Ethical Issues of Big Data 2.0 Collaborationsd-scholarship.pitt.edu/32524/1/Corrall-Currier ALISE 2017 (6.4).pdf · Ø Linked open collec4ons data for cultural heritage ins4tu4ons

Ethical Issues of Big Data 2.0 Collaborations Roles and Preparation of Information Specialists

Sheila Corrall Kip Currier

Information Culture & Data Stewardship

Ethical Issues of Big Data 2.0 Collaborations: Roles and Preparation of Information Specialists Outline •  Thedatashi+andevolvinginforma4onserviceslandscape

–  currentandemergentrolesforlibrariesandlibrarians

•  Bigdata2.0:MassiveOpenOnlineData-drivenStudies(MOODS)–examplesofprojects,iden4fica4onofissues

•  Developinginfoprosasdataethicists–  roles:responsibili4esandrela4onships–  competencies:componentsandcontexts–  educa4on:modulesandmethods

•  Reviewandsummary


Technology trends – the data shift “…technologyhasenableddatatobecometheprevalentmaterialandcurrencyofresearch.Data,notinforma4on,notpublica4ons,israpidlybecomingtheaccepted

deliverableofresearch”GrahamPryor,DCC(2012)

Dataisthenewcurrency–  thenewformofexchangein

thebusinessworld+  inthepublicsectorwhere

governmentsarekeyplayers


The evolving (library) data landscape Ø  Socialsciencedataarchivesandgeospa4aldataresourcesØ  Networkeddata-intensivescienceandresearchdataservicesØ  Linkedopencollec4onsdataforculturalheritageins4tu4onsØ  Dataanaly4csandvisualiza4onforresearchandassessmentØ  Crea4nglocaldatainfrastructuresandmetadataschemesØ  RegionalopendatacentersformunicipalgovernmentsØ  DigitalprivacyanddataliteracytraininginpubliclibrariesØ  ProvidingsupportforresearchersusingtextanddataminingØ  AdvisingonIPRandethicsconflictsarisingfromBigData

Librariesandlibrariansarealreadyengagingwithdataasresourcesforresearch,publicpar8cipa8on,andassessment


A measured approach: The conscience of the big data world? “Currentlymostlibrariesseemtobe(accidentally)providingahugehoardofprivateuserdatatovirtuallyanyonewhowantsit,butnotactuallyusinganyofitthemselves.Ifwearetocrediblyclaimtobedefendersofintellectualfreedomandresponsivetoourcommuni4es,weneedtousedatamorecleverly–andprotectmemberprivacywhilewedoso.”

HughRundle,informa4onflâneur(2015)

“Shouldwemoderateourtradi4onaldefenseofprivacytoenabledata-drivenprocesses…?Orshouldweplayamoreac4veroleindefendingprivacyinadigitalage?

BarbaraFister,GustavusAdolphusCollege(2015)


“Learning analytics in the library and the emergence of professional ethics conflicts” BigDatahasarriveincollegecampusesandclassroomsbywayoflearninganaly4cs(LA)ini4a4ves.LAmeasures,collects,analyzes,andreportsonstudentbehaviorsinordertoimprovelearningenvironmentsandoutcomes.Now,academiclibrariesareconsideringtheirroleintrackingandac4ngonanalyzableflowsofstudentdata.However,LAcomeswithmoralandethicalproblemsrelatedtostudents’intellectualprivacyandintellectualfreedom....LibrariesmustthereforeconsiderhowLAini4a4vescontradictethicalprinciplessetforthintheAmericanLibraryAssocia4on’s“CodeofEthics.”

KyleMachewLauerJones,IndianaUniversity&DorotheaSalo,UniversityofWisconsin-Madison(Session4.3C)


Data roles of libraries and librarians Currentroles•  Accessmanagement

–  facilita4ngexternaldatasetuse

•  Dataliteracy–  educa4ngstudentsandfaculty

aboutmanagingresearchdata–  preparinggraduatesforworking

withdatainemployment

•  Collec8onbuilding–  audi4ngandappraisingdataassets,

catalogingandarchivingdatasets

•  Publishingsupport–  advisingoniden4fying,ci4ng,

sharing,licensingandimpact

•  Policydevelopment

Emergentroles•  Dataliteracy

–  preparingfrontlinestafftoadviseondigitalprivacyordataprofiling

•  Metadataconsultancy–  providingspecialistexper4seto

supportopendatasharing

•  Infrastructuredevelopment–  servingaslocalplakormsfor

opendatainsmallercommuni4es–  hos4ngdatahackathonsand

facilita4ngdatadeposit

•  Dataprotec8on–  promo4ngresponsibleuseof

personalpatron/studentdata


Big Data 2.0 – The next frontier •  Convergese-sciencewith

businessintelligence,crowdsourcing,bigdataanaly4cs,socialmediaandWeb2.0technologies

