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  1. What ethical approaches are used by scientists when sharing health data? An interview study.Deborah Mascalzoni, Heidi Beate Bentzen & Jennifer Viberg Johansson - 2022 - BMC Medical Ethics 23 (1):1-12.
    BackgroundHealth data-driven activities have become central in diverse fields (research, AI development, wearables, etc.), and new ethical challenges have arisen with regards to privacy, integrity, and appropriateness of use. To ensure the protection of individuals’ fundamental rights and freedoms in a changing environment, including their right to the protection of personal data, we aim to identify the ethical approaches adopted by scientists during intensive data exploitation when collecting, using, or sharing peoples’ health data.MethodsTwelve scientists who were collecting, using, or sharing (...)
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  • (1 other version)Consent as a compositional act – a framework that provides clarity for the retention and use of data.Minerva C. Rivas Velarde, Christian Lovis, Marcello Ienca, Caroline Samer & Samia Hurst - 2024 - Philosophy, Ethics and Humanities in Medicine 19 (1):1-10.
    Background Informed consent is one of the key principles of conducting research involving humans. When research participants give consent, they perform an act in which they utter, write or otherwise provide an authorisation to somebody to do something. This paper proposes a new understanding of the informed consent as a compositional act. This conceptualisation departs from a modular conceptualisation of informed consent procedures. Methods This paper is a conceptual analysis that explores what consent is and what it does or does (...)
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