title: Consent to epistemic interventions: a contribution to the debate on the right (not) to know.
abstract: 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.
authors.affiliation: Independent scholar, Kerkweg 15, 3513, VA, Utrecht, The Netherlands. n.nijsingh@gmail.com.
authors.forename: Niels
authors.identifier: http://orcid.org/0000-0002-5698-3566
authors.initials: N
authors.lastname: Nijsingh
mesh_terms: D006801:Humans; D007258:Informed Consent / Q000941:ethics*; D019359:Knowledge; D028701:Patient Rights / Q000941:ethics*; D026684:Personal Autonomy; D010686:Philosophy, Medical
keywords: Epistemic interventions; Genetics; Genomics; Informed consent; Right (not) to know; Unsolicited information