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  1. Health Research with Big Data: Time for Systemic Oversight.Effy Vayena & Alessandro Blasimme - 2018 - Journal of Law, Medicine and Ethics 46 (1):119-129.
    To address the ethical challenges in big data health research we propose the concept of systemic oversight. This approach is based on six defining features and aims at creating a common ground across the oversight pipeline of biomedical big data research. Current trends towards enhancing granularity of informed consent and specifying legal provisions to address informational privacy and discrimination concerns in data-driven health research are laudable. However, these solutions alone cannot have the desired impact unless oversight activities by different stakeholders (...)
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  • Dynamic Consent in Neuroscience Too?Henri-Corto Stoeklé, Achille Ivasilevitch & Christian Hervé - 2021 - American Journal of Bioethics Neuroscience 12 (1):70-72.
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  • Democratizing Health Research Through Data Cooperatives.Alessandro Blasimme, Effy Vayena & Ernst Hafen - 2018 - Philosophy and Technology 31 (3):473-479.
    Massive amounts of data are collected and stored on a routine basis in virtually all domains of human activities. Such data are potentially useful to biomedicine. Yet, access to data for research purposes is hindered by the fact that different kinds of individual-patient data reside in disparate, unlinked silos. We propose that data cooperatives can promote much needed data aggregation and consequently accelerate research and its clinical translation. Data cooperatives enable direct control over personal data, as well as more democratic (...)
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