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The genetic testing of children

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The Ethics of Genetic Screening

Abstract

The importance of genetic diseases in childhood has grown over the course of this century as that of infectious diseases and malnutrition has diminished, at least in developed countries. Accordingly, many of the children now requiring medical attention are recognised as suffering from genetic conditions. Making the diagnosis of a genetic disorder in an affected child is therefore a standard clinical activity. Establishing such a diagnosis has traditionally depended upon finding evidence of the disease process but is increasingly turning to genetic investigations that identify the underlying, genetic cause of the disorder. Such genetic tests can be carried out on any tissue and at any age, from conception onwards, because they do not depend upon the condition having manifested itself in any way. It is therefore possible to identify healthy children who will, in the future, develop a genetic disease; it is also possible to identify those who are healthy carriers of a disease which will never affect them but which may be of relevance to their own future children.

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References

  • Alderson, P., 1993. Children’s consent to surgery, Open University Press, Buckingham, England and Pennsylvania, USA.

    Google Scholar 

  • American Society of Human Genetics/American College of Medical Genetics, 1995. `Report. Points to consider, ethical, legal and psychological implications of genetic testing in children and adolescents’, American Journal of Human Genetics, 57, pp. 1233–1241.

    Google Scholar 

  • Bachman, R.P. et al., 1993. `Compliance with childhood cholesterol screening among members of a prepaid health plan’, American Journal of Diseases of Children, 147, pp. 382–385.

    PubMed  CAS  Google Scholar 

  • Ball, D. et al., 1994. `Predictive testing in adults and children’, in A. Clarke (ed), Genetic Counselling, Practice and Principles, Routledge, London, pp. 63–94.

    Google Scholar 

  • Bergman, A.B. and Stamm, Si.,. 1967. `The morbidity of cardiac nondisease in schoolchildren’, New England Journal of Medicine, 276, pp. 1008–1013.

    Article  PubMed  CAS  Google Scholar 

  • Billings, P.R., 1992. `Discrimination as a consequence of genetic testing’, American Journal of Human Genetics, 30, pp. 476–482.

    Google Scholar 

  • Binedell, J. et al., 1996. ‘Huntington’s disease predictive testing, the case for an assessment approach to requests from adolescents’, Journal of Medical Genetics, 33, pp. 912–918.

    Article  PubMed  CAS  Google Scholar 

  • Bloch, M. and Hayden, M.R., 1990. `Opinion, Predictive testing for Huntington disease in childhood, challenges and implications’, American Journal of Human Genetics, 46, pp. 14.

    Google Scholar 

  • Bloch, M., 1992. `Predictive testing for Huntington disease in Canada, the experience of those receiving an increased risk, American Journal of Medical Genetics, 42, pp. 499–507.

    Google Scholar 

  • British Paediatric Association Ethics Advisory Committee, 1996. Testing children for late onset of genetic disorders, British Paediatric Association, London.

    Google Scholar 

  • Buckman, R., 1992. How To Break Bad News, a guide for health-care professionals, Papermac, London.

    Google Scholar 

  • Chapple, A. et al., 1996. `Predictive and carrier testing of children, professional dilemmas for clinical geneticists’, European Journal of Genetics in Society, 2, pp. 28–38.

    PubMed  Google Scholar 

  • Clarke, A., 1997. `Parents’ responses to predictive genetic testing in their children’, Journal of Medical Genetics, 34, p. 174.

    Article  PubMed  CAS  Google Scholar 

  • Clarke, A. and Harper, P.S., 1992. `Genetic testing for hypertrophic cardiomyopathy’, New England Journal of Medicine, 327, p. 1175.

    Article  PubMed  CAS  Google Scholar 

  • Clarke, A. and Hinter, F., 1996. `The genetic testing of children, a clinical perspective’, in T.M. Marteau and M.P.M. Richards (eds), The Troubled Helix: social and psychological implications of the new human genetics, Cambridge University Press, Cambridge, England, pp. 164–176.

