department of information culture and data stewardship ...d-scholarship.pitt.edu/32530/1/corrall...

Transferability of Data-Related Roles and Competencies

Sheila Corrall [email protected]

Department of Information Culture and Data Stewardship

Information Culture & Data Stewardship

The Next Frontier – Big Data 2.0 Four Questions for Debate

•  Whatdoesitmeantohavedataawarenessandunderstandinginthenewworldofmassiveopenonlinedataandcon7nuouspar7cipatoryresearchprograms?

•  Howcaninforma7onspecialistscapitalizeontheirevolvingdata-relatedrolesandcompetenciesintheBigDataera?

•  Whereshouldlibrariansconcentratetheireffortstocreaterealvaluefortheindividualsandcommuni7estheyserve?

•  Howcanprac77onerscollaboratetomakeabigdifferenceinourfast-movingdata-richsociety?


Libraries, Librarians, and Data

•  Socialsciencedataarchivesandgeospa7aldataresources–  localdatalibraries/supportservices

establishedinthe1980sand1990s(e.g.,Edinburgh,Oxford,LSE)

•  Networkeddata-intensivescienceandresearchdataservices–  exploringdatacura7onandstorage,

advisingondatamanagementplans(e.g.,GeorgiaTech,Purdue,MIT)

TheWayWeWere(2012)–AnEvolvingLandscape

(Corrall,2012)


Libraries, Librarians, and Data

•  Datacentres/repositories•  Linkeddata•  Dataanaly7cs•  Datawarehouses•  Datavisualiza7on•  Datajournals/papers•  Datacita7on•  Textanddatamining

BeyondResearchSupport

•  Researchdataservices•  Opendataforcollec7ons•  Learninganaly7csprojects•  Helpingresearcherstouse

datavisualiza7ontools•  Usingdatavisualiza7onin

libraryassessment•  Metadataconsultancy•  Facilita7ngresearchusing

textanddatamining

WhereAreWeNow?–TheNewCentreofGravity(2017)Newvocabulary,Newroles,responsibili3es,rela3onships


RDM Tiered Service Delivery Model

(Ma_ern,Brenner&Lyon,2016,p.29)

BasicRDMServiceProviders

AdvancedRDMServiceProviders

SpecialistRDMServiceProviders

Allpublic-facingstaff,generalawareness

Discipline-basedknowledge(e.g.,liaisonlibrarians)

Explicitdata-relatedresponsibili7es,within-depthcompetencies

From niche activity to mainstream service

3 2

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The Next Frontier – Big Data 2.0 •  Converginge-science,businessintelligence,crowdsourcing,

bigdataanaly7cs,socialmediaandWeb2.0technologies•  Enablingbroaderanddeeperapplica7onsofanaly7caltools•  Locatedinacademic/researchins7tu7ons,usuallybasedon

publicpar7cipa7onandobeninvolvingcommercialplayers•  Takingverylarge-scaledata-intensiveresearchtonewlevels

oforganiza7onalandsocio-technicalcomplexity•  Raisingethical,legalandpolicyissues

Massive Open Online Data Studies M O O D S


“Thehealthcarefieldgeneratesanenormousamountofdataeveryday.Thereisaneed,andopportunity,tominethisdataandprovideittothemedicalresearchersandprac77onerswhocanputittoworkinreallife,tobenefitrealpeople.Manyorganiza7onscanfulfillpartofthisprocess,butnoneofthemareequippedtobeginwithrawdata,developanideaandmovethatideadirectlyintoaprac7cesefng.”

What roles can libraries and librarians play in such endeavours?

World-classCS/machinelearning

Medical+research+exper7se

Deepdata,clinicalsefng,commercializa7on

Secondary data analysis


Defining digital medicine “Thepa'entisanenormousrepositoryofinforma'onthatneedstobeharvestedasapartnershipnotonlyinclinicalcarebutindiscovery.

Itistheonlywaywewilldefinewellnessanditsprogressiontodisease,ratherthantradi7onalmedicinethatdefinesdiseaseanditsprogressiontodeath.”

