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  1. Big Tech platforms in health research: Re-purposing big data governance in light of the General Data Protection Regulation’s research exemption.Ine Van Hoyweghen, Giuseppe Testa & Luca Marelli - 2021 - Big Data and Society 8 (1).
    The emergence of a global industry of digital health platforms operated by Big Tech corporations, and its growing entanglements with academic and pharmaceutical research networks, raise pressing questions on the capacity of current data governance models, regulatory and legal frameworks to safeguard the sustainability of the health research ecosystem. In this article, we direct our attention toward the challenges faced by the European General Data Protection Regulation in regulating the potentially disruptive engagement of Big Tech platforms in health research. The (...)
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  • Anticipatory Governance in Biobanking: Security and Risk Management in Digital Health.Dagmar Rychnovská - 2021 - Science and Engineering Ethics 27 (3):1-18.
    Although big-data research has met with multiple controversies in diverse fields, political and security implications of big data in life sciences have received less attention. This paper explores how threats and risks are anticipated and acted on in biobanking, which builds research repositories for biomedical samples and data. Focusing on the biggest harmonisation cluster of biomedical research in Europe, BBMRI-ERIC, the paper analyses different logics of risk in the anticipatory discourse on biobanking. Based on document analysis, interviews with ELSI experts, (...)
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  • Ethical Issues in Social Science Research Employing Big Data.Mohammad Hosseini, Michał Wieczorek & Bert Gordijn - 2022 - Science and Engineering Ethics 28 (3):1-21.
    This paper analyzes the ethics of social science research employing big data. We begin by highlighting the research gap found on the intersection between big data ethics, SSR and research ethics. We then discuss three aspects of big data SSR which make it warrant special attention from a research ethics angle: the interpretative character of both SSR and big data, complexities of anticipating and managing risks in publication and reuse of big data SSR, and the paucity of regulatory oversight and (...)
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