Download - GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

Transcript
Page 1: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

DR . MARGAR E T ANN W I L K I N SON P R O F E S S O R , F A C U L T Y O F L A W

W E S T E R N U N I V E R S I T Y WITHTHANKSTOLAWSTUDENTAVERYLEE,WHOSERESEARCHCONTRIBUTIONWASSUPPORTED

BYTHESOCIALSCIENCESANDHUMANITIESCOUNCILGRANTHELDBYMISTRALEGOUDREAU(OTTAWA)ANDMARGARETANNWILKINSON(WESTERN)

GENEALOGYANDDNA

LondonGenealogicalSocietySaturdayOctober14,2017.

Page 2: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

CLANMACKENZIESOCIETYOFCANADA

•  Currentwebsite(hPp://www.clanmackenziecanada.ca)informaYon:

“TheSociety…inrecentyearshasestablishedaDNAProjecttohelpmembersfindcloserelaYonshipswithothersofthesamenameandmatchingDNAresults.”

Page 3: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

SOMERELEVANTDEFINITIONS

•  DNA=“deoxyribonucleicacidmoleculethatencodesgeneNc informaNonoforganismsandisoPenreferredto astheblueprintoflife”

•  DNAprofile=“aseriesof26numbersrepresenNngthe numberofDNArepeatsofspecificsequencesat13 locaNonsortestregions.DuetothevariaNoninthe differentlocaNons[onthegene]acollecNveprofileis generatedwhichishighlydiscriminaNngbetween individuals.”(asusedintheworldwideelectronicdatabasesystemforcriminallawenforcementknownasCODIS[COmbinedDNAIndexSystem])

(DefiniYonstakenfromtheGlossaryprovidedbytheRCMPathPp://www.rcmp-grc.gc.ca/nddb-bndg/gloss-eng.htm)

Page 4: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

HOWUSEFULISAUTOSOMALDNAMATCHING?

1stdegreerelaYves(parents,children,siblings)shareabout50%ofyourDNA:highlyaccuratetestscanbeperformedForeachdegreeofremovaladerthat,theexpectedaccuracyiscutinhalf(3rddegreerelaYves–1stcousinsorgreat-grandparents–will,onaverage,onlymatchwithyourDNA12.5%oftheYme)becauseautosomalDNAinheritanceaderthe1stdegreerelaYonshipoccursrandomly!TheDNAmatchingcanconfirmarelaYonship–especiallyfor1stdegreeanduptothe2nddegree(eggrandparentstoyou).However,beyondthe1stdegree,itcannotdisprovearelaYonship.

Page 5: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

WHENDOESLAWINTERSECTWITHGENEALOGY?

When,asagenealogist,youaskeitherofthefollowingtwoquesYons:1.  WhocontrolsaccesstotheinformaYon

thatyouareseekingaboutafamilyorindividual?

2.  WhocontrolstheinformaYonaboutafamilytreethatyoupulltogether?

Page 6: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

HOWISDNAREGULATEDINTERMSOFGENEALOGY?

ThereisspecificlawinCanadagoverningtheuseofDNA—butonly(1)  inthecriminalcontext

seeDNAIden)fica)onAct,SC(StatutesofCanada)1998,c37

and(2)  toprohibitrequiringgeneYctesYngasacondiYonforenteringintoor

conYnuingacontractwithanindividualorprovidinggoodsorservicestoanindividual(amendingboththefederalCanadaLabourCodeandCanadianHumanRightsAct,butaffecYngnoprovinciallegislaYon).

seeGene)cNon-Discrimina)onAct,SC2017,c3.

Neitheroftheseenactmentsisrelevanttogenealogy.

Page 7: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

SO,DOESANYLAWGOVERNDNAINAWAYTHATINTERSECTSWITHGENEALOGY?

