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  1. How to Design a Governable Digital Health Ecosystem.Jessica Morley & Luciano Floridi - manuscript
    It has been suggested that to overcome the challenges facing the UK’s National Health Service (NHS) of an ageing population and reduced available funding, the NHS should be transformed into a more informationally mature and heterogeneous organisation, reliant on data-based and algorithmically-driven interactions between human, artificial, and hybrid (semi-artificial) agents. This transformation process would offer significant benefit to patients, clinicians, and the overall system, but it would also rely on a fundamental transformation of the healthcare system in a way that (...)
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  • Big Tech Platforms in Health Research: Re-Purposing Big Data Governance in Light of the General Data Protection Regulation’s Research Exemption.Ine Van Hoyweghen, Giuseppe Testa & Luca Marelli - 2021 - Big Data and Society 8 (1).
    The emergence of a global industry of digital health platforms operated by Big Tech corporations, and its growing entanglements with academic and pharmaceutical research networks, raise pressing questions on the capacity of current data governance models, regulatory and legal frameworks to safeguard the sustainability of the health research ecosystem. In this article, we direct our attention toward the challenges faced by the European General Data Protection Regulation in regulating the potentially disruptive engagement of Big Tech platforms in health research. The (...)
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  • 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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