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  1. Protecting Participants in Genomic Research: Understanding the “Web of Protections” Afforded by Federal and State Law.Leslie E. Wolf, Catherine M. Hammack, Erin Fuse Brown, Kathleen M. Brelsford & Laura M. Beskow - 2020 - Journal of Law, Medicine and Ethics 48 (1):126-141.
    Researchers now commonly collect biospecimens for genomic analysis together with information from mobile devices and electronic health records. This rich combination of data creates new opportunities for understanding and addressing important health issues, but also intensifies challenges to privacy and confidentiality. Here, we elucidate the “web” of legal protections for precision medicine research by integrating findings from qualitative interviews with structured legal research and applying them to realistic research scenarios involving various privacy threats.
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  • Rethinking the Importance of the Individual within a Community of Data.Kayte Spector-Bagdady & Jonathan Beever - 2020 - Hastings Center Report 50 (4):9-11.
    The Covid‐19 crisis has underscored the importance of the collection and analysis of clinical and research data and specimens for ongoing work. The federal government recently completed a related revision of the human subjects research regulations, founded in the traditional principles of research ethics, but in this commentary, we argue that the analysis underpinning this revision overemphasized the importance of informed consent, given the low risks of secondary research. Governing the interests of a community is different from governing the interests (...)
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  • Promoting Ethical Deployment of Artificial Intelligence and Machine Learning in Healthcare.Kayte Spector-Bagdady, Vasiliki Rahimzadeh, Kaitlyn Jaffe & Jonathan Moreno - 2022 - American Journal of Bioethics 22 (5):4-7.
    The ethics of artificial intelligence and machine learning exemplify the conceptual struggle between applying familiar pathways of ethical analysis versus generating novel strategies. Mel...
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  • Controversies between regulations of research ethics and protection of personal data: informed consent at a cross-road.Eugenijus Gefenas, J. Lekstutiene, V. Lukaseviciene, M. Hartlev, M. Mourby & K. Ó Cathaoir - 2021 - Medicine, Health Care and Philosophy 25 (1):23-30.
    This paper explores some key discrepancies between two sets of normative requirements applicable to the research use of personal data and human biological materials: the data protection regime which follows the application of the European Union General Data Protection Regulation, and the Declaration of Helsinki, CIOMS guidelines and other research ethics regulations. One source of this controversy is that the GDPR requires consent to process personal data to be clear, concise, specific and granular, freely given and revocable and therefore has (...)
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  • Introduction.Carl H. Coleman - 2019 - Journal of Law, Medicine and Ethics 47 (2):189-193.
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