GenCOUNSEL: Optimization of genetic counselling for clinical implementation of genome-wide sequencing
“For patients with rare, unexplained disorders and their families, genome-wide sequencing (GWS) can provide much-needed answers but it can also raise a lot of questions. Families need clinical expertise and emotional support to make informed decisions. Genetic counsellors are specialist health care providers with the expertise to lead the integration of genomics into patient care across all areas of medicine," said Dr. Alison M. Elliott, Board certified genetic counsellor and Investigator, BC Children’s Hospital; Project Lead, CAUSES Clinic and RAPIDOMICS; Associate Member, Women’s Health Research Institute; Clinical Associate Professor, Department of Medical Genetics, University of British Columbia.
"Our project, GenCOUNSEL, will result in increased access, patient satisfaction and cost-efficiency through provision of effective and professional genetic counselling for all Canadians who need it,” said Dr. Elliott.
GWS, a powerful genetic test that analyzes a person’s entire genetic make-up to diagnose the cause of genetic disorders will soon be available in Canada. GWS can provide patients with valuable information about their health, but it can generate complex results that are difficult for non-expert health providers to interpret and can reveal disorders or disease risk unrelated to the original reason for testing.
Genetic Counsellors represent the “front line” of medical genetics and their expertise will be particularly vital to families receiving GWS. By providing education, emotional and decisional support to patients and families and guiding them to make informed decisions regarding genetic testing, genetic counsellors help prevent inappropriate decision making that can have devastating health and/or emotional consequences. However, in Canada, there is limited access to genetic counselling, and this issue will become more pressing as GWS becomes increasingly available.
GenCOUNSEL is the first project to look at genetic counselling issues related to the implementation of GWS. It will bring together international experts in genetic counselling, genomics, ethics, law, health services implementation and health economics to determine the best methods for providing genetic counselling and ensure all Canadians have access to this specialized expertise and support.
Dr. Elliott leads this project with co-leads Dr. Jehannine Austin, BC Mental Health and Addictions Research Institute, BC Children’s, BC Women’s and UBC; Dr. Bartha Knoppers, Centre of Genomics and Policy, McGill University; and Dr. Larry Lynd, UBC, Centre for Health Evaluation and Outcomes Sciences, Providence Health Care Research Institute, and Centre for Clinical Epidemiology and Evaluation, Vancouver Coastal Health Care Research Institute. This project is based at BC Children’s, BC Women’s and UBC.