    Chapter  Google Scholar 

  • Clayton, E.W., 1995. `Removing the shadow of the law from the debate about genetic testing of children’, American Journal of Medical Genetics, 57, pp. 630–634.

    Article  PubMed  CAS  Google Scholar 

  • Clinical Genetics Society, 1994. `Report of the Working Party on the Genetic Testing of Children’ (A.Clarke, chairman), Journal of Medical Genetics, 31, pp. 785–797.

    Google Scholar 

  • Codon, A-M. and Brandt, J., 1994. `Psychological costs and benefits of predictive testing for Huntington’s disease’, American Journal of Medical Genetics (Neuropsychiatric Genetics), 54, pp. 174–184.

    Google Scholar 

  • Craufurd, D. and Harris, R., 1986. `Ethics of predictive testing for Huntington’s chorea, the need for more information’, British Medical Journal, 293, pp. 249–251.

    Article  PubMed  CAS  Google Scholar 

  • Craufurd, D. et al, 1989. `Uptake of presymptomatic testing for Huntington’s disease’, Lancet, ii, pp. 603–5.

    Google Scholar 

  • Dalby, S., 1995. Genetics Interest Group response to the UK Clinical Genetics Society report `The genetic testing of children’, Journal of Medical Genetics, 32, pp. 490–491.

    Article  PubMed  CAS  Google Scholar 

  • European Community Huntington’s Disease Collaborative Study Group, 1993. `Ethical and social issues in presymptomatic testing for Huntington’s disease, a European Community collaborative study’, Journal of Medical Genetics, 30, pp. 1028–1035.

    Article  Google Scholar 

  • Fanos, J.H. and Johnson, J.P., 1995a,. `Perception of carrier status by cystic fibrosis siblings’, American Journal of Human Genetics, 57, pp. 431–438.

    Google Scholar 

  • Fanos, J.H. and Johnson, J.P., 1995b. `Barriers to carrier testing for adult cystic fibrosis sibs, the importance of not knowing’, American Journal of Medical Genetics, 59, pp. 85–91.

    Article  PubMed  CAS  Google Scholar 

  • Harper, P.S. and Clarke, A., 1990. `Should we test children for `adult’ genetic diseases?’ Lancet, 335, pp. 1205–6.

    Article  PubMed  CAS  Google Scholar 

  • Harper, P.S. and Clarke, A., 1993. `Screening for hypertrophic cardiomyopathy’, British Medical Journal, 306, pp. 859–860.

    Article  PubMed  CAS  Google Scholar 

  • Hoffmann, D.E. and Wulfsberg, E.A., 1995. `Testing children for genetic predispositions, is it in their interest?’, Journal of Law, Medicine and Ethics, 23, pp. 331–344.

    Article  CAS  Google Scholar 

  • Huggins, M. et al., 1992. `Predictive testing for Huntington Disease in Canada, Adverse effects and unexpected results in those receiving a decreased risk’, American Journal of Medical Genetics, 42, pp. 508–515.

    Article  PubMed  CAS  Google Scholar 

  • Kessler, S., 1988. `Invited essay on the psychological aspects of genetic counselling. V. Preselection, a family coping strategy in Huntington Disease’, American Journal of Medical Genetics, 31, pp. 617–621.

    Article  PubMed  CAS  Google Scholar 

  • Lawson, K. et al., 1996. `Adverse psychological events occurring in the first year after predictive testing for Huntington’s disease’, Journal of Medical Genetics, 33, pp. 856862.

    Google Scholar 

  • Lifshitz, F. and Moses, N., 1989. `Growth failure. A complication of dietary treatment of hypercholesterolemia’, American Journal of Diseases of Children, 143, pp. 537–542.

    PubMed  CAS  Google Scholar 

  • Michie, S., 1996. `Predictive genetic testing in children, paternalism or empiricism ?’ in T.M. Marteau and M.P.M. Richards (eds), The Troubled Helix, social and psychological implications of the new human genetics, Cambridge University Press, Cambridge, England, pp. 177–183.

