Medicine, Faculty of
Other UBC
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Population and Public Health (SPPH), School of
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BMC Medical Ethics. 2019 Jul 04;20(1):43
BC Centre for Disease Control
The Author(s).
Jackson, Carly
Gardy, Jennifer L
Shadiloo, Hedieh C
Silva, Diego S
Background: Emerging genomic technologies promise more efficient infectious disease control. Whole genome sequencing (WGS) is increasingly being used in tuberculosis (TB) diagnosis, surveillance, and epidemiology. However, while the use of WGS by public health agencies may raise ethical, legal, and socio-political concerns, these challenges are poorly understood. Method: Between November 2017 and April 2018, we conducted semi-structured interviews with 22 key stakeholders across the fields of governance and policy, public health, and laboratory sciences representing the major jurisdictions currently using WGS in national TB programs. Thematic analysis of the interviews was conducted using NVivo 11. Results: Respondents identified several ethical and practical challenges associated with WGS in TB care and surveillance, all related to issues of trust, including: 1) the power of public health; 2) data sharing and profits derived from surveillance efforts; and 3) concerns regarding who has access to, and can benefit from, the technology. Additional challenges included: the potential utility that WGS adds to a public health program, the risks associated with linking necessary epidemiological metadata to the genomic data, and challenges associated with jurisdictional capacity to implement the technology. Conclusions: Successful implementation of WGS is dependent on fostering relationships of trust between those working with genomics technology and those directly impacted by it, including clinicians. Building trust (a) between the public and the public health agencies and (b) within public health agencies themselves is critical due to the inherent complexity of WGS and its implementation for communicable disease control purposes.
RESEARCH ARTICLE Open AccessTrust and the ethical challenges in the useof whole genome sequencing fortuberculosis surveillance: a qualitative studyof stakeholder perspectivesCarly Jackson1, Jennifer L. Gardy2,3, Hedieh C. Shadiloo1 and Diego S. Silva1,4*AbstractBackground: Emerging genomic technologies promise more efficient infectious disease control. Whole genomesequencing (WGS) is increasingly being used in tuberculosis (TB) diagnosis, surveillance, and epidemiology. However,while the use of WGS by public health agencies may raise ethical, legal, and socio-political concerns, these challengesare poorly understood.Method: Between November 2017 and April 2018, we conducted semi-structured interviews with 22 key stakeholdersacross the fields of governance and policy, public health, and laboratory sciences representing the major jurisdictionscurrently using WGS in national TB programs. Thematic analysis of the interviews was conducted using NVivo 11.Results: Respondents identified several ethical and practical challenges associated with WGS in TB care and surveillance,all related to issues of trust, including: 1) the power of public health; 2) data sharing and profits derived from surveillanceefforts; and 3) concerns regarding who has access to, and can benefit from, the technology. Additionalchallenges included: the potential utility that WGS adds to a public health program, the risks associated withlinking necessary epidemiological metadata to the genomic data, and challenges associated with jurisdictionalcapacity to implement the technology.Conclusions: Successful implementation of WGS is dependent on fostering relationships of trust between thoseworking with genomics technology and those directly impacted by it, including clinicians. Building trust (a) betweenthe public and the public health agencies and (b) within public health agencies themselves is critical due to theinherent complexity of WGS and its implementation for communicable disease control purposes.Keywords: Trust, Surveillance, Tuberculosis, Whole genome sequencing, Qualitative, Empirical ethicsBackgroundWhole genome sequencing (WGS) has dramatically chan-ged public health microbiology, allowing for rapid diagnosisof infections, antibiotic resistance prediction, and accurateoutbreak identification and reconstruction [1], while posi-tioning us for a future in which individualized medicine forspecific infections is possible [2]. As WGS becomes anincreasingly important tool in public health, its successfulimplementation depends on complex human and systemsfactors beyond simply laboratory and clinical practice. Crit-ical examination of these challenges is necessary in order tofully realize these benefits. In part, understanding theethical challenges associated with the use of WGS is vitalbecause public health is not merely a scientific endeavour,but one built on the normative ideal of social justice [3].In order to successfully implement WGS into pre-existing health systems, trust must be fostered betweenrelevant stakeholders. Trust, as used in the ethics literature,may refer to several different concepts: public trust (e.g.,trust of public bodies like government), interpersonal trust(i.e., trust between persons or groups), and institutional© The Author(s). 2019 Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.* Correspondence: dsilva@sfu.ca1Faculty of Health Sciences, Simon Fraser University, BLU 11300 – 8888University Drive, Burnaby, BC V5A 1S6, Canada4Sydney Health Ethics, Faculty of Medicine and Health, University of Sydney,Sydney, AustraliaFull list of author information is available at the end of the articleJackson et al. BMC Medical Ethics (2019) 20:43 https://doi.org/10.1186/s12910-019-0380-ztrust (i.e., trust in the pre-existing structures of sociopoliti-cal and economic organizations) [4]. Trust may be a per-ception or attitude one holds regarding another actor’strustworthiness; ‘trustworthiness’ is the honesty and integ-rity of the actor’s actual behaviour [5]. Further, trust sug-gests that one party is vulnerable and dependent uponothers to act in the right manner, including taking thetrustee’s interest into account [5]. This, in turn, suggeststhat there may exist a power imbalance between the personor group to be trusted (i.e., those in positions of power) andthe person or group who is trusting (i.e., those in positionsof disempowerment). In both research and policy, we oughtto be aware of the reasons that power imbalances exist inparticular contexts, including histories of colonialism andother sociopolitical factors that lead to the marginalizationof certain groups of people.The broader public health and bioethics literature re-lated to issues of trust posits that the values that underpinthe concept of trust are necessary for the functioning ofhealth systems and, in turn, health promotion in individ-uals [6]. Issues of trust related to public health—forexample, the power that the enterprise of public healthholds in justifying public health actions [7], the fear of ex-ploitation