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Where should we draw the line between quality of care and other ethical concerns related to medical registries and biobanks?
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Public Health and Caring Sciences, Centre for Research Ethics and Bioethics.
2012 (English)In: Theoretical Medicine and Bioethics, ISSN 1386-7415, E-ISSN 1573-1200, Vol. 33, no 4, 313-323 p.Article in journal (Refereed) Published
Abstract [en]

Together with large biobanks of human samples, medical registries with aggregated data from many clinical centers are vital parts of an infrastructure for maintaining high standards of quality with regard to medical diagnosis and treatment. The rapid development in personalized medicine and pharmaco-genomics only underscores the future need for these infrastructures. However, registries and biobanks have been criticized as constituting great risks to individual privacy. In this article, I suggest that quality with regard to diagnosis and treatment is an inherent, morally normative requirement of health care, and argue that quality concerns in this sense may be balanced with privacy concerns.

Place, publisher, year, edition, pages
2012. Vol. 33, no 4, 313-323 p.
Keyword [en]
Quality of care, Medical registries, Biobanks, Privacy
National Category
Medical and Health Sciences
URN: urn:nbn:se:uu:diva-181423DOI: 10.1007/s11017-012-9229-xISI: 000307254300006OAI: oai:DiVA.org:uu-181423DiVA: diva2:557387
Available from: 2012-09-27 Created: 2012-09-24 Last updated: 2012-09-27Bibliographically approved

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