ethics research children

8/8/2019 Ethics Research Children

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3:Respector rights:Privacy ndntialityis a vial cthicd concemalthough t has not alwaysbecnin rcscarchwith adults or childrcn. This section cviews's rights to:- avoiding nducntrusiooo@ heirpe,sonal ffaimiality - conceeling theil idcnrity and somcrimes orherswhen reponing hem.scction eviews egal rights and reporB a rccenrAuslaalianon confidential iryt comparcs pt-inandopt'outaccessgivesa detailed hecklistabout especting rivacyandat thc Data Protection Act, recommending good practice iniog confidentiality. his scctionalsocoNidersextraquestionsprivacymisedby intimacybetweenstrangers uring research,icws,and n projectshat involveemailsand websites,Finally,whelher duties, rights and utilities (box 1.6) need ro be

with grcatcr oncemaboutcomplicatcd elationships,practicesand emolions in research.

riShts to confidentiallt/have many of thc sarne ights to confidentialiry rhar adultsFor example, ompetentchildrcn can ask heir docors not toanyoncalseEbout heir case nd can expect his rcqucst o beI Children have somc extra rights - for example rhe rightto have heir names ublished n thc media f they are nvolvedthc law couns (atthough this has changed for pcrsistent youngders).No onc has an absolule righr o confidcncialiry nd amay bc ustified n rarecascs,f it is thought hat someone3sctiousdangcr. f so, thc rescarcher hould finr encouragc ltcsho knoss about thc dangd to relk to adults who could hclpelsc to agicc thxt thc .cscerchcr should ralk to thcm. 'Guar|n -teatconfidcntialiry and aronymiry given aoresearchpani


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' -':. . be honourcd, unless thcrc are clcar and overriding reasonsto dootherwise,or examplen rclation o the abuse fchildren'.,The BSAGuidclines l$o t rc:'Rescarchnvolvingchildren cquiresperricula.carc.... Specialistadvice and expertisc should be soughr whercrelevant', lthough hc guidelines o not saywhere hescshouldbesought.There arc two key ethicalqucstlons:I If ir seems ecessaryo breachconfideotiality,s rhis first clcarly

discussed irh researchrticipantslr Should panicipanlsbe warned in advanceabout the limits ofconfidenrialirylIl is often said rhat researchersannot promiseconfidenciality ochildren, n casechildren dcscribeabuseor other information hatmust be reported,and perhgps cmanded,by thc couns.A reccntcase n Austreliashows hat rhis is not alwaysso. The case sirqportant in Britain, through the network ofCommonwealth Law.

Bor 3.1 R.tcarcl ard pmrrritcsof confdt rlialit, to clildren: a tegalclalle4eBy Patrick ParkinsonProfessor f Law and Judy CashmoreRcsearch sychologist, niversilyof Sydney2002A decisionof thc F.mily Coun of Australia ndicared rhatrescarchcooducted with childrcn uodea erprcss promises ofcorifidentialirymaybe prorcctcd rom subpoenaacourtordertoproduce thc data). Thc cese T o L, unreportcd, 12.10.2001,Collier J, Panamatta) r,oseiom researchwe conducredonchildreo's anicigationn,paking decisions bout csideDce ndcontacrfollowint thefup.rcnts' scparation.Parclltsand childrcnwcte intcrviewed ooly after p.oceedings were thought to bccompletcd. They werc all given exprcss,explicit undenakingsofconfidcntialily,orallyand n papersm.ilcd to familicsby thcFamily Coun of Awtnlia inviting rhem to contact us.Dr Caghmore intcrvicwed Mr T arrd hir childrcn, withassurancehat no funher legal proceedingswcrc contemplatcd

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Xp ubpoenas ould bc sought Later)proceedingslatcd up;!*rT issueda subpocnaseekingDr Cashmorc'snotcsandrcco.dings.He said hat he did not wani !o breachialiry but io havesomeovcrviewofwhat the childrento gain thc benefit of Dr Cashmorc'3 mpressiong, n6secouldhelp $e Court.We esistedhe subpoena,Jsruck down hc subpoena n rhreegrounds.Firstonpolicy, noting thar all the consentswerc given withof confidcnriality.f projcctsofthis kind 'aretoraged,rher! it is esscniial rhat pcople who rrish to takethose rcgremsnow hat heres confidenrialiryAlso]vital imponance hat the rcsearchers now rhat.., theiality that rhey have set up as the basis of thoseand the whole of thcir rcsearch annotbe impingedthc use of a subpoena...such s lhe pEscnt cese.be satisfied,aod find, that on the public policy aspectsubpoena houldbc struckdown.'on estoppcl (prcvcntion)and/or waivcr thc judgee casc whcn an iniured laval sailor sued the, Thc claim would havc been barred by theof Limimtions, but the Ministergavcwrittcn assurances