with regard to intellectual property for financialgain in the context of data-sharing [7, 8], and ensuringequitable access to new technologies [9]—have beenexplored in the literature and identified as a key factor toadvancing and implementing new genetic diagnostics forpersonalized medical care and disease control [7, 10, 11].In this paper, we used the idea of trust to denote thedisposition to trust and being trustworthy in a descriptiverather than a normative or proscriptive sense; it is used asa concept to help organize what we will argue are themain themes from our interviews.Despite the depth of literature on WGS and trust in thehuman genomics context at the clinical or bedside level,there is very little written regarding the use of WGS inpublic health microbiology, including the ethical chal-lenges associated with WGS in public health, the contextsurrounding these challenges, what can be done to miti-gate or resolve these challenges, and what role trust mayplay in the implementation of public health genomics. Forexample, genomics is being increasingly used in tubercu-losis (TB) diagnosis, surveillance, and epidemiology, withmany regional and national public health agencies in low-incidence settings - which are often times high-incomecountries (HIC) - routinely sequencing all culture-positiveTB isolates. Traditionally, TB has been characterized as a“disease of poverty”, meaning persons of lower socioeco-nomic status are more susceptible to contracting theinfection and developing the disease [6]. Therefore, usingWGS for TB diagnosis, surveillance, and outbreak investi-gation raises multiple ethical challenges, including ques-tions around privacy and confidentiality [6, 7], who hasaccess to information generated via WGS and how this in-formation can be used [8], and questions of stewardshipregarding the creation and safekeeping of data [8, 12], allof which are heightened due to the socioeconomicmarginalization of those whom it most affects.To our knowledge, this project is the first of its kind toexplore the ethical and related legal and socio-political con-cerns associated with the use of WGS by TB laboratoriesand programs by interviewing key stakeholders directly im-pacted by this technology. We explore these concernsthrough a qualitative analysis of the perspectives of govern-ment officials, policymakers, and those working directly inTB care and prevention. We note at the outset that thisanalysis is meant to be a descriptive analysis of these con-cerns as elucidated by the perspectives of these key stake-holder groups, rather than a proscriptive commentary. Theresults we present here are exploratory in nature and con-tribute to the existing literature detailing ethical concernsassociated with the broader use of genomics for infectiousdisease control and the influence trust holds in the success-ful implementation of genomic technologies and next-generation sequencing in public health.MethodsSampling and recruitmentWe obtained ethics approval from Simon Fraser University(No. 2017 s0485). We recruited participants through pur-posive sampling – compiling a list of prospective partici-pants through our existing network of domain experts andtargeted searches for individuals working with WGS for TBcare and surveillance – and snowball sampling [13],whereby participants identified other potential recruits. In-terviews were conducted until saturation was achieved, i.e.,when no new ideas arose from the data [13]. In total, weconducted 22 interviews. Participants’ professional fields in-cluded governance and policy (including persons with agovernance role within public health organizations chargedwith TB control), public health, and laboratory scientistsworking with genomics. Many participants had overlappingprofessional duties. Participants represented those jurisdic-tions currently using WGS for TB, including Canada, theUnited States, and the United Kingdom, as well as inter-national organizations representing global and low- andmiddle-income (LMIC) perspectives. All participants pro-vided written informed consent.Data collectionInterviews were administered by phone and digitally re-corded between November 2017 and April 2018. Eachinterview lasted approximately 60 min and all were con-ducted by the same team member (DSS) using a semi-structured interview guide with open-ended questions;we opted for this approach in this exploratory study as itallows participants to provide more detail as they see fitJackson et al. BMC Medical Ethics (2019) 20:43 Page 2 of 14and as guided by the interviewer [14]. The research teamdeveloped the guide after reviewing the existing litera-ture regarding ethical challenges in the implementationof new genetic technologies primarily with regards to in-fectious disease surveillance and public health. Theinterview guide was also informed by the global healthgovernance literature and previous experience of the re-search team in conducting interviews on similar themes.(See Additional file 1 for a summary of questions in-cluded in the interview guide). The guide was iterativelyrefined over the course of the interviews as the teamlearned more about the topic from the participants,allowing the research team to better understand emer-ging concepts repeatedly raised by interviewees. Thisinterview guide was relied on more heavily in the begin-ning of the interview to prompt discussions with partici-pants. As the interview progressed, conversation flowedmore naturally between the participant and the inter-viewer (DSS) as logical follow-up questions were pur-sued following the information offered by theparticipant. In this way, as data collection progressed,the interview guide was used more like a checklist to en-sure all topics had been addressed in the interviews.AnalysisWe used thematic analysis to analyze the data [14]. Thedigital recordings of each interview were sent to a profes-sional transcription company and transcribed verbatim. Onemember of the research team (CJ) verified the accuracy ofeach transcript. Transcripts were then line-by-line codedusing Nvivo 11 by the same team member using a codebookdeveloped by two members of the research team (CJ andDSS), who first independently coded three interviews repre-senting a range of professional perspectives. These initialcodes were compared for overlap between CJ and DSS, andthe initial codebook was built; it was further refined duringthe analysis, with codes added or collapsed as needed.Two team members not participating in the line-by-line coding (DSS and JG) prepared analytic memos ofeach transcript describing the high-level themes in eachinterview. Together with the line-by-line coding, re-searcher reflexivity was facilitated through systematicallyconstructing the themes together across multiple read-ings of the transcripts and in two full-day face-to-facemeetings. This approach ensured that our analysis wascomprehensive and allowed the team to develop a dee-per understanding of key themes.Once we had determined the overarching themes fromthe data, the team jointly created Fig. 1 and Table 2, whichwere shared with the participants in a process sometimesreferred to as a ‘member’s check’. Nine participants pro-vided feedback on the team’s assessment of the mainthemes, which led to further refinement of the themesand the language used in the Results section below.ResultsOur 22 participants worked primarily in governance/policyand public health, and predominantly in North America,Fig. 1 Map of relationships between key concerns in relation to trust.