Resources for Understanding the Data Sharing Landscape: Rights, Licensing… · 2018. 3. 30. ·...

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