Genomics is vital for the personalized treatment of disease, especially rare diseases. This data can also be used to predict the likelihood of diseases occurring and which individuals or groups might be predisposed to certain diseases.
The Government of Canada has just invested $15 million to start developing The Pan-Canadian Genomic Library, a national, centralized genomic data management system. This database will allow healthcare professionals to capture, store, and access Canadian data in a secure, equitable, and sustainable manner.
Dr. Jordan Lerner-Ellis, Associate Professor in the Department of Laboratory Medicine and Pathobiology at the Temerty Faculty of Medicine and Head and Director of the Advanced Molecular Diagnostics Laboratory at Mount Sinai Hospital, is one of the Co-Principal Investigators on the grant.
As founder of the Canadian Open Genetics Repository in 2012 (funded by Genome Canada), one of the first open access clinical grade genetic databases in the country, he was approached to be part of this ground-breaking project.
His role will be in the creation of variant databases for biomedical research that can be used for research purposes and to inform clinical interpretations, as well as the creation of software technology tools for rare disease and cancer research.
“As more and more genomes are sequenced in the future, we need ways of storing and analyzing the data to advance knowledge. Up until now, genomic data from research studies across Canada has been locked in silos behind institutional firewalls. The Pan-Canadian Human Genome Library will be a place where that data can be co-located or federated and stored. Research participants will be able to participate in research through a national registry and researchers will be able to be authenticated and access genomic data in a secure trusted researcher environment for research purposes. That means we will have the ability to bring large datasets together; we need hundreds of thousands of individual genomes to make sense of the relationship between genetics and disease. This platform will facilitate biomedical research at scale which we’re very excited about.
This project has brought together a large team of experts across Canada. From those focused on ethics, diversity and inclusion of underrepresented populations, IT software engineers and informaticians, legal experts, genomic researchers and clinicians, to commercial and international partnerships. It's a great start to bringing the genomics community together in Canada”.
Read the full statement from the Canadian Institutes of Health Research
Canada is a world-leader in genomic research—the study of all of a person’s or population’s genes. The field, which involves sequencing genomes to identify variations that give researchers a better understanding of health and disease, holds enormous potential for improving the health of Canadians.
For example, through sequencing, scientists can pinpoint which genetic mutations cause disease, tailor medical treatments to people’s specific genetic makeup, detect people’s risk for developing inherited diseases, trace how viruses like the one that causes COVID-19 spread and evolve, and study the DNA of groups of people living with a disease to uncover how to treat or even cure it in the future.
Despite Canada’s research capacity and many established genomics laboratories, there is no national database or strategy for how to capture, store, and access Canadian genomic data in an equitable, secure, and sustainable manner.
To close this gap and harness the potential of genomic medicine, the Minister of Health, the Honourable Mark Holland, announced today a $15 million investment to create a Pan-Canadian Genome Library which will allow for easier sharing of genomic data across the country. The funding comes from the Canadian Institutes of Health Research (CIHR) and builds on investments from the Government of Canada’s National Strategy for Drugs for Rare Diseases.
The Pan-Canadian Genome Library, led by Dr. Guillaume Bourque, Director of Bioinformatics at the McGill Genome Centre, will provide researchers and healthcare professionals with a centralized database that reflects the rich diversity of people living in Canada. A core principle of the Genome Library is Indigenous control over genomic datasets of Indigenous Peoples to ensure autonomy and respectful use of Indigenous health data. With this investment in the Genome Library, Canada remains a leader in genomic research that is diverse and equitable and ready to be used by healthcare professionals.
The Library was developed through a strategic partnership between CIHR, Genome Canada, the Digital Research Alliance of Canada, and CGEn, which is Canada’s national platform for genomic sequencing and analysis. It will be hosted at CGEn, which includes the McGill Genome Centre at McGill University in Montreal, The Centre for Applied Genomics at The Hospital for Sick Children (SickKids) in Toronto, and the Michael Smith Genome Sciences Centre at BC Cancer in Vancouver.