→ concept flows from previous concept.↔ concepts have endogenousrelationship, influencing each other. concept has indirect relationship with connecting conceptJackson et al. BMC Medical Ethics (2019) 20:43 Page 3 of 14though we did also have participants working in laborator-ies, as well as international organizations (Table 1).Participants identified several key ethical challengesassociated with the use of WGS for TB care and surveil-lance. We have developed a model of the relationshipsbetween the key findings (Fig. 1), as well as definitions andillustrative quotes that expand upon the concepts in themodel (Table 2). The remainder of this section will explainand contextualize this figure and table. In addition to thetable, direct verbatim quotes are provided throughout theresults section to further support the ethical challengeshighlighted by participants. Throughout this section, werefer to participants by their primary job descriptors (i.e.,governance officials, public health workers, or laboratorystaff ) to protect their anonymity. Any quotes attributed toa participant are identified using their primary job descrip-tor and participant number. The results did not differbetween participants on the basis of geography.The majority of participants identified trust as the pri-mary challenge in implementing genomics for TB care andsurveillance. More specifically, positive interactions thatbuild or maintain trust between various actors – includingbut not limited to: persons with TB, healthcare workers,public health administrators, laboratory professionals, diag-nostic test developers, and those charged with data stew-ardship and protection – were discussed as being integralto the relationships required to fully realize the benefits ofWGS. For example, one participant highlighted how im-portant it was for the public health community to maintaintrust with the public once that trust has been developed:“…people have just no problems sending in swabs ….Soyou can see how comfortable people are getting with it,but I think that’s because there's a certain level of trust,so I think that we in the scientific community and in themedical community have to make sure we don’t betraythat trust.” (Interview #9, Lab).The trust-based relationships between these variousactors shape the ethical challenges as identified by theparticipants. Some participants also noted, however, thatthe implementation of WGS must be conducted in a man-ner that is aware of any historical injustices that mightshape the manner in which WGS may be accepted orrejected by local populations. For example, one participantnoted that that in the Canadian context, the history ofcolonialization and higher rates of TB infection in Indi-genous communities ought to shape how researchers andclinicians approach said communities:“The rates are still higher [in Indigenous persons inCanada] and there's just differences in what all healthpractitioners need to be aware of in terms of the culturaland historic contexts. A lot of the proliferation of TBthat's still residual in older people… [is due to] thelegacy of residential schools, right? …. So that's thecontext. It doesn't change, necessarily, what medicationspeople should be on or who should get followed up interms of post-contact on a First Nations versus non-FirstNations basis. Just the health practitioners are better offif they are aware of that, if they are aware that someolder or elderly First Nations people might have been inone of the ‘Indian hospitals’ and might … fear medicalpractitioners, for very good reasons.” (Interview #17,Governance)Participants identified three key ethical challenges thatdirectly stem from issues of trust. First, many partici-pants discussed the power the enterprise of public healthholds in relation to the general public and persons withTB as an ethical challenge that has the potential to befurther heightened as WGS is introduced into nationalTB programs (NTPs). Participants worried that data de-rived from WGS could justify public health actions thatcould infringe on privacy and confidentiality or othercivil liberties with insufficient protections. Similarly, asecond trust-related challenge several participants iden-tified is a general concern regarding data protection anddata-sharing responsibilities. Participants discussed, atlength, that many organizations, public health institu-tions, or countries are often reluctant to share evenpopulation-level genomic data with other countries orinternational organizations. One participant suggestedthat low- and middle-income countries (LMIC) mightnot fully understand the genomic TB data they have orwhy they should share it in the first place:“…countries simply do not understand the data thatthey have. They don't understand the value of it, theydon't understand the value of sharing it and so they'reTable 1 Participant DemographicsRegional Representation Canada United States United Kingdom International Organizations TotalsGovernance and Policya 5 2 0 1 8Public Health 4 3 1 0 8Laboratory 1 1 1 3 6Totals: 10 6 2 4 –a Includes government officials and individuals in governance roles within public health institutionsJackson et al. BMC Medical Ethics (2019) 20:43 Page 4 of 14Table2SummarytableoftermsusedinFig.1withillustrativeparticipantquotesItemDefinition/OperationalizedDescriptionIllustrativeQuote1TrustTrustisanperceptionorattitudeoneholdsregardinganotheractor’strustworthinessintheirbehaviour;here‘trustworthiness’beingthehonestyandintegrityoftheactor’sactualbehaviour.Thistrustmaybebuiltonrelationshipsinwhichbothpartieshaveproventheirtrustworthinessor,inothercases,maybeblindtrustinthosewiththepoweroverthedata.Regardless,trustsuggestthatonepartyisvulnerableanddependentuponotherstoactintherightmanneraccordingtotheparticularsituation,includingtakingthetrustee’sinterestintoaccount(McLeod,2015).InthecontextofWGSforTBsurveillance,issuesaroundtrust(orlackthereof)maybepresentinmanyrelationshipsincluding,butnotlimitedto:1)betweenhealthcareworkersandlaboratorystaff,2)thepublicandthemedicalcommunityand3)forconcernsofdataprotectionforbothprivacyandconfidentialitypurposes,aswellasacademic.Well,Ithink,ultimately,thatiswhathappens,right,isthatsortoftrustislike–ifthefolkswhoaretheexpertinthetechnologyaresayingthatthesearepeoplewhoarelikelyrelatedorthatthisislike–thesearedefinitelyacluster,thenIthinkyoudokindofhavetotakethatonatfacevalue.(Interview#14,Governance).Ittakesagestobuild[trust],andifyoumakeamisstep,thewholethingcouldbegone.Soyouhavetojustbeverycareful,veryopen,nevertomakeitseemlikeyou’reonthemake.Justbea–andactually,it’snotthathard.Youjustbea,youknow,decent,honestperson,andkeeppeopleintheloop.