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Philosophy & Technology

, Volume 32, Issue 1, pp 111–134 | Cite as

Trust and Justice in Big Data Analytics: Bringing the Philosophical Literature on Trust to Bear on the Ethics of Consent

  • J. Patrick WoolleyEmail author
Research Article

Abstract

Much bioethical literature and policy guidances for big data analytics in biomedical research emphasize the importance of trust. It is essential that potential participants trust so they will allow their data to be used to further research. However, comparatively, little guidance is offered as to what trustworthy oversight mechanisms are, or how policy should support them, as data are collected, shared, and used. Generally, “trust” is not characterized well enough, or meaningfully enough, for the term to be systematically applied in policy development. Yet points made in the philosophical literature on trust can help. They allow us, not only to better distinguish the different ways the term “trust” may be interpreted, but also to better determine how different approaches to trust can align with policy and governance—in what ways they may relate to key bioethical concepts and related laws, and in what ways they can help to balance individual and group interests in data sharing. This article draws from the philosophical literature on trust to identify a relationship among consent, trust, and justice. Specifically, parallels are drawn between “character-trustworthiness” and “natural justice,” a set of widely held legal safeguards intended to ensure decision-makers follow a pattern of procedural fairness which protects the rights of the individual and thereby maintains public confidence in the decision-making process. Relevance to traditional bioethical principles, established laws, and consent procedures are addressed throughout. In conclusion, policy actions are suggested.

Keywords

Big data Biomedicine Consent ELSI Ethics Human rights Information technologies Law Policy Regulation Trust UNESCO 

Notes

Acknowledgments

This work was made possible by a Fellowship at Harris Manchester College, University of Oxford and the Center for Health, Law, and Emerging Technologies (HeLEX), Nuffield Department of Population Health, University of Oxford. My thanks go to Tom Simpson for sharing his unpublished essay discussed in this article, and to the reviewers of this article whose feedback helped to improve it substantially.

Compliance with Ethical Standards

Conflict of Interest

The author is a member of the Global Alliance for Genomics and Health and has helped produce some of the policy documents and ICT tools highlighted in the article.

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Copyright information

© Springer Science+Business Media B.V. 2017

Authors and Affiliations

  1. 1.Center for Health, Law, and Emerging Technologies (HeLEX), Nuffield Department of Population HealthUniversity of OxfordOxfordUK

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