Doesanylawgovernwhen,asagenealogist,youaskeitherofthefollowingtwoquesYons:1.  DoesthelawgivecontroloveraccesstoDNA

informaYonthatyouareseekingaboutafamilyorindividualtoanyoneotherthanyou,asagenealogist?

2.  DoesthelawgivecontroloverDNAinformaYonaboutindividualsyouwanttoputintoagenealogythatyoupulltogethertoanyoneotherthanyou,asagenealogist?

Page 8: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

INGENERAL,THEREISLAWTHATGOVERNSWHEN,ASAGENEALOGIST,YOUASKEITHEROFTHEFOLLOWINGTWOQUESTIONS:

1.  DoesthelawgivecontroloveraccesstoDNAinformaYonthatyouareseekingaboutafamilyorindividualtoanyoneotherthanyou,asagenealogist?

2.  Doesthelawgivecontroltoanyoneotherthanyou,asagenealogist,overDNAinformaYonyoupulltogetheraboutindividualsandthatyouwanttodisseminateaspartofyourgenealogicaloutput?

Page 9: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

STARTINGWITHACCESSINGANOTHER’SDNAASAGENEALOGIST…

Doesanylawgovernwhen,asagenealogist,youask:1.  Doesthelawgivecontroloveraccessto

DNAinformaYonthatyouareseekingaboutafamilyorindividualtoanyoneotherthanyou,asagenealogist?

Page 10: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

IFTHEREISNOSPECIFICLEGISLATIONREGULATINGDNAINTHECONTEXTOFGENEALOGY,ISTHEREANY

RELEVANTLAW?

•  Privacylaw•  AccesslegislaNon•  PersonaldataprotecNonlegislaNon•  Contractlaw

NoneoftheseareasoflawexplicitlyreferstoDNAbutanyorallmayinvolvedingoverninginformaYonaboutanindividual’sDNAinthecontextofgenealogy.

Page 11: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

ISTHE1982CHARTEROFRIGHTSANDFREEDOMSPARTOFOURCONSTITUTIONINVOLVEDWHENDEALINGWITHDNA?

1stcaveat:

TherightscontainedwithintheCharteronlyrelatetoprotecYonofCanadiansfromgovernmentacYon,notrelaYonshipsbetweenprivateparYes(ie.,notbetweenindividualsandindividualsorindividualsandbusinesses)…

2ndcaveat:•  WhiletheCharters.2(b)specificallyenshrines“freedomofexpression”–andthisrighthasbeenjudiciallyinterpretedtoincluderightstoaccessinformaYon–

•  AndthoughclearlycertainprivacyinterestsareinvolvedinsomeCharterprotecYons: s.7.Everyonehastherighttolife,

libertyandsecurityofthepersonandtherightnottobedeprivedthereofexceptinaccordancewiththeprinciplesoffundamentaljusYce.

s.8.Everyonehastherighttobesecureagainstunreasonablesearchorseizure;

“privacy,” perse,doesnotappearintheCharter…

Page 12: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

HOWEVER,WITHOUTDOUBT,GOVERNMENTSANDTHECOURTSARETAKINGPRIVACYINTERESTSSERIOUSLY:

AndinRvPlant(3SupremeCourtReports281),considerings.8oftheCharter,andprotecYonfromgovernmentintervenYon,theSupremeCourtsaid,in1993:

“Infosteringtheunderlyingvaluesofdignity,integrityandautonomy,itisfitngthats.8oftheChartershouldseektoprotectabiographicalcoreofpersonalinformaYonwhichindividualsinafreeanddemocraYcsocietywouldwishtomaintainandcontrolfromdisseminaYontothestate.ThiswouldincludeinformaYonwhichtendstorevealinYmatedetailsofthelifestyleandpersonalchoicesoftheindividual.”

Page 13: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

NONETHELESS,“PRIVACY”PROTECTION(PROTECTIONOFTHESTATEOFBEINGLEFTALONE)IS,INCANADA,

BESTDEVELOPEDINQUEBEC

QuebechasaprovincialstatuteenYtledthe

QuebecCharterofRightsandFreedoms– whichhasbeenrecognizedbytheSupremeCourtasconsYtuYonalwithinthatprovince(seeAubryvEdiIonsVice-Versa[1998]1SCR591).

