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dc.contributor.authorGodino, Leaen_UK
dc.contributor.authorTurchetti, Danielaen_UK
dc.contributor.authorJackson, Leighen_UK
dc.contributor.authorHennessy, Catherineen_UK
dc.contributor.authorSkirton, Heatheren_UK
dc.description.abstractPresymptomatic and predictive genetic testing should involve a considered choice, which is particularly true when testing is undertaken in early adulthood. Young adults are at a key life stage as they may be developing a career, forming partnerships and potentially becoming parents: presymptomatic testing may affect many facets of their future lives. The aim of this integrative systematic review was to assess factors that influence young adults' or adolescents' choices to have a presymptomatic genetic test and the emotional impact of those choices. Peer-reviewed papers published between January 1993 and December 2014 were searched using eight databases. Of 3373 studies identified, 29 were reviewed in full text: 11 met the inclusion criteria. Thematic analysis was used to identify five major themes: period befeore testing, experience of genetic counselling, parental involvement in decision-making, impact of test result communication, and living with genetic risk. Many participants grew up with little or no information concerning their genetic risk. The experience of genetic counselling was either reported as an opportunity for discussing problems or associated with feelings of disempowerment. Emotional outcomes of disclosure did not directly correlate with test results: some mutation carriers were relieved to know their status, however, the knowledge they may have passed on the mutation to their children was a common concern. Parents appeared to have exerted pressure on their children during the decision-making process about testing and risk reduction surgery. Health professionals should take into account all these issues to effectively assist young adults in making decisions about presymptomatic genetic testing. © 2016 Macmillan Publishers Limited.en_UK
dc.publisherSpringer Natureen_UK
dc.relationGodino L, Turchetti D, Jackson L, Hennessy C & Skirton H (2016) Impact of presymptomatic genetic testing on young adults: A systematic review. European Journal of Human Genetics, 24 (4), pp. 496-503.
dc.rightsPublisher policy allows this work to be made available in this repository. Published in European Journal of Human Genetics volume 24, pages 496–503 (2016) by Springer Nature. The original publication is available at:
dc.subjectGenetic counsellingen_UK
dc.titleImpact of presymptomatic genetic testing on young adults: A systematic reviewen_UK
dc.typeJournal Articleen_UK
dc.citation.jtitleEuropean Journal of Human Geneticsen_UK
dc.type.statusAM - Accepted Manuscripten_UK
dc.contributor.affiliationUniversity of Plymouthen_UK
dc.contributor.affiliationUniversity of Bolognaen_UK
dc.contributor.affiliationUniversity of Plymouthen_UK
dc.contributor.affiliationFaculty of Social Sciencesen_UK
dc.contributor.affiliationUniversity of Plymouthen_UK
Appears in Collections:Faculty of Social Sciences Journal Articles

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