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  1.  47
    Dynamic Consent: a potential solution to some of the challenges of modern biomedical research.Isabelle Budin-Ljøsne, Harriet J. A. Teare, Jane Kaye, Stephan Beck, Heidi Beate Bentzen, Luciana Caenazzo, Clive Collett, Flavio D’Abramo, Heike Felzmann, Teresa Finlay, Muhammad Kassim Javaid, Erica Jones, Višnja Katić, Amy Simpson & Deborah Mascalzoni - 2017 - BMC Medical Ethics 18 (1):4.
    BackgroundInnovations in technology have contributed to rapid changes in the way that modern biomedical research is carried out. Researchers are increasingly required to endorse adaptive and flexible approaches to accommodate these innovations and comply with ethical, legal and regulatory requirements. This paper explores how Dynamic Consent may provide solutions to address challenges encountered when researchers invite individuals to participate in research and follow them up over time in a continuously changing environment.MethodsAn interdisciplinary workshop jointly organised by the University of Oxford (...)
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  2.  23
    What ethical approaches are used by scientists when sharing health data? An interview study.Deborah Mascalzoni, Heidi Beate Bentzen & Jennifer Viberg Johansson - 2022 - BMC Medical Ethics 23 (1):1-12.
    BackgroundHealth data-driven activities have become central in diverse fields (research, AI development, wearables, etc.), and new ethical challenges have arisen with regards to privacy, integrity, and appropriateness of use. To ensure the protection of individuals’ fundamental rights and freedoms in a changing environment, including their right to the protection of personal data, we aim to identify the ethical approaches adopted by scientists during intensive data exploitation when collecting, using, or sharing peoples’ health data.MethodsTwelve scientists who were collecting, using, or sharing (...)
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  3.  8
    Ethics, Law and Governance of Biobanking: National, European and International Approaches.Deborah Mascalzoni (ed.) - 2015 - Dordrecht: Imprint: Springer.
    Biobank research and genomic information are changing the way we look at health and medicine. Genomics challenges our values and has always been controversial and difficult to regulate. In the future lies the promise of tailored medical treatments and pharmacogenomics but the borders between medical research and clinical practice are becoming blurred. We see sequencing platforms for research that can have diagnostic value for patients. Clinical applications and research have been kept separate, but the blurring lines challenges existing regulations and (...)
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  4.  3
    Artificial Intelligence Needs Data: Challenges Accessing Italian Databases to Train AI.Ciara Staunton, Roberta Biasiotto, Katharina Tschigg & Deborah Mascalzoni - 2024 - Asian Bioethics Review 16 (3):423-435.
    Population biobanks are an increasingly important infrastructure to support research and will be a much-needed resource in the delivery of personalised medicine. Artificial intelligence (AI) systems can process and cross-link very large amounts of data quickly and be used not only for improving research power but also for helping with complex diagnosis and prediction of diseases based on health profiles. AI, therefore, potentially has a critical role to play in personalised medicine, and biobanks can provide a lot of the necessary (...)
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  5.  29
    "Patientcentricity": An Editorial.Claudio Corradetti, Peter P. Pramstaller & Deborah Mascalzoni - 2012 - Studies in Ethics, Law, and Technology 6 (1).
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  6.  22
    Consenting in Population Genomics as an Open Communication Process.Deborah Mascalzoni, Andrew Hicks & Peter P. Pramstaller - 2009 - Studies in Ethics, Law, and Technology 3 (1).
    New advances in genomics changed the research landscape significantly in the last few years. The power and significance of already existing tissue collections is enhanced by their growing size, and all over the world national projects aim to connect with each other at the international level, calling for integrated and common regulations in the transnational research field. The post genomics era faces problems that are partially different from those within the classical bioethical framework. The challenge is to find new ways (...)
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  7.  22
    Invited Editorial: Patient centric initiatives (PCIs) - a shift in the governance of science: Lessons from the biobanks world.Deborah Mascalzoni, Peter Pramstaller & Claudio Corradetti - 2013 - Research Ethics 9 (2):52-54.
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