Familial Cancer

, Volume 9, Issue 1, pp 27–35 | Cite as

The challenge of developmentally appropriate care: predictive genetic testing in young people for familial adenomatous polyposis

  • Rony E. Duncan
  • Lynn Gillam
  • Julian Savulescu
  • Robert Williamson
  • John G. Rogers
  • Martin B. Delatycki
Article

Abstract

Predictive genetic tests for familial adenomatous polyposis (FAP) are routinely offered to young people during early adolescence. While this is not controversial, due to the medical benefit conferred by the test, it is nonetheless challenging as a consequence of the stage of life of the young people, and the simultaneous involvement of multiple family members. Despite these challenges, it is possible to ensure that the test is offered in such a way that it actively acknowledges and facilitates young people’s developing autonomy and psychosocial well-being. In this paper we present findings from ten in-depth interviews with young people who have undergone predictive genetic testing for FAP (four male, six female; five gene-positive, five gene-negative; aged 10–17 years at the time of their predictive test; aged 12–25 years at the time of their research interview). We present five themes that emerged from the interviews which highlight key ethical challenges associated with such testing. These are: (1) the significance of the test; (2) young people’s lack of involvement in the decision to be tested; (3) young people’s limited understanding; (4) provision of the blood test at the first visit; and (5) group testing of family members. We draw on these themes to make eight recommendations for future practice. Together, these recommendations highlight the importance of providing developmentally appropriate care to young people undergoing predictive genetic testing for FAP.

Keywords

Genetic predisposition testing Child Adolescent Qualitative research Ethics Familial adenomatous polyposis Informed consent 

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Copyright information

© Springer Science+Business Media B.V. 2009

Authors and Affiliations

  • Rony E. Duncan
    • 1
    • 2
    • 3
    • 4
    • 5
  • Lynn Gillam
    • 1
    • 5
  • Julian Savulescu
    • 6
  • Robert Williamson
    • 1
    • 3
  • John G. Rogers
    • 7
  • Martin B. Delatycki
    • 1
    • 3
    • 4
    • 7
  1. 1.Murdoch Children’s Research InstituteParkvilleAustralia
  2. 2.Centre for Adolescent Health, Murdoch Childrens Research InstituteRoyal Children’s HospitalParkvilleAustralia
  3. 3.Department of PaediatricsUniversity of MelbourneMelbourneAustralia
  4. 4.The Bruce Lefroy Centre for Genetic Health ResearchMurdoch Childrens Research InstituteParkvilleAustralia
  5. 5.Children’s Bioethics Centre, Murdoch Childrens Research InstituteRoyal Children’s HospitalParkvilleAustralia
  6. 6.Oxford Uehiro Centre for Practical EthicsUniversity of OxfordOxfordUnited Kingdom
  7. 7.Genetic Health Services VictoriaRoyal Children’s HospitalParkvilleAustralia

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