(Interview#16,Lab)[binary].Inconjunctionwithdatasharingconcernspreviouslydetailedintheliterature,thisencompassesthefearthatifdataissharedwithinternationalsurveillancedatabases,thedatacanthenbeusedtodevelopednewdiagnosticsand/ordrugsthatwillthenbesoldbacktocountriesathigh,potentiallyunaffordable,prices.Fearofthepotentialthatprofitsmaybederivedfromdataacquiredthroughsurveillanceactivities.Inconjunctionwithdatasharingconcernspreviouslydetailedintheliterature,thisencompassesthefearthatifdataissharedwithinternationalsurveillancedatabases,thedatacanthenbeusedtodevelopednewdiagnosticsand/ordrugsthatwillthenbesoldbacktocountriesathigh,potentiallyunaffordable,prices.Theywould–they’reprettyhesitantandwhathasbeendoneinthepastisthatiftheyhavevolunteeredtoprovidedatathatcompaniescancomein,identifypotentialmutationsthatwouldbeofrelevanceandmakeadiagnosticandthensellitbacktothecountry.Sothecountryisalittlebitconcernedthatwhatmayhappenisthatacompanycanbasicallymakemoneyoffoftheirdatathatthey’reprovidingforfree.(Interview#1,Lab)3AccessandWhoBenefitsWhichregions(e.g.LMICsvs.HICs)areactuallyabletoimplementWGStechnology-includingthesequencingitselfandthedataanalysis-andhowweavoidsituationswheretheselower-resourcedsettingsarebeing‘used’byotherresearcherswhoderivebenefitintheformofpapers/scientificstat-ure,whilethesequencesandtheresultingdatamaynoteverfeedbackintomeaningfulchangeinTBpolicyandpracticeinthestudysetting.Whichre-gions(e.g.LMICsvs.HICs)areactuallyabletoimple-mentWGStechnology-includingthesequencingitselfandthedataanalysis-andhowweavoidsitu-ationswheretheselower-resourcedsettingsareThisisallabouthelpinglow/middleincomecountriestoget–basically,youknow,whyshouldtheynotbeabletoreapthebenefitsofthisnewtechnology(Interview#2,Lab).Jackson et al. BMC Medical Ethics (2019) 20:43 Page 5 of 14Table2SummarytableoftermsusedinFig.1withillustrativeparticipantquotes(Continued)ItemDefinition/OperationalizedDescriptionIllustrativeQuotebeing‘used’byotherresearcherswhoderivebenefitintheformofpapers/scientificstature,whilethese-quencesandtheresultingdatamaynoteverfeedbackintomeaningfulchangeinTBpolicyandprac-ticeinthestudysetting.4PowerofPublicHealthActorswithintheframeworkofpublichealthcanhaveimmensepowerswhich,whileworkinginthepublicinterest,couldresultintheunderminingofvariousrightsandcivilliberties.Certainthingssell,andIthinkinsomewayspublichealthsells,andIjustthinkweneedtoreallymakesurethatwe’rerigorousandwhenwesaysomethingitisofpublichealthbenefit-becausepublichealthalsocomeswithenormouspowers,right-Icanlookatdata,Icanlookleftandletpeopledothings,sometimesyouactually,youknowbasicallyyouhavelegislationthatsaysyoucanbreachpatientconfidentialityintheinterestofpublichealth-there’salotofpowerassociatedwithpublichealthwhichmeansthatwehavetobeabsolutelyrigorousaboutthatfactthatweonlyusethosepowerswithdiscretionandweonlyuseitforthepurposeforwhichitwasintended.(Interview#10,Governance)Emergingconcernsinrelationtowholegenomesequencing,flowingfromandmappingbacktoissuesoftrustBioinformaticchallenges5UtilityInthecontextofWGSforTBsurveillance,utilityistheusefulnessorbenefitWGScontributestoTBprogramsbothnationallyandgloballyforsurveillance,diagnosticandTBcarepurposes.TheutilityofWGSwithinindividualTBprogramsappearstodependonanumberoffactorsincluding(butnotlimitedto):accesstothetechnology,bioinformaticandhumananalyticcapabilitiesandengagementwithpublichealthworkers.TheutilityofWGSappearstobestrongestwhenitissupportedwithstrongepidemiologicaldata.Andso,evenwithwholegenomesequencing,likethediscriminatorypower,it’sjustlikenotthatamazing.So,itreally,likewhatittellsyouchangessomuchfromdiseasetodisease,itcanbereallyinformativeinsomesituationsorreallynotinformativeinothers.(Interview#8,PublicHealth)6AnalyticsAnalyticsencompassesmanybioinformaticchallengesthatarisefromtheuseofWGSinTBsurveillanceandcare,including:1)analyticcapabilitiesofboththetechnologyandtheprofessionalsworkingwithit;and2)standardizedprocessesforstandardoutputs.Wholegenomesequencingoffersawholedifferent-It’sawholedifferentballgameintermsofresolutionpower.Thatsaid,atthispointintime,it’snotfullystandardizedonhowyoudotheanalysisandthat’spartoftheproblem….ittakesyouknowawhiletodevelop.Sorightnowforwholegenomesequencinginitsinfancywhereyessequencingisnowcheaprelatively,youcangetaprettygoodthroughput,butyougetatonofinformationthatcomesoutofitandit’showyouanalyzethatinformationanddependingonwhatprogramsyouusetoanalyzeit,youmaygetdifferentresultsandthereinliespartoftheproblem.(Interview#9,Lab)7CapacityCapacityistheabilityofcountriestoactuallyButit’sthenhavingapipelinethatcanactuallyJackson et al. BMC Medical Ethics (2019) 20:43 Page 6 of 14Table2SummarytableoftermsusedinFig.1withillustrativeparticipantquotes(Continued)ItemDefinition/OperationalizedDescriptionIllustrativeQuoteimplementWGStechnologyintotheirlocalTBprograms.Thehighcostofthemachine,thesequencingand/ortheanalyticsoftwaremayposechallengestocountries,eitheraloneorinconjunction.interrogatethatsequenceanddevelopaninterpretationofwhatthatsequencemeansintermsoftheresistanceinspecificgenesthatweknowareassociatedwithresistance.So,youknow,wehavetheplatformstoperformwholegenomesequencing,butthenapipelinetoactuallygofromthesamplethroughtosequencingtotheninterrogatingthatsequencetoaninterpretationisthebiggerchallenge.Andthisiswherecountrieswillneedalotmoresupport.(Interview#4,Lab).8UnderstandingScienceWGSisarapidlyadvancingtechnologythatisoftenprogressingataratefasterthanthoseworkingwiththetechnology(eitherindirectlyordirectly)areabletoadapt.Asaresult,epidemiologistsandotherpublichealthworkers(i.e..cliniciansandnurses)areoftenleftreliantonthelabstaffandotherswiththenichedknowledgeofthetechnologytoanalyzeandinterprettheoutputdata.ThishasthepotentialtohavenegativeimpactsontheoverallutilityofWGSinpublichealthpractice.Andso,Ithinkasaresultprobablysomeriskthatthedatafromwholegenomesequencingphylogeneticanalysisthatwe’reprovidingthemanystateandlocalprogramsinsupportoftheirdailypractice,issusceptibletomisinterpretationjustbyvirtueofthefactthattheworkforcecapacityintermsoftrainingandeducationhasnotcaughtupyet.(Interview#13,PublicHealth)Dataprotectionandstewardshipregardingmetadata9MetadataMetadataistheindividualpatient-leveldata,includ-ingadministrativedataandhealthrecords.Questionariseregardingwhetherornotthisdatashouldbelinkedtosequencedgenomicisolatesbeingcol-lectedforsurveillancepurposesandwhoshouldhaveaccesstothisdata.Sowhatdoesitmeanifwestart,youknow,thatslipperyslope,wellwhathappensifwestartsharinglikewelllet’sjustsharegendernow,ohlet’ssharecountryoforiginnow.(Interview#7,PublicHealth).a.LinkedMetadataWhenmetadatadatabasesarelinkedtothesequencedgenomicdataproducedthroughWGS,itbecomesmuchmorepowerfultoolfortrackingoutbreaktransmissionpatterns,atriskcaseidentificationandpotentialdiagnosticdevelopments.However,italsoraisesmanyquestionsandconcernsregardingprivacyandconfidentialityofpatientleveldata,aswellasdataprotectionresponsibilities.Butwestillhavetogothroughourprivacybeforewecandepositinformationandonethingthatstillseemstobeastickingpoint,notnecessarilyjustwithus,Ithinkwithotherinstitutionsisanyassociatedmetadata.SoyouknowIcandepositTBstudynumberone…Asequence,noproblem,theyknowit’sfrom[provincex],butthat’sit.ButlikeIsaidbeforewhat’sgoingtoprovidethemostusefulinformationisallthatmetadatawhichwillgiveuscontextandIthinkthatwe’renotthereyetintermsofhowdowesharethisinformation,becausereallythat’sgoingtobewhat’sneeded.Weneedworldwideinformation,sowehaveanunderstandingofallthedifferentenvironmentsandthedifferentsettingswhere…Youknowwhereweseecertaindrugresistance,mutationsversuswhatweseeinourpopulationoryouknownewlikestrains,clusters,thatkindofthingandhavethatunderstanding.