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.
Dr. Diego Silva, an Assistant Professor, Faculty of Health Sciences at Simon Fraser University is working to better understand these ethical issues. His 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.
“Despite a sense of what some of the ethical challenges might be, there is very little literature around the ethics of whole genome sequencing.” said Dr. Silva, “It is imperative to engage with stakeholders to gather their perspectives in order to better understand the kinds of ethical issues that arise and their scope, so we can work on ways to address these ethical challenges.”
“Understanding societal perceptions of genomic applications is as important as developing the technology.” said Sally Greenwood, Vice President, Communications and Societal Engagement at Genome BC. “Through dialogue we can better understand how these technologies affect people directly, and inform strong policy development to address societal concerns.”
This project, 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, is valued at $50,000 and was funded through Genome BC’s Societal Issues Competition.
About Genome BC’s Societal Issues Competition
Genome BC created the Societal Issues Competition as a way to recognize the need for stand-alone research projects that identify and study the societal issues that emerge from genomics-based innovations. Applied social sciences and humanities research, encompassing the diverse areas of study relevant to genomics research, is a necessary aspect of the genome sciences. This may include, for example, researching broader themes of societal importance such as genetic discrimination and public perspectives of genomics application by sector, developing effective practices and policies for uptake of genomic-based applications, identifying when uptake would not be appropriate or examining cross-cutting themes related to genomics that may be important to society.