Research Conducted Using Data Obtained through Online Communities Ethical Implications of Methodological Limitations 英文参考文献.docVIP

Essay ResearchConductedUsingDataObtainedthrough OnlineCommunities:EthicalImplicationsof MethodologicalLimitations A.CecileJ.W.Janssens1,2*,PeterKraft3 1DepartmentofEpidemiology,ErasmusUniversityMedicalCenterRotterdam,TheNetherlands,2DepartmentofEpidemiology,RollinsSchoolofPublicHealth,Emory University,Atlanta,Georgia,UnitedStatesofAmerica,3PrograminMolecularandGeneticEpidemiology,HarvardSchoolofPublicHealth,Boston,Massachusetts,United StatesofAmerica ThisisonearticleinanoccasionalPLOS Medicineseriesonresearchintegritythat examinesissuesaffectingtheethicsofhealth researchworldwide. Strong claims regarding the benefits of researchusingtheseresourcesareoftenmade inordertoencourageindividualstoprovide personal (health) information. For example, 23andWe, the research arm of 23andMe ‘‘givescustomerstheopportunitytoleverage their data by contributing it to studies of genetics. With enough data, we believe 23andWecanproducerevolutionaryfindings that willbenefitus all’’ [1]. PatientsLikeMe tellspatientsthatsharingpersonalstoriesand healthdatadoesnotonlyenableindividuals to ‘‘put your disease experiences in context andfindanswerstothequestionsyouhave’’ but also gives ‘‘the opportunity to help uncover great ideas and new knowledge’’ [2]. But how valid are these claims? Can online data collection lead to major break- throughsinhealthresearch?Weworrythat overstatingtheconclusionsthatcanbedrawn from these resources may impinge on individualautonomyandinformedconsent. Just as researchers must take care to accurately convey direct benefits to study participants (which, we argue, in these situations are often small), they should also describe the likely outcomes and known limitationsofobservationalstudiesconducted usingvolunteers.Clarityregardingtheben- efitsofresearchusingsolicitedpersonaldata is particularly important when the data collected are also used for other purposes (e.g., PatientsLikeMe may sell members’ informationtopharmaceuticalandinsurance companies[2]),lestt