A Survey of UK Public Interest in Internet-Based Personal Genome Testing 英文参考文献.docVIP

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A Survey of UK Public Interest in Internet-Based Personal Genome Testing 英文参考文献.doc

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A Survey of UK Public Interest in Internet-Based Personal Genome Testing 英文参考文献

ASurveyofUKPublicInterestinInternet-BasedPersonal GenomeTesting LynnF.Cherkas1*,JulietteM.Harris1,ElanaLevinson2,TimD.Spector1,BarbaraPrainsack3 1DepartmentofTwinResearchandGeneticEpidemiology,King’sCollegeLondon,London,UnitedKingdom,2DivisionofMolecularGenetics,DepartmentofPediatrics, ColumbiaUniversityMedicalCenter,NewYork,NewYork,UnitedStatesofAmerica,3CentreforBiomedicineandSociety(CBAS),King’sCollegeLondon,London,United Kingdom Abstract Background:Inviewoftheincreasingavailabilityofcommercialinternet-basedPersonalGenomeTesting(PGT),thisstudy aimed to explore the reasons why people would consider taking such a test and how they would use the genetic risk informationprovided. Methodology/Principal Findings: A self-completion questionnaire assessing public awareness and interest in PGT and motivationalreasonsforundergoingPGTwascompletedby4,050unselectedadultvolunteersfromtheUK-basedTwinsUK register,aged17to91(responserate62%).Only13%ofrespondentswereawareoftheexistenceofPGT.Afterreadinga briefsummaryaboutPGT,oneintwentyparticipants(5%)werepotentiallyinterestedatcurrentprices(￡250),howeverthis proportionrosetohalf(50%)ifthetestwasfreeofcharge.NearlyallrespondentswhowereinterestedinfreePGTreported theywouldtakethetesttoencouragethemtoadoptahealthierlifestyleiffoundtobeathighgeneticriskofadisease (93%).Around4in5respondentswouldhavethetesttoconveygeneticriskinformation totheirchildrenandasimilar proportionfeltthathavingaPGTwouldenabletheirdoctortomonitortheirhealthmoreclosely.ATwinsUKresearchfocus groupalsoindicatedthatconsumerswouldconsulttheirGPtohelpinterpretresultsofPGT. Conclusions/Significance:ThishypotheticalstudysuggeststhatincreasingpublicityanddecreasingcostsofPGTmaylead toincreaseduptake,driveninpartbythegeneralpublic’sdesiretomonitorandimprovetheirhealth.Althoughthefuture extentoftheclinicalutilityofPGTiscurrentlyunknown,itiscrucialthatconsumersarewellinformedaboutthecurrent limitationsofPGT.Ourresultssuggestthathealthprofessionalswillinevitably