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  1. Genomic privacy, identity and dignity.Shlomo Cohen & Ro'I. Zultan - 2022 - Journal of Medical Ethics 48:317-322.
    Significant advancements towards a future of big data genomic medicine, associated with large-scale public dataset repositories, intensify dilemmas of genomic privacy. To resolve dilemmas adequately, we need to understand the relative force of the competing considerations that make them up. Attitudes towards genomic privacy are complex and not well understood; understanding is further complicated by the vague claim of ‘genetic exceptionalism’. In this paper, we distinguish between consequentialist and non-consequentialist privacy interests: while the former are concerned with harms secondary to (...)
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  • An effective multisource informed consent procedure for research and clinical practice: an observational study of patient understanding and awareness of their roles as research stakeholders in a cancer biobank. [REVIEW]Silvia Cervo, Jane Rovina, Renato Talamini, Tiziana Perin, Vincenzo Canzonieri, Paolo De Paoli & Agostino Steffan - 2013 - BMC Medical Ethics 14 (1):30.
    Efforts to improve patients’ understanding of their own medical treatments or research in which they are involved are progressing, especially with regard to informed consent procedures. We aimed to design a multisource informed consent procedure that is easily adaptable to both clinical and research applications, and to evaluate its effectiveness in terms of understanding and awareness, even in less educated patients.
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  • Gender Transition: Is There a Right to Be Forgotten?Mónica Correia, Guilhermina Rêgo & Rui Nunes - 2021 - Health Care Analysis 29 (4):283-300.
    The European Union faced high risks from personal data proliferation to individuals’ privacy. Legislation has emerged that seeks to articulate all interests at stake, balancing the need for data flow from EU countries with protecting personal data: the General Data Protection Regulation. One of the mechanisms established by this new law to strengthen the individual’s control over their data is the so-called “right to be forgotten”, the right to obtain from the controller the erasure of records. In gender transition, this (...)
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  • Privacy and property in the biobank context.Lars Oystein Ursin - 2010 - HEC Forum 22 (3):211-224.
    A research biobank is a collection of personal health and lifestyle information, including genetic samples of yet unknown but possibly large information potential about the participant. For the participants, the risk of taking part is not bodily harm but infringements of their privacy and the harmful consequences such infringements might have. But what do we mean by privacy? Which harms are we talking about? To address such questions we need to get a grip on what privacy is all about and (...)
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  • Privacy revisited? Old ideals, new realities, and their impact on biobank regimes.Arndt Bialobrzeski, Jens Ried & Peter Dabrock - 2011 - Poiesis and Praxis 8 (1):9-24.
    Biobanks, collecting human specimen, medical records, and lifestyle-related data, face the challenge of having contradictory missions: on the one hand serving the collective welfare through easy access for medical research, on the other hand adhering to restrictive privacy expectations of people in order to maintain their willingness to participate in such research. In this article, ethical frameworks stressing the societal value of low-privacy expectations in order to secure biomedical research are discussed. It will turn out that neither utilitarian nor communitarian (...)
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