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Factors influencing patient willingness to participate in genetic research after a myocardial infarction.doc

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Factors influencing patient willingness to participate in genetic research after a myocardial infarction

Lanfearetal.GenomeMedicine2011,3:39 /content/3/6/39 RESEARCH OpenAccess Factorsinfluencingpatientwillingnessto participateingeneticresearchafter amyocardialinfarction DavidELanfear1*,PhilipGJones2,SharonCresci3,FengmingTang2,SaifSRathore4andJohnASpertus2 Abstract Background:Achieving‘personalizedmedicine’requiresenrollingrepresentativecohortsintogeneticstudies,but patientself-selectionmayintroducebias.Wesoughttoidentifycharacteristicsassociatedwithgeneticconsentina myocardialinfarction(MI)registry. Methods:Weassessedcorrelatesofparticipationinthegeneticsub-studyofTRIUMPH,aprospectiveMIregistry(n =4,340)from24UShospitalsbetweenApril2005andDecember2008.Factorsexaminedincludedextensivesocio- demographicsfactors,clinicalvariables,andstudysite.Predictorsofconsentwereidentifiedusinghierarchical modifiedPoissonregression,adjustingforstudysite.Variationinconsentratesacrosshospitalswerequantifiedby themedianrateratio(MRR). Results:Mostsubjectsconsentedtodonationoftheirgeneticmaterial(n=3,484;80%).Participationratesvaried greatlybetweensites,from40%to100%.Afteradjustmentforconfoundingfactors,theMRRforhospitalwas1.22 (95%confidenceinterval(CI)1.11to1.29).Theonlypatient-levelfactorsassociatedwithconsentwererace(RR0.93 forAfricanAmericansversuswhites,95%CI0.88to0.99)andbodymassindex(RR1.03forBMI≥25,95%CI1.01 to1.06). Conclusion:AmongpatientswithanMItherewerenotabledifferencesingeneticconsentbystudysite,butlittle associationwithpatient-levelfactors.Thissuggeststhatvariationinthewayinformationispresentedduring recruitment,orothersitefactors,stronglyinfluencepatients’decisiontoparticipateingeneticstudies. Background circumstances in which the patient is recruited [5], as Asgeneticresearchbecomesmorecommonandgenetic well as a variety of patient characteristics that may factorsarestudiedasameansforimprovingriskstratifi- impactpatients’willingnesstoparticipate,includingrace cation and treatment, it is essential that participating [7,8],education[9,10],andgender[3,7,8,11].