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  1. The ethics of uncertainty for data subjects.Philip Nickel - 2019 - In Peter Dabrock, Matthias Braun & Patrik Hummel (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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  • Is Your Neural Data Part of Your Mind? Exploring the Conceptual Basis of Mental Privacy.Abel Wajnerman Paz - 2022 - Minds and Machines 32 (2):395-415.
    It has been argued that neural data are an especially sensitive kind of personal information that could be used to undermine the control we should have over access to our mental states, and therefore need a stronger legal protection than other kinds of personal data. The Morningside Group, a global consortium of interdisciplinary experts advocating for the ethical use of neurotechnology, suggests achieving this by treating legally ND as a body organ. Although the proposal is currently shaping ND-related policies, it (...)
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  • Privacy and Health Practices in the Digital Age.Monique Pyrrho, Leonardo Cambraia & Viviane Ferreira de Vasconcelos - 2022 - American Journal of Bioethics 22 (7):50-59.
    Increasing privacy concerns are arising from expanding use of aggregated personal information in health practices. Conversely, in light of the promising benefits of data driven healthcare, privacy...
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  • Response to Open Peer Commentaries on “Privacy and Health Practices in the Digital Age”.Monique Pyrrho, Leonardo Cambraia & Viviane Ferreira de Vasconcelos - 2022 - American Journal of Bioethics 22 (12):5-8.
    Privacy must be protected for social reasons. That is what was argued in “Privacy and Health Practices in the Digital Age” (Pyrrho, Cambraia, and de Vasconcelos 2022). Versalovic, Goering, and Klei...
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  • Is there a civic duty to support medical AI development by sharing electronic health records?Sebastian Müller - 2022 - BMC Medical Ethics 23 (1):1-12.
    Medical artificial intelligence (AI) is considered to be one of the most important assets for the future of innovative individual and public health care. To develop innovative medical AI, it is necessary to repurpose data that are primarily generated in and for the health care context. Usually, health data can only be put to a secondary use if data subjects provide their informed consent (IC). This regulation, however, is believed to slow down or even prevent vital medical research, including AI (...)
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  • Own Data? Ethical Reflections on Data Ownership.Patrik Hummel, Matthias Braun & Peter Dabrock - 2020 - Philosophy and Technology 34 (3):545-572.
    In discourses on digitization and the data economy, it is often claimed that data subjects shall beownersof their data. In this paper, we provide a problem diagnosis for such calls fordata ownership: a large variety of demands are discussed under this heading. It thus becomes challenging to specify what—if anything—unites them. We identify four conceptual dimensions of calls for data ownership and argue that these help to systematize and to compare different positions. In view of this pluralism of data ownership (...)
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  • Public interest in health data research: laying out the conceptual groundwork.Angela Ballantyne & G. Owen Schaefer - 2020 - Journal of Medical Ethics 46 (9):610-616.
    The future of health research will be characterised by three continuing trends: rising demand for health data; increasing impracticability of obtaining specific consent for secondary research; and decreasing capacity to effectively anonymise data. In this context, governments, clinicians and the research community must demonstrate that they can be responsible stewards of health data. IRBs and RECs sit at heart of this process because in many jurisdictions they have the capacity to grant consent waivers when research is judged to be of (...)
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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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