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  1.  37
    Ethical use of artificial intelligence to prevent sudden cardiac death: an interview study of patient perspectives.Marieke A. R. Bak, Georg L. Lindinger, Hanno L. Tan, Jeannette Pols, Dick L. Willems, Ayca Koçar & Menno T. Maris - 2024 - BMC Medical Ethics 25 (1):1-15.
    BackgroundThe emergence of artificial intelligence (AI) in medicine has prompted the development of numerous ethical guidelines, while the involvement of patients in the creation of these documents lags behind. As part of the European PROFID project we explore patient perspectives on the ethical implications of AI in care for patients at increased risk of sudden cardiac death (SCD).AimExplore perspectives of patients on the ethical use of AI, particularly in clinical decision-making regarding the implantation of an implantable cardioverter-defibrillator (ICD).MethodsSemi-structured, future scenario-based (...)
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  2.  13
    Health data research on sudden cardiac arrest: perspectives of survivors and their next-of-kin.Dick L. Willems, Hanno L. Tan, Marieke T. Blom, Rens Veeken & Marieke A. R. Bak - 2021 - BMC Medical Ethics 22 (1):1-15.
    BackgroundConsent for data research in acute and critical care is complex as patients become at least temporarily incapacitated or die. Existing guidelines and regulations in the European Union are of limited help and there is a lack of literature about the use of data from this vulnerable group. To aid the creation of a patient-centred framework for responsible data research in the acute setting, we explored views of patients and next-of-kin about the collection, storage, sharing and use of genetic and (...)
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  3.  23
    Contextual Exceptionalism After Death: An Information Ethics Approach to Post-Mortem Privacy in Health Data Research.Marieke A. R. Bak & Dick L. Willems - 2022 - Science and Engineering Ethics 28 (4):1-20.
    In this article, we use the theory of Information Ethics to argue that deceased people have a prima facie moral right to privacy in the context of health data research, and that this should be reflected in regulation and guidelines. After death, people are no longer biological subjects but continue to exist as informational entities which can still be harmed/damaged. We find that while the instrumental value of recognising post-mortem privacy lies in the preservation of the social contract for health (...)
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  4.  18
    Correction: Ethical use of artificial intelligence to prevent sudden cardiac death: an interview study of patient perspectives.Menno T. Maris, Ayca Koçar, Dick L. Willems, Jeannette Pols, Hanno L. Tan, Georg L. Lindinger & Marieke A. R. Bak - 2024 - BMC Medical Ethics 25 (1):1-2.
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  5.  15
    Towards trust-based governance of health data research.Marieke A. R. Bak, M. Corrette Ploem, Hanno L. Tan, M. T. Blom & Dick L. Willems - 2023 - Medicine, Health Care and Philosophy 26 (2):185-200.
    Developments in medical big data analytics may bring societal benefits but are also challenging privacy and other ethical values. At the same time, an overly restrictive data protection regime can form a serious threat to valuable observational studies. Discussions about whether data privacy or data solidarity should be the foundational value of research policies, have remained unresolved. We add to this debate with an empirically informed ethical analysis. First, experiences with the implementation of the General Data Protection Regulation (GDPR) within (...)
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