,ihe Statute would not be pleadcd. Yet leter, theamended ts de fcncc, dcnying thc claim andthe Statute. High Court Judges hcld thar thewas estopped from pleading the limiratronbecauset has earlid waivcd ts risht to do so. In thefay, Mr T could no! change his mind and to say, "Well,iraid t could be confidentia l hcn, but I no longersay t."thctc was E lack of legitimate orcnsicpurpose.This'fishing expcdition' to subpoena matcrial in casccame our of it. The judge also norcd that thcwcrc conducted for rcsearch purpo3cs, oot as anforcoun purposcs.in &rstralien courts influence case ldw in othcr& countrics. Thc judgcmcnt, albeir given;the cou.s" of a trial, suggcsts that coutB will


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protect bona fide research underraken with expressundertakings of confidentiality. The three grounds wereindependelt gmunds,any of which was sufficient to iustifvstriking down thc subpoena. The decision shoulj giveconfidence o reseatchetsn fuure, who conduct researchinvolviog amilics n conflict.

3,2 Opt-in or opt-out accessOptjn.reseatch anbe more espectful f people'sprivacy hanopa_out. With op!-in research,esearchersend ectets, ften via a thirdperson,nviting people o telephone r rerurna card f lhey wanr otake pan in rhe research r to have moredetails.The researchersmaythen only know detaiisabout peoplewho reply. However his cancleate barrie$ that make it harder for reseatchers o contactcertaingroups and ro include their views. Opt_out research_ whenresearchershone or knock on doorsor send a lefter saying harunlcsshe pe$oncalcels he visira rcsearcher ill call _ getshligherreturnmtesbut can nvadeprivacy.Box3.2 describes nesol.rtion otheseproblems, hich eadersmay ike to debate.

Bot 3.2Opt l oi"optoxt b! seldorncard gmlps?Ruth Marchant,Tiiangle, reponedon re-search ith looked-afteryoungPeopte.Opt-out researcholms sent ro young people do oot reachthem all, suchas thosewho havehad recentcare placementrnoves.flhey do nor rerurdopt-outorms,hey arecontacrcd vresearchers irhour heir agreement.But opt-in merhods anttlvolve losingmaoy pcoplewho might like to rake pan but whota nol contactthe rctearchersas requested. Researchers t lheNari*al Qhildrcn's Bureau found that rome parents/c:rrels,ffi|_$t young eople.r" no, n*t""*i ir,Joioiig-",#:lco FFcq bur the reseercheffwereno! alvgys convinccd,that this was not 60. Sorsq.gocialworkirs

tiid to pass nformation on to pooplc with sensory leaming*guagedifficulties, worried thar they were ror comDclent toBct or refuse,evenwhen researchers ad madeextra effonsllg pa.ticipation equestsand researchmethods,andtransletorc/signers.dte recruitment methods discriminate agains! hard toit groups,whose oiceneeds o beheardand hardlvevq is.

g!archwith 30 families, we ask SocialSewicesfor, say,90and addresses.ocialServiceshen send amiliesa le$erthat, unless hey ndicareotherwise, heir detailswill be-fo the researcheam.We then selecr30 namesand socialdo not knowwhich 30 hey are.We sendan nformationleftersayingrhet nless he patentsndicateotherwise,will ring the parent or child at home. A seniorer will thert ing the parenls.They mrely efusedespitetraditionally hard to reach' amilies.We usuallyachieveceDt nclusionof childrcnor families,whereas n earlierinvolvedonly l0 per ceni

resPectlooksat respectn a rangeofmethods.in the useof recolds, asenotcs,archives ndotherwhen he people ecorded renot approachedircctly,wouldmind how heir dataareuscdand ntemrcredltheybe contacted ndasked or their consendquestionnaires,ow far s ir right to askquestions hat might

or upsetpeoplel Do questionnaires nd highly srructuredmiss ou! topics, questionsand optional replis that

for insance,might give ogical easonsor missing chool.MclPants ouldcorNider ital, or that wouldhelp o makesnsetheir seemingly llogical rcplies or behavioui?Some youngthc qu*tions and apprcachesespecr achagegroup,withoutrn8 dovrn o youngeachildrenlr


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AND CONsULTING,ND \AUNG PEOPTE

