internet research ethics - emory university• examples of what may be internet “research” •...
TRANSCRIPT
InternetResearchEthics
EmoryIRBWebinar‐ August14,2014
• InternetasaTool• Usedtofacilitateresearchactivities• e.g.torecruit,storedatabase,orhostsurveys• Increasingpopularityofmobileappstoinformparticipants andrecorddata
• InternetasaSource• Usedasanactualdatasource• e.g.observingforums/sites/blogs,manipulatingonlineplatforms,scanningsocialmedia
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
• LimitedGuidanceExists• Nospecific Emorypoliciesoninternetresearchyet;mustinterpretbroaderregulationstofit
• SamePrimaryConsiderations• Natureofthestudy• RecruitmentProcedure/Criteria• ObtainingConsent• PrivacyandSecurityofData
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
• RaisesConsiderationsLike:• IsobservingaFacebookgroup“research?”• Whatinformationis“private?”• Howcanyouensureinformedconsent,isitnecessary?• CanIverifyasubject’sage?
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
• TheIRBReviewsResearchwithHumans• Research=investigationtofindgeneralizableresults
• HumanSubject=livingindividualaboutwhomaresearcherobtainsprivateinformation
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
• Whenisit“Research?”• Basically,whenit’snotQA/QI,clinicaltreatment,orpublichealthsurveillance
• Trickydistinctionforsomeproductevaluationprojects
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
• Examplesofwhatmaybeinternet“research”• Onlinesurveys• Behavioralstudiesinvirtualworlds• Appsonhand‐helds togatherdata• Studyofpersonalwebsitecontentorsocialprofiles• Nichesocialnetworkingsitesorforumslike“mydiabetes.com”
• Facebookpagetoretainsubjectsincohortstudy• Onlinefocusgroups• MechanicalTurk
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
• Whenarethere“HumanSubjects?”• Interactionorinterventionwithpeople
• e.g.Surveys,socialmediacontact,forums
• Individuallyidentifiableprivateinformation• Private=informationreasonablyexpectednottobe
observed/recorded,ORinformationprovidedforspecificpurposesexpectedtoremainprivate(e.g.medrecords)
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
• PrivateInformation• Simply“NotPublic”
• Restrictionsonaccess(e.g.“friending”or“following”)
• PublicbutSpecificPurpose• e.g.Unrestrictedsocialmediaprofile,blogs,
networkinggroup• Confusingprivacysettingsanexcuse?• Howisthisdifferentfromobservingonthestreet?
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
• DebateabouttheSpace:Publicvs.Private• Public?
• “Authors”ofpublic“documents”or“texts”• Anyonepostingonlinemustbeawarethatthese
systemsaremeantforstorage,transmission,andretrievalofdata
• Private?• “Subjects”ofresearch• Internetdataexpectedtobe“ephemeral,”notrecorded• Manypeoplejustdon’tknow
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
• PrimaryConsiderations:• How willyourecruit?
• Targetedads?• Massemailing?• Joincertainforums?
• What screeningprocedures?• Seriesofquestions?Inwhatorder?• CollectingPHI?
• Who willyourecruit?• Needtoverifycriteriaaremet?• Chanceofenrollingminors?
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
• ExampleofRecruitmentwithScreening
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
• WhenRecruitmentTurnsintoScreening
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
• HowNOTtorecruitandscreenbeforeconsent:
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
Public and Non‐sensitive
Public and Sensitive
Private and Non‐sensitive
Private and Sensitive
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Quote from person’s online journal article
Person talking about own experience of sexual abuse in a private discussion
Harmless info from FB page where user might treat it like private space
Potentially damaging info from FB page where user might treat it like private space
• Canwaivedocumentation(signature)forminimalriskresearch(45CFR46.117)
• Clickabuttonorcontinueontosurvey/intervention
• Isreadingenough?
• DopeopleevenREADontheinternet?
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
• Particularconcernsaboutanonymityandconfidentiality• ConsiderthefollowingadvicefromSurveyMonkey:
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
• ThismaybeanareathatyouwillwanttoconsultwithanIRBanalystduringstudysubmission
• Maywaivecertainelementsofconsent
• Viewedonacase‐by‐casebasis
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
• AdditionalSecurityConcernsOnline• Useofavatarsoralternateidentities• IPaddressandtheabilitytotrack• Needtoencryptdata• Standardsecuritymeasuresmaynotsuffice
• Simplevirusprotectionor• Securebrowser
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
• HarvardT3FacebookStudy• Collecteddatafrom1,700Facebookaccounts
• Thoughttobepublic,noconsentneeded• Studied“studentsatananonymous,northeasternAmericanuniversity”
• Publishedentire“cleaned”datasetasrequiredthroughNSF,but...turnedouttobere‐identifiable
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
• HarvardT3FacebookStudy• Alsoraisedconcernsaboutconsent,shouldtheresearchershaveobtainedconsent?
• “TheT3researchprojectmightverywellbeusheringin‘‘anewwayofdoingsocialscience’’,butitisourresponsibilityscholarstoensureourresearchmethodsandprocessesremainrootedinlong‐ standingethicalpractices.Concernsoverconsent,privacyandanonymitydonotdisappearsimplybecausesubjectsparticipateinonlinesocialnetworks;rather,theybecomeevenmoreimportant.”– MichaelZimmer,informationethicsandpolicyscholaratUniversityofWisconcin‐Madison
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
Facebook’srecent“socialexperiment”• Usersnewsfeeds(mainlog‐inscreen)weremodifiedtoincludemorepostsofaparticularmood
• Theresearchersthentrackedtheuser’spersonalposts,toseeiftheymatchedthemood
• Raisesquestionsoftheneedtoconsent,relianceontermsandconditions,andpotentialriskaboutalteringsubjects’moods
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
Studywheredataistobeminedsolelyfrompublictwitteraccounts• WhatwouldtheIRBconsiderwhenreviewingsuchastudy?• Isit“researchinvolvinghumansubjects?”• Istheinformationtruly public?• Willidentifiersberecorded?• Howwilldatabepresentedfollowinganalysis?(e.g.directquotesfromtweets?)
• PracticaladviceistogoaheadandsubmitthesetypesofstudiesfortheIRBtoreview,evenifnotobviouslyhumansubjectsresearch
OUTLINE
Internet’sRoleRegulations
ResearchDesignPopulation
InformedConsentDataSecurity
Examples
• [email protected]• www.irb.emory.edu• 404‐727‐0720
• EducationandQualityAssuranceTeam• MariaDavila• SharaKarlebach• SeanKiskel• KevinWack