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(PDF): Corrall Currier Legal ethical and policy issues of big data
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Legal, Ethical, and Policy Issues of “Big Data 2.0” Collaborative Ventures and Roles for Info Pros
Sheila Corrall Kip Currier
45th LIBER Annual Conference Libraries Opening Paths to Knowledge Wednesday, June 29, 2016
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Information Culture & Data Stewardship
Legal, Ethical, and Policy Issues of “Big Data 2.0” Collaborative Ventures and Roles for Info Pros
Outline • Background
Libraryliterature–Defini7onofkeyterms
• CasestudiesPi=sburghHealthDataAlliance–UKBiobank–BigDataEurope–PersonalGenomeProject–PrecisionMedicineIni7a7ve–OncologyResearchInforma7onExchangeNetwork
• Implica7onsLegal,ethical,policy
• ConclusionsRolesandcompetencies
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Information Culture & Data Stewardship
Library literature • Educa7ngstudentsabouthowcompaniesusebigdataandadvisingusers
onhowtofinddatasetsforresearch(Bieraugel,2013;Hoy,2014)• Movingbeyondresearchdatamanagementtodefineanddiscussother
specializeddata-relatedroles(Lyon&Brenner,2015;Lyonetal.,2016)• Exposing(linked)librarycollec7onsdataandmakingthemreusablefor
resourcediscovery(Campbell&Cowan,2016;Teets&Goldner,2013)• Carryingouttheirownbigdataprojectstoanalyzecollec7onuseand
conductcross-disciplinarycomparisons(Huwe,2014;Ta=ersall,2016)• Helpingcommuni7escreatelocaldatainfrastructuresandmakebigdata
moreuseful,bycrea7ngtaxonomies,designingmetadataschemes,andsystema7zingretrievalmethods,andalsoassis7ngwithpolicyconcerns(Bertotetal.,2014;Bieraugel,2013;Reinhalter&Wi=man,2014)
• Servingasauthori7esoncopyrightandintellectualpropertyissuesarisingfrombigdata(Gordon-Murnane,2012)
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Information Culture & Data Stewardship
What are data? (When are data?) Dataareformsofinforma7onthatmaybedefinedbyexample,processinglevel,origin,andpreserva7onvalue
“Inaddi7ontodigitalmanifesta7onsofliterature(includingtext,sound,s7llimages,movingimages,models,games,orsimula7ons),[theterm]refersaswelltoformsofdataanddatabasesthatgenerallyrequiretheassistanceofcomputa7onalmachineryandsoewareinordertobeuseful,suchasvarioustypesoflaboratorydataincludingspectrographic,genomicsequencing,andelectronmicroscopydata;observa7onaldata,suchasremotesensing,geospa7al,andsocioeconomicdata;andotherformsofdataeithergeneratedorcompiled,byhumansormachines.”
(Uhlir&CoheninBorgman,2015,p.19)
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Information Culture & Data Stewardship
Critical questions • Whatarethechieflegal,ethical,andpolicyissuestriggered
byBigData(andLi=leData)?
• Whatbestprac1cescanbeiden7fiedtoaddressthesekindsoflegal,ethical,andpolicyissues?
• Whataretherolesthatinforma7onprofessionalsandresearchlibrariescanandwillassumeincontribu7ngtoconsidera7onsofthelegal,ethical,andpolicyissuesraised?
• Whatarethecompetencyimplica7onsintermsoftheknowledge,skills,andabili1eslibrariesneedtoacquireordevelopfortheBigDataworld?
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Information Culture & Data Stewardship
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Information Culture & Data Stewardship
“Thehealthcarefieldgeneratesanenormousamountofdataeveryday.Thereisaneed,andopportunity,tominethisdataandprovideittothemedicalresearchersandprac77onerswhocanputittoworkinreallife,tobenefitrealpeople.Manyorganiza7onscanfulfillpartofthisprocess,butnoneofthemareequippedtobeginwithrawdata,developanideaandmovethatideadirectlyintoaprac7ceseing.”
What roles can information professionals and research libraries play in such endeavors?