Itstates:s.4Everypersonhasarighttothesafeguardofhisdignity,honourand

reputaYon

s.5Everypersonhasarighttorespectforhisprivatelife

s.9Everypersonhasarighttonon-disclosureofconfidenYal informaYon

Page 14: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

FORTHERESTOFCANADA

TheSupremeCourthasstatedsomeYmeago(2002)inLavignevCanada:

“...thePrivacyAct[whichis,technically,apersonaldataprotecYonstatute]hasbeencharacterizedbythisCourtas‘quasi-consYtuYonal’becauseoftheroleprivacyplaysinthepreservaYonofafreeanddemocraYcsociety”

Page 15: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

DNAANDPERSONALDATAPROTECTIONLEGISLATION

YouraccesstoinformaYonaboutothersheldbyorganizaYonsinCanadaisincreasinglylimitedasgenealogistsbecause…

•  Since1977wehavehadincreasingPERSONALDATAPROTECTIONlegislaYoninthiscountry–beginninginthepublicsector…

•  Especiallysince2004,virtuallyallprivatesectororganizaYonsinCanadahavealsobecomesubjecttopersonaldataprotecYonlegislaYon

•  Andthereisevenmorerecentjointpublic-privatelegislaYonintheHEALTHSECTORinalmosteveryprovince&territory…

Page 16: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

HOWDOESTHISAFFECTGENEALOGYWORK?

• GovernmentandprivatesourceswillrefusetogiveinformaYonaboutpeoplelivingorrecentlydeceasedtoanyoneworkingongenealogy…

•  IfyouareworkingonagenealogyformoneyinOntario,youyourselfwillhavetocomplywiththefederalprivatesectorpersonaldataprotecYonlegislaYon(PIPEDA)inyourownhandlingofinformaYonyoucollectfromanysourceaboutpersonswhoarealiveorrecentlydeceased…

Page 17: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

WHYDOESAGENEALOGISTWORKINGONFAMILYHISTORIESASAHOBBY,NOTHAVETOWORRYABOUTHERORHISHANDLINGOF

INFORMATIONABOUTLIVINGORRECENTLYDEADPEOPLE?

•  PIPEDAs.4(2)Thispartdoesnotapplyto(b)anyindividualinrespectofinformaIonthattheindividualcollects,usesordisclosesFORPERSONALorDOMESTICPURPOSESanddoesnotcollect,useordiscloseforanyotherpurpose

•  PIPEDAs.4(2)Thispartdoesnotapplyto(c)anyorganizaIoninrespectofpersonalinformaIonthattheorganizaIoncollects,usesordisclosesFORJOURNALISTIC,ARTISTICorLITERARYPURPOSESanddoesnotcollect,useordiscloseforanyotherpurpose.

Page 18: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

WHYDOESPERSONALDATAPROTECTIONAFFECTGENEALOGY?

•  UnderpersonaldataprotecYonlegislaYon,onlyinformaYonaboutyouisyourdata–informaYonaboutothermembersofyourfamilyistheirdata.

•  UnderpersonaldataprotecYonlegislaYon,thegeneralprincipleisthatiforganizaYonsholddataaboutotherpeople,includingthemembersofyourfamily,organizaYonsmustNOTreleaseittoyou.

•  If,ontheotherhand,organizaYonsholdinformaYonaboutyou,thoseorganizaYonsmustreleaseittoyou.

