, Laurence, Houeland, Gry, Rial-Sebbag, Emmanuelle, Cambon-Thomsen, Anne
Publicado 2017

Ten years of dynamic consent in the CHRIS study: informed consent as a dynamic process

por Mascalzoni, Deborah, Melotti, Roberto, Pattaro, Cristian, Pramstaller, Peter Paul, Gögele, Martin, De Grandi, Alessandro, Biasiotto, Roberta
Publicado 2022

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

por Gainotti, Sabina, Mascalzoni, Deborah, Bros-Facer, Virginie, Petrini, Carlo, Floridia, Giovanna, Roos, Marco, Salvatore, Marco, Taruscio, Domenica
Publicado 2018

Preferences of the Public for Sharing Health Data: Discrete Choice Experiment

por Viberg Johansson, Jennifer, Bentzen, Heidi Beate, Shah, Nisha, Haraldsdóttir, Eik, Jónsdóttir, Guðbjörg Andrea, Kaye, Jane, Mascalzoni, Deborah, Veldwijk, Jorien
Publicado 2021

Participant perspective on the recall-by-genotype research approach: a mixed-method embedded study with participants of the CHRIS study

por Biasiotto, Roberta, Kösters, Maria, Tschigg, Katharina, Pramstaller, Peter P., Brüggemann, Norbert, Borsche, Max, Klein, Christine, Hicks, Andrew A., Mascalzoni, Deborah
Publicado 2023

Improving the informed consent process in international collaborative rare disease research: effective consent for effective research

por Gainotti, Sabina, Turner, Cathy, Woods, Simon, Kole, Anna, McCormack, Pauline, Lochmüller, Hanns, Riess, Olaf, Straub, Volker, Posada, Manuel, Taruscio, Domenica, Mascalzoni, Deborah
Publicado 2016

International Charter of principles for sharing bio-specimens and data

por Mascalzoni, Deborah, Dove, Edward S, Rubinstein, Yaffa, Dawkins, Hugh J S, Kole, Anna, McCormack, Pauline, Woods, Simon, Riess, Olaf, Schaefer, Franz, Lochmüller, Hanns, Knoppers, Bartha M, Hansson, Mats
Publicado 2015

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

por Goisauf, Melanie, Martin, Gillian, Bentzen, Heidi Beate, Budin-Ljøsne, Isabelle, Ursin, Lars, Durnová, Anna, Leitsalu, Liis, Smith, Katharine, Casati, Sara, Lavitrano, Marialuisa, Mascalzoni, Deborah, Boeckhout, Martin, Mayrhofer, Michaela Th.
Publicado 2019