World-classCS/machinelearning
Medical+research+exper7se
Deepdata,clinicalseing,commercializa7on
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Information Culture & Data Stewardship
Background “Amajorna7onalhealthresource”• Registeredcharity• Est.byWellcomeTrust,MRC,
Dept.ofHealth,ScoishGov.,andNWRegionalDev.Agency;fundedbyWelshDev.Agency,BHF,andDiabetesUK)
• HostedbyU.Manchester,supportedbyNHS
• Opentobonafideresearchersanywhereintheworld,includingthosefundedbyacademiaandindustry
• Aimstoimprovepreven7on,diagnosisandtreatmentoflife-threateningillnesses
• Recruited500,000peopleaged40-69in2006-2010
• Par7cipantshaveundergonemeasures,providedblood,urineandsalivasamples,anddetailedpersonalinforma7on– andagreedtohavetheirhealthfollowed
“…tohelpscien7stsdiscoverwhysomepeopledeveloppar7culardiseasesandothersdonot”
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Information Culture & Data Stewardship
Best Ethical Practice? UKBiobankwantstobe“amodelnotonlyforbestsciencebutforbestethicalprac7cetoo,inrela7ontothesebigbiobankprojects”ProfessorRogerBrownsword,Chair(2011-2015)UKBiobankEthicsandGovernanceCouncil(UKEGC)h=p://www.ukbiobank.ac.uk/ethics/
What are some of the “best science” and “best ethical practice” lessons that can be learned from UK Biobank?
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Information Culture & Data Stewardship
Big Data Europe Who is Big Data Europe for? Ø “Small,Mediumandlarge-sizeden77escomingfromanysectorwithin
industry,researchorthepublicsector,thathavemuchtogainfrommakingsenseoflargevolumesofdata(ofbothsta7cordynamicnature,andfromvarioussources)torealisenewandinnova7veuse-cases,notjustwithintheirdomainbutalsoacrossdifferentsectors”
Ø 16Europeanpartnersatpresent,represen7ngadiverserangeofacademic,for-profit,andgovernmenten77esin10countries
Big Data partnership projects – A key question Ø Givencurrentpoli7caluncertain7es(e.g.,BREXIT),
whatcanbedonetoensurestabilityandcon7nuityofBigDatapartnerships(likeBigDataEurope),whileprovidingleewayforaccommoda7ngchangesandcoursecorrec7onsthatmaybeperiodicallywarranted?
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Information Culture & Data Stewardship
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Information Culture & Data Stewardship
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Information Culture & Data Stewardship
About PGP HarvardPGPis“anopenscienceresearchproject…designedtocreatepublicscien7ficresourcesthateveryonecanaccessbybringingtogethergenomic,environmental,andhumantraitdatadonatedbyourpar7cipants”
• FoundedatHarvardMedicalSchoolin2005,nowaGlobalNetworkinvolvingCanada(UniversityofToronto),theUK(UCL)andAustria(AustrianAcademyofSciences)
• HarvardPGPisstaffedbyasmall,largelyvolunteergroupofresearchers,engineers,andethicistswhoareallpioneersintheirfields.
• MembersoftheGlobalNetworkfollowacommonsetofguidelines,butthequan7tyandqualityofinforma7ononna7onalsitesvariessignificantly
“Privacy,confiden7alityandanonymityareimpossibletoguaranteeina...researchstudywherepublicsharingofgene7cdataisanexplicitgoal”
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Information Culture & Data Stewardship
d) Oversight.EachmembermustmaintaincurrentIns7tu7onalReviewBoard[ResearchEthics]orlocalequivalentapproval
e) Notforprofit.Managedorsponsoredbyanon-profitorganiza7on(orlocalequivalent).– Amembershallnotsellor
licensepar7cipantdataor7ssues“otherthanpurposesofreasonablecostrecovery”
Pretty Good Privacy?
