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Frequently Asked Questions

What is PCGL?

The Pan‑Canadian Genome Library (PCGL) is a national Canadian initiative that brings together human genomic and health data from research studies into a trusted data repository. Acting as a secure library, PCGL safeguards genomic data and enables its responsible sharing, empowering researchers with the high‑quality information they need to drive discovery.

Researchers responsible for conducting studies that include genomic and clinical/phenotypic data may deposit their data with the PCGL, provided that both the study and the data deposit have been approved by their Research Ethics Board (REB). Through the PCGL, researchers can access a range of services to securely archive their data and support its responsible use and sharing, in accordance with participant consent.

Only data which is part of a research study can be submitted; for instance, individuals who have access to their genomic/clinical/phenotypic data cannot submit data on their own. 

All researchers, members of the public, and other site visitors can view summaries about the datasets in PCGL through the Researcher Portal. However, only researchers who have received approval from the Research Ethics Board of their institution and the PCGL’s Data Access Committee can access individual-level data in PCGL.

  • Secure and long-term data storage
  • Data discovery and access facilitation
  • GA4GH standards implementation and international linkages
  • Access to the PCGL via APIs to build community portals
  • Centralized Data Access Committee (DAC) (where possible)

PCGL data is stored in Secure Data 4 Health (SD4H) infrastructure, hosted in the data center under McGill University’s responsibility, located at École de Technologie Supérieure and operated by Calcul Québec (CQ). None of the data submitted to PCGL will be hosted in infrastructure located outside the borders of Canada.

McGill University, as the institution responsible for the PCGL, ensures that data stored is protected through the cybersecurity provisions and policies outlined and implemented by SecureData4Health (SD4H).

Briefly, these policies are aimed at reducing the possibility of unauthorized access and data corruption, with participant privacy protection as a core security requirement. Specific measures include a robust authentication system to access most features, as well as off-site backups of raw data, to name a few.

Data within the PCGL is governed through a Data Governance Framework that establishes clear policies for the management, stewardship, and responsible sharing of data. This framework defines roles and responsibilities related to data administration and custodianship, ensuring accountability at each stage of the data lifecycle. As part of this framework, the Data Access Committee (DAC) will oversee and approve researchers’ requests for data access.

For a complete overview of policies, processes, and responsibilities, please refer to the PCGL Data Governance Framework.

Contact us at helpdesk@genomelibrary.ca!

Yes, specialized training, including workshops, tutorials, and documentation on how to use key PCGL features, will be offered in the future. Please consult the Researcher page for additional information on training opportunities, and explore our Training & Documentation website for PCGL resources.

What is PCGL?

The Pan-Canadian Genome Library (PCGL) is a national initiative that collects and securely stores genomic and health data from research studies across Canada.

It works like a trusted digital library, keeping this sensitive data safe while allowing approved researchers to access it responsibly. By bringing this information together in one place, PCGL helps researchers find new insights and advance health discoveries.

PCGL stores genome sequence data from people who join research studies. It also stores information about their health, such as: 

  • A person’s physical traits, like their height
  • The diagnoses and treatments a person has had
  • Sociodemographic factors that might affect a person’s health, like their age and sex at birth 

PCGL does not store any personal identifiers, such as names, phone numbers, or health card numbers. 

The PCGL stores many different datasets and shares high-level summaries of them on a public website. These summaries are like the back cover of a book; they describe what the dataset contains without including any information about individual people.

Researchers can browse these summaries to find data that may help with their work. If they find something relevant, they can apply for access.

If their request is approved, researchers can use the data to support new studies. For example, they may use it to:

  • Better understand the causes of diseases
  • Identify the most effective treatments
  • Learn how people’s DNA varies from person to person

All data use is carefully controlled to protect participant privacy while supporting important health research.

The PCGL uses strong security and privacy measures to protect participant information. McGill University, which manages the PCGL, works with SecureData4Health’s secure data infrastructure to ensure these safeguards are in place. These measures help keep data secure by preventing unauthorized access and protecting against loss, damage, or misuse.

For example, only approved users can access the system through secure login methods, and data is backed up regularly in separate locations to ensure it isn’t lost. Protecting participant privacy is a key priority in how all data is handled.

These protection measures follow established security policies and standards to make sure your data is stored responsibly and securely.

Currently, data can only be added to the PCGL as part of an approved research study that is submitting data to the library. The PCGL does not accept individual submissions of genomic or health data at this time.

If you have already participated in a research study and have questions about whether your data will be submitted to the PCGL, please reach out to your study coordinator.

PCGL has a Training Catalogue for research participants and members of the public. This catalogue includes webpages, documents, videos, and more on genomics and other topics related to PCGL.