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  1. Research Based on Existing Clinical Data and Biospecimens: A Systematic Study of Patients’ Opinions.Arne Einar Vaaler, Linda Tømmerdal Roten & Hilde Eikemo - 2022 - BMC Medical Ethics 23 (1):1-8.
    BackgroundThe aim of the present survey was to investigate newly discharged hospital patients’ opinions on secondary use of their hospital data and biospecimens within the context of health research in general and, more specifically, on genetic research, data sharing across borders and cooperation with the health industry.MethodsA paper questionnaire was sent to 1049 consecutive newly discharged hospital patients.ResultsThe vast majority of the respondents preferred to be informed or to receive no notification at all for secondary research on their health data (...)
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  • Disproof of Concept: Resolving Ethical Dilemmas Using Algorithms.Bryan Pilkington & Charles Binkley - 2022 - American Journal of Bioethics 22 (7):81-83.
    Allowing algorithms to guide or determine decision-making in ethically complex situations, and eventually satisfying the need for good clinical ethics consultation work, is a philosophically intere...
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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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  • In Defence of a Broad Approach to Public Interest in Health Data Research.Angela Ballantyne & G. Owen Schaefer - 2021 - Journal of Medical Ethics 47 (8):583-584.
    In their response to ‘Public interest in health data research: laying out the conceptual groundwork’, Grewal and Newson critique us for inattention to the law and putting forward an impracticably broad conceptual understanding of public interest. While we agree more work is needed to generate a workable framework for Institutional Review Boards/Research Ethics Committees, we would contend that this should be grounded on a broad conception of public interest. This broadness facilitates regulatory agility, and is already reflected by some current (...)
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  • The Perils of a Broad Approach to Public Interest in Health Data Research: A Response to Ballantyne and Schaefer.Norah Grewal & Ainsley J. Newson - 2021 - Journal of Medical Ethics 47 (8):580-582.
    The law often calls on the concept of public interest for assistance. Privacy law makes use of this concept in several ways, including to justify consent waivers for secondary research on health information. Because the law sees information privacy as a means for individuals to control their personal information, consent can only be set aside in special circumstances. Ballantyne and Schaefer argue that only public interest, and only a broad conception of public interest, can do the special ‘normative justificatory work’ (...)
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