The Pan-Canadian Genome Library (PCGL) respects the rights of Indigenous Peoples in Canada (First Nations, Inuit and Métis) to free, prior, and informed consent, as well as to self-determination and control of their own data. In accordance, the PCGL and the Silent Genomes Project Indigenous Background Variant Library (IBVL) have partnered to provide Indigenous individuals and communities participating in research with the option to have their data held under Indigenous protection, governance, and oversight. Together, they developed a Consent Template to Support Indigenous Data Sovereignty that is now available for use by the Canadian Precision Health Initiative (CPHI) projects, as well as any other research projects planning to submit data to the PCGL. This template has been developed to support Indigenous participants in making informed and autonomous decisions about whether they would like to be included in an indigenous-governed genomic database (i.e. the Silent Genomes Project IBVL) and/or the PCGL.
While the PCGL and IBVL are connected, they remain distinct, separate databases, with no data sharing occurring between them. The consent template provides background on PCGL and the IBVL, the relationship between the two, information on the IBVL governance structure, and the consent options for Indigenous participants taking part in CPHI or other research projects.
The intention with this consent template is to support respectful, transparent, and community-informed consent processes across projects. We encourage all research teams, including CPHI teams, who are working with Indigenous participants and plan to submit data to the PCGL to review and incorporate this template into their study materials.