(Interview#9,Lab)Jackson et al. BMC Medical Ethics (2019) 20:43 Page 7 of 14Table2SummarytableoftermsusedinFig.1withillustrativeparticipantquotes(Continued)ItemDefinition/OperationalizedDescriptionIllustrativeQuoteb.UnlinkedMetadataNotlinkingatleastsomemetadatatothegenomicisolatesessentiallyrendersthesequencedgenomicdataproducedthroughWGSuselessfromapublichealthperspectiveastraditionalepidemiologicalactivities,suchascontacttracing,wouldstillberequiredtomakethedataactionableforpublichealthactors.Sonowhowdowecomparethem,sowe’regoingtoneedtogetalotofinformationwithrespecttoyouknowmetadataforexamplethatneedstoaccompanythewholegenomesequencedata,like,youknow,youneedtheclinicaldata,theepidata,youknowoutcomedataandthat’sgoingtoshapetheknowledgethatwillcomeoutofwholegenomesequencing.(Interview#9,Lab)Consequencesand/orimplicationstodataprotectionresponsibilities10StigmaCommunitiesaffectedbyTBtendtoalreadybeamongmarginalizedcommunities.ConcernsoffurthermarginalizationandstigmaarisefromtheuseofWGSforTBsurveillance,especiallywhenmetadataislinkedtothesequencedgenomicdata.Someoftheseconcernsinclude:1)beingdiscriminatedagainstiftheiridentityisdiscoveredthroughgenomicdata;2)publicmisinterpretationfromthemediainthereportingofdiseaseoutbreaks;and3)issuesofdiscriminationregardingimmigrationandcareseekingbehaviours.Youknow,ifweidentifysortofquestionsoftransmission–TB,forexample–youknow,areaffectingsortofaparticularcommunityorpopulation.Whatmaybetheimplicationsofthat,howwouldthatpotentiallyperpetuatestigma?Imean,that’ssortofbeensomeofmyconcernsaroundhowthedata’sbeenusedforHIV.AndsooneofmyconcernswiththeprocessisthatIdon’tthink,likeyousay,theethicalconsiderationsarereallythoughtofupfront.(Interview#14,Governance)11CommunityEngagementInCanada,theUSAandEngland,TBtendstobedisproportionatelyconcentratedwithinmigrantcommunities,particularlythosenewlyimmigrated,andothercommunitiesexperiencingpoverty(i.e..homelesspopulations).InCanada,TBisalsohighlyprevalentwithinIndigenousandFirstNationscommunities.Engagementandtransparentcommunicationwiththeseaffectedcommunitieswhenreportingoutdiseaseoutbreakscanhelptomitigatesomestigmaandhelpensurethatanyreportsareculturallyappropriateandsensitivetotheneedsofthecommunity.Andthentocommunicatewiththecommunity,Ithinkweneedtohavecommunityengagementupfrontwhenwestartdevelopingcommunicationpathways.Solikenow,weneedtoengageadvocacygroups,FirstNationsgroups,representativesofdifferentpatientgroups,tomakesurethattheirthoughtsandconcernsarewell-represented,andthencon-tinuetohavethemonboardwhenwestartcommunicatingtheseresultswithincommuni-tiesandbetweenhealthcareprovidersandpa-tients.(Interview#11,PublicHealth)ChallengesassocaitedwithimplementingTBsurveillancesystemsusingWGS12Implementation/Roll-outSuccessfulimplementation/roll-outofWGSintoTBprogramsforsurveillanceandcarerequiresthatcountrieshavethecapacitytoimplementit,properanalyticsystemsinplace,individualsthatunderstandthescienceofthetechnologyandtheinterpretationandfinally,buy-infromhealthcareworkersthatcanappropriatelycommunicateittopatients.Additionally,successfulimplementationofWGStechnologydependson:1)buy-infromstate-levelandfederaladministrations;2)transparencyandclearcommunicationstrategiesforthepublicandotherjurisdictions;and3)appropriatetrainingsystemsinplacefornewprofessionalsworkingwiththetechnology.Wedon’tgetmuchoutofit,itdoesn’tseemtomakesense,thepredictivevalueispoor,wedon’tunderstandwhatit’sallabout,wedon’tusethem,weignorethem.Wethink,oh,allthismoneyisgoingintotyping,andthentheend-usertotallyignoresit,it’spointless.Soit’sreallyimportanttoexplaintothemthepotentialvalueofusingthewhole-genomesequencedata,andallowingthemtofeelexcitedaboutit,andsomeownershiparoundit,andhopethatthatwouldmeanthattheyengagewithit,andthenuseit,becauseotherwiseit’sawasteofmoney.(Interview#16,Lab).13JurisdictionalIssuesGivengreaterglobalconnections,TBcasesareseldomrestrictedtoonegeographicregion.ButhowTBprogramsareorganized,Iguesswe’llsticktoTB,andactuallydeliveredineachJackson et al. BMC Medical Ethics (2019) 20:43 Page 8 of 14Table2SummarytableoftermsusedinFig.1withillustrativeparticipantquotes(Continued)ItemDefinition/OperationalizedDescriptionIllustrativeQuoteConsequently,issuesofjurisdictionmayoccuratthelocal,state,federalorinternationallevel.Issuesofjurisdictionmayinclude(butarenotlimitedto):1)differencesinanalyticcapacitybetweenjurisdiction;2)‘ownership’overthecaseandresponsibilityforinvestigation;3)communicationacrossjurisdictionsand;4)potentialimpactsonaffectedcommunitiesincludingstigmaand/orimmigrationconcerns.ConsiderationoftheseissueswillimpacthowsuccessfullyWGStechnologiesareimplementedintoTBsurveillanceprograms.province,that’stheir,obviously,theirpurviewandit’snotforanyone,includingourgovernment,tocommenton.(Interview#6,Governance)14Communicationwithnon-communitystakeholdersNon-communitystakeholdersincludeshealthcareworkers(i.e..cliniciansandnurses),laboratoryprofessionalsandgovernmentofficialsatstateandfederallevels.Gainingbuy-inandunderstandingofWGStechnologyfromthesestakeholdersisvitalforsuccessfulimplementationofthistechnology.Ap-propriatemessagingofoutbreaktransmissionpat-ternsandWGStechnologyfromTBstakeholderstoaffectedcommunitiesshouldalsooccurasaresultofthis.Thisnewsystemisquitevisual,soifyoupresentthedataintermsofattractive-lookingtrees,ornetworkdiagrams,andexplainthattothem[TBnurses],thentheytendtogetitrelativelyquickly,andenjoylookingatit,andit–Ithinktheygetenjoymentoutofit,becauseitmakessense.(Interview#16,Lab)Jackson et al. BMC Medical Ethics (2019) 20:43 Page 9 of 14reacting out of just pure mistrust or a – paranoia isnot the right term. I don't know what the right term is,but there's just this – it's sort of this nationalistic senseof we can't share it because it's not the right thing todo” (Interview #2, Lab).While this reluctance can be attributed to many factors,including lack of policy or precedent, other participantshighlighted that it is most often linked to a historicallyjustified fear of others deriving profits from surveillanceefforts in the form of new drugs or diagnostics that arethen not distributed, or are sold back at a higher price, tothose who collected the data.“[LMIC are] pretty hesitant [to share] and what hasbeen done in the past is that if they have volunteeredto provide data that companies can come in, identifypotential mutations that would be of relevance andmake a diagnostic and then sell it back to the country.So the country is a little bit concerned that what mayhappen is that a company can basically make moneyoff of their data that they're providing for free.”