Research Ethics 11 (3):151-163 (2015)

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Stephan John Millett
Curtin University, Western Australia
Abstract
This paper argues that specific individual informed consent and other forms of consent predicated on a right to autonomy may not in all circumstances be appropriate for the establishment and use of large data sets of health information. We suggest that there are inherent failings in such an approach, shortcomings that we analyse below. We argue that individuals share an obligation to contribute their data, as doing so is cost-free and benefits accrue to the population as a whole. Large health data sets can be considered public goods – goods that are non-rival in consumption and in some cases non-exclusive in use – and contributing to these goods may be an obligation, the meeting of which allows citizens to invest in knowledge infrastructure. The approach argued for here is a variation of a communitarian ethic in which people have an obligation to contribute their data but have no correlative right to expect or receive an individual benefit
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DOI 10.1177/1747016115587964
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References found in this work BETA

The Theory and Practice of Autonomy.Gerald Dworkin - 1988 - Cambridge University Press.
Ethics: Inventing Right and Wrong.Fred Feldman & J. L. Mackie - 1979 - Philosophical Review 88 (1):134.
Informed Consent: Its History, Meaning, and Present Challenges.Tom L. Beauchamp - 2011 - Cambridge Quarterly of Healthcare Ethics 20 (4):515-523.
Rights.Leif Wenar - 2008 - Stanford Encyclopedia of Philosophy.

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