Privacy, Conﬁdentiality, and Justice
Journal of Social Philosophy 45(3): 408-431, 2014
25 Pages Posted: 14 Feb 2015 Last revised: 31 Mar 2015
Date Written: 2014
Data about public health issues such as HIV are being collected from many different sources and being used in many different ways. The traditional distinction that has been drawn with respect to data protection policies lies bet-ween identiﬁable data — protected by individual consent — and data that have been de-identiﬁed, not protected very much at all, except possibly against re-identiﬁcation. When identiﬁable data are sought for public health purposes, the ethical permissibility of their use is framed in terms of conﬂicts between individual rights and the public good. In this article, we have argued that it is a mistake to draw the primary ethical line between identiﬁable and de-identiﬁed data, and to see the primary ethical conﬂict as between individual rights and the public good. Instead, strategies must be developed to improve justice in the collection and use of data, whether identiﬁable or de-identiﬁed. We have suggested at least three such strategies: transparency, participant involvement, and reciprocal beneﬁts for those affected by data collection and use.
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