(Interview #1, Lab)Furthermore, participants indicated that researchers’interests in advancing their academic careers might alsosuggest another sense of ‘profit’ that may not be sharedequitably with researchers in LMICs.Finally, participants raised questions regarding whichstates or jurisdictions are able to access genomics andbioinformatics technology and consequently implementand benefit from it. Participants highlighted that trust isparticularly relevant in terms of implementing genomicsin LMICs without exploiting their residents and theirdata. Participants stressed that“…the most important thing is ensuring the patient getsthe best care that they need and deserve here. My pointis not to make sure that I get the data from the patient.First and foremost they need to be taken care of and thenI’ll figure out how I’ll get the data to try to think more ona population level” (Interview #5, Public Health).Other participants further claimed that even if the build-ing of WGS tools for TB surveillance and drug susceptibil-ity testing are done in HICs, the benefits of said tools mustextend LMICs:“…it's absolutely not [about] building something thatthey will have a disadvantage on… I just want tomake sure they have an option to do it simply becauseotherwise there'll be places that will never see this.They'll never see this technology and I don't thinkthat's right.” (Interview #2, Lab).Concerns over the utility of WGS in day-to-day clinicalpractice and surveillance for TB were also highlighted byseveral participants, particularly by those working ingovernance or public health roles. Participants describedtrust and utility as being tied together in that healthcareworkers often have to trust the laboratory staff in theirsequencing and interpretation of TB genomic data, whichcurrently requires a high level of expertise.“I’m not the expert when it comes to the interpretationof the genetic material or the genetic information orwhat it means, but I suspect that some folks like myselfand others in public health sort of take it at face valuewithout necessarily fully understanding all of thelimitations of the data.” (Interview #14, Governance).As such, the utility of WGS is closely tied to the ana-lytic capabilities of a given public health institution –both in the ability to sequence and analyze samples, andthe availability of trained staff capable of understandingthe science associated with the technology and the ana-lytics. Together, the utility, analytics, and ability tounderstand the science jointly form the capacity of anygiven public health unit to successfully implement gen-omics safely and effectively for both clinical and publichealth purposes. It is important to note that when dis-cussing the utility of WGS for TB care and surveillance,participants emphasized that benefits may be impartedat individual, community, or population levels.While some public health institutions are capable ofimplementing genome sequencing and analysis, severalparticipants highlighted that any potential analytic cap-acity is undermined if there is no buy-in from non-com-munity stakeholders (i.e., those who are not merelymembers of the general public), such as public health ad-ministrators and healthcare workers. As many of thesestakeholders are acting on behalf of local or national agen-cies, or directly within the NTPs, participants highlightedthat without the support and trust of these stakeholders,integration of WGS into pre-existing health systemswould be challenging, if not impossible. More specifically,lack of training in WGS for those already working in thefield appears to pose a barrier, as a participant explained:“The type of [WGS] data [that] are increasingly usedin public health practice. And so, epidemiologists inmy generation are required to learn on the job. I saymy generation, because I assume graduate schools arenow providing infectious disease epidemiologists withthe curriculum they need to understand this in theirfuture careers. But for my generation, I think thetechnology and the science is probably ahead of thetraining and education.” (Interview #13, PublicHealth).Jackson et al. BMC Medical Ethics (2019) 20:43 Page 10 of 14Lack of training in the WGS can limit the understandingof the technology, and thereby limit trust in the technologyfor this key stakeholder group. Furthermore, several partici-pants highlighted that gaining buy-in from local and regionalpublic health institutions could be achieved by demonstrat-ing the benefits of public health genomics to those workingin governance and public health. Participants also noted thatsuch buy-in and trust building at local, regional, and nationallevels could help mitigate jurisdictional challenges raised byWGS-based TB surveillance efforts since outbreaks arerarely confined to one public health region and each regionmay have their own outbreak investigation protocols.Moreover, closely related to the utility of WGS for TBcare and surveillance, many participants discussed the as-sociated patient-level metadata that could be attached toTB genome sequences. Several participants discussed atlength that without useful metadata, including clinical,phenotypic, and epidemiological data, genomes alone areof limited utility for tracking TB transmission or derivingnew knowledge around genomic correlates of drug resist-ance. However, when this metadata is linked to a genome,it raises privacy and confidentiality concerns and heightenspublic health units’ data protection responsibilities. There-fore, many participants – particularly those in publichealth – cautioned that linking metadata requires carefulconsideration as to the extent of linked data, and takingprecautions to avoid further stigmatizing already vulner-able populations. As highlighted by this participant, think-ing carefully about the optics of the language used inimplementing WGS data is critical to minimizing stigmafor both individuals and entire communities,“Okay, so I think the political and social issues are tiedinto the ethical issues, but I think one of the major issuesis just the optics of it, that we really need to clearlyarticulate what we’re doing with this [genomic data],because it can infer transmission, certainly, and it caninfer person-to-person transmission. So you can actuallylabel a person and call them a “super spreader”, or a“high spreader”. Or you can classify a group of people assuper spreaders or high spreaders, which obviously couldbe stigmatising towards a person, a group, an entirecommunity.” (Interview #11, Public Health).Several participants, especially those with governancecapacity, suggested that community engagement is para-mount to building a relationship of trust, thereby enhan-cing the overall utility of WGS as a tool for NTPs, thoughthe specifics of what processes are entailed by such com-munity engagement was silent even after further probing.DiscussionThis project is the first to engage stakeholders regardingthe ethical challenges of using genomics toward a specificpublic health end, namely assisting in the TB surveillanceand drug susceptibility testing. Others have written aboutethical issues related to WGS only conceptually, i.e., with-out engaging stakeholders, and most often