resources for understanding the data sharing landscape: rights, licensing… · 2018. 3. 30. ·...
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ResourcesforUnderstandingtheDataSharingLandscape:Rights,Licensing,andRelatedInitiatives
SamGrabus,DoctoralResearchAssistant,Drexel&JaneGreenberg
StatementofNeed:ExistingliteraturepointstoinconsistentguidancefromInstitutionalReviewBoards(IRBs)regardinghowtohandleandsafelydisseminatespecifictypesofsensitivedata(Goldenbergetal.,2015).Consideringthatmanyagenciesandorganizationsdonotsharetheirdatabecauseof therisksassociatedwiththemishandlingofsensitiveandprivateinformation,anunderstandingofthecurrentrightsmanagementandlicensinglandscapeisessentialinordertoappropriatelyguideresearcherstowarddatasharingtoolsandresources.
Goal:Compileafirst-phaseessentialresourcelistofcurrentlicensingandrightsmanagementeffortsthatseektofacilitatedatasharing including• initiativesrelatedtostandardizinglicensingandrightsmanagement;• technologicalinfrastructure;• ontologiesandmetadatastandardsthatcouldbeimplementedtocommunicateresearcherdatasharingneeds;• community-drivenefforts;• andothercuratedresourcesforfacilitatingconversationandprogressformitigatingthedatasharingchallengesacrossallenvironments
1)IdentifyCategoriesofInitiatives
LicensingStandardizationRightsManagement
TechnologicalInfrastructure/ToolsCommunity-DrivenEffortsMetadata&OntologiesInformationalResources
RE:Metadata,noneoftherightsorlicensing-relatedstandardsandschemasweredevelopedspecificallyforusewithresearchdata,andthetwoontologiesaredomain/community-specific.Identifiesneedforuniversal/cross-disciplinarydata
sharingontology
2)Timeline:whentheseinitiativeswerestarted
Shiftinlicensinginitiativeprioritiesfrom“open”tomorenuanced andtechnologicallyrobust,toensurethatsensitivedatatypescanalsoberesponsiblyshared.
Resources:
1.Goldenberg,A.J.,Maschke,K.J.,Joffe,S.,Botkin,J.R.,Rothwell,E.,Murray,T.H.,...Rivera,S.M.(2015).IRBpracticesandpoliciesregardingthesecondaryresearchuseofbiospecimens.BMCMedicalEthics,16(1),32.doi:10.1186/s12910-015-0020-1
SponsoredinpartthroughgrantsfromtheAlfredP.SloanFoundation#G-2014-13746andfromtheNationalScienceFoundationNSFACI#1349002.Thisresearchisalsosupportedandfunded,inpart,byNationalScienceFoundationAward#1636788.
AcknowledgementstotheRDA/CODATALegalInteroperabilityInterestGroup,theRDA/NISOPrivacyImplicationsofResearchDataSetsInterestGroup,PaulUlhir,BobChen,SimonHodson,ToddCarpenter,andothers,fortheirsupport.
3)Spectrum:“open”vs.“closed”initiatives“Open”:Unfetteredaccessandre-usewithoneortwospecificationsonhowitcanbehandledintermsofattribution,remixing,andnocommercialuse.
”Closed”: Lookingatthemorecomplexlegalaspects,intermsofprotectingpersonalityidentifiableinformationandproprietaryinformation,andhowtoexpresspermissionsandobligationsinamorespecificway.
6OverlappingCategories
Methods:SurveyoflandscapeOutputs:• Diagramthatcategorizesinitiatives• Timelinethattraceswhentheseinitiativeswerestarted• Spectrumvisualizationcapturinginitiativesthatfocusondatathatcanbesharedinamostly“open”environment,vs.thosethatare
attemptingtofacilitatesharingofdatatypesthatmayberestrictedbyprivacyandproprietaryconcerns.
Initiativesinthemiddleofthespectrumeitherseektomitigatebothopenandcloseddatatypesordonotfallneatlyintoeithercategory
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