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  1. Status Distrust of Scientific Experts.Hugh Desmond - 2022 - Social Epistemology:1-15.
    Distrust in scientific experts can be surprisingly stubborn, persisting despite evidence supporting the experts’ views, demonstrations of their competence, or displays of good will. This stubborn distrust is often viewed as a manifestation of irrationality. By contrast, this article proposes a logic of “status distrust”: low-status individuals are objectively vulnerable to collective decision-making, and can justifiably distrust high-status scientific experts if they are not confident that the experts do not have their best interests at heart. In phenomena of status distrust, (...)
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  • 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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  • Precision Medicine, Data, and the Anthropology of Social Status.Hugh Desmond - 2021 - American Journal of Bioethics 21 (4):80-83.
    The success of precision medicine depends on obtaining large amounts of information about at-risk populations. However, getting consent is often difficult. Why? In this commentary I point to the differentials in social status involved. These differentials are inevitable once personal information is surrendered, but are particularly intense when the studied populations are socioeconomically or socioculturally disadvantaged and/or ethnically stigmatized groups. I suggest how the deep distrust of the latter groups can be partially justified as a lack of confidence that their (...)
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  • Haben Patient*innen die moralische Pflicht, ihre klinischen Daten für Forschung bereitzustellen? Eine kritische Prüfung möglicher Gründe.Martin Jungkunz, Anja Köngeter, Katja Mehlis, Markus Spitz, Eva C. Winkler & Christoph Schickhardt - 2022 - Ethik in der Medizin 34 (2):195-220.
    Die Sekundärnutzung klinischer Daten für Forschungs- und Lernaktivitäten hat das Potenzial, medizinisches Wissen und klinische Versorgung erheblich zu verbessern. Zur Realisierung dieses Potenzials bedarf es einer ethischen und rechtlichen Grundlage für die Datennutzung, vorzugsweise in Form der Einwilligung von Patient*innen. Damit stellt sich die grundsätzliche Frage: Haben Patient*innen eine moralische Pflicht, ihre klinischen Daten für Forschungs- und Lernaktivitäten zur Verfügung zu stellen?Auf Basis eines ethischen Ansatzes, der als „sorgender Liberalismus“ bezeichnet werden kann, werden folgende Argumente zur Begründung einer Pflicht von (...)
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  • A Critical Examination of Informed Consent Approaches in Pragmatic Cluster-Randomized Trials.Cory E. Goldstein - unknown
    This thesis addresses the tension in pragmatic cluster-randomized trials between their social value and the requirement to respect the autonomy of research participants. Pragmatic trials are designed to evaluate the effectiveness of treatments in real-world settings to inform clinical decision-making and promote cost-efficient care. These trials are often embedded into clinical settings and ideally include all patients who would receive the treatments under investigation as a part of routine care. Trialists increasingly adopt cluster-randomized designs—in which intact groups, such as hospitals (...)
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  • Waving Away Waivers: An Obligation to Contribute to ‘Herd Knowledge’ for Data Linkage Research?Owen M. Bradfield - 2021 - Sage Publications Ltd: Research Ethics 18 (2):151-162.
    Research Ethics, Volume 18, Issue 2, Page 151-162, April 2022. In today’s online data-driven world, people constantly shed data and deposit digital footprints. When individuals access health services, governments and health providers collect and store large volumes of health information about people that can later be retrieved, linked and analysed for research purposes. This can lead to new discoveries in medicine and healthcare. In addition, when securely stored and de-identified, the privacy risks are minimal and manageable. In many jurisdictions, ethics (...)
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  • Emergency Department Patients’ Attitudes Towards the Use of Data in Their Clinical Record for Research Without Their Consent.Chase Schultz-Swarthfigure, Anne-Maree Kelly & Deborah Zion - forthcoming - Journal of Medical Ethics:medethics-2021-108026.
    BackgroundHealth research often uses health information, a subcategory of personal information, collected during clinical encounters. Conditions under which such health information can be used for the secondary purpose of research are set out in state, national and international law. In Australia, consent is required or the relevant conditions for a waiver of consent must be met and approved by a human research ethics committee. Consent for use of health information for research is rarely sought at an emergency department presentation. Research (...)
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  • Haben Patient*innen die moralische Pflicht, ihre klinischen Daten für Forschung bereitzustellen? Eine kritische Prüfung möglicher GründeDo patients have a moral duty to provide their clinical data for research? A critical examination of possible reasons.Martin Jungkunz, Anja Köngeter, Katja Mehlis, Markus Spitz, Eva C. Winkler & Christoph Schickhardt - 2022 - Ethik in der Medizin 34 (2):195-220.
    ZusammenfassungDie Sekundärnutzung klinischer Daten für Forschungs- und Lernaktivitäten hat das Potenzial, medizinisches Wissen und klinische Versorgung erheblich zu verbessern. Zur Realisierung dieses Potenzials bedarf es einer ethischen und rechtlichen Grundlage für die Datennutzung, vorzugsweise in Form der Einwilligung von Patient*innen. Damit stellt sich die grundsätzliche Frage: Haben Patient*innen eine moralische Pflicht, ihre klinischen Daten für Forschungs- und Lernaktivitäten zur Verfügung zu stellen?Auf Basis eines ethischen Ansatzes, der als „sorgender Liberalismus“ bezeichnet werden kann, werden folgende Argumente zur Begründung einer Pflicht von (...)