•  Enablesbroaderanddeeperapplica4onsofanaly4caltools

•  Takesdata-drivenresearchtonewlevelsoftechnicalandorganiza4onalcomplexity

•  Locatedinacademic/researchins4tu4ons,butbasedonpublicpar4cipa4on

Global megaprojects Ø  VerylargescaleØ  InterdisciplinaryØ  HumansubjectsØ  Inter-state/interna4onalØ Mul4plejurisdic4onsØ  Cross-sectorpartnersØ  Differentcultures

•  Advancingknowledgetobenefitsociety,butraisingmul4pleissuesofconcern…


Research questions RQ1 WhatethicalissuesareraisedbyBigData2.0ini4a4ves?RQ2 Whatbestprac4cesareemergingtoinformresponsesto

thechallengespresented?RQ3 Whatrolescaninforma4onprofessionalsplayin

promo4ngethicalprac4cesinthebigdataenvironment?RQ4 Whatcompetencies(knowledge,skills,andabili4es)are

requiredtoperformtheenvisionedroles?

RQ5 HowcanLISeducatorspreparenewandexperiencedinforma4onprofessionalstoperformasdataethicists?

Researchstrategy Mul4ple-casestudyusingexis4ngdocumentsasdatasources


“Thehealthcarefieldgeneratesanenormousamountofdataeveryday.Thereisaneed,andopportunity,tominethisdataandprovideittothemedicalresearchersandprac44onerswhocanputittoworkinreallife,tobenefitrealpeople.Manyorganiza4onscanfulfillpartofthisprocess,butnoneofthemareequippedtobeginwithrawdata,developanideaandmovethatideadirectlyintoaprac4cesepng.”

What roles can libraries and librarians play in such endeavors?

World-classCS/machinelearning

Medical+research+exper4se

Deepdata,clinicalsepng,commercializa4on



About PGP HarvardPGPis“anopenscienceresearchproject…designedtocreatepublicscien4ficresourcesthateveryonecanaccessbybringingtogethergenomic,environmental,andhumantraitdatadonatedbyourpar4cipants”•  FoundedatHarvardMedicalSchoolin2005,nowaGlobalNetwork

involvingCanada(UniversityofToronto),theUK(UCL)andAustria(AustrianAcademyofSciences)

•  HarvardPGPisstaffedbyasmall,largelyvolunteergroupofresearchers,engineers,andethicistswhoareallpioneersintheirfields.

•  MembersoftheGlobalNetworkfollowacommonsetofguidelines,butthequan4tyandqualityofinforma4ononna4onalsitesvariessignificantly

“Privacy,confiden4alityandanonymityareimpossibletoguaranteeina...researchstudywherepublicsharingofgene4cdataisanexplicitgoal”

Personal Genome Project


d)  Oversight.EachmembermustmaintaincurrentIns4tu4onalReviewBoard[ResearchEthics]orlocalequivalentapproval

e)  Notforprofit.Managedorsponsoredbyanon-profitorganiza4on(orlocalequivalent).–  Amembershallnotsellor

licensepar4cipantdataor4ssues“otherthanpurposesofreasonablecostrecovery”

Pretty Good Privacy?

Guidelines of the Global PGP Network a)  PublicData.Par4cipantsare

invitedtosharegenomicandtraitdatausingaCC0waiver

b)  Non-anonymous.Risksofpar4cipantre-iden4fica4onareaddressedupfrontaspartoftheconsentandenrollmentprocess− Neitheranonymitynor

confiden8alityoftheirdataispromisedtopar8cipants

c)  Equalaccess.Par4cipantsaregiven4melyandcompleteaccesstotheirindividualdatai.e.,rawdataandnotjustsummaryresults“wherefeasible”


Precision Medicine Initiative •  LaunchedbyPresidentObamainhis

January2015StateoftheUnionaddress•  Aimstoleverageadvancesingenomics,

emergingmethodsformanagingandanalyzinglargedatasets,andhealthICTstoacceleratebiomedicaldiscoveries–  whileprotec4ngprivacy

•  Planstoenrollonemillionormorevolunteersandmayincludechildren

“commicedtoengagingmul4plesectorsandforgingstrongpartnershipswith

academicandothernon-profitresearchers,pa4entgroups,andtheprivatesectortocapitalizeonworkalreadyunderway”

All of Us


Valuesstatement



Background “Amajorna4onalhealthresource”•  Registeredcharity•  Est.byWellcomeTrust,MRC,

