internet research ethics - emory university• examples of what may be internet “research” •...

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

??

??

??

??

??

?

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

• irb@emory.edu• www.irb.emory.edu• 404‐727‐0720

• EducationandQualityAssuranceTeam• MariaDavila• SharaKarlebach• SeanKiskel• KevinWack