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EthicalUseofHomeDNATestingHomeDNAtestingisaboomingbusiness.MillionsofAmericanshavesenttheirDNAtocommercialtestingcompaniessuchas23andMeorAncestrytolearnmoreabouttheirheritageorpotentialfordisease.AccordingtoGrandViewResearch,"theglobalDNAtestingmarketissettoreachover$10billionby2022."(Brown2018).SuccessfulmarketingcampaignshaveledconsumerstobelievethathomeDNAtestingisfun,informative,andpersonaltothem.However,whatconsumersmaynotrealizeisthatoncetheirgeneticinformationisshared,theyhavelimitedcontrolastowhohasaccesstoit.RegardlessofthereasonconsumersdecidetopurchaseahomeDNAtestkit,theinformationtheyprovidetothetestingcompanyisfargreaterthantheinformationtheyreceive.Thebenefitsthatthesetestingcompaniescangainfromgathering,using,andsellingcustomers’privateinformationplacestheminasignificantconflict-of-interestsituation.SomeofthisinformationincludestheIPaddress,name,address,email,andfamilyhistory,collectedfromtheapplication,aswellasinformationprovidedonfollowupsurveys.Furthermore,accordingtoitswebsite,ifcustomersopttosharetheirdataforresearch,23andMecouldkeeptheirphysicalspitsampleandthegeneticdataitcontainsforuptoadecade.Additionalinformationthatconsumersuploadtothecompanies’genealogywebsite,suchaspictures,obituaries,familyrelationships,andeventhird-partyinformationisprobablyaddedtothepoolofdatalinkedtocustomers’DNA.Recently,somehavefeltthatprivacyandconsumerrightshavebeenviolatedwhentheyusedhomeDNAkits.InJune2019,LoriCollettsuedAncestryforallegedlymisleadingcustomersaboutwhatitwasdoingwiththeirDNA.Thisclassactionlawsuitclaimsthatpersonalinformationwasreleasedtooutsidepartieswithoutcustomerconsent.Furthercontentionsincludethatthewaiverofconsumerrightsthroughconsentformsisoftenvague,generalinscope,andever-changing.Thefineprintmaynotaccuratelyspelloutwhatthecompany,itsthird-partyassociates,andcollaboratorscanorwilldowithcustomerinformation.(Merken,2019)Furtherconcernsariseastestingcompaniesoftenalignthemselveswithpharmaceuticalcompanies,publicandprivateresearchorganizations,andGoogle.Forexample,"GlaxoSmithKlinepurchaseda$300millionstakeinthecompany,allowingthepharmaceuticalgianttouse23andMe'stroveofgeneticdatatodevelopnewdrugs—andraisingnewprivacyconcernsforconsumers."(Ducharme,2018)Similarly,AncestryissharingitsdatawithGooglethroughitsresearchsubsidiaryCalico.Ancestryadmitsthat"oncetheysharepeople'sgeneticinformationwithpartnercompanies,theycan'tberesponsibleforsecurityprotocolsofthosepartners."(Leavenworth,2018).Additionally,both23andMeandAncestryuseGoogleAnalyticstoprovidethirdpartieswithconsumerinformationfortargetedmarketing.Initsprivacypolicy23andMestatesthat"whenyouuseourServices,includingourwebsiteormobileapp(s),ourthird-partyserviceprovidersmaycollect

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Web-BehaviorInformationaboutyourvisit,suchasthelinksyouclickedon,thedurationofyourvisit,andtheURLsyouvisited."Thisuseofsharedinformationallowstestingservicesandthirdpartiestobuildacomprehensivepersonalprofileonyou,whichmayincludeyourgeneticinformation.

