Genetic Testing of Children

It is generally well recognized and accepted that opportunities exist to test individuals for genetic disorders; however, the application of such genetic testing during childhood is subject to controversy and debate.

Keywords: genetic testing; childhood testing; predictive test; presymptomatic test; carrier test; adult-onset disorders; consent

 References
    Alderson P (1992) In the genes or in the stars? Children's competence to consent. Journal of Medical Ethics 18: 119–124.
    book Alderson P (1993) Children's Consent to Surgery. Milton Keynes, UK: Open University Press.
    book Binedell J (1998) "Adolescent requests for predictive genetic tests". In: Clarke A (ed.) The Genetic Testing of Children, chap. 11, pp. 123–132. Oxford, UK: BIOS Scientific Publishers.
    Binedell J, Soldan JR, Scourfield J and Harper PS (1996) Huntington's disease predictive testing: the case for an assessment approach to requests from adolescents. Journal of Medical Genetics 33: 912–918.
    Clarke A (1994) The genetic testing of children. Working Party of the Clinical Genetics Society (UK). Journal of Medical Genetics 31: 785–797.
    Codori A-M, Petersen GM, Boyd PA, Brandt J and Giardello FM (1996) Genetic testing for cancer in children. Archives of Pediatric and Adolescent Medicine 150: 1131–1138.
    Craufurd D and Harris R (1986) Ethics of predictive testing for Huntington's chorea: the need for more information. British Medical Journal 293: 249–251.
    Dalby S (1995) Genetics Interest Group response to the UK Clinical Genetics Society report ‘The genetic testing of children’. Journal of Medical Genetics 32: 490–491.
    Grosfeld FJM, Lips CJM, Beemer FA, et al. (1997) Psychological risks of genetically testing children for a hereditary cancer syndrome. Patient Education and Counseling 32: 63–67.
    Harper PS and Clarke A (1990) Should we test children for ‘adult’ genetic diseases? Lancet 335: 1205–1206.
    Hoffmann DE and Wulfsberg EA (1995) Testing children for genetic predispositions: is it in their best interest? Journal of Law, Medicine and Ethics 23: 331–344.
    Michie S and Marteau TM (1996) Predictive genetic testing in children: the need for psychological research. British Journal of Health and Psychology 1: 3–16.
    Michie S, McDonald V, Bobrow M, McKeown C and Marteau T (1996) Parents' responses to predictive genetic testing in their children: report of a single case study. Journal of Medical Genetics 33: 313–318.
    Reder P and Fitzpatrick G (1998) What is sufficient understanding? Clinical Child Psychology and Psychiatry 3: 103–113.
 Further Reading
    American Society of Human Genetics/American College of Medical Genetics (1995) ASHG/ACMG Report. Points to consider: ethical, legal and psychosocial implications of genetic testing in children and adolescents. American Journal of Human Genetics 57: 1233–1241.
    Balfour-Lynn I, Madge S and Dinwiddie R (1995) Testing carrier status in siblings of patients with cystic fibrosis. Archives of Disease in Childhood 72: 167–168.
    book Clarke A (ed.) (1998) The Genetic Testing of Children. Oxford, UK: BIOS Scientific Publishers.
    Davis DS (1998) Discovery of children's carrier status for recessive genetic disease: some ethical issues. Genetic Testing 2: 323–327.
    other Gillick versus West Norfolk and Wisbech Health Authority (1985) 3 All ER 402.
    Mitchell J, Capua A, Clow C and Scriver CR (1996) Twenty-year outcome analysis of genetic screening programs for Tay–Sachs and -thalassaemia disease carriers in high schools. American Journal of Human Genetics 59: 793–798.
    Mitchell J, Scriver CR, Clow C and Kaplan F (1993) What young people think and do when the option for cystic fibrosis carrier screening is available. Journal of Medical Genetics 30: 538–542.
    Welkenhuysen M, Evers-Kiebooms G, Decruyenaere M, et al. (1996) Adolescents' attitude towards carrier testing for cystic fibrosis and its relative stability over time. European Journal of Human Genetics 4: 52–62.
    Wertz DC, Fanos JH and Reilly PR (1994) Genetic testing for children and adolescents. Who decides? Journal of the American Medical Association 272: 875–881.
    Wertz DC and Reilly PR (1997) Laboratory policies and practices for the genetic testing of children: a survey of the Helix network. American Journal of Human Genetics 61: 1163–1168.
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How to Cite close
Procter, Annie(Sep 2006) Genetic Testing of Children. In: eLS. John Wiley & Sons Ltd, Chichester. http://www.els.net [doi: 10.1002/9780470015902.a0005620]