Dept.ofHealth,ScopshGov.,andNWRegionalDev.Agency;fundedbyWelshDev.Agency,BHF,andDiabetesUK)

•  HostedbyU.Manchester,supportedbyNHS

•  Opentobonafideresearchersanywhereintheworld,includingthosefundedbyacademiaandindustry

•  Aimstoimprovepreven4on,diagnosisandtreatmentoflife-threateningillnesses

•  Recruited500,000peopleaged40-69in2006-2010

•  Par4cipantshaveundergonemeasures,providedblood,urineandsalivasamples,anddetailedpersonalinforma4on–  andagreedtohavetheirhealthfollowed

“…tohelpscien4stsdiscoverwhysomepeopledeveloppar4culardiseasesandothersdonot”


Best Ethical Practice? UKBiobankwantstobe“amodelnotonlyforbestsciencebutforbestethicalprac4cetoo,inrela4ontothesebigbiobankprojects”ProfessorRogerBrownsword,Chair(2011-2015)UKBiobankEthicsandGovernanceCouncil(UKEGC)hcp://www.ukbiobank.ac.uk/ethics/

What are some of the “best science” and “best ethical practice” lessons that can be learned from UK Biobank?


Ethical issues from Big Data 2.0 projects •  Privacy•  Anonymity

–  protec4onfrombadactorse.g.,cybercriminals,hac4vists

•  Mone4za4on-  sellingofhealthdata

•  Conflictsofinterest•  Informedconsent

–  onlineinformedconsent,portableonline/legalconsent,dynamicconsent,broadconsent,presumedconsent

•  Solicita4onofdonors–  forpar4cipa4oninother

(independent)researchstudies



“…a precedent-setting case” •  Researcherswantedtouse

UKBiobanktoiden4fypeopletoinviteintoaseparatestudy

•  TheyaskedUKBiobanktosendanintroductoryemailtoitspar4cipantspoin4ngtothewebsiteofthenewstudy

•  Offeringsucharecruitmentmechanismcouldbenefittheresearchcommunity–  Buttake4meandresources

thatcouldbeusedelsewhere

•  InwhatcircumstanceswoulditbeacceptableforBiobanktodivertresourcesinthisway?–  Howshouldadhocthird-party

re-contactsbeaccommodated?

•  UKBEGCproposedtwoop4ons–  Createadedicatedwebpageto

provideneutralinforma4onabout(approved)studies

–  ProvideawithdrawalcategoryallowingBiobankpar4cipantsopt-outfromemailinvita4ons

Theprojectwasapprovedasapilotsubjecttofi6ngwithBiobank’s;metableofre-contactsandwillbeusedtodrawupaframeworkforfuturerequests

UKBIOBANKETHICSANDGOVERNANCECOUNCILANNUALREVIEW2015


Roles for info pros as data ethicists •  Dataadvisor/consultant–dealingwithqueriesaboutdataaccess,

privacy/protec4on,sharing,anduseatreferencedesksorpointofneed

•  Dataliteracyeducators–extendinginforma4onliteracyinstruc4ontodatauseindiversecontexts:learning,theworkplace,andeverydaylife

•  Interdisciplinaryfacilitators–helpingmul4disciplinaryresearchteamsnego4ateunfamiliarinforma4onresourcesandintellectualnorms

•  Policydevelopers–contribu4ngtoorleadingonformula4onofdatamanagementpolicyandproduc4onofguidelinesonimplementa4on

•  Researchethicspartners–suppor4ngethicsandRCR/RDMtraining,developingonlineresources,andservingonins4tu4onalreviewboards

•  Cross-culturalmediators–an4cipa4ngculturaldifferencesandaler4ngstakeholderstoissuesarisingfrompluralandconflic4ngvalues

– an ethical responsibility to engage!


Ethicalsensi4vity

Ethicalknowledge

Ethicalreflec4on

Ethicaldecisionmaking

Ethicalac4on

Ethicalbehavior

Ethicalcompetence

Components of ethical competence

(Lechasseuretal.,2016)


Competencies for data ethicists •  Awarenessofbigdatatrendsanddevelopments

–  includinglocalini4a4ves,programsandprojects

•  Knowledgeofkeyethicalprinciples,codesandpolicies–  bothprofessional(libraryandinforma4on)ethicsandresearchethics

(includingInternet/online/virtualresearchethics)

•  Moralsensi4vity,judgment,mo4va4on,andcharacter–  theabilitytorecognizeethicaltensions,toreflect/thinkcri4callyand

makeinformeddecisions,tounderstandprofessionalobliga4onsandresponsibili4es,andtoactandbehavewithrespectforothers

•  Skillsincri4calthinking,reflec4on,analysis,andadvocacy–  alreadypartoftheinforma4onspecialist’sprofessionalskillset