@o rccordings,videos and photographcollections raisc exua' q$sdons boutconfi enlialiay,Whcn collecdng hildren's ra$,ings, aps nd diaries,who shouldhavecopyrightand should heir authonhip be ackoowledgcdl Scebox 7.3.')t Inleaviewsrangc from highly structured question_and-answerlcssions o informal onvelsations. swith focusgtoupsand othcrgroupacdvitics, do the researcheisexeft too much control, in waysthat makethe panicipantj uncasy,or feel madeto saymorc or le;sthan hey wishrol_ The following is! gives ome eminders o consider bout espectfor privacy ndconfidcnriality.I How and why havc peoplc been chosenl f their namesare onconfidential ists,suchasat risk registcrs,will researchcF nsurethat heydo no! see he isrs?Only professionals ith accesso thelist $hould elect he names nd approachhc people. fthe peopleagrce, he rescarchers an then be informcd. erc the peopie toldeboutmeansof accesso thcir naries and why they werc chosen?ls evcryonegivcn a choiceabout rf,hethr tey are tape-rccordedorrrhcthernotcsaremade nsreadlt Howwill thc data nores, udioor video apes_ be srored oas ocomplyvirh the current Data proteccionActl (seescction 3.4).t Arc interviewshcld in a quici privarcplacc (this can be hard toarangc in homas and schools)lCan inrervieweeschoose forsomcone lse o be present fthcy wishlr Are panicipants told rha! cverything thcy say will remainconfidential (privare) and only quoted whcn rhey cannot beidcrtifiedl

r Do the padcipalrs wanr his confidenrialirylWould hcyratherbenamcdalld acknowledgedlfso, what s thc bcst rcsporrsofr Arc rhcy wamcd about limits ro confidcnaialiry if thcy mcndonscrious isk of halm to themsclvcsor ro othqFlI In acscarchhat usesgtoupdiscussionsow s co idcndaliw forthc pcople r lhc group, nd hepcople hcy alk about, ccpecred?This panly dcpcnds on the quesdonsbcing askcd - srouDdiscussionsrc nor so uscful for disclosing&ntc information... *

ou, u"o uscful or sharing iews,orffi aboura locel

EIHICgSOCIAL ESE\RCHNDWTH CHIIDRENNDYOUNC

bourhood. ChathamHouse rules' can be elplained clearlv.to youngchildren.They mcan hac .After!h. g.oup.".,iog,ean alk oorher eople bourwhat cseid. ui pteasc o iidtcm henameof theperson ho said t, or the.ramcs fadytheyncrc calking bout.'peopleapart rom hc researchcamwill be nformedabout.researchsessio[s, o the participants now and agree o theseother pcoplebeing nformedlwill sec acsea.ch ecords, ranscripo, notes, tapcs or filmsljournal editorsnow ask esearchcrso request onscnt romwhose photograph hey wish to publish in rcsearchresearch participanc havc a copy of any relevant lcttcts topeople, uchas f rcsearchc$ ire to tcachers, sychologistssocialworkcrrabouta childlwill reponsbe publishedn $rys that prorectprivacy changenrmes and olhcr derailsl)

-cotlsent to morc public aepons and orhcr usc of dala such a9or videosspecificallyequestcd rom eachpeBonlthe reseerchpafticipanrs ave any kind of editodal conrrol,asbcingablo o ask orsomccommcnls hey havemade o befrom any repons,and to check for faime$ and accuracy?participants asked to agrc to any follow up lcscarch, oruse of their datasuchas throughdata archivingl Thefor example,wantsprojects o be archived, otentially oraesearchcrgo use. Whcn is it best to ask peoplc for theirconsent to this? You do no! want to ovcrwhelm thcm withicated tcquests beforc an interview, but is ir good cnough tothem ater n thc projecrlOr is t better o esk hcm atcr,whenknow much more aboutwhat rhey have said,and how lheylike it o bc uscdor not uredl

Priyacy tthts


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frft lrarnf (al'.ltouth protcctionwas ncluded in cheearly ideasaboulautonomf).Ho$evcr,provision nd prorcction Eerch he meeninpof 'rights' from the original dca of non-inrerference,nto activJinte.ferercg albeit in lhe child's intcresrs. While protection isimponant, oycr-paotcctionan lead to children beiog reated aspassivcobjectsofconcem, lathcr than esactive moral agents n theirown righrT, nd his canexpose hem to grcaterrisk of being exploitedand evenabused y researchers.sxplicir rights,such as hosespeirout in the 1998Data ProtcctionAcr, can help !o clarify areasofconflict,and egulale elations erween articipants nd researchers.Tl! Dara Protectiond 1998Each airly arge esearchnstitulionhasan ofriccr o adviseon dalaprotection nd o tegister rojects ndd the Act. PeopleworkingonprojeaEn smallagencies lsonced to check details of the Act and.egisler heirprojects. his includcs ceping ull detailson:r purposesor holding thc dataI sources fthc datat individualsand organisationso whom data are disclosedI the sortsof datayou holdr wherher ouholdpanicula.ly ensidv ata,suchaserhnicoriginI whcther ou ntcnd o transfer ataabroad,

