title: How Should Health Data Be Used?
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.
authors.forename: Bonnie
authors.initials: B
authors.lastname: Kaplan
mesh_terms: D003132:Commerce / Q000941:ethics*; D003219:Confidentiality / Q000941:ethics*; D057225:Data Mining / Q000941:ethics*; D003695:Delivery of Health Care / Q000941:ethics*; D011307:Drug Prescriptions; D057286:Electronic Health Records / Q000941:ethics*; D005062:European Union; D006801:Humans; D033181:Information Dissemination / Q000941:ethics*; D010067:Ownership / Q000941:ethics*; D018907:Privacy; D012941:Social Responsibility; D006113:United Kingdom; D014481:United States
keywords: Ex Parte Source Informatics Ltd.; R v. Department of Health; Sorrell v. IMS Health Inc.; big data; confidentiality; data mining; health data privacy; health records; pharmaceutical marketing; secondary use