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dc.creatorDuncan, Rony Een
dc.creatorGillam, Lynnen
dc.creatorSavulescu, Julianen
dc.creatorWilliamson, Roberten
dc.creatorRogers, John Gen
dc.creatorDelatycki, Martin Ben
dc.date.accessioned2011-07-12T18:22:46Zen
dc.date.available2011-07-12T18:22:46Zen
dc.date.created2010-03en
dc.date.issued2010-03en
dc.identifier1573-7292en
dc.identifier10.1007/s10689-009-9294-0en
dc.identifier.bibliographicCitationFamilial cancer 2010 Mar ; 9(1): 27-35en
dc.identifier.urihttp://hdl.handle.net/10822/515376en
dc.description.abstractPredictive 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.en
dc.description.urihttp://dx.doi.org/10.1007/s10689-009-9294-0en
dc.formatArticleen
dc.languageengen
dc.source330871en
dc.subjectAgeden
dc.subjectAutonomyen
dc.subjectBlooden
dc.subjectFamily Membersen
dc.subjectGenetic Testingen
dc.subjectInterviewsen
dc.subjectLifeen
dc.subjectResearchen
dc.subject.classificationGenetic Screening / Genetic Testingen
dc.subject.classificationHealth Care for Newborns and Minorsen
dc.titleThe challenge of developmentally appropriate care: predictive genetic testing in young people for familial adenomatous polyposis.en
dc.provenanceDigital citation created by the Bioethics Research Library, Georgetown University, for the National Information Resource on Ethics and Human Genetics, a project funded by the United States National Human Genome Research Instituteen
dc.provenanceDigital citation migrated from OpenText Livelink Discovery Server database named GenETHX to DSpace collection GenETHX hosted by Georgetown Universityen


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