检索结果 - Mascalzoni, Deborah

Digital Biomarkers in Psychiatric Research: Data Protection Qualifications in a Complex Ecosystem 由 Parziale, Andrea, Mascalzoni, Deborah

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Rare disease research: Breaking the privacy barrier 由 Mascalzoni, Deborah, Paradiso, Angelo, Hansson, Matts

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The GDPR and the research exemption: considerations on the necessary safeguards for research biobanks 由 Staunton, Ciara, Slokenberga, Santa, Mascalzoni, Deborah

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Italian public’s views on sharing genetic information and medical information: findings from the ‘Your DNA, Your Say’ study 由 Romano, Virginia, Milne, Richard, Mascalzoni, Deborah

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Informed Consent in the Genomics Era 由 Mascalzoni, Deborah, Hicks, Andrew, Pramstaller, Peter, Wjst, Matthias

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Appropriate Safeguards and Article 89 of the GDPR: Considerations for Biobank, Databank and Genetic Research 由 Staunton, Ciara, Slokenberga, Santa, Parziale, Andrea, Mascalzoni, Deborah

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What ethical approaches are used by scientists when sharing health data? An interview study 由 Viberg Johansson, Jennifer, Bentzen, Heidi Beate, Mascalzoni, Deborah

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Return of research results (RoRR) to the healthy CHRIS cohort: designing a policy with the participants 由 Staunton, Ciara, Kösters, Maria, Pramstaller, Peter P., Mascalzoni, Deborah

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Legal issues in governing genetic biobanks: the Italian framework as a case study for the implications for citizen’s health through public-private initiatives 由 Piciocchi, Cinzia, Ducato, Rossana, Martinelli, Lucia, Perra, Silvia, Tomasi, Marta, Zuddas, Carla, Mascalzoni, Deborah

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‘You should at least ask'. The expectations, hopes and fears of rare disease patients on large-scale data and biomaterial sharing for genomics research 由 McCormack, Pauline, Kole, Anna, Gainotti, Sabina, Mascalzoni, Deborah, Molster, Caron, Lochmüller, Hanns, Woods, Simon

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How to responsibly acknowledge research work in the era of big data and biobanks: ethical aspects of the Bioresource Research Impact Factor (BRIF) 由 Howard, Heidi Carmen, Mascalzoni, Deborah, Mabile, Laurence, Houeland, Gry, Rial-Sebbag, Emmanuelle, Cambon-Thomsen, Anne

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Meeting Patients’ Right to the Correct Diagnosis: Ongoing International Initiatives on Undiagnosed Rare Diseases and Ethical and Social Issues 由 Gainotti, Sabina, Mascalzoni, Deborah, Bros-Facer, Virginie, Petrini, Carlo, Floridia, Giovanna, Roos, Marco, Salvatore, Marco, Taruscio, Domenica

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Preferences of the Public for Sharing Health Data: Discrete Choice Experiment 由 Viberg Johansson, Jennifer, Bentzen, Heidi Beate, Shah, Nisha, Haraldsdóttir, Eik, Jónsdóttir, Guðbjörg Andrea, Kaye, Jane, Mascalzoni, Deborah, Veldwijk, Jorien

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Improving the informed consent process in international collaborative rare disease research: effective consent for effective research 由 Gainotti, Sabina, Turner, Cathy, Woods, Simon, Kole, Anna, McCormack, Pauline, Lochmüller, Hanns, Riess, Olaf, Straub, Volker, Posada, Manuel, Taruscio, Domenica, Mascalzoni, Deborah

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Comparison of participant information and informed consent forms of five European studies in genetic isolated populations 由 Mascalzoni, Deborah, Janssens, A Cecile JW, Stewart, Alison, Pramstaller, Peter, Gyllensten, Ulf, Rudan, Igor, van Duijn, Cornelia M, Wilson, James F, Campbell, Harry, Quillan, Ruth Mc

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International Charter of principles for sharing bio-specimens and data 由 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

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International Charter of principles for sharing bio-specimens and data 由 Mascalzoni, Deborah, Dove, Edward S, Rubinstein, Yaffa, Dawkins, Hugh JS, Kole, Anna, McCormack, Pauline, Woods, Simon, Riess, Olaf, Schaefer, Franz, Lochmüller, Hanns, Knoppers, Bartha M, Hansson, Mats

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

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

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Balancing scientific interests and the rights of participants in designing a recall by genotype study 由 Mascalzoni, Deborah, Biasiotto, Roberta, Borsche, Max, Brüggemann, Norbert, De Grandi, Alessandro, Goegele, Martin, Frygner-Holm, Sara, Klein, Christine, Kösters, Maria, Staunton, Ciara, Pramstaller, Peter P., Krawczak, Michael, Hicks, Andrew A.

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