Is there a case in favour of predictive genetic testing in young children?

Bioethics. 2001 Feb;15(1):26-49. doi: 10.1111/1467-8519.00210.


Genetic testing has brought the ability to predict the onset of diseases many years before symptoms appear and the use of such predictive testing is now widespread. The medical fraternity has met the application of this practice to children with caution. The justification for their predominantly prohibitive stance has revolved around the lack of a readily identifiable medical benefit in the face of potential psychological harms to the child. We argue that predictive testing can have important psychosocial benefits and that the interests of the child have been construed too narrowly. Proponents of a prohibitive stance also argue that testing in childhood breaches the child's future right to make the same decision as an autonomous adult and to maintain this information as confidential. We argue that predictive genetic testing of children is not necessarily a violation of the child's future autonomy. Indeed, in some cases, such testing may facilitate the development of autonomy in the maturing child. We argue that parents are generally best placed to judge what is in their own child's overall interests, and that parental request for testing after appropriate genetic counselling should be respected unless there is clear evidence that the child will be harmed in an overall sense as a result of testing.

MeSH terms

  • Adolescent
  • Age of Onset
  • Beneficence
  • Child
  • Confidentiality
  • Empirical Research
  • Female
  • Genetic Predisposition to Disease
  • Genetic Testing* / psychology
  • Humans
  • Male
  • Parental Consent
  • Personal Autonomy
  • Practice Guidelines as Topic
  • Risk Assessment
  • Societies, Medical
  • United States