The right to remain in ignorance about genetic information--can such a right be defended in the name of autonomy?

N Z Med J. 2005 Aug 12;118(1220):U1611.


Within the field of medicine, it has become widely accepted that respecting the autonomy of individuals justifies their right to know. More recently, commentators have asked whether such respect also justifies an individual's right not to know; that is, their right to remain in ignorance. In this paper, I examine what the concept of autonomy entails and whether one is justified in exercising a right not to know genetic information about oneself in the name of autonomy. An important distinction is drawn between autonomous choices generally and autonomous choices about how we shall conduct our lives. Against this theoretical discussion, I consider two hypothetical cases. I conclude by claiming that ignorance cannot be justified in the name of autonomy, and furthermore that where genetic information is pertinent to one's future autonomy, one cannot exercise a right not to know.

Publication types

  • Case Reports

MeSH terms

  • Adult
  • Attitude to Health
  • Breast Neoplasms / genetics
  • Confidentiality / ethics
  • Decision Making
  • Disclosure / ethics*
  • Female
  • Genetic Carrier Screening
  • Genetic Predisposition to Disease*
  • Genetic Techniques
  • Health Knowledge, Attitudes, Practice
  • Humans
  • Huntington Disease / genetics
  • Male
  • Moral Obligations
  • Patient Rights / ethics*
  • Personal Autonomy*
  • Physician-Patient Relations