Trust and the ethical challenges in the use of whole genome sequencing for tuberculosis surveillance: a qualitative study of stakeholder perspectives

Abstract

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. Electronic supplementary material The online version of this article (10.1186/s12910-019-0380-z) contains supplementary material, which is available to authorized users.

Motives of contributing personal data for health research: (non-)participation in a Dutch biobank

“…The accounting for context becomes even more key in the case of a large-scale, centralized data repository because of the increasing morally ambiguous and indirect consequences of participation in big data health research for society and for participants [6,51]. For example, debates about insights in genetic test results and providing feedback to individuals and their families about the genetic risks are ongoing, given differing views on the 'soft' impacts of genetic risks considered as a good practice [52,53]. An effective regulatory framework should clearly stipulate the responsibilities of data repositories in relation to health research while outlining the implications of participation and non-participation.…”

Bacterial Vaginosis: Current Diagnostic Avenues and Future Opportunities

“…Whole genome sequencing has the potential to generate a large amount of data from a single isolate, including species, strain type, virulence, antibiotic resistance and other information for outbreak and case management (Besser et al, 2018 ). Whole genome sequencing has been suggested to be used for microbial epidemiology, the surveillance of pathogens and outbreaks and for the prediction of antibiotic resistance (Jackson et al, 2019 ). Whole genome sequencing or targeted metagenomics (16S rRNA) might be useful for the diagnosis of BV in clinical cases where an intermediate VMB has been identified [Nugent score finding (score 4–6)].…”

“…As an intermediate VMB is proposed to represent a transitional state of the VMB to BV or vice versa , NGS techniques can be used to monitor slight changes in terms of abundance and composition of the VMB. The development of NGS technologies is ongoing and is suggested to be highly applicable in the future, where personalized medicine approaches will be possible for the treatment of specific bacterial infections (Punina et al, 2015 ; Jackson et al, 2019 ). The personalized medicine approach might also be applicable in BV because of a lack of consensus on the structure and composition of the VMB in this complex condition.…”

Motives of contributing personal data for health research:(Non-)participation in a Dutch biobank

“…The accounting for context becomes even more key in the case of a large-scale, centralized data repository because of the increasing morally ambiguous and indirect consequences of participation in big data health research for society and for participants [2,54]. For example, debates about insights in genetic test results and providing feedback to individuals and their families about the genetic risks are ongoing, given differing views on the 'soft' impacts of genetic risks considered as a good practice [55,56]. An effective regulatory framework should clearly stipulate the responsibilities of data repositories in relation to health research while outlining the conditions pertaining to opportunities and limits.…”