How Should Health Data Be Used?

BONNIE KAPLAN
2016 Cambridge Quarterly of Healthcare Ethics  
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, theSorrellcase in the U.S. and theSourcecase 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
more » ... ublic 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.
doi:10.1017/s0963180115000614 pmid:26957456 fatcat:2fz2ekcgg5ghzdkpot4sajzsnu