(AusielloinElenkoetal.,2015,p.456)

Embodied information practices!


Precision Medicine Initiative •  LaunchedbyPresidentObamainhis

January2015StateoftheUnionaddress•  Aimstoleverageadvancesingenomics,

emergingmethodsformanagingandanalyzinglargedatasets,andhealthICTstoacceleratebiomedicaldiscoveries–  whileprotec7ngprivacy

•  Planstoenrollonemillionormorevolunteersandmayincludechildren

“commi_edtoengagingmul7plesectorsandforgingstrongpartnershipswith

academicandothernon-profitresearchers,pa7entgroups,andtheprivatesectortocapitalizeonworkalreadyunderway”

Participatory research All of Us


Precision Medicine Initiative – issues… “There’sprivacyissues.We’vegottofigureouthowdowemakesurethatifIdonatemydatatothisbigpoolthatit’snotgoingtobemisused,thatit’snotgoingtobecommercializedinsomewaythatIdon’tknowabout.

Andsowe’vegottosetupaseriesofstructuresthatmakemeconfidentthatifI’mmakingthatcontribu7ontosciencethatI’mnotgoingtoendupgefngabunchofspamtarge7ngpeoplewhohaveapar7culardiseaseImayhave.”

(Obama,2016,February25)

Ethical, legal, and social implications?


Valuesstatement


About PGP HarvardPGPis“anopenscienceresearchproject…designedtocreatepublicscien7ficresourcesthateveryonecanaccessbybringingtogethergenomic,environmental,andhumantraitdatadonatedbyourpar7cipants”•  FoundedatHarvardMedicalSchoolin2005,nowaGlobalNetwork

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

•  HarvardPGPisstaffedbyasmall,largelyvolunteergroupofresearchers,engineers,andethicistswhoareallpioneersintheirfields

•  MembersoftheGlobalNetworkfollowacommonsetofguidelines,butthequan7tyandqualityofinforma7ononna7onalsitesvariessignificantly

“Privacy,confiden7alityandanonymityareimpossibletoguaranteeina...researchstudywherepublicsharingofgene7cdataisanexplicitgoal”

Personal Genome Project


d)  Oversight.EachmembermustmaintaincurrentIns7tu7onalReviewBoard[ResearchEthics]orlocalequivalentapproval

e)  Notforprofit.Managedorsponsoredbyanon-profitorganiza7on(orlocalequivalent).–  Amembershallnotsellor

licensepar7cipantdataor7ssuesexceptforpurposesof“reasonablecostrecovery”

Pretty Good Privacy?

Guidelines of the Global PGP Network a)  PublicData.Par7cipantsare

invitedtosharegenomicandtraitdatausingaCC0waiver

b)  Non-anonymous.Risksofpar7cipantre-iden7fica7onareaddressedupfrontaspartoftheconsentandenrollmentprocess− Neitheranonymitynor

confiden'alityoftheirdataispromisedtopar'cipants

c)  Equalaccess.Par7cipantsaregiven7melyandcompleteaccesstotheirindividualdatai.e.,rawdataandnotjustsummaryresults“wherefeasible”


Background “Amajorna7onalhealthresource”•  Registeredcharity•  Est.byWellcomeTrust,MRC,

Dept.ofHealth,ScofshGov.,andNWRegionalDev.Agency;fundedbyWelshDev.Agency,BHFandDiabetesUK

•  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/

So, what are the ‘best science’ and ‘best ethical practice’ lessons to be learned from UK Biobank?


“…a precedent-setting case” •  Researcherswantedtouse

UKBiobanktoiden7fypeopletoinviteintoaseparatestudy

•  TheyaskedUKBiobanktosendanintroductoryemailtoitspar7cipantspoin7ngtothewebsiteofthenewstudy

•  Offeringsucharecruitmentmechanismcouldbenefittheresearchcommunity–  Buttake7meandresources

thatcouldbeusedelsewhere

•  InwhatcircumstanceswoulditbeacceptableforBiobanktodivertresourcesinthisway?–  Howshouldadhocthird-party

re-contactsbeaccommodated?

