Boddington, Paula (2016) Big data, small talk: lessons from the ethical practices of interpersonal communication for the management of biomedical big data. In: The Ethics of Biomedical Big Data. Law, Governance and Technology Series, 29 (29). Springer, pp. 277-305. ISBN 9783319335230

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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.

Item Type:	Book Section
Identifier:	10.1007/978-3-319-33525-4_13
Keywords:	Ethical issue, social science research, data subject, ethical question, contextual integrity
Subjects:	Computing > Information management Medicine and health
Related URLs:	Publisher Publisher
Depositing User:	Paula Boddington
Date Deposited:	29 Sep 2021 13:39
Last Modified:	29 Sep 2021 13:45
URI:	https://repository.uwl.ac.uk/id/eprint/8283

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