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Consent and confidentiality in the light of recent demands for data sharing

Research output: Contribution to journalJournal article

Published
<mark>Journal publication date</mark>03/2017
<mark>Journal</mark>Biometrical Journal
Issue number2
Volume59
Number of pages11
Pages (from-to)240-250
Publication statusPublished
Early online date3/02/16
Original languageEnglish

Abstract

Many attempts have been made to formalize ethical requirements for research. Among the most prominent mechanisms are informed consent requirements and data protection regimes. These mechanisms, however, sometimes appear as obstacles to research. In this opinion paper, we critically discuss conventional approaches to research ethics that emphasize consent and data protection. Several recent debates have highlighted other important ethical issues and underlined the need for greater openness in order to uphold the integrity of health-related research. Some of these measures, such as the sharing of individual-level data, pose problems for standard understandings of consent and privacy. Here, we argue that these interpretations tend to be overdemanding: They do not really protect research subjects and they hinder the research process. Accordingly, we suggest another way of framing these requirements. Individual consent must be situated alongside the wider distribution of knowledge created when the actions, commitments, and procedures of researchers and their institutions are opened to scrutiny. And instead of simply emphasizing privacy or data protection, we should understand confidentiality as a principle that facilitates the sharing of information while upholding important safeguards. Consent and confidentiality belong to a broader set of safeguards and procedures to uphold the integrity of the research process.

Bibliographic note

This is the peer reviewed version of the following article:Williams, G. and Pigeot, I. (2017), Consent and confidentiality in the light of recent demands for data sharing. Biom. J., 59: 240–250. doi:10.1002/bimj.201500044 which has been published in final form at http://onlinelibrary.wiley.com/doi/10.1002/bimj.201500044/abstract This article may be used for non-commercial purposes in accordance With Wiley Terms and Conditions for self-archiving.