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Ensuring equitable access to genetic counselling and testing

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For patients and families with unexplained health conditions, genome-wide sequencing can provide much-needed answers, but it can also raise a lot of questions. The GenCOUNSEL project aims to figure out the best ways to provide genetic counselling for genome-wide sequencing in Canada so these families can be supported. Researchers are looking into different clinical, ethical, and economic methods to make sure there is equitable access to genetic counselling and testing for all Canadians.

Dr. Larry Lynd

GenCOUNSEL brings together experts in genetic counselling, genomics, ethics, health services implementation and health economics. The project is based at BC Children’s and Women’s Hospitals, and led by BCCHR. CHÉOS’ Dr. Larry Lynd is one of the project co-leads, along with researchers from McGill University and UBC.

Genetic testing to analyze a person’s entire genome, called genome-wide sequencing (GWS), is an exciting and potent new tool for diagnosing disorders, diseases, and risk factors. However, the information garnered from this type of testing can be overwhelming and may be misinterpreted by non-experts. Genetic counsellors are health professionals who aid patients and families in making informed decisions around this type of testing. However, due to the small number of counsellors in Canada and lack of legal recognition, access to their services is extremely limited. As the access to GWS improves and cost decreases, the use of this technology will increase along with the need for genetic counselling.

Dr. Lynd’s focus on the GenCOUNSEL project is determining ways in which current and novel genetic counselling practices and processes can be optimized to accommodate the use of GWS in the clinical setting from multiple viewpoints.

Genome Canada and CIHR invested $162 million in 15 genomics projects, announced in January of 2018. These projects take place over four years and will utilize genomics research to improve health outcomes, strengthen evidence-based health approaches, and improve the cost-effectiveness of Canadian health care systems.

Recent publications from GenCOUNSEL are available HERE.