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How Should Health Data Be Used?

Privacy, Secondary Use, and Big Data Sales

Published online by Cambridge University Press:  09 March 2016

BONNIE KAPLAN
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Abstract:

Electronic health records, data sharing, big data, data mining, and secondary use are enabling exciting opportunities for improving health and healthcare while also exacerbating privacy concerns. Two court cases about selling prescription data, the Sorrell case in the U.S. and the Source case in the U.K., raise questions of what constitutes “privacy” and “public interest”; they present an opportunity for ethical analysis of data privacy, commodifying data for sale and ownership, combining public and private data, data for research, and transparency and consent. These interwoven issues involve discussion of big data benefits and harms and touch on common dualities of the individual versus the aggregate or the public interest, research (or, more broadly, innovation) versus privacy, individual versus institutional power, identification versus identity and authentication, and virtual versus real individuals and contextualized information. Transparency, flexibility, and accountability are needed for assessing appropriate, judicious, and ethical data uses and users, as some are more compatible with societal norms and values than others.

Keywords

confidentialityhealth data privacyhealth recordssecondary usebig datadata miningpharmaceutical marketingSorrell v. IMS Health Inc.R v. Department of Health, Ex Parte Source Informatics Ltd.
Type
Departments and Columns
Information
Cambridge Quarterly of Healthcare Ethics , Volume 25 , Issue 2 , April 2016 , pp. 312 - 329
Copyright
Copyright © Cambridge University Press 2016 

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References

Notes

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