Skip to main content

Advertisement

Log in

Genetic testing in children and young people

  • Published:
Familial Cancer Aims and scope Submit manuscript

Abstract

Guidelines on childhood genetic testing are in broad agreement that where there are no ‘urgent medical reasons’, presymptomatic and predictive testing for adult-onset disorders, and carrier testing should be postponed until a child is able to give his or her own consent, either as a competent young person, or as an adult. This paper explores situations in which this requirement can be in tension with genetics professionals’ and others’ judgement of what is in the child’s best interests. It concludes that whilst the guidelines do reflect a broad agreement that in most cases testing children for adult onset conditions or carrier status is inappropriate, there are at least some situations in which testing may be thought by genetics professionals to be appropriate. Many of the morally relevant features of such cases will often be context specific, i.e. to do with the child’s family and other relationships or other features of the local context and this suggests that any revision of the guidelines on genetics testing in childhood will need to take into account the need to allow space for the utilisation of judgement by genetics professionals about whether genetic testing is in the child’s best interests. In making such judgements the genetics professional will need to pay close attention to the views of the child’s parents and do all they can to facilitate input from the child him or herself.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Notes

  1. There was rather less agreement about testing for childhood onset disorders where no preventative or therapeutic measures are available.

References

  1. Alderson P (1998) Talking to children—and talking with them. In: Clarke A (ed) The genetic testing of children. Bios, Oxford

    Google Scholar 

  2. Borry P, Stultiens L, Nys H, Cassiman JJ, Dierckx K (2006) Presymptomatic and predictive genetic testing in minors: a systematic review of guidelines and position papers. Clin Genet 70:374–381

    Article  CAS  PubMed  Google Scholar 

  3. Borry P, Fryns JP, Schotsmans P, Dierickx K (2006) Carrier testing in minors: a systematic review of guidelines and position papers. Eur J Hum Genet 14(2):133–138

    Article  PubMed  Google Scholar 

  4. Borry P, Nys H, Dierickx K (2007) Carrier testing in minors: conflicting views. Nat Rev Genet 8:p828

    Article  Google Scholar 

  5. Clarke A (ed) (1998) The genetic testing of children. Bios, Oxford

    Google Scholar 

  6. Clarke A, Gaff C (2008) Challenges in the genetic testing of children for familial cancers. Arch Dis Child 93(11):911–914

    Article  PubMed  Google Scholar 

  7. Davis DS (1997) Genetic dilemmas and the child’s right to an open future. Rutger’s Law J 28:549–592

    CAS  Google Scholar 

  8. Duncan RE (2004) Predictive genetic testing in young people: when is it appropriate? J Paediatr Child Health 40:593–595

    Article  CAS  PubMed  Google Scholar 

  9. Jansen L, Friedman Ross L (2001) The ethics of pre-adoption genetic testing. Am J Med Genet 104:214–228

    Article  CAS  PubMed  Google Scholar 

  10. Järvinen O, Aaltob A, Lehesjokic A, Lindlöfe M, Söderlingf I, Uutelag A, Kääriäinen H (1999) Carrier testing of children for two X-linked diseases in a family based setting: a retroscpective long term psychosocial evaluation. J Med Genet 36:615–620

    PubMed  Google Scholar 

  11. Parsons EP et al (2003) Implications of carrier identification in newborn screening for cystic fibrosis. Ach Dis Child Fetal Neonatal Ed 88:F467–F471

    Article  CAS  Google Scholar 

  12. Savulescu J (2001) Predictive genetic testing in children. Med J Aust 175:379–381

    CAS  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Michael Parker.

Rights and permissions

Reprints and permissions

About this article

Cite this article

Parker, M. Genetic testing in children and young people. Familial Cancer 9, 15–18 (2010). https://doi.org/10.1007/s10689-009-9272-6

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10689-009-9272-6

Keywords

Navigation