Althoughprivacymaybeaconcernofconsumers,lawenforcementwiththecooperationofDNAtestingcompanies,eitherthroughpartnershiporwarrants,havebroughtjusticetothevictimsofnumerousunsolvedcases.OverthepastfewyearstheuseofconsumerDNAdatabaseshaveclosedmanyhighprofilecoldcasessuchastheGoldenStateKillerandoverturnedthewrongfulconvictionofAlfredSwinton.Insomecases,suchastheGoldenStateKiller,theDNAusedtoidentifysuspectsarecrossreferencedthroughtheDNAofrelativesasfarremovedasthirdcousins.However,thishasbroughtadditionalconcerns,asaDNAexpertfortheAmericanCivilLibertiesUnion,VeraEidelmanstates,"There’salwaysadangerthatthingswillbeusedbeyondtheirinitialtargets,beyondtheirinitialpurpose."(St.John2019)ThesuccessofconsumerDNAdatabaseshasledsomelawenforcementtomeetwithBennettGreenspan,theCEOofFamilyTreeDNA,seekinghishelptoconvinceconsumerstosharetheirgeneticdatawithpolice.Thispartnershiphasresultedinthecreationofthenon-profitInstituteforDNAJusticethathasthefollowingstatedmission:

TheInstituteforDNAJusticewasformedtoeducatethepublicaboutthevalueofinvestigativegeneticgenealogy(IGG)asarevolutionarynewtooltoidentify,arrest,andconvictviolentcriminals,deterviolentcrime,exoneratetheinnocent,encouragethe26millionAmericanswhohavetakenaDNAtesttobecomegeneticwitnessesbyparticipatinginpubliclyavailablefamily-matchingdatabasesworkingwithlawenforcementusingIGG,andtopromotetheadoptionofindustryleadingbestpracticesguidelinessurroundingitsusebylawenforcementagenciesaroundthecountry.

Regardlessofpublicorprivatetesting,lawsintheUnitedStateshavenotyetdeterminedastandardforthehomeDNAtestingindustry.

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DiscussionQuestions:

1. WhathappenstoyourDNAprofileandgeneticmaterialifyourtestingcompanygoesoutof

business?Whatshouldhappentoit?

2. Whoshouldhaveaccesstoyourgeneticinformation?InthecaseoflawenforcementusingconsumerDNAdatabases,doesthecommongoodoutwaytheindividual'srights?Isthereamiddleground?

3. WhatrightdoindividualshaveovertheirDNA?Ifyouhaveanidenticaltwin,withtheexact

sameDNA,shoulddualconsentberequired?

4. Whatrecoursedoyouhaveifthecompany’sdatabaseishackedandyourinformationendsupontheinternetorincriminals’hands?

5. DoesthegoodthatflowsfromDNAevidencebeingusedtobringsomecriminalstojusticeand

toexoneratewrongly-convictedpeoplejustifytheinvasionsofprivacyandotherwrongsdescribedinthiscasestudy?

Resources:AmyBrown,“DNATestingisPopular,ButManyAreUnawareofPrivacyConcerns,”TriplePundit,Dec.18,2018.https://www.triplepundit.com/story/2018/dna-testing-popular-many-are-unaware-privacy-concerns/55936JamieDucharme,“AMajorDrugCompanyNowHasAccessto23andMe’sGeneticData.ShouldYouBeConcerned?Time,July26,2018.DavidLazarus,“DNA-testingFirmsareLobbyingtoLimitYourRighttoGeneticPrivacy,”LosAngelesTimes,July2,2019.StuartLeavenworth,“TheSecretiveGoogleSubsidiarywithAccesstoAncestry’sDNADatabase,”FinancialReview,June8,2018.https://www.latimes.com/business/lazarus/la-fi-lazarus-dna-genetic-privacy-20190702-story.htmlSaraMerken,Áncestry.comSuedfor‘Misleading’CustomersAboutDNAData,”BloombergLaw,April25,2019.https://news.bloomberglaw.com/privacy-and-data-security/ancestry-com-sued-for-misleading-dna-data-handling-claims.PaigeSt.John,“DNAGenealogicalDatabasesAreaGoldMineforpolice,ButwithFewRulesandLittleTransparency,”LosAngelesTimes,Nov.24,2019.

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N’deaYancey-Bragg,“DNAisCrackingMysteriesandColdCases.ButisGenomeSleuthingthe‘UnregulatedWildWest?,’”USAToday,May14,2019.“PrivacyHighlights,”https://www.23andme.com/about/privacy/https://www.institutefordnajustice.org/Author:ChrisApgarandRobertPrentice TheUniversityofTexasatAustin