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  1.  25
    Patients’ and public views and attitudes towards the sharing of health data for research: a narrative review of the empirical evidence.Shona Kalkman, Johannes van Delden, Amitava Banerjee, Benoît Tyl, Menno Mostert & Ghislaine van Thiel - 2022 - Journal of Medical Ethics 48 (1):3-13.
    IntroductionInternational sharing of health data opens the door to the study of the so-called ‘Big Data’, which holds great promise for improving patient-centred care. Failure of recent data sharing initiatives indicates an urgent need to invest in societal trust in researchers and institutions. Key to an informed understanding of such a ‘social license’ is identifying the views patients and the public may hold with regard to data sharing for health research.MethodsWe performed a narrative review of the empirical evidence addressing patients’ (...)
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  2.  31
    Responsible data sharing in international health research: a systematic review of principles and norms.Shona Kalkman, Menno Mostert, Christoph Gerlinger, Johannes J. M. van Delden & Ghislaine J. M. W. van Thiel - 2019 - BMC Medical Ethics 20 (1):21.
    Large-scale linkage of international clinical datasets could lead to unique insights into disease aetiology and facilitate treatment evaluation and drug development. Hereto, multi-stakeholder consortia are currently designing several disease-specific translational research platforms to enable international health data sharing. Despite the recent adoption of the EU General Data Protection Regulation, the procedures for how to govern responsible data sharing in such projects are not at all spelled out yet. In search of a first, basic outline of an ethical governance framework, we (...)
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    Protecting Privacy While Optimizing the Use of (Health)Data: The Importance of Measures and Safeguards.Julie-Anne R. Smit, Menno Mostert & Johannes J. M. van Delden - 2022 - American Journal of Bioethics 22 (7):79-81.
    The possibilities for collecting, storing, and processing of data have increased significantly over the last decades. It has been argued that an increasing demand for health data will de...
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    Learning accountable governance: Challenges and perspectives for data-intensive health research networks.Ghislaine Jmw van Thiel, Thomas Schillemans, Johannes Jm van Delden, Menno Mostert & Sam Ha Muller - 2022 - Big Data and Society 9 (2).
    Current challenges to sustaining public support for health data research have directed attention to the governance of data-intensive health research networks. Accountability is hailed as an important element of trustworthy governance frameworks for data-intensive health research networks. Yet the extent to which adequate accountability regimes in data-intensive health research networks are currently realized is questionable. Current governance of data-intensive health research networks is dominated by the limitations of a drawing board approach. As a way forward, we propose a stronger focus (...)
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  5.  28
    The social licence for data-intensive health research: towards co-creation, public value and trust.Johannes J. M. van Delden, Menno Mostert, Ghislaine J. M. W. van Thiel, Shona Kalkman & Sam H. A. Muller - 2021 - BMC Medical Ethics 22 (1):1-9.
    BackgroundThe rise of Big Data-driven health research challenges the assumed contribution of medical research to the public good, raising questions about whether the status of such research as a common good should be taken for granted, and how public trust can be preserved. Scandals arising out of sharing data during medical research have pointed out that going beyond the requirements of law may be necessary for sustaining trust in data-intensive health research. We propose building upon the use of a social (...)
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