Page 19: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

PersonalDataProtecYonEvoluYoninCanada

Privacy as a human rights concept

Ensuring transportability of data between countries

Europe- Early 1980’s

OECD Guidelines 1984

European Data Directive 1995- in force 1998 -no European company can ship data to a non-complying country

CANADA

Public Sector - covered, to varying degrees, between 1978 and 2008 (paired with Access legislation: must release on request unless exception)

Private Sector -Quebec from1993; later, Alta and BC - federal PIPEDA (2001 & more in 2004) covers other 7 provinces & territories

Health Sector - Nfld PIPEDA OK - NB) “ - Ontario “ - NS “ - Alta Not PIPEDA OK – need to comply - Sask “ with PIPEDA & - Man “ provincial or - PEI “ territorial - Yukon “ - NWT “ (BC, Que & Nunavut no special health sector)

Page 20: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

BUTALLPERSONALDATAPROTECTION(PDP)STATUTESINCANADAHAVEACOMMONFRAMEWORK:

AllPDPstatutesgovernallrecordsheldbyanorganizaYonthatcontainpersonallyidenYfiableinformaYon–intermsof:• CollecNon• Use• DisseminaNon• Disposal

Thewhole“lifecycle”ofpersonallyidenYfiableinformaYon,suchasDNA,inthehandsofanorganizaYonsubjecttothislaw,isaffectedbypersonaldataprotecYonlegislaYon…

Page 21: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

WOULDDNAINFORMATIONBECLASSIFIEDASHEALTHINFORMATIONANDBEUNDERTHE

HEALTHSECTORPDPSTATUTES?•  No,itisnottheinformaYonthatisclassifiedinordertoestablishwhetherthehealthsectorpdpstatutesapply,itisthetypeoforganizaYontowhichthelegislaYonappliesthatwillestablishwhetherthehealthsectorpdplegislaYonappliesorwhetheritistheprivateorpublicsectorpdplegislaYonthatdoes…

•  HealthsectorpdplegislaYonappliestoorganizaYonsdefinedasbeingwithinthatsector:inOntario,thequesYoniswhethertheorganizaYonfallswithinthedefiniYonof“healthcarecustodian”underPHIPA…

•  Inanyevent,strictlyspeaking,DNAorothergeneYcinformaYonisNOThealthinformaYon–itisinformaYonderivedfromgeneYctesYng:itisinformaYonaboutanindividual.

Page 22: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

SINCEEACHISLEGISLATEDBYADIFFERENTELECTEDBODY,EACHSTATUTEISUNIQUE,DETAILSVARY--

Forexample,intheprivatesectorlegisla)onknownasPIPEDA:“personalinformaIon”meansanyinformaIonaboutan

idenIfiableindividual,butdoesnotincludethename,ItleorbusinessaddressortelephonenumberofanyemployeeofanorganizaIon•  However,thisparIcularlegislaIonwillnotaffectinformaIon

youaregatheringaboutindividualswhohavebeendeadmorethan20years…

•  OrinformaIongatheredfromrecordsmadeover100yearsagoButeachstatuteinCanadadiffersindetails…thoughDNAinforma)onwouldbeconsideredpersonalunderanyofthem…

Page 23: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

HOWLONGMUSTORGANIZATIONSKEEPPERSONALLYIDENTIFIABLEINFORMATIONCONFIDENTIAL?

§  FederalPrivacyAct§  OntarioFOIPPA&MFOIPPA§  Alberta,Saskatchewan§  BriYshColumbia,NovaScoYa,PEI

§  Manitoba§  NewBrunswick§  Privatesector(egPIPEDA)

•  Healthsector,eg.PHIANfld

•  20yearsaderdeath–andthentheinformaYonfallsoutoftheAct

•  30yearsaderdeath,outofAct•  25yearsaderdeath,accessible•  20yearsaderdeath,accessible•  10yearsaderdeath,accessible•  20yearsaderdeathorifdocumentisover100accessible

•  Maydisclose20yrsa_erindividual’sdeath,or,ifshorter,100yearsa_errecordmade

•  PHIA-120yearsa_errecordcreatedor50yearsa_erdeath

Page 24: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

PIPEDA,FORTHEPRIVATESECTOR,HASNOPROVISIONFORACCESSONBEHALFOFADEADINDIVIDUAL,EVENTHOUGH

PROTECTIONCANLASTLONGERTHANLIFE:

