Consent to epistemic interventions: a contribution to the debate on the right (not) to know

Med Health Care Philos. 2016 Mar;19(1):103-10. doi: 10.1007/s11019-015-9650-9.


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.

Keywords: Epistemic interventions; Genetics; Genomics; Informed consent; Right (not) to know; Unsolicited information.

MeSH terms

  • Humans
  • Informed Consent / ethics*
  • Knowledge*
  • Patient Rights / ethics*
  • Personal Autonomy*
  • Philosophy, Medical