Guidelines of the Global PGP Network a) PublicData.Par7cipantsare
invitedtosharegenomicandtraitdatausingaCC0waiver
b) Non-anonymous.Risksofpar7cipantre-iden7fica7onareaddressedupfrontaspartoftheconsentandenrollmentprocess− Neitheranonymitynor
confiden1alityoftheirdataispromisedtopar1cipants
c) Equalaccess.Par7cipantsaregiven7melyandcompleteaccesstotheirindividualdatai.e.,rawdataandnotjustsummaryresults“wherefeasible”
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Information Culture & Data Stewardship
Precision Medicine Initiative
• LaunchedbyPresidentObamainhisJanuary2015StateoftheUnionaddress
• Aimstoleverageadvancesingenomics,emergingmethodsformanagingandanalyzinglargedatasets,andhealthICTstoacceleratebiomedicaldiscoveries– whileprotec7ngprivacy
• Planstoenrollonemillionormorevolunteersandmayincludechildren
“commi=edtoengagingmul7plesectorsandforgingstrongpartnershipswith
academicandothernon-profitresearchers,pa7entgroups,andtheprivatesectortocapitalizeonworkalreadyunderway”
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Information Culture & Data Stewardship
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Information Culture & Data Stewardship
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Information Culture & Data Stewardship
Big projects, Big problems Ø VerylargescaleØ InterdisciplinaryØ HumansubjectsØ Inter-state/interna7onal/globalØ Mul7plejurisdic7onsØ Cross-sectorpartners(public/private)Ø Culturaldifferences
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Information Culture & Data Stewardship
Legal issues arising from Big Data CompliancewithØ PrivacylawsØ Dataprotec7on/securitylawsØ Gene7cinforma7onlawsØ Freedomofinforma7onØ Righttobeforgo=enØ Intellectualproperty
e.g.,paten7ngofhumangenes/synthe7chumangenescf.EUandUS(MyriadGene6cscase,2013)
Ø LicensingandcontractualissuesØ Publishing
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Information Culture & Data Stewardship
Ethical issues arising from Big Data Ø Privacy
– ofdonors– howtocomplywithprivacylawsofdifferentna7ons/groups
Ø Maintaininganonymityofspecimendonors– protec7onagainstbadactors,e.g.,cybercriminals,hac7vists– triangula7onofdatafrommul7plesourcesusedtocircumventanonymiza7onofdonors
Ø Mone7za7on,Commodifica7on– sellingofhealthdatatocommercialinterests– useofindigenousknowledge/tradi7onalknowledge– shouldspecimendonorsshareinanypoten7alprofits?
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Information Culture & Data Stewardship
Ethical issues arising from Big Data Ø Peaceful/PublicGood/PublicInterestusesvs.Military/
Na7onalSecurityusesvs.Terroristapplica7ons– whowilldeterminethesocietallyacceptable/desirableusesandapplica7onsforhealthdata/bigdata?
Ø Psychologicalwell-being/Informedconsentofdonors– fullyadvisingdonorsoftheirrightsandoftheobliga7onsoftherespec7vedata-gatheringanddata-usingen77estodonors
– takingaccountofthebestinterestsofdonorsinmakingtheirdataavailabletothem
Ø Solicita7onofspecimendonorsforpar7cipa7oninstudiesIn2015theUKBioBankEthicsandGovernanceCouncilfacedapolicyissueoveritsproposeduseasarecruitmentplaEormbyresearcherswhowantedtoiden6fypeopleforaseparatestudy
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Information Culture & Data Stewardship
“…a precedent-setting case” • Researcherswantedtouse
UKBiobanktoiden7fypeopletoinviteintoaseparatestudy
• TheyaskedUKBiobanktosendanintroductoryemailtoitspar7cipantspoin7ngtothewebsiteofthenewstudy
• Offeringsucharecruitmentmechanismcouldbenefittheresearchcommunity– Buttake7meandresources
thatcouldbeusedelsewhere
• InwhatcircumstanceswoulditbeacceptableforBiobanktodivertresourcesinthisway?– Howshouldadhocthird-party
re-contactsbeaccommodated?
• UKBEGCproposedtwoop7ons– Createadedicatedwebpageto
provideneutralinforma7onabout(approved)studies
– ProvideawithdrawalcategoryallowingBiobankpar7cipantsopt-outfromemailinvita7ons
TheprojectwasapprovedasapilotsubjecttofiHngwithBiobank’s6metableofre-contactsandwillbeusedtodrawupaframeworkforfuturerequests
UKBIOBANKETHICSANDGOVERNANCECOUNCILANNUALREVIEW2015
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Information Culture & Data Stewardship
Policy issues arising from Big Data • Howandbywhomwillhealthdata/bigdatabepreservedand
maderetrievableforandbyfuturestakeholders?• Whatguidelinesandrequirementsareneededforpublishing
relatedtohealthdata/bigdata?• Whoneedstohaveavoiceinpolicy-seingandpolicy-making,and
whoshouldcraethegoverningpoliciesandcodesofethics?☞ Giventhepaceofchange,howoeenshouldpoliciesandcodesbe
reviewedandupdated?
