Ethical Reuse of Data from Health Care: Data, Persons and Interests

Abstract

Advances at the intersection of information technologies, data science, biomedical research and health care, have discomfiting implications for reliance on the conventional tools of data protection and information governance. A 2015 report from the Nuffield Council on Bioethics proposes an approach to the design and governance of data initiatives that is both dynamic and cooperative in order to address the fluctuating interests engaged by uses of data in which there is a public interest. This chapter develops elements of that approach to argue that organising data initiatives as social practices that respect certain principles can help to establish and meet morally reasonable expectations about data use, by grounding them in a dynamic relationship between social norms, individual freedoms and professional duties.