legal, ethical, and policy issues of “big data...

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

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


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)


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)


Critical questions •  Whatarethechieflegal,ethical,andpolicyissuestriggered

byBigData(andLi=leData)?

•  Whatbestprac1cescanbeiden7fiedtoaddressthesekindsoflegal,ethical,andpolicyissues?

•  Whataretherolesthatinforma7onprofessionalsandresearchlibrariescanandwillassumeincontribu7ngtoconsidera7onsofthelegal,ethical,andpolicyissuesraised?

•  Whatarethecompetencyimplica7onsintermsoftheknowledge,skills,andabili1eslibrariesneedtoacquireordevelopfortheBigDataworld?


“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


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”


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?


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?


About PGP HarvardPGPis“anopenscienceresearchproject…designedtocreatepublicscien7ficresourcesthateveryonecanaccessbybringingtogethergenomic,environmental,andhumantraitdatadonatedbyourpar7cipants”

•  FoundedatHarvardMedicalSchoolin2005,nowaGlobalNetworkinvolvingCanada(UniversityofToronto),theUK(UCL)andAustria(AustrianAcademyofSciences)

•  HarvardPGPisstaffedbyasmall,largelyvolunteergroupofresearchers,engineers,andethicistswhoareallpioneersintheirfields.

•  MembersoftheGlobalNetworkfollowacommonsetofguidelines,butthequan7tyandqualityofinforma7ononna7onalsitesvariessignificantly

“Privacy,confiden7alityandanonymityareimpossibletoguaranteeina...researchstudywherepublicsharingofgene7cdataisanexplicitgoal”


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”


Precision Medicine Initiative

•  LaunchedbyPresidentObamainhisJanuary2015StateoftheUnionaddress

•  Aimstoleverageadvancesingenomics,emergingmethodsformanagingandanalyzinglargedatasets,andhealthICTstoacceleratebiomedicaldiscoveries–  whileprotec7ngprivacy

•  Planstoenrollonemillionormorevolunteersandmayincludechildren

“commi=edtoengagingmul7plesectorsandforgingstrongpartnershipswith

academicandothernon-profitresearchers,pa7entgroups,andtheprivatesectortocapitalizeonworkalreadyunderway”


Big projects, Big problems Ø  VerylargescaleØ  InterdisciplinaryØ  HumansubjectsØ  Inter-state/interna7onal/globalØ  Mul7plejurisdic7onsØ  Cross-sectorpartners(public/private)Ø  Culturaldifferences


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


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?


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


“…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


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?


Library Roles and Competencies •  Dataareformsofinforma7onrequiringstewardship

–  likethemanyotherknowledgeresourceslibrariesmanage

•  Bigdata2.0ini7a7vesposepar7cularchallenges–  becauseoftheirscale,variety,complexity,andopenness

•  Librariesarewellposi7onedtoassumeaproac7verole–  buildingontheirexis7ngworkinscholarlycommunica7on

•  Poten7alrolesforlibrariesinthebigdataarenarequireprofessional,technical,organiza7onal,managerial,personal,andinterpersonalknowledge,skills,andabili7es–  includingexper7seassociatedwithotherprofessionsandenhancedcompetenciesinrela7onshipmanagement


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)


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.


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.

Any Questions?

SheilaCorrallscorrall@pi=.edu

[email protected]=.eduDepartmentofInforma1onCulture&DataStewardship

SchoolofInforma7onSciences

legal, ethical, and policy issues of “big data...

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