    Google Scholar 

  • Michie, S. and Marteau, T.M., 1996. `Predictive genetic testing in children, the need for psychological research’, British Journal of Health Psychology, 1, pp. 3–16.

    Article  Google Scholar 

  • Michie, S. et al., 1996. `Parents’ responses to predictive genetic testing in their children, report of a single case study’, Journal of Medical Genetics, 33, pp. 313–318. Montgomery, J., 1993. `Consent to health care for children’, Journal of Child Law, 5, pp. 117–124.

    Google Scholar 

  • Montgomery, J., 1994. Rights and interests of children and those with mental handicap’, in A. Clarke (ed), Genetic Counselling, Principles and Practice, Routledge, London, pp. 208–222.

    Google Scholar 

  • Morris, M. et al., 1988. Adoption and genetic prediction for Huntington’s disease’, Lancet, ii, pp. 1069–70.

    Google Scholar 

  • Morris, M. et al., 1989. Problems in genetic prediction for Huntington’s disease’, Lancet, ii, pp. 601–3.

    Google Scholar 

  • Newman, R.T. et al., 1990. `The case against childhood cholesterol screening’, Journal of the American Medical Association, 264, pp. 3003–3005.

    Google Scholar 

  • Parsons, E.P. and Atkinson, P., 1992. `Lay constructions of genetic risk, Sociology of Health and Illness, 14, pp. 437–455.

    Google Scholar 

  • Parsons, E.P. and Atkinson, P., 1993. `Genetic risk and reproduction, Sociology Review, 41, pp. 679–706.

    Google Scholar 

  • Parsons, E.P. and Clarke, A., 1993. `Genetic risk, women’s understanding of carrier risk in Duchenne muscular dystrophy’, Journal of Medical Genetics, 30, pp. 562–566.

    Article  PubMed  CAS  Google Scholar 

  • Pelias M.Z., 1991. `Duty to disclose in medical genetics, a legal perspective’, American Journal of Medical Genetics, 39, pp. 347–354.

    Article  PubMed  Google Scholar 

  • Sharpe, N.F., 1993. `Presymptomatic testing for Huntington Disease, is there a duty to test those under the age of eighteen’, American Journal of Medical Genetics, 46, pp. 250–253.

    Article  PubMed  CAS  Google Scholar 

  • Thelin, T. et al., 1985. `Psychological consequences of neo-natal screening for alpha-1- antitrypsin deficiency’, Acta Paediatrica Scandinavica, 74, pp. 787–793.

    Article  PubMed  CAS  Google Scholar 

  • Tibben, A. et al., 1992. `DNA-testing for Huntington’s disease in The Netherlands, a retrospective study on psychosocial effects. American Journal of Medical Genetics, 44, pp. 94–99.

    Google Scholar 

  • Tyler, A. et al., 1992. Presymptomatic testing for Huntington’s Disease in Wales 19871990’, British Journal of Psychiatry, 161, pp. 481–489.

    Article  PubMed  CAS  Google Scholar 

  • Wertz, D.C. et al., 1994. `Genetic testing for children and adolescents, who decides?’, Journal of the American Medical Association, 272, pp. 875–881.

    Article  PubMed  CAS  Google Scholar 

  • World Federation of Neurology, 1989. `Research Committee Research Group Ethical issues policy statement on Huntington’s disease molecular genetics predictive test’, Journal of Neurological Sciences, 94, pp. 327–332 and Journal of Medical Genetics, 1990. 27, pp. 34–38.

    Google Scholar 

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© 1999 Springer Science+Business Media Dordrecht

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Clarke, A. (1999). The genetic testing of children. In: Chadwick, R., Shickle, D., Ten Have, H., Wiesing, U. (eds) The Ethics of Genetic Screening. Springer, Dordrecht. https://doi.org/10.1007/978-94-015-9323-6_21

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  • DOI: https://doi.org/10.1007/978-94-015-9323-6_21

  • Publisher Name: Springer, Dordrecht

  • Print ISBN: 978-90-481-5178-3

  • Online ISBN: 978-94-015-9323-6

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