•  ThereisnoaccesslegislaYon,soaderpersonaldataprotecYonceasestoapply,thereisnoaccesstoaperson’sinformaYonbyanyonerequiredbylaw–butnoristheinformaYonnecessarilytobetreatedinanyparYcularwaybyanorganizaYongovernedbyPIPEDA–soitcouldbereleased,attheorganizaYon’sopYon

•  Clause4.9ofSchedule1toPIPEDAprovidesfortheprinciplethatanindividualmustbeabletoaccessherorhisownpersonaldataheldbybusinessescoveredbyPIPEDA–butthereisnoprovisionforaccesstotheinformaYonaboutthatindividualaderdeathineithertheScheduleortheActitself,sees.8.

Page 25: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

ACCESSINGINFORMATION:

HOSPITALRECORDS

HealthisaprovincialmaPerconsYtuYonally;RelevantlegislaYonincludes-

•  PublicHospitalsActs•  ProvincialHealthInformaYonActs(wherepassed)•  PIPEDA(exceptwhereprovinciallegislaYonhasbeendeemedequivalent)

•  ProvincialorterritorialpublicsectorpersonaldataprotecYonandaccesslegislaYonwherenospecifichealthinformaYonlegislaYonhasbeenpassed

And,everwherethereisnoapplicablestatutes,therecanbeCommonLawprecedents(exceptinQuebec).

Page 26: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

AFTERTHETIMEOFPROTECTIONHASEXPIREDPUBLICSECTORORGANIZATIONSDIFFERFROMPRIVATE:

• GovernmentsourceswillgiveinformaYonaboutidenYfiableindividualstootherindividualswhorequestit…becausepublicsectororganizaYonsaresubjecttothe“flip-side”ofpersonaldataprotecYonlegislaYon---whichisAccesslegislaYon---

AccesslegislaYonrequiresthatanyinformaYonheldbygovernmentNOTexplicitlyrequiredtobewithheldbegiventoanyonewhorequestsit…

• NoprivatesectororganizaYonissubjecttoAccesslegislaYon…so,whileitcangiveinformaYonaboutindividualstootherindividuals,itdoesnothavetoandseldomwillbother…

Page 27: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

ORGANIZATIONSGOVERNEDBYPDPANDDNA

•  AllorganizaYonsgovernedbyPDPlegislaYon,includingcommercialgenealogists(governedunderPIPEDA),mustobtainpersonalinformaYonfromthepersonstowhomtheinformaYonrelates,withtheirconsent–thiswouldincludecollecYngDNAonlyfromthepersonwhoseDNAitis.

•  “Hobby”genealogistsdonothavetoadheretothislegislaYonandarefreetocollect,use,anddisseminateDNAinformaYonaboutthemselvesandothersiftheyacquireit.

Page 28: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

WHATABOUTENTITIESLIKEANCESTRYDNA,FAMILYTREEDNAOR23ANDME?

•  IfthesecompaniesoperatewithinCanada,theywillbesubjecttoCanadianlaws–butnotmanyofthemdo…

•  ManyoperateinjurisdicYonswithoutany,oranystrong,personaldataprotecYonlegislaYon(ie,theUnitedStates)

•  Whatisthevalueofanon-Canadiancompany’s“privacypolicies”?“Whatevertheprivacypoliciesofanygivencompanymaysay,youhavenowayofknowingwhetherthey’rebeingadheredtoorwhatmayhappentoyoursampleascompaniesareboughtandsoldinthefuture.”

(PatrickCain,“PrivacyriskslurkinDNAtests,expertswarn”GlobalNews15August2016)

Page 29: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

CANYOUCONTRACTFORYOURDNAINFORMATIONTOBEUSEDINWAYSNOTCONTEMPLATEDBYCANADA’SPDPLAWS?