Bor 3.i Sone cJpoit B rom theAclI Pcrsonal ataarc any dara bout a person datasubject) harcanbc used o identifydur individual,I Datamust be obraincdand procesled ai.ly and lalrtrtly.r Individuali who supplydaramurt be madcfuFy awareof whythcy a.easked o do so,r Data musr bc hcld aod uscd ooly for drc cGrecificd,agrccdPUrpose3.

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why you arc using rhc data, and thc darasubiecthas

must notbe discloscdo eny Pc$onororganisation tierraaonesmentionedwhen the datearc collected.shouldbe edequdtc, clcvant and not excessivco thelgl,ose for which they atc held.frere is no planned use foi them, data shouldnot be kept.musi be accuratcand kcp! uP to date.dalamustnot bc hcld longca han s neccssary. atabe erased hen thcrc is no funhcr usc or them.

mustbeallowed ccesso any dataheldon hem, ncludingA pdntout must be produccdwithin ,f0 days,ocludingiesofall paper ocumenrs cld on the ndividual. nstitutionsfined if they do not comply.This does not apply to researchprovideddataarepublishcd n a purcly anonymous tatistical

and no data are disclosed that would help to ideltiry anIf any son of identification s published,hen the dataareanonymousand data subjccts thcn have access ights. (Inqualitative studies,peoplc may be quitc casily identified, evcnthey are anooymous. t is wise to kcep very carful, rc-spccdulin cese he people conccmcd evct wish to $ee hetn-)

luacticcon otJidcztiaitlke aeasonablemeasurcs to ensurc that unauthorised Pcoplcaccesshe data n computcrand paper ccords. f personalare displayed n a scrccn, og out beforc eaving he office'for a shonwhile.rlg a projecr, f you need o collcct more,or less,or differeo!or to disclosc au to differcnt peoplc,you must alceryourrecords.ext&l carc with seotitivc pgrsonal data, such as data about 'or ethnic origins,political opinions, rcligious beliefs' physical 'i.'Itcral oacdlruc ongrns,poutrcal oplnlons' rcllglousuEuerJ'v"'-''.- ' qqrid menql helth, sctual oricnt{tion or habi6 and cndu54 : '

Only hold sensitivc data if you havc cxplaincd to the date


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'3Al{ perronaldatamusrbe handlcdwith appropdare afeguetdsotiha rightsand recdoms f the darasubjcct.,* ts you saveword procestingdocumentswith letrersand orhcrdoumentl hal codtain ames odaddrcssesndother dcntifiabledetails,you must register hem. (lt is better to anonymiscallcomputetand other records,and to keep rhcm scparaccromrecords f personal etails.)Rltp.ct o/ prbaq igtK at lomt Puer.ts ot c^rersmay want to join inyoung pcople's intervicws at homc. As 'guests' of the family,interviewcrs canno! easily requesr a privare space fo( candidinterviewsor use the privacy of rhe child's bedrooms, or childprotectioneasons. omc hildrenmayprefcr o be interviewedwirhtheir parents, t least or the first partof their session, nd families'choicesand ioteracdons an provide very useful insighrs.Somcpa.ntshelp their childrer to givc fullcr replies.Howcver, otherparcnEmay nhibir and .ritate heir children. fso, researchers ayhave o rry tacrfirlly o a angea follow up in another etting.ConfdcnrialiEor oclno@hdgcrnt?Sometimes,hildrenvanr ro bc recognisedoi the rcsearch ala heygiveand or theirviewsandcxpericnces,heirdrawings r maps. erif childreoare named, hey may be idenii fiablc.And if one child isideotified,others n their group or schoolwho do not wish ro be;dentifiablemaybecome o.Thesequestions eed o be discussedothat reasonablyair solulionsmay be agreed.

