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Where should we draw the line between quality of care and other ethical concerns related to medical registries and biobanks?

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Abstract

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.

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Acknowledgments

I am grateful to the research seminar at the Centre for Research Ethics & Bioethics for valuable comments on an earlier draft of this article. The research for this article was made possible by funding from the IMI project BT-CURE (Grant agreement No. 115142-1) and the BBMRI.se infrastructure project financed by the Swedish Research Council. The funders had no influence on the design and content of the article.

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  1. Department of Public Health and Caring Sciences, Centre for Research Ethics & Bioethics, Uppsala University, P.O. Box 564, 751 22, Uppsala, Sweden

    Mats Hansson

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  1. Mats Hansson
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Correspondence to Mats Hansson.

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Hansson, M. Where should we draw the line between quality of care and other ethical concerns related to medical registries and biobanks?. Theor Med Bioeth 33, 313–323 (2012). https://doi.org/10.1007/s11017-012-9229-x

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  • DOI: https://doi.org/10.1007/s11017-012-9229-x

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