•  ThelegislaYoninQuebec,AlbertaandBriYshColumbiaisexplicitthatnoorganizaYonorindividualcancontractoutoftheirlegislaYveprovisionsforpersonaldataprotecYon;

•  PIPEDA,inthesituaYonsandjurisdicYonswhereitappliestoprivatesectororganizaYons,doesexplicitlycontemplateindividualsbeingabletocontractoutoftheirrightsunderthestatute(Principle4.3.8)

•  Thereisa1982SupremeCourtdecision(ONHumanRightsComm’nvEtobicoke)thatholdsthereisaclassofenactmentswhere,eventhoughcontracYngoutisnotexpresslyforbidden,publicpolicydictatesthatcontracYngoutisnotallowed–thismaywellapplytoallthepersonaldataprotecYonstatutesthataresilentoncontracYngout…Thisyear’s2017SupremeCourtdecisioninDouezvFacebook,whichdidnotallowacontractualprovisionthatprivacyclassacYoninvolvingCanadianshadtobebroughtinCaliforniatostand,wouldindicatethattheSupremeCourtviewsprivacyquesYonstoliewithinthispublicpolicyareawherecontractscanbeoverriddenbyCanadiancourts.

Page 30: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

THANKYOU!(SEE ADDED S L I D E S D EA L ING W I TH MATTER S RA I S ED DUR ING

QUES T IONS )

Page 31: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

ABOUTTHECANADIANCENSUS

•  ThecensusistradiYonallytakenevery5years…

•  ItisconductedundertheauthorityoftheSta)s)csAct,RevisedStatutesofCanada1985,cS-19.

•  TheGovernmentofCanadareleasesaggregatedatafromeachcensuspubliclyandinarelaYvelyYmelyway–butthisaggregatedatadoesnotallowanyindividualpersonwhorespondedtothecensustobeidenYfied.

•  UndersecYon18.1asitnowappears,individualinformaYonprovidedbythosewhorespondedtothosecensusconductedbetween1910and2005willbemadepubliclyavailable92yearsadereachcensuswasconducted(s18.1(1))–ontheotherhand,forthe2006censusandallthoseaPerward,theinformaYonabouteachindividualwillbemadeavailableader92yearsonlyifthatindividualconsentedtothatrelease92yearslaterattheYmeoffillingoutthecensus(s18.1(2)).

•  AllinformaYonaboutindividualsthatisreleasedundereithers18.1(1)ors18.1(2),willbeplacedwithLibraryandArchivesCanada(sees18.1(3)).

Page 32: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

BUTTHEREISINFORMATIONPEOPLEHAVEALWAYSBEENABLETOGET–ANDARESTILLABLETOGET–FROMGOVERNMENT,

ABOUTOTHERS–WHY?

PublicsectorpersonaldataprotecYonlegislaYonandotherlawsspecificallyexemptfromcoveragevariousrecordsthathavetradiYonallybeenpubliclyavailable.

Forexample,youraccesstobirthanddeathregistraYons,thathavealwaysbeenpubliclyavailabletoanyone,isunaffectedbythepassageofallthisnewlawsince1977…butwhetheryoucanaccessinformaYonabouttherecordswhichliebehindtheregistraYonsisadifferentmaPerandhasbeenthesubjectofaseriesofdecisionsinOntario,forexample…asweshallseeinamoment…

Page 33: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

INDISPUTESABOUTACCESSINVOLVINGPERSONALINFORMATION,SOMETIMESADJUDICATORSLOOKATTHE

RECORDSASAWHOLE…

•  NovaScoYaFOIPOPReportofReviewOfficerFI-09-52January2012•  Africvilledescendent(areaofHalifax)askedHalifaxRegionalMunicipalityforinformaYonaboutlandsanddeedsinthenamesofrelaYvesheldbetween1940and1969andforinformaYonabouttheAfricvilleexpropriaYonwhichtookplace

•  Thegovernmenttriedblockaccessclaiming:•  solicitor-clientprivilege-whichwasrejected;or•  PersonaldataprotecYonfortherelaYves–whichwasalsorejectedbecausetherelaYvesweredeceasedmorethan20yearssonopersonaldataprotecYonbar

•  DescendentwasabletoaccesstheinformaYonrequested.

