Big Data, Small Talk: Lessons from the Ethical Practices of Interpersonal Communication for the Management of Biomedical Big Data

Abstract

Biomedical big data raises various ethical issues, many of which concern tensions between the public sharing of information and the private control of personal information, and the status of the individual data subject. Close attention to the intersection between issues in epistemology and in ethics is needed, and this chapter outlines divergent models of the transmission of information which give rise to different understandings of the ethics of communication. This chapter also draws on work in social sciences which examines a parallel area where ethically similar issues arise, the communication of personal and familial medical and genetic information. Analysis of a body of research draws attention to the situated and personal communication of knowledge, explaining how this generates ethical considerations which may clash with impersonal or system-driven understandings of data, and showing how individuals might display alternative ways of understanding their ethical responsibilities. Important ethical questions arise such as how, whom, and when to tell. Channels of communication may guide questions of ethical responsibility. These considerations emphasise the importance of context and are used to extend Nissenbaum’s notions of contextual integrity. The chapter also examines the question of the disempowerment of the data subject, and suggests that the changing patterns in the dissemination of biomedical data may provide individuals and groups with ways of acting which may help to redress fears of the disempowered data subject.