Work

Perspectives on the ethical, legal, and social implications of pathogen genomics: lessons from a tuberculosis outbreak

Year: 2026

Type: article

Abstract: Whole genome sequencing (WGS) is increasingly becoming a routine tool for the management of infectious diseases, and its implementation into public health systems requires careful consideration of the sociocultural context. High-resolution WGS data can provide insights into transmission sources and pathways, which presents privacy concerns and other ethical issues. We explored the ethical, legal, and social implications (ELSI) of WGS from the perspectives of public health professionals working with the technology in the context of a tuberculosis (TB) outbreak that occurred primarily among a Pasifika community in Victoria, Australia. We conducted qualitative, retrospective interviews with public health staff involved in the outbreak investigation to explore their perspectives on the ELSI associated with WGS. The interviews were iterative and thematic analysis was used to identify key themes. Sociocultural factors were central to the TB investigation. Public health staff worked closely with patients, families, and local churches to build trust, manage TB stigma, and facilitate access to TB education and healthcare. In this context, the ten interview participants highlighted the importance of considered and ethical implementation of WGS. Key ELSI themes were: (1) trust and relationship-building as a foundation for successful outbreak response; (2) patient privacy and confidentiality; (3) appropriate language use to reduce stigma; 4) transparency and community engagement; (5) equity of benefits and risks; and (6) emerging legal considerations. Notably, thoughtful dialogue around WGS and the associated ELSI by public health staff could be used as a mechanism to build trust with patients. This study illustrates how public health professionals are actively navigating ELSI in practice. WGS implementation should build public trust through transparent WGS processes, strong privacy protections, the use of non-stigmatising language, and active community engagement. However, there is a lack of formal guidance or existing consensus to address ethical tensions. Robust ethical frameworks should be established through a formal consensus approach with the inclusion of community perspectives to enhance the responsible long-term implementation of WGS.

Source: BMC Medical Ethics

DOI: 10.1186/s12910-026-01662-6