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  1. Comparison of Heads of Research Ethics Committees with Data Protection Officers on Personal Data Protection in Research: A Mixed-Methods Study with Structured Interviews.Karlo Ložnjak, Anamaria Malešević, Marin Čargo, Anamarija Mladinić, Zvonimir Koporc & Livia Puljak - forthcoming - Journal of Academic Ethics:1-22.
    Personal data protection is an ethical issue. In this study we analyzed how research ethics committees (RECs) and data protection officers (DPOs) handle personal data protection issues in research protocols. We conducted a mixed-methods study. We included heads (or delegated representatives) of RECs and DPOs from universities and public research institutes in Croatia. The participants provided information about data protection issues in research and their mutual collaboration on those issues through structured interviews that contained closed and open-ended questions. Qualitative description (...)
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  • How to Design Consent for Health Data Research? An Analysis of Arguments of Solidarity.Svenja Wiertz - 2023 - Public Health Ethics 16 (3):261-270.
    The article discusses the impact different concepts of solidarity can have on debates on models of consent for non-interventional research. It introduces three concepts of solidarity that have been referenced in bioethical debates: a purely descriptive concept, a concept that claims some derivative value for most but not all practices of solidarity, as well as a clearly normative concept where solidarity is tied to justice and taken to ground moral duties. It shows that regarding the rivalling models of study-specific consent, (...)
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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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  • Data Medicine: ‘Broad’ or ‘Dynamic’ Consent?Henri-Corto Stoeklé, Elisabeth Hulier-Ammar & Christian Hervé - 2022 - Public Health Ethics 15 (2):181-185.
    The General Data Protection Regulation imposes, at European level, a need to seek express or explicit consent for the processing of health data. In the framework of biomedical research, some favor the use of express ‘broad’ consent, whereas other maintain, or wish to maintain the use of presumed or implicit consent, often referred to as ‘non-opposition’ in conditions in which such consent is still authorized. In our view, broad consent and presumed consent are likely to prove to be easy solutions (...)
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  • Public health measures and the rise of incidental surveillance: Considerations about private informational power and accountability.B. A. Kamphorst & A. Henschke - 2023 - Ethics and Information Technology 25 (4):1-14.
    The public health measures implemented in response to the COVID-19 pandemic have resulted in a substantially increased shared reliance on private infrastructure and digital services in areas such as healthcare, education, retail, and the workplace. This development has (i) granted a number of private actors significant (informational) power, and (ii) given rise to a range of digital surveillance practices incidental to the pandemic itself. In this paper, we reflect on these secondary consequences of the pandemic and observe that, even though (...)
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