in the contextof human genome sequencing for personalized medicine[10, 15], meaning the results may not be extensible to thepublic health microbiology context. Furthermore, thereare currently few government or institutional policy docu-ments that provide practical guidance for handling ethicalissues in public health surveillance with regard to genom-ics technology [16]. As WGS continues to be imple-mented by NTPs and surveillance programs, the need forpractical policy guidance will become paramount.In the literature, we see that the concept of trust isfoundational to the very definition of public health, asdefined by the Institute of Health in 1988: “Public healthis what we, as a society, do collectively to assure theconditions in which people can be healthy” [17]. Child-ress and colleagues state that (2002) “‘what we, as a soci-ety, do collectively’ suggest(s) the need for cooperativebehavior and relationships built on overlapping valuesand trust” [18]. However, currently the literature onlypassively alludes to the concept of trust in the context ofgenomics for both infectious disease care and surveil-lance purposes, painting a limited picture of what trustmeans in this context [19]. Specifically, this literaturedoes not provide concrete suggestions through whichgenomics ought to be implemented for infectious diseasesurveillance that is cognizant of building trust in publichealth. While challenges related to engendering trust innew technology integration has been thoroughly exam-ined in relation to biobanking, this discussion is sorelymissing from the literature regarding whole genomesequencing [19–22]. In those instances where ‘trust’ hasbeen identified in projects as a key value in the contextof emerging data sciences and genomics technologies,the use of trust remains atheoretical [23–25]. In thisproject on WGS and TB, we, too, use the notion of trustand trustworthiness atheoretically, as a dispositionalvalue and characteristic of persons or groups given theempirical scope of our project. Therefore, further theor-etical work on the value of trust is needed, so that it canbe more robustly applied in public health and technol-ogy implementation. We would argue that we mustbuild on the various discussions of trust in the ethics lit-erature [26–28], and combine it with existing empiricalbioethics accounts of trust in data sciences and genom-ics, to produce normative accounts that are both philo-sophically sound and practicable.Based on our interviews, we can draw the followingconclusions: first, those persons or groups developingand implementing WGS for public health microbiologyneed to carefully consider the ecosystem or context inwhich this technology will be implemented in order toJackson et al. BMC Medical Ethics (2019) 20:43 Page 11 of 14build and maintain trust between key stakeholders, includ-ing the public and patients. In large measure, understand-ing the context includes understanding the powerdynamics that exists between actors and the history thatmay have led to existing power imbalances in the first in-stance. The interviews in this project suggest that some ofthose persons working with WGS in TB are aware of thepre-existing contexts in which they aim to build trust,though perhaps not all; even if they do acknowledge powerimbalances, it may be that they do not fully account for itscurrent and potential future effects on the implementationof WGS. Moreover, within in the context of an endemic orpandemic infectious disease, it is imperative to come to ashared understanding of what goals public health seeks toachieve via prevention and treatment measure, e.g., TB, toensure that everyone within a public health unit can directtheir efforts accordingly and efficiently. Building and main-taining relationships of trust between public health actorswill become essential to building a public health ecosystemin which WGS can thrive.Part of understanding how to build and maintain trustwithin a public health ecosystem includes understandingwhat material, human resources, and general infrastructurecurrently exist to facilitate the integration of WGS into agiven public health system. This includes both the neces-sary technical expertise, but also the ancillary infrastructureneeded for implementation, such as the ability to bettercommunicate within and between public health units andthe need to build cross-disciplinary personnel capacity. Forexample, laboratory technicians with sequencing and bio-informatics expertise need to work with the clinicians andepidemiologists delivering care at the patient and commu-nity levels, which can be facilitated by both cross-trainingand through improved communication between groups,thereby building trust both in the technology and withinhealthcare teams. Trust in the technology can be fosteredthrough enhanced transparency of the science of genomicsfor public health workers. Moreover, communicationbetween those working in public health units also meanscreating the space for dialogue between stakeholders,whereby clinicians can ask questions of laboratory experts,and laboratory experts listen to the needs of clinicians tobuild more useful genomic and bioinformatics tools.Furthermore, most participants suggested that weought to meaningfully engage with members of the pub-lic likely to be affected by public health genomics effortsin order to build and maintain their trust. Building trustin WGS and public health is always imperative, but it isparticularly timely given the air of mistrust toward scien-tists [29]. Technological innovations have a history ofnot succeeding for a number of reasons, one of which isa lack of engagement with communities and the broaderpublic, while not accounting for historical injustices [30,31]. This public engagement requires, at minimum, twoapproaches: 1) situating WGS within the broader publicdialogue of science, public health, and addressing infec-tious diseases; and 2) working with patients in specificdisease areas. For example, in HIV and TB, civil societyhas already produced Good Participatory Practice guide-lines [32, 33] for involving communities as part of drugdevelopment efforts; a similar process can and should beused for the development of genomics-based diagnosticsand surveillance tools.Finally, those using WGS in high-income countries(HICs) need to carefully consider their obligations to-ward their colleagues and communities in LMICs. Thereis extensive literature on the need to create mechanismsfor data-sharing and ensuring that new technologies areaccessible to those working in LMICs [8, 26, 34]. Theethos of granting agencies and foundations, such as theBill and Melinda Gates Foundation, needs to be heeded:the development of technologies like WGS should notproceed without considering the implications for LMICsand global health [35, 36]. The Relational SequencingTB Data platform (ReSeqTB) is a global initiative withthe goal of providing a “one-stop shop” of global geneticTB isolates, and are thereby providing HICs and LMICswith a mechanism to share TB data globally and enhan-cing LMIC’s access to genomic technology and data. Al-though HIC NTPs