Consent to epistemic interventions: a contribution to the debate on the right (not) to know
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The debate on the ‘right (not) to know’ has simmered on for over 30 years. New examples where a right to be informed is contrasted to a right to be kept in ignorance occasionally surface and spark disagreement on the extent to which patients and research subjects have a right to be self-determining concerning the health related information they receive. Up until now, however, this debate has been unsatisfactory with regard to the question what type of rights—if any—are in play here and to what extent they can provide a normative basis for informed consent. This paper provides an analysis of informed consent in the context of ‘epistemic interventions’: interventions which involve the communication of (health-related) information. First, I offer an analysis of the concept of a ‘right not to know’ in the context of consent to epistemic interventions. I argue that the scope of the consent is determined by the extent to which this intervention can be seen as an infringement of the private sphere. After that I show how this analysis affects the scope and standards of informed consent.
KeywordsRight (not) to know Informed consent Unsolicited information Epistemic interventions Genetics Genomics
I wish to thank Marcel Verweij, Annemarie Kalis and Marcus Düwell for comments on earlier drafts of this paper and for their helpful suggestions. Also I am grateful to the Practical Philosophy Colloquium of the Department of Philosophy at Utrecht University and the OZSW Ethics and Health working group for giving me the opportunity to present this paper. Most of all I am deeply indebted to Anne van Bergen, for her devastating criticism and for many constructive sparring sessions.
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