Generic and contextually situated know-how


Pedagogical strategies •  Partofafounda4onalcourse/requiredcurriculum•  Concentratedinarequiredorelec4vestandalonecourse

•  Distributedacrossmul4plecourses-  Integratedintospecializedelec4vesforcontextually-situatedlearning

Teaching methods •  Readingsandcases•  Debates,roleplays,andobserva4ons–shadowinginsitu


Education for data ethicists •  Guidedreading,listening,andviewing

–  Blogposts,Books,Journalar4cles,Magazinefeatures,Newsstories,Videos…

•  Casestudies/reports/materials–  Originalorpublishedsetsofparadigma4ccasesforanalysisanddiscussion,with

ques4onsand/orcommentariestoencouragecri4calreflec4on•  Formaldebates(withvo4ng)

–  Dividestudentsintogroupsandteams,provideadebatemo4on,assigntopar4cularsides(proposingoropposing),supplyinstruc4ons/resources,andaskteammemberstodevelopargumentssuppor4ngtheviewsassigned

–  Onsite/online(synchronouswebconferenceorasynchronousdiscussionboard)

•  Roleplays(andobserva4on)–  Askstudentstoplayacharacterinacasestudyportrayingarealis4c,difficult

ethicalsitua4onthatillustratesdivergentperspec4vesonthesameproblem–  Providedescrip4onsofthesitua4onandscript/leadinglinestogetthemstarted

•  Immersiveexperiences–  Studentsspendadayobservingresearchersworkingwithdatainalaboratory


Framework for Ethical Decision Making

Recognize an Ethical Issue 1. Couldthisdecisionorsitua4onbedamagingtosomeoneortosome

group?2. Doesthisdecisioninvolveachoicebetweenagoodandbad

alterna4ve,orperhapsbetweentwo“goods”orbetweentwo“bads”?

Get the Facts 3. Whataretherelevantfactsofthecase?Whatfactsarenotknown?

CanIlearnmoreaboutthesitua4on?DoIknowenoughtomakeadecision?

4. Whatindividualsandgroupshaveanimportantstakeintheoutcome?Aresomeconcernsmoreimportant?Why?

5. Whataretheop4onsforac4ng?Havealltherelevantpersonsandgroupsbeenconsulted?HaveIiden4fiedcrea4veop4ons?


Framework for Ethical Decision Making (continued)

Evaluate Alternative Actions 6.  Evaluatetheop4onsbyaskingthefollowingques4ons:

•  Whichop4onwillproducethemostgoodanddotheleastharm?(TheU4litarianApproach)

•  Whichop4onbestrespectstherightsofallwhohaveastake?(TheRightsApproach)•  Whichop4ontreatspeopleequallyorpropor4onately?(TheJus4ceApproach)•  Whichop4onbestservesthecommunityasawhole,notjustsomemembers?(TheCommonGoodApproach)

•  Whichop4onleadsmetoactasthesortofpersonIwanttobe?(TheVirtueApproach)

Make a Decision and Test It 7. Consideringalltheseapproaches,whichop4onbestaddressesthesitua4on?8.  IfItoldsomeoneIrespect-ortoldatelevisionaudience-whichop4onIhave

chosen,whatwouldtheysay?

Act and Reflect on the Outcome 9. Howcanmydecisionbeimplementedwiththegreatestcareandacen4ontothe

concernsofallstakeholders?10. HowdidmydecisionturnoutandwhathaveIlearnedfromthisspecificsitua4on?


Review and summary •  Informa4onprofessionalscanactasbigdata2.0advisors/

consultants,interdisciplinaryfacilitators,policydevelopers,researchethicspartners,andcross-culturalmediators

•  Bigdataworkersneedtodevelopawarenessoftrendsanddevelopmentsinthefield,knowledgeofethicsprinciples,codes,andpolicies,moralsensi8vity,judgment,mo8va8on,andbehavior,andskillsincri4calthinkingandreflec4on,analysis,andadvocacy.

•  Wecanpreparestudentsforworkinginthebigdataarenawithreadingsandviewings,casestudies,debates,roleplays,andimmersiveexperiencesofshadowingresearchersinlabs–  byembeddingdataethicseduca4oninfounda4onaland

othercoursesandouroutside-the-classroomcurriculum

Questions and comments

SheilaCorrallDepartmentofInforma4onCulture&DataStewardship

[email protected]/people/corrall.php

Documents

Ethical Issues of Big Data 2.0 Collaborationsd-scholarship.pitt.edu/32524/1/Corrall-Currier ALISE 2017 (6.4).pdf · Ø Linked open collec4ons data for cultural heritage ins4tu4ons