Trust and the ethical challenges in the use of whole genome sequencing for tuberculosis surveillance: a qualitative study of stakeholder perspectives
department or school: Medicine, Faculty of
department or school: Other UBC
department or school: Non UBC
department or school: Population and Public Health (SPPH), School of
data provider: DSpace
identifier citation: BMC Medical Ethics. 2019 Jul 04;20(1):43
contributor: BC Centre for Disease Control
rights copyright: The Author(s).
creator: Jackson, Carly
creator: Gardy, Jennifer L
creator: Shadiloo, Hedieh C
creator: Silva, Diego S
issued: 2019-07-05T15:22:06Z
issued: 2019-07-04
description: 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.
aggregated CHO: https://circle.library.ubc.ca/rest/handle/2429/70917
note: 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.Ke…
has type: Article
is shown at: 10.14288/1.0379767
language: eng
peer review status: Reviewed
provider: Vancouver : University of British Columbia Library
publisher: BioMed Central
publisher DOI: 10.1186/s12910-019-0380-z
rights: Attribution 4.0 International (CC BY 4.0)
rights URI: http://creativecommons.org/licenses/by/4.0/
scholar level: Faculty
subject: Trust
subject: Surveillance
subject: Tuberculosis
subject: Whole genome sequencing
subject: Qualitative
subject: Empirical ethics
type: Text
identifier URI: http://hdl.handle.net/2429/70917