When a family in the Maritimes receives a genetic test result, information shared by patients across Canada can help their care team better understand what that result means and how it may affect their care.
New national guidance from the Canadian College of Medical Geneticists (CCMG), published in The American Journal of Human Genetics, sets out how Canadian clinical laboratories can share genetic data safely and ethically. Its first recommendation is to make data sharing part of standard clinical practice.
The CCMG convened an expert working group to develop the guidance, bringing together clinical laboratory geneticists, genomics specialists, legal and clinical experts, a genetic counsellor, and patient and family partners. Victor Martinez, clinical genomics specialist, represented IWK Health in this work.
The recommendations support sharing genetic information when it can help advance research and care, while ensuring information that could identify a patient remains protected.
“The answer for a patient often depends on what we have learned from others,” says Martinez. “When laboratories share what they learn, each result we interpret for Maritime families can draw on evidence from across the country. That is the next step in the care we provide.”
As genomic sequencing plays a larger role in diagnosing rare diseases and cancer, this guidance provides laboratories with a common basis for collaboration. At IWK, it aligns with work through the Maritime Centre for Precision Medicine, which is building a genomic data governance framework.
Read the paper: https://authors.elsevier.com/sd/article/S0002-9297(26)00342-3