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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

SOC003
  • 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

Advancements in whole genome sequencing (WGS) technology have dramatically changed public health surveillance and outbreak investigations, allowing for accurate reconstruction of disease transmission paths.  This “genomic epidemiology” approach has been used to great effect to explore tuberculosis (TB) transmission in British Columbia and globally. In Canada, most TB transmission occurs amongst socially marginalized populations.

However, using WGS for TB surveillance and outbreak investigation raises multiple ethical challenges, including questions around privacy and confidentiality; who has access to information generated via WGS and how this information can be used; and whether transmission events inferred via WGS can be used in criminal or civil litigation.  Despite a sense of what some of the ethical challenges might be and given the limited literature around the ethics of WGS, there is no clear sense of what are the ethical challenges associated with WGS for TB, the context concerning these challenges, and what can be done to mitigate or solve these challenges.

In order to fill this gap, Dr. Diego Silva, an Assistant Professor, Faculty of Health Sciences at Simon Fraser University conducted six focus groups with members of the general public in British Columbia, as well as 22 telephone interviews with WGS and public health experts in TB across Canada, the US, the UK, and international health organizations. From these discussions, he found that successful implementation of WGS relies on building trust between those working with genomics technology and clinicians, as well as building trust (a) between the public and the public health agencies and (b) within public health agencies themselves. This is critical because of the complexity of WGS for communicable disease control purposes.