Resultats de la cerca - Mascalzoni, Deborah

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

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

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The GDPR and the research exemption: considerations on the necessary safeguards for research biobanks per 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 per Romano, Virginia, Milne, Richard, Mascalzoni, Deborah

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Informed Consent in the Genomics Era per 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 per 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 per 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 per 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 per 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 per 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) per 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 per 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 per 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 per 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 per 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 per 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 per 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 per 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 per 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 per 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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