We know that sharing your health and genetic information is a big decision. Protecting your privacy is at the heart of everything we do.
How Your Data Is Protected
- De-identified: Your name and personal details are removed before your information is used in the study.
- Secure storage: Data is stored in trusted systems that meet the highest standards of privacy and security in Canada.
- Limited access: Only approved researchers who meet strict requirements can access the data, and always for health research purposes only.
Oversight and Ethics
- MOSAIC is reviewed and approved by research ethics boards to make sure your information is handled responsibly. The UBC Clinical Research Ethics Board has reviewed and approved this study (Study number H24-03687).
- The Patient Partner Council and Indigenous Advisory Panel play an active role in guiding how data is used, ensuring it respects cultural values and community priorities.
- All staff will undergo training in TCPS 2: Core, CARE (Collective Benefit, Authority to Control, Responsibility, Ethics), OCAP®, implicit bias, cultural safety, and anti-racism, including Indigenous Health Research Foundations training.
