sector_ico_Health_trans Human Health

Large Scale GE3LS Project- GenCOUNSEL- optimization of genetic counselling for clinical implementation of genome-wide sequencing

276OGC
  • Project Leaders: Alison Elliott, Bartha Knoppers, J9 Austin, Larry Lynd
  • Institutions: University of British Columbia (UBC)
  • Budget: $4311436
  • Program/Competition: Large Scale Applied Research Programs
  • Genome Centre(s): Genome Canada
  • Fiscal Year: 2018
  • Status: Active

GenCOUNSEL, led by Dr. Alison Elliott of the University of British Columbia, set out to make genetic counselling easier to access, more effective and more efficient for people who receive genome-wide sequencing in Canada. The project examined where genetic counsellors add the most value, how counselling can be delivered in clinics, laboratories and virtual settings, as well as how health systems can plan for growing demand. GenCOUNSEL’s team studied real patient pathways, compared in-person care with telehealth and online tools and examined how counsellors can support better test selection, clearer communication of results and informed decisions.  

The team illustrated that flexible models like telehealth and digital decision aids can expand access, especially for people who live far from specialty centers or have limited clinic availability. Evidence from clinical collaborations indicated that integrated counsellors could help improve the appropriateness and interpretation of tests, which could reduce avoidable costs and delays. The team also built a web based workforce planning model that estimates how many counsellors are needed across provinces so planners can test scenarios and plan services.  

In parallel, GenCOUNSEL analyzed legal and policy options for recognizing the profession in Canada, informed by work with patient partners, professional bodies and health system stakeholders. Together, these results provide practical tools and policy-ready evidence to improve access to high quality genetic counselling, support equitable use of genomic testing and help health systems prepare for future needs.