• Whatoversightandenforcementmechanismsareneededtoensurecompliance?☞ Whatarethepenal7esforpiracyofhealthdataormalfeasance,
negligence,willfulblindness,andharmfulimpactsonhumansubjects?☞ Whatprotec7onsareavailableorneedtobedevelopedandcodified
forwhistleblowerswhoreportlapsesandbreachesofcompliance?
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Information Culture & Data Stewardship
Library Roles and Competencies • Dataareformsofinforma7onrequiringstewardship
– likethemanyotherknowledgeresourceslibrariesmanage
• Bigdata2.0ini7a7vesposepar7cularchallenges– becauseoftheirscale,variety,complexity,andopenness
• Librariesarewellposi7onedtoassumeaproac7verole– buildingontheirexis7ngworkinscholarlycommunica7on
• Poten7alrolesforlibrariesinthebigdataarenarequireprofessional,technical,organiza7onal,managerial,personal,andinterpersonalknowledge,skills,andabili7es– includingexper7seassociatedwithotherprofessionsandenhancedcompetenciesinrela7onshipmanagement
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Information Culture & Data Stewardship
Potential Library Roles in Open Domains Types OpenContent OpenProcess OpenInfrastructure
Domains OA OData OER OBib OSS OD OEP OPR OSci OI OStd OSys
RolesUse
EducateAdvocateFacilitateMediate
CollaborateCoordinateIntegrate
Lead
(Corrall,2016,Inpress)
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Information Culture & Data Stewardship
References Bertot,J.,Butler,B.,&Travis,D.(2014).Localbigdata:Theroleoflibrariesin
buildingcommunitydatainfrastructures.dg.o2014:Proceedingsofthe15thAnnualInterna6onalConferenceonDigitalGovernmentResearch(pp.17-23).doi:10.1145/2612733.2612762.
Bieraugel,M.(2013).Keepingupwith...bigdata.ALA,ACRL.Retrievedfromh=p://www.ala.org/acrl/publica7ons/keeping_u_with/big_data.
Borgman,C.L.(2015).Bigdata,liUledata,nodata:Scholarshipinthenetworkedworld.Cambridge,MA:MITPress.
Campbell,D.G.,&Cowan,S.R.(2016).Theparadoxofprivacy:Revisi7ngacorelibraryvalueinanageofbigdataandlinkeddata.LibraryTrends,64(3),492-511.doi:10.1353/lib.2016.0006.
Gordon-Murnane,L.(2012).Bigdata:Abigopportunityforlibrarians.Online,36(5),30-34.
Hoy,M.B.(2014)Bigdata:Anintroduc7onforlibrarians.MedicalReferenceServicesQuarterly,33(3),320-326.doi:10.1080/02763869.2014.925709.
Huwe,T.K.(2014,March).Bigdataandthelibrary:Anaturalfit.ComputersinLibraries,34(2),17-18.
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Information Culture & Data Stewardship
References Huwe,T.K.(2014,March).Bigdataandthelibrary:Anaturalfit.Computersin
Libraries,34(2),17-18.Lyon,L.,&Brenner,A.(2015).Bridgingthedatatalentgap:Posi7oningthe
iSchoolasanagentforchange.Interna6onalJournalofDigitalCura6on,10(1),111-122.doi:10.2218/ijdc.v10i1.349.
Lyon,L.,Acker,A.,Ma=ern,E.,&Langmead,A.(2016).Applyingtransla7onalprinciplestodatasciencecurriculumdevelopment.iPres2015:Proceedingsofthe12thInterna6onalConferenceonDigitalPreserva6on(pp.109-117).Retrievedfromh=ps://phaidra.univie.ac.uk/view/o:429552.
Reinhalter,L.,&Wi=mann,R.J.(2014).Thelibrary:Bigdata'sboomtown:TheSerialsLibrarian,67(4),363-372.doi:10.1080/0361526X.2014.915605.
Ta=ersall,A.(2016).Bigdata–whatisitandwhyitma=ers.HealthInforma6on&LibrariesJournal,33(2),89-91.doi:10.1111/hir.12147.
Teets,M.,&Goldner,M.(2013).Libraries'roleincura7ngandexposingbigdata.FutureInternet,5(3),429-438.doi:10.3390/fi5030429.
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Any Questions?
SheilaCorrallscorrall@pi=.edu
[email protected]=.eduDepartmentofInforma1onCulture&DataStewardship
SchoolofInforma7onSciences