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Trust and the ethical challenges in the use of whole genome sequencing for tuberculosis surveillance: a qualitative study of stakeholder perspectives.
BMC Medical Ethics ( IF 2.7 ) Pub Date : 2019-07-04 , DOI: 10.1186/s12910-019-0380-z
Carly Jackson 1 , Jennifer L Gardy 2, 3 , Hedieh C Shadiloo 1 , Diego S Silva 1, 4
Affiliation  

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.

中文翻译:

使用全基因组测序进行结核病监测的信任和道德挑战:利益相关者观点的定性研究。

背景技术新兴的基因组技术有望实现更有效的传染病控制。全基因组测序(WGS)越来越多地用于结核病(TB)的诊断,监测和流行病学中。但是,尽管公共卫生机构使用WGS可能引起道德,法律和社会政治方面的关注,但对这些挑战的了解却很少。方法在2017年11月至2018年4月期间,我们对22个主要利益相关者进行了半结构化访谈,涉及治理和政策,公共卫生和实验室科学领域,这些领域代表了目前在国家结核病项目中使用WGS的主要司法管辖区。访谈的主题分析是使用NVivo 11进行的。结果受访者确定了在结核病护理和监测中与WGS相关的几个道德和实践挑战,所有这些挑战都与信任问题,包括:1)公共卫生的力量;2)数据共享和从监视工作中获得的利润;3)有关谁有权使用该技术并从中受益的担忧。其他挑战包括:WGS为公共卫生计划增加的潜在效用,将必要的流行病学元数据与基因组数据相关联的风险以及与实施该技术的司法管辖权相关的挑战。结论WGS的成功实施取决于在使用基因组学技术的人员与受其直接影响的人员(包括临床医生)之间建立信任关系。
更新日期:2019-07-04
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