ArticleBMC medical ethics2019
Trust and the ethical challenges in the use of whole genome sequencing for tuberculosis surveillance: a qualitative study of stakeholder perspectives.
Article in BMC medical ethics, 2019. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 20 papers, 1 of them a synthesis that pooled it.
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Who cites it
20 citing papers in PubMed, 1 synthesis or guideline pooled it, 33 citations in OpenAlex.
- Context of data sharing practices in collaborative human genomic research in low and middle income countries: A systematic review.PloS one · 2026Pooled it
- Decolonizing genomic data ownership: a qualitative study of legal practices and access in Uganda.BMC medical ethics · 2026Article
- Ethical Challenges of Obtaining Informed Consent: Qualitative Research on the Perspectives of Tuberculosis Patients Participating in Human Genomic Research in Ethiopia.Developing world bioethics · 2026Article
- "ItResearch ethics · 2025Article
- Healthcare providers' knowledge, attitudes, and perceptions from using targeted sequencing to diagnose and manage drug-resistant tuberculosis (DR-TB) in Eswatini.PLOS global public health · 2025Article
- Genomic Data Sharing: Navigating The Ethical Issues In Collaborative Research Relationships Between The Global North-South.African journal of bioethics · 2024Article
- Rapid Bioethical Assessment forEthiopian journal of health sciences · 2023Article
- Article
- Botswana tuberculosis (TB) stakeholders broadly support scaling up next-generation whole genome sequencing: Ethical and practical considerations for Botswana and global health.PLOS global public health · 2023Article
- The New Precision Stewards?Journal of personalized medicine · 2022Article
- Using Genomics to Understand the Epidemiology of Infectious Diseases in the Northern Territory of Australia.Tropical medicine and infectious disease · 2022Review
- Evaluation of the collaborative integrated surveillance system (ViCo) in Guatemala: a qualitative study on lessons learned and future perspectives.BMC public health · 2022Article
- Advancing TB research using digitized programmatic data.The international journal of tuberculosis and lung disease : the official journal of the International Union against Tuberculosis and Lung Disease · 2021Article
- Defining ethical challenge(s) in healthcare research: a rapid review.BMC medical ethics · 2021Review
- An implementation science approach to evaluating pathogen whole genome sequencing in public health.Genome medicine · 2021Article
- Transparency, trust, and community welfare: towards a precision public health ethics framework for the genomics era.Genome medicine · 2020Article
- Whole-genome sequencing as part of national and international surveillance programmes for antimicrobial resistance: a roadmap.BMJ global health · 2020Review
- Digital microbiology.Clinical microbiology and infection : the official publication of the European Society of Clinical Microbiology and Infectious Diseases · 2020Review
- Motives of contributing personal data for health research: (non-)participation in a Dutch biobank.BMC medical ethics · 2020Article
- Bacterial Vaginosis: Current Diagnostic Avenues and Future Opportunities.Frontiers in cellular and infection microbiology · 2020Review
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
4 authors at 3 institutions in 2 countries.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundEmerging 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.
methodBetween 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.
resultsRespondents 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.
conclusionsSuccessful 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.
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Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.