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  • Waving Away Waivers: An Obligation to Contribute to ‘Herd Knowledge’ for Data Linkage Research?Owen M. Bradfield - 2022 - Research Ethics 18 (2):151-162.
    In today’s online data-driven world, people constantly shed data and deposit digital footprints. When individuals access health services, governments and health providers collect and store large volumes of health information about people that can later be retrieved, linked and analysed for research purposes. This can lead to new discoveries in medicine and healthcare. In addition, when securely stored and de-identified, the privacy risks are minimal and manageable. In many jurisdictions, ethics committees routinely waive the requirement for researchers to obtain consent (...)
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  • Disambiguating the Benefits and Risks From Public Health Data in the Digital Economy.Sarah Cheung - 2020 - Big Data and Society 7 (1).
    This article focuses on key roles that the ill-defined concept of ‘public benefit’ plays in accessing the public health data held by the UK’s National Health Service. Using the concept of the ‘trade-off fallacy’, this article argues that current data access and governance structures, based on particular construals of public benefit in the context of public health data, largely negate the possibility of effective control by individuals over future uses of personal health data. This generates a health data version of (...)
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  • How to Design a Governable Digital Health Ecosystem.Jessica Morley & Luciano Floridi - manuscript
    It has been suggested that to overcome the challenges facing the UK’s National Health Service (NHS) of an ageing population and reduced available funding, the NHS should be transformed into a more informationally mature and heterogeneous organisation, reliant on data-based and algorithmically-driven interactions between human, artificial, and hybrid (semi-artificial) agents. This transformation process would offer significant benefit to patients, clinicians, and the overall system, but it would also rely on a fundamental transformation of the healthcare system in a way that (...)
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  • Ethical Issues in Consent for the Reuse of Data in Health Data Platforms.Alex McKeown, Miranda Mourby, Paul Harrison, Sophie Walker, Mark Sheehan & Ilina Singh - 2021 - Science and Engineering Ethics 27 (1):1-21.
    Data platforms represent a new paradigm for carrying out health research. In the platform model, datasets are pooled for remote access and analysis, so novel insights for developing better stratified and/or personalised medicine approaches can be derived from their integration. If the integration of diverse datasets enables development of more accurate risk indicators, prognostic factors, or better treatments and interventions, this obviates the need for the sharing and reuse of data; and a platform-based approach is an appropriate model for facilitating (...)
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  • Remote Monitoring of Medication Adherence and Patient and Industry Responsibilities in a Learning Health System.Junhewk Kim, Austin Connor Kassels, Nathaniel Isaac Costin & Harald Schmidt - 2020 - Journal of Medical Ethics 46 (6):386-391.
    A learning health system seeks to establish a closer connection between clinical care and research and establishes new responsibilities for healthcare providers as well as patients. A new set of technological approaches in medication adherence monitoring can potentially yield valuable data within an LHS, and raises the question of the scope and limitations of patients’ responsibilities to use them. We argue here that, in principle, it is plausible to suggest that patients have a prima facie obligation to use novel adherence (...)
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  • Meeting the Needs of Underserved Populations: Setting the Agenda for More Inclusive Citizen Science of Medicine.Amelia Fiske, Barbara Prainsack & Alena Buyx - 2019 - Journal of Medical Ethics 45 (9):617-622.
    In its expansion to genomic, epidemiological and biomedical research, citizen science has been promoted as contributing to the democratisation of medical research and healthcare. At the same time, it has been criticised for reinforcing patterns of exclusion in health and biomedicine, and sometimes even creating new ones. Although citizen science has the potential to make biomedical research more inclusive, the benefits of current citizen science initiatives are not equally accessible for all people—in particular those who are resource-poor, located outside of (...)
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  • Taxonomy of Justifications for Consent Waivers: When and Why Are Public Views Relevant?Angela Ballantyne & G. Owen Schaefer - 2019 - Journal of Medical Ethics 45 (5):353-354.
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  • In Response to Ballantyne and Schaefer’s ‘Consent and the Ethical Duty to Participate in Health Data Research’.Nilay Hepgul, Katherine E. Sleeman, Alice M. Firth, Anna Johnston, James T. H. Teo, William Bernal, Richard J. B. Dobson & Irene J. Higginson - 2019 - Journal of Medical Ethics 45 (5):351-352.
    We welcome Ballantyne & Schaefer’s discussion of the issues concerning consent and use of health data for research. In response to their acknowledgement of the need for public debate and discussion, we provide evidence from our own public consultation on this topic.
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  • Donor-Funded Research: Permissible, Not Perfect.Mike King & Angela Ballantyne - 2019 - Journal of Medical Ethics 45 (1):36-40.
    Donor-funded research is research funded by private donors in exchange for research-related benefits, such as trial participation or access to the trial intervention. This has been pejoratively referred to as ‘pay to play’ research, and criticised as unethical. We outline three models of donor-funded research, and argue for their permissibility on the grounds of personal liberty, their capacity to facilitate otherwise unfunded health research and their consistency with current ethical standards for research. We defend this argument against objections that donor-funded (...)
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