Page 34: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

INDIVIDUALDECISIONSONEACHRECORDINPO-3060,BASEDONTHEINFORMATIONINIT–NOTDECISIONSONCLASSESOF

DOCUMENTS…

Ministrytodisclose•  OntheStatementofMarriageunderexaminaYon•  Witnesses’signaturesandaddresses

•  Onatleastoneofthe4DeathCerYficatesunderexaminaYon-•  Datesofbirthandplaceofbirth•  Placeofdeath•  Spouses’lastnames•  Usualresidencesofthedeceased

MinistryNOTtodisclose

•  Onatleastoneofthe4DeathCerYficatesunderexaminaYon-•  Names,relaYonshiptothedeceased,signatureandaddressoftheinformants

Page 35: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

WHATAREPUBLICISNOTALWAYSCLEAR–FORINSTANCE,CEMETERIESARENOTNECESSARILYOPENTOTHEPUBLIC:

PIPEDAmiYgatesagainstpublicaccesstocemeteriesownedbyprivateoperatorsandchurches(Toronto’sMountPleasant,London’sSt.Peter’s)becauseofinformaYonaboutlivingorrecentlydeadindividualsonthestonesandmarkers…

PublicsectorpersonaldataprotecYonlegislaYonwouldsimilarlytendtorestrictaccesstomunicipalcemeteries…

•  CemeterieslegislaYoninsomeprovincesstatesthatcemeteriesaretobepubliclyaccessible(Saskatchewanand,incertainhours,BC)–butnotallprovinceshavethislaw

•  Ontario’sCemeteriesActisnolongerinforce:andthemuchawaitedFuneral,BurialandCremaYonServicesAct,2002,(inforcesinceJuly1,2012)doesnotexplicitlyprovideforarightofpublicaccesstocemeteries…

Page 36: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

WHATWOULDHAPPENINACHALLENGEUNDERPIPEDA?

s.5(3)(c)ofOntario’snewlyinforceFuneral,BurialandCremaIonServicesActcreatesadutyfortheoperatorofacemeterytoensurethat “everypersonhasreasonableaccesstoalotor

scaPeringgroundatanyYmeexceptasprohibitedbythecemeteryby-laws.”

ARegulaYontothenewAct(OntarioRegulaYon30/11),ins.110,requiresacemeteryoperatortomaintainaregisteravailableforinspecYonbythepublicwiththesameinformaYoninitaswasrequiredundertheoldOntarioCemeteriesAct.

ThenewActhasaconfidenYalityprovision(s.106)requiringpersonswhoobtaininformaYonthroughtheirpowersorduYesundertheActorregulaYonstopreservesecrecy.

Page 37: GENEALOGY AND DNA - Ontario Genealogical Society · SOME RELEVANT DEFINITIONS • DNA = “deoxyribonucleic acid molecule that encodes geneNc informaon of organisms and is oen referred

YOUMAYBEINTERESTEDINTHEFOLLOWINGLAWMASTERSTHESESIHAVESUPERVISED:

AllrecentWesternthesesanddissertaYonsareavailableelectronicallythroughScholarship@Western,inthedatabaselocatedat:hPp://ir.lib.uwo.ca/etd/

•  AlisonWong(2017)–“ImplemenNngCanada’sDataExclusivityObligaNonsandProtecNngPersonalInformaNoninClinicalTrials”

•  PatriciaGoodman(2012)--“ElectronicHealthRecordRegulaNoninCanada:WhatthePaNentExperienceRevealsaboutthePursuitofLegislaNveHarmonizaNon”