are using local funds to implementWGS for regional benefits, it is still necessary to con-sider the global health impacts of these programs. Infec-tious diseases do not respect borders – indeed it is oftensaid that “TB anywhere is TB everywhere” [37] – thuswe must work collaboratively with colleagues in LMICsto better attend to the global scale of infectious diseases.LMICs have experienced a history of exploitation of gen-etic data and, as a result, are often reluctant to sharedata within global initiatives [38].Furthermore, global health governance in the contextof public health continues to face significant challengesincluding, but not limited to: insufficient global coordin-ation, national and organizational self-interest, and alack of global resources [11]. The complexity and chal-lenges associated with WGS discussed in this paper arelikely to only further exacerbate these challenges. In thenew era of large-scale data science, including artificialintelligence and machine learning, concerns aroundwhat some have termed ‘surveillance capitalism’ mayalso arise [39], i.e., the profits and tools that are de-rived from data acquired through surveillance activ-ities that may be cost-prohibitive for countries toacquire for local populations. Therefore, keeping inmind concerns related to surveillance capitalism, it isimperative that HIC and organizations tasked withusing WGS for TB surveillance consider these implica-tions for LMICs and work with colleagues in LMICs toaddress global challenges.Jackson et al. BMC Medical Ethics (2019) 20:43 Page 12 of 14LimitationsGenome sequencing is presently an emerging, ratherthan an established, tool in the TB laboratory, with itscurrent use and integration into existing health systemslimited to three major geographic regions and selectinternational health organizations. Thus, in this explora-tory study, the perspectives and experiences shared pri-marily derive from Canada, the US, and the UK, with aparticular emphasis on the Canadian experience. We didfind that results did not differ between participants onthe basis of geography. However, most participants werebased in HIC with low TB incidence rates since that iswhere WGS technology is currently being used; as such,perspectives from LMIC were only partially or tangen-tially captured, through the responses of those workingfor international organizations representing global inter-ests, despite our efforts to identify participants throughsnowball sampling. We intend to explore the experi-ences of those working with WGS in LMICs in futureresearch. Finally, due to limited resources and limitedpatient education on the use of genomics for TB careand surveillance, perspectives of patients with TB werenot captured. These perspectives will add valuableinsight into ensuring the fair and responsible implemen-tation of genomics into existing health systems, and weintend to explore these perspectives in future research.ConclusionThe use of genomics in TB laboratories and TB preven-tion and care programs is becoming increasingly com-mon, necessitating an inventory of the ethical, legal, andsociopolitical implications associated with public healthgenomics. Given the complex and technical nature ofthis new approach to public health microbiology andepidemiology, establishing relationships of trust betweenthose working with genomics technology and those dir-ectly impacted by it is imperative in ensuring that thispromising new approach is used to its fullest potential.Additional filesAdditional file 1: Table of interview questions. Semi-structured inter-view guide. A copy of the semi-structured interview guide broken downby question category, selected questions for each category and relevantpotential sub-probes. (DOCX 15 kb)AbbreviationsHIV: Human immunodeficiency virus; LMICs: Low and Middle-Income Coun-tries; NTPs: National TB programs; ReSeqTB: Relational Sequencing TB Dataplatform; TB: Tuberculosis; WGS: Whole genome sequencingAcknowledgementsWe wish to express our deepest gratitude to the individuals who agreed toparticipate in our research and to take the time out of their busy schedulesprovide us with their insights and answer our questions. This work wouldnot have been possible without their valuable input. Moreover, some ofthem agreed to provide feedback on our initial analysis (member check), andour understanding of the subject matter was further strengthened andenriched thanks to their comments.Authors’ contributionsDSS, CJ, and JLG were involved in the conception and design of the study.HCS conducted the literature review. DSS collected the data and DSS, CJ,and JLG were involved in data analysis and interpretation. CJ and DSS wrotethe first draft. CJ, DSS, JLG, and HCS contributed to subsequent drafts of thepaper. All authors have read and approved the final paper.FundingThis work was funded by a grant from Genome British Columbia (Grant No.SOCi-002). The findings and conclusions are those of the authors and do notnecessarily represent the official position of funding agencies. The fundingbody made possible the collection of data, but had no role in the study de-sign, the collection, analysis, and interpretation of data, writing the manu-script, or in the decision to submit the manuscript for publication.Availability of data and materialsThe datasets created and/or analyzed during the current study are notpublicly available due to confidentiality requirements but can be availablefrom the corresponding author in an anonymized format after consent isobtained from participants.Ethics approval and consent to participateEthics approval was obtained from Simon Fraser University’s office ofresearch ethics (No. 2017 s0485) prior to commencing the project. Writtenconsent to participate was obtained from all participants through signedinformed consent forms.Consent for publicationNot applicable.Competing interestsThe authors declare that they have no competing interests.Author details1Faculty of Health Sciences, Simon Fraser University, BLU 11300 – 8888University Drive, Burnaby, BC V5A 1S6, Canada. 2British Columbia Centre forDisease Control, Vancouver, BC, Canada. 3School of Population and PublicHealth, the University of British Columbia, Vancouver, BC, Canada. 4SydneyHealth Ethics, Faculty of Medicine and Health, University of Sydney, Sydney,Australia.Received: 13 December 2018 Accepted: 12 June 2019References1. Rowell JL, Dowling NF, Yu W, Yesupriya A, Zhang L, Gwinn M. Trends inpopulation-based studies of human genetics in infectious diseases. PLoSOne. 2012;7(2):e25431.2. Punina NV, Makridakis NM, Remnev MA, Topunov AF. Whole-genomesequencing targets drug-resistant bacterial infections. 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Vancouver : University of British Columbia Library
BioMed Central
Attribution 4.0 International (CC BY 4.0)
Faculty
Trust
Surveillance
Tuberculosis
Whole genome sequencing
Qualitative
Empirical ethics
Trust and the ethical challenges in the use of whole genome sequencing for tuberculosis surveillance: a qualitative study of stakeholder perspectives
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