Familial Cancer

, Volume 9, Issue 1, pp 23–25 | Cite as

Are guidelines for genetic testing of children necessary?

  • Angela FenwickEmail author


There is now a plethora of guidance on the genetic testing of children. This paper explores the recommendation that childhood testing for adult on-set conditions should be delayed until the child can make up their own mind. It analyses the underpinning arguments used to support this position and asks whether, given some of the problems with these, the guidelines are really necessary.


Autonomy Best interests Children Genetic testing Guidelines 


  1. 1.
    Borry P, Stultiens L, Nys H et al (2006) Presymptomatic and predictive genetic testing in minors: a systematic review of guidelines and position Papers. Clin Genet 70(5):374–381CrossRefPubMedGoogle Scholar
  2. 2.
    Feinberg J (1992) A child’s right to an open future. In: Feinberg J (ed) Freedom and fulfillment, philosophical essays. Princeton University Press, Princeton, NJ, pp 76–97Google Scholar
  3. 3.
    Harris J, Keywood K (2001) Ignorance, information and autonomy. Theor Med 22:415–436CrossRefGoogle Scholar
  4. 4.
    Pelias MK (2006) Genetic testing of children for adult-onset diseases: is testing in the child’s best interest? Mt Sinai J Med 73(3):605–608PubMedGoogle Scholar
  5. 5.
    Rhodes R (2006) Why test children for adult-onset genetic diseases? Mt Sinai J Med 73(3):609–616PubMedGoogle Scholar
  6. 6.
    Wilfond B, Ross LF (2009) From genetics to genomics: ethics, policy and decision making. J Pediatr Psychol 34(6):639–647CrossRefPubMedGoogle Scholar
  7. 7.
    McConkie-Rosell A, Spiridigliozzi GA (2004) “Family matters”: a conceptual framework for genetic testing in children. J Genet Couns 13(1):9–29CrossRefPubMedGoogle Scholar
  8. 8.
    Parker M, Lucassen L (2004) Genetic information: a joint account? BMJ 329:165–167CrossRefPubMedGoogle Scholar
  9. 9.
    UK Clinical Genetics Society (1994) The genetic testing of children. J Med Genet 3:785–797Google Scholar
  10. 10.
    Malpas PJ (2009) Predictive genetic testing for children for adult-onset iseases and psychological harm. J Med Ethics 34:275–278CrossRefGoogle Scholar
  11. 11.
    Robertson S, Savulescu J (2001) Is there a case in favour of genetic testing in young children? Bioethics 12(1):26–49CrossRefGoogle Scholar
  12. 12.
    Duncan R, Savulescu J, Gillam L (2005) An international survey of predictive genetic testing in children for adult onset conditions. Genet Med 7(6):390–396CrossRefPubMedGoogle Scholar
  13. 13.
    European Society of Human Genetics (2008) Genetic testing in asymptomatic minors: recommendations of the European Society of Human Genetics. Available via ESHG Cited 1/3/2009
  14. 14.
    General Medical Council (2008) Consent: patients and doctors making decisions together. GMC, LondonGoogle Scholar

Copyright information

© Springer Science+Business Media B.V. 2009

Authors and Affiliations

  1. 1.School of Medicine, University of SouthamptonSouthamptonHampshire

Personalised recommendations