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Empirical and Philosophical Analysis of Ethical Issues in the use of Whole Genome Sequencing for the surveillance and outbreak investigation of Mycobacterium tuberculosis in British Columbia

  • Project Leaders: Diego Silva
  • Institutions: Simon Fraser University (SFU)
  • Budget: $50,000
  • Competition: Societal Issues Competition - Round 1
  • Genome Centre(s): Genome BC
  • Fiscal Year: 2017
  • Status: Active

Public health surveillance programs and outbreak investigations have been dramatically enhanced through the use of whole genome sequencing (WGS). This is evidenced through the application of WGS in the understanding of tuberculosis (TB) transmission pathways, providing critical information to aid in controlling outbreaks and better identifying, testing, and treating those at risk in British Columbia as well as globally.

However, there is no clear sense of the ethical challenges associated with the use of WGS in surveillance and outbreak investigations. For example, there are unanswered questions around privacy and confidentiality of information generated through WGS, as well as who has access to, and how the information can be used. These concerns are amplified when the technology is used within socially marginalized populations, which are most affected by a TB outbreak.

This project is working to better understand these ethical issues. This research will combine focus groups with BC residents and interviews with those working in WGS and TB epidemiology to clarify and provide policy guidance to address societal concerns over the use of WGS and genetic epidemiology approaches in public health efforts.