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dc.contributor.authorGodino, L
dc.contributor.authorTurchetti, D
dc.contributor.authorJackson, L
dc.contributor.authorHennessy, C
dc.contributor.authorSkirton, H
dc.date.accessioned2015-12-16T17:12:20Z
dc.date.accessioned2017-01-26T09:30:50Z
dc.date.available2015-12-16T17:12:20Z
dc.date.available2017-01-26T09:30:50Z
dc.date.issued2016-04
dc.identifier.issn1018-4813
dc.identifier.issn1476-5438
dc.identifier.urihttp://hdl.handle.net/10026.1/8310
dc.descriptionFile replaced (incorrect version) on 28/7/2022 by KT (LDS).
dc.description.abstract

Presymptomatic 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 before 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.

dc.format.extent496-503
dc.format.mediumPrint-Electronic
dc.languageen
dc.language.isoen
dc.publisherSpringer Science and Business Media LLC
dc.relation.replaceshttp://hdl.handle.net/10026.1/3958
dc.relation.replaces10026.1/3958
dc.relation.replaces10026.1/4841
dc.relation.replaceshttp://hdl.handle.net/10026.1/4841
dc.subjectAdolescent
dc.subjectAsymptomatic Diseases
dc.subjectAttitude to Health
dc.subjectEmotions
dc.subjectGenetic Counseling
dc.subjectGenetic Diseases, Inborn
dc.subjectGenetic Predisposition to Disease
dc.subjectGenetic Testing
dc.subjectHumans
dc.subjectPatient Education as Topic
dc.subjectYoung Adult
dc.titleImpact of presymptomatic genetic testing on young adults: a systematic review
dc.typejournal-article
dc.typeReview
plymouth.author-urlhttp://gateway.webofknowledge.com/gateway/Gateway.cgi?GWVersion=2&SrcApp=PARTNER_APP&SrcAuth=LinksAMR&KeyUT=WOS:000374124800003&DestLinkType=FullRecord&DestApp=ALL_WOS&UsrCustomerID=11bb513d99f797142bcfeffcc58ea008
plymouth.issue4
plymouth.volume24
plymouth.publisher-urlhttp://dx.doi.org/10.1038/ejhg.2015.153
plymouth.publication-statusPublished
plymouth.journalEUROPEAN JOURNAL OF HUMAN GENETICS
dc.identifier.doi10.1038/ejhg.2016.153
pubs.merge-from10026.1/4841
pubs.merge-fromhttp://hdl.handle.net/10026.1/4841
plymouth.organisational-group/Plymouth
plymouth.organisational-group/Plymouth/Faculty of Health
dc.publisher.placeEngland
dcterms.dateAccepted2015-06-03
dc.rights.embargodate2016-10
dc.identifier.eissn1476-5438
dc.rights.embargoperiodNot known
rioxxterms.versionofrecord10.1038/ejhg.2016.153
rioxxterms.licenseref.urihttp://www.rioxx.net/licenses/all-rights-reserved
rioxxterms.licenseref.startdate2016-04
rioxxterms.typeJournal Article/Review


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