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  1. Towards trust-based governance of health data research.Marieke A. R. Bak, M. Corrette Ploem, Hanno L. Tan, M. T. Blom & Dick L. Willems - 2023 - Medicine, Health Care and Philosophy 26 (2):185-200.
    Developments in medical big data analytics may bring societal benefits but are also challenging privacy and other ethical values. At the same time, an overly restrictive data protection regime can form a serious threat to valuable observational studies. Discussions about whether data privacy or data solidarity should be the foundational value of research policies, have remained unresolved. We add to this debate with an empirically informed ethical analysis. First, experiences with the implementation of the General Data Protection Regulation (GDPR) within (...)
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  • Comparative Approaches to Biobanks and Privacy.Mark A. Rothstein, Bartha Maria Knoppers & Heather L. Harrell - 2016 - Journal of Law, Medicine and Ethics 44 (1):161-172.
    Laws in the 20 jurisdictions studied for this project display many similar approaches to protecting privacy in biobank research. Although few have enacted biobank-specific legislation, many countries address biobanking within other laws. All provide for some oversight mechanisms for biobank research, even though the nature of that oversight varies between jurisdictions. Most have some sort of controlled access system in place for research with biobank specimens. While broad consent models facilitate biobanking, countries without national or federated biobanks have been slow (...)
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