•  UKBEGCproposedtwoop7ons–  Createadedicatedwebpageto

provideneutralinforma7onabout(approved)studies

–  ProvideawithdrawalcategoryallowingBiobankpar7cipantsopt-outfromemailinvita7ons

Theprojectwasapprovedasapilotsubjecttofi:ngwithBiobank’s3metableofre-contactsandwillbeusedtodrawupaframeworkforfuturerequests

UKBIOBANKETHICSANDGOVERNANCECOUNCILANNUALREVIEW2015


“…from a signature on a legal form to a

process that educates”


Issues arising from Big Data 2.0 projects Legal compliance •  Privacylaws•  Dataprotec7onlegisla7on•  Righttobeforgo_en•  Gene7cinforma7onlaws•  Freedomofinforma7on•  Intellectualproperty

e.g.,paten7nghumangenes(cf.EUandUScaseruling)

•  Licensing/contractualissues•  Publishing

Ethical challenges •  Privacy•  Anonymity

–protec7onfrombadactorse.g.,cybercriminals,hac7vists

•  Mone7za7on–sellingofhealthdata

•  Conflictsofinterest•  Informedconsent•  Solicita7onofdonorsfor

par7cipa7oninotherstudies


Policy questions arising from Big Data 2.0 •  Howandbywhomwillhealthdata/bigdatabepreservedand

maderetrievableforandbyfuturestakeholders?•  Whatguidelinesandrequirementsareneededforpublishing

relatedtohealthdata/bigdata?•  Whoneedstohaveavoiceinpolicy-sefngandpolicy-making,and

whoshouldcrabthegoverningpoliciesandcodesofethics?☞ Giventhepaceofchange,howobenshouldpoliciesandcodesbe

reviewedandupdated?

•  Whatoversightandenforcementmechanismsareneededtoensurecompliance?☞ Whatarethepenal7esforpiracyofhealthdataormalfeasance,

negligence,willfulblindness,andharmfulimpactsonhumansubjects?☞ Whatprotec7onsareavailableorneedtobedevelopedandcodified

forwhistleblowerswhoreportlapsesandbreachesofcompliance?


Big Data 2.0 – Potential roles for info pros Global megaprojects Ø  VerylargescaleØ  InterdisciplinaryØ  HumansubjectsØ  Inter-state/interna7onalØ Mul7plejurisdic7onsØ  Cross-sectorpartnersØ  Differentcultures

Advancing knowledge to benefit society, but raising multiple issues of concern…

•  Dataethics–monitoringprac7cesandadvoca7ngorcontribu7ngtopolicyfordataprotec7onandresearchintegrity

•  Dataliteracy–extendingeduca7ontocoverpersonal,social,professionalandscholarlycontextsofdatacrea7on,sharinganduse

•  Digitalcura'on–applyingrepositoryandRDMknow-how(e.g.,metadataadviceandconsultancy)

•  Interdisciplinaryfacilitators–helpingmul7disciplinaryteamsnavigateunfamiliarterritory


Conclusion – Critical roles for LIS Ø Mainstreamdataliteracyandadoptholis7capproachesto

includedatahandlingineduca7on,work,andeverydaylifeØ  Raiseawarenessofethical,legal,andsocialimplica7ons(ELSI)

oflarge-scalepar7cipatorydata-intensiveprojectsØ Workproac7velyacrossprofessionalandsectoralboundaries

toshareandtransferessen7alknow-how(e.g.,metadata)

Provide a human-centred perspective – The conscience of the big data world

Acknowledgement – Specialthankstomycollaborator,Dr.JamesD.(Kip)Currier,forhisexpertanalysisoftheethical,legalandpolicyissuesarisingfromtheBigData2.0casestudies.

department of information culture and data stewardship ...d-scholarship.pitt.edu/32530/1/corrall...

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