title: The challenge of developmentally appropriate care: predictive genetic testing in young people for familial adenomatous polyposis.
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.
authors.affiliation: Murdoch Children's Research Institute, Flemington Road, Parkville, VC, 3052, Australia. rony.duncan@mcri.edu.au
authors.forename: Rony E
authors.initials: RE
authors.lastname: Duncan
authors.forename: Lynn
authors.initials: L
authors.lastname: Gillam
authors.forename: Julian
authors.initials: J
authors.lastname: Savulescu
authors.forename: Robert
authors.initials: R
authors.lastname: Williamson
authors.forename: John G
authors.initials: JG
authors.lastname: Rogers
authors.forename: Martin B
authors.initials: MB
authors.lastname: Delatycki
mesh_terms: D011125:Adenomatous Polyposis Coli / Q000235:genetics*; D000293:Adolescent; D001294:Attitude to Health; D003111:Colonic Polyps / Q000188:drug therapy / Q000453:epidemiology / Q000235:genetics; D005192:Family Health; D005260:Female; D005544:Forecasting; D005817:Genetic Counseling / Q000706:statistics & numerical data*; D020022:Genetic Predisposition to Disease / Q000235:genetics*; D005820:Genetic Testing; D033161:Government Regulation; D006801:Humans; D007407:Interviews as Topic; D008297:Male; D009723:Nurse-Patient Relations; D010349:Patient Compliance / Q000706:statistics & numerical data; D010819:Physician's Role; D011788:Quality of Life; D018570:Risk Assessment / Q000941:ethics; D012649:Self Concept; D011795:Surveys and Questionnaires