Theoretical Medicine and Bioethics 29 (4):267-285 (2008)
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Abstract |
What is privacy? What does privacy mean in relation to biobanking, in what way do the participants have an interest in privacy, (why) is there a right to privacy, and how should the privacy issue be regulated when it comes to biobank research? A relational view of privacy is argued for in this article, which takes as its basis a general discussion of several concepts of privacy and attempts at grounding privacy rights. In promoting and protecting the rights that participants in biobank research might have to privacy, it is argued that their interests should be related to the specific context of the provision and reception of health care that participation in biobank research is connected with. Rather than just granting participants an exclusive right to or ownership of their health information, which must be waived in order to make biobank research possible, the privacy aspect of health information should be viewed in light of the moral rights and duties that accompany any involvement in a research based system of health services.
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Keywords | Privacy Autonomy Biobank research Research ethics Health information |
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DOI | 10.1007/s11017-008-9079-8 |
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Citations of this work BETA
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.
Gender Transition: Is There a Right to Be Forgotten?Mónica Correia, Guilhermina Rêgo & Rui Nunes - 2021 - Health Care Analysis 29 (4):283-300.
Genomic Privacy, Identity and Dignity.Shlomo Cohen & Ro'I. Zultan - 2022 - Journal of Medical Ethics 48 (5):317-322.
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.
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