&i lotlmacy betweenstrangershamiewsEthicspervadesvcrystepofresearch.orexample,of intcwicwss o serup mutuel espcct,usrand mppor!to obtain personal nd sornedmcsntin}[g and disncssingis en odd balance bcryeen busitle*i$ke and fricdiyThis involvesntervicwers singsympadab @chniqucs:tt thc samc ye cvet,not toocloseor todidstant, n aquiet,Privateplace st4rt that it is their risht lo withdtaw it any s4a

for permissiodo makenotesol tape ecordiogsng childrenhea(aheir wn voicc on the tape fthcy wishthcm by talking clearly, airly slowly and not t6okecping cyc contact,ookingand sounding ntercsred.peoplcmay agrec o bc interviewed ut seem ery unwillingorshy or embanasscd uring the interview.Somedo opcn upgendeprompting. f they do not, researchersould ry furtherIf thesedo not imprcvc mat!e$, it is respcctful o talk for aand hen end the ntewiewposirively nd hank them wirhouting it may have been awasteof dme.children like ro havea copy of aheir ranscriptor tape butoffering thcse ir is wonh thinking abour ho\/ confidentialmight remain. The children might have said things aboutmcmbcrswho might find the transcript.snsionsc n alsobe atr nged like a meeting between fricnds,chairs n a closecircle,end simpl equesB uchas pleascdon'tpt', 'listen to what eachperson ays' nd pleasetalk clearly ortaDerecorder'.Children should be able to foel frec to have apausc,and say, l don't want to ulk about hat', or'let's stop. Many researchersecognisc har children may bc morein pairsor groupsarrdoften prefcr to chooshow theyto taKe par!interactions an feel genuine o thc researcher, lthoughdo involvc skilled echnioues nd here s an mbalance etweendata-giving by panicipants, and the data control by rcseaichers.rappon s complicatcdduring nterviewsby the authorityadults hold over children,Assurancehat 'you can tell me anyyou want to stop' tcnds o deny powerful nfluences hal mayqttcr interviewces from saying hey want to leavc.

.':Aesearcher should bc sentitive to childrn's reltrctance, whichmay be unwillilg to express. eople an be distressod y bciDgI scnsitive qucstions about, for cxample, bullying' bets8:Iedor iving n a familywith HIV, Evet simple oPicsmightv9ry:1dbue$ peoplq pets, for instence, f their dog has ust Gqdale not tcadv to talk about it. Child.cn should be


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andalso n nter-Europeanerwork,The projecthad to develoi ,rosuppor! rivaieexchangeshrough heclosed ocal groupsand

lnrprviewor not answcr question. his canbe rehearsedtinterview. Researchers hould be alert to signs q1 6irclucunce.Road reffic tylesignshelpchildren to showii;;:to sropor withdraw theycanhold up the red-disc),pause(OJdisc)orcontinue rhegreendisc)., f respecto. yorrng p"..;",igenuine,t is honouredhroughall srages f the projeci, incollec!, nde$rand ndpresenrheirviews s airly aspossibiJ3.6Rightsnd he nternetNew technologies ring people nto very close contactworld. n a Europea[ project,young refugeesoined locale

morc anonymousguarded contac! when groups contactedanothe. hroughmorepublicsyslems.

ensuringhe security f data iansmissionsll raiseproblems.pwho do research nlineare adviscd o ensure har they knowoogoing ebates n the ethicsofintcrnet research, od to beabout respecting he well-being and privacy of online reparticipants. nline direcrconsultationslso aise hese ssuesnfastchangiry ield (box3.4).

ethics overmodern eseerchxPedencesnd

.how raditionalethicsconcemedduties, ights,l!4rms/benefits,These tend to be impe$onalin emotionsand implying that researchas t is well planoedand managed.n pfactice,dilemmas rise hroughoutprojec6,especiallynildren and othervulnerablegroups. f socialreview complex details seriously, t has to takeiooships, owerand emotions boxes .5-3.6).

British Sociological ssociarion rhics guidelines urge cauMtmbersshould akespecial arewhenresearching ia ahe nteEthicalstandardsor inrernet csearch.re not well develooedan d elicir ing nformedconsent. egoriarjng ccessag;massessinghe boundaries etween he public and rhe private.

ily provide a rep(esentative group ofiig people, and a few Peoplemay Sivemany

$-.-L-"a *tg peoPle do not have access o6 gauge anything about the charactetisticsofO are commc[ting - somemay be adults rn*oudr school,childre['s responsesmay be

Box3.4 Advartagcs rd disa&)aataget f orrline orrsttlrarion,Advantagesr Childrcn and young people often cnjoy this merhod ofcommunicatiol and see t as rclevant.I It can yield candid nformarionabout childlco's views andDriorities.

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ethics research children

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