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  1. The Ethics of Uncertainty for Data Subjects.Philip Nickel - 2019 - In Jenny Krutzinna & Luciano Floridi (eds.), The Ethics of Medical Data Donation. Springer Verlag. pp. 55-74.
    Modern health data practices come with many practical uncertainties. In this paper, I argue that data subjects’ trust in the institutions and organizations that control their data, and their ability to know their own moral obligations in relation to their data, are undermined by significant uncertainties regarding the what, how, and who of mass data collection and analysis. I conclude by considering how proposals for managing situations of high uncertainty might be applied to this problem. These emphasize increasing organizational flexibility, (...)
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  • Enabling Posthumous Medical Data Donation: An Appeal for the Ethical Utilisation of Personal Health Data.Jenny Krutzinna, Mariarosaria Taddeo & Luciano Floridi - 2019 - Science and Engineering Ethics 25 (5):1357-1387.
    This article argues that personal medical data should be made available for scientific research, by enabling and encouraging individuals to donate their medical records once deceased, similar to the way in which they can already donate organs or bodies. This research is part of a project on posthumous medical data donation developed by the Digital Ethics Lab at the Oxford Internet Institute at the University of Oxford. Ten arguments are provided to support the need to foster posthumous medical data donation. (...)
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  • How Should We Think About Clinical Data Ownership?Angela Ballantyne - 2020 - Journal of Medical Ethics 46 (5):289-294.
    The concept of ‘ownership’ is increasingly central to debates, in the media, health policy and bioethics, about the appropriate management of clinical data. I argue that the language of ownership acts as a metaphor and reflects multiple concerns about current data use and the disenfranchisement of citizens and collectives in the existing data ecosystem. But exactly which core interests and concerns ownership claims allude to remains opaque. Too often, we jump straight from ‘ownership’ to ‘private property’ and conclude ‘the data (...)
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  • Kenyan Health Stakeholder Views on Individual Consent, General Notification and Governance Processes for the Re-Use of Hospital Inpatient Data to Support Learning on Healthcare Systems.Daniel Mbuthia, Sassy Molyneux, Maureen Njue, Salim Mwalukore & Vicki Marsh - 2019 - BMC Medical Ethics 20 (1):3.
    Increasing adoption of electronic health records in hospitals provides new opportunities for patient data to support public health advances. Such learning healthcare models have generated ethical debate in high-income countries, including on the role of patient and public consent and engagement. Increasing use of electronic health records in low-middle income countries offers important potential to fast-track healthcare improvements in these settings, where a disproportionate burden of global morbidity occurs. Core ethical issues have been raised around the role and form of (...)
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