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  1. Consent and the ethical duty to participate in health data research.Angela Ballantyne & G. Owen Schaefer - 2018 - Journal of Medical Ethics 44 (6):392-396.
    The predominant view is that a study using health data is observational research and should require individual consent unless it can be shown that gaining consent is impractical. But recent arguments have been made that citizens have an ethical obligation to share their health information for research purposes. In our view, this obligation is sufficient ground to expand the circumstances where secondary use research with identifiable health information is permitted without explicit subject consent. As such, for some studies the Institutional (...)
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  • The social licence for research: why care.data ran into trouble.Pam Carter, Graeme T. Laurie & Mary Dixon-Woods - 2015 - Journal of Medical Ethics 41 (5):404-409.
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  • Data for sale: trust, confidence and sharing health data with commercial companies.Mackenzie Graham - 2023 - Journal of Medical Ethics 49 (7):515-522.
    Powered by ‘big health data’ and enormous gains in computing power, artificial intelligence and related technologies are already changing the healthcare landscape. Harnessing the potential of these technologies will necessitate partnerships between health institutions and commercial companies, particularly as it relates to sharing health data. The need for commercial companies to be trustworthy users of data has been argued to be critical to the success of this endeavour. I argue that this approach is mistaken. Our interactions with commercial companies need (...)
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  • Evaluating models of consent in changing health research environments.Svenja Wiertz & Joachim Boldt - 2022 - Medicine, Health Care and Philosophy 25 (2):269-280.
    While Specific Informed Consent has been the established standard for obtaining consent for medical research for many years, it does not appear suitable for large-scale biobank and health data research. Thus, alternative forms of consent have been suggested, based on a variety of ethical background assumptions. This article identifies five main ethical perspectives at stake. Even though Tiered Consent, Dynamic Consent and Meta Consent are designed to the demands of the self-determination perspective as well as the perspective of research as (...)
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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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  • Why (Some) Corporations Have Positive Duties to (Some of) the Global Poor.Tadhg Ó Laoghaire - 2023 - Journal of Business Ethics 184 (3):741-755.
    Many corporations are large, powerful, and wealthy. There are massive shortfalls of global justice, with hundreds of millions of people in the world living below the threshold of extreme poverty, and billions more living not far above that threshold. Where injustice and needs shortfalls must be remediated, we often look towards agents’ capabilities to determine who ought to bear the costs of rectifying the situation. The combination of these three claims grounds what I call a ‘linkage-based’ account of why corporations (...)
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  • Sharing whilst caring: solidarity and public trust in a data-driven healthcare system.Ruth Horn & Angeliki Kerasidou - 2020 - BMC Medical Ethics 21 (1):1-7.
    Background In the UK, the solidaristic character of the NHS makes it one of the most trusted public institutions. In recent years, the introduction of data-driven technologies in healthcare has opened up the space for collaborations with private digital companies seeking access to patient data. However, these collaborations appear to challenge the public’s trust in the. Main text In this paper we explore how the opening of the healthcare sector to private digital companies challenges the existing social contract and the (...)
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  • Secondary research use of personal medical data: patient attitudes towards data donation.Michael Krawczak, Matthias Laudes, Bimba Franziska Hoyer, Christoph Borzikowsky & Gesine Richter - 2021 - BMC Medical Ethics 22 (1):1-10.
    BackgroundThe SARS-CoV-2 pandemic has highlighted once more the great need for comprehensive access to, and uncomplicated use of, pre-existing patient data for medical research. Enabling secondary research-use of patient-data is a prerequisite for the efficient and sustainable promotion of translation and personalisation in medicine, and for the advancement of public-health. However, balancing the legitimate interests of scientists in broad and unrestricted data-access and the demand for individual autonomy, privacy and social justice is a great challenge for patient-based medical research.MethodsWe therefore (...)
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  • Do patients and research subjects have a right to receive their genomic raw data? An ethical and legal analysis.Christoph Schickhardt, Henrike Fleischer & Eva C. Winkler - 2020 - BMC Medical Ethics 21 (1):1-12.
    As Next Generation Sequencing technologies are increasingly implemented in biomedical research and care, the number of study participants and patients who ask for release of their genomic raw data is set to increase. This raises the question whether research participants and patients have a legal and moral right to receive their genomic raw data and, if so, how this right should be implemented into practice. In a first step we clarify some central concepts such as “raw data”; in a second (...)
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  • Democratic Rights and the Choice of Economic Systems.Platz Jeppe von - 2017 - Analyse & Kritik 39 (2):405-412.
    Holt argues that Rawls’s first principle of justice requires democratic control of the economy and that property owning democracy fails to satisfy this requirement; only liberal socialism is fully democratic. However, the notion of democratic control is ambiguous, and Holt has to choose between the weaker notion of democratic control that Rawls is committed to and the stronger notion that property owning democracy fails to satisfy. It may be that there is a tension between capitalism and democracy, so that only (...)
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