How Should Health Data Be Used? Privacy, Secondary Use, and Big Data Sales
Yale University Institute for Social and Policy Studies Working Paper No. 14-025 Cambridge Quarterly of Healthcare Ethics 25(2): 312-329, 2016
38 Pages Posted: 14 Oct 2014 Last revised: 25 Oct 2018
Date Written: August 1, 2014
Abstract
Electronic health records, data sharing, big data, data mining, and secondary use are enabling exciting opportunities for improving health and health care while also exacerbating privacy concerns. Two court cases about selling prescription data raise questions of what constitutes “privacy” and “public interest;” they present 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 v. the aggregate or the public interest, research (or, more broadly, innovation) v. privacy, individual v. institutional power, identification v. identity and authentication, and virtual v. real individuals and contextualized information. Transparency and accountability are needed for assessing appropriate, judicious, and ethical data use and users, as some are more compatible with societal norms and values than others.
Keywords: Confidentiality, Health Data Privacy, Ethics, Health Records, Secondary Use, Big Data, Data Mining, Pharmaceutical Marketing, Health Data Sale, De-Identification, HIPAA, EU Data Protection Directive, Sorrell v. IMS Health, Inc., R v. Department of Health, Ex Parte Source Informatics Ltd.
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