Bonnie Kaplan (2014), How Should Health Data Be Used? Privacy, Secondary Use, and Big Data Sales, ISPS Working Paper (Bioethics), ISPS14-025.
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.