The BC Generations Project respects the privacy of our participants. The project follows all national and provincial guidelines regarding research ethics and confidentiality, and all our systems and procedures are designed with confidentiality and security in mind.
Below is a listing of the BC Generations Project’s systems and procedures related to participant privacy. For more comprehensive descriptions, please read Project Details.
Project Governance – a number of independent bodies oversee the BC Generations Project and its activities. These include the Office of the Information and Privacy Commissioner of BC, the BC Ministry of Health, the Governance Council of the Canadian Partnership For Tomorrow, and the University of British Columbia/ BC Cancer Agency Research Ethics Board.
Recruitment – The BC Generations Project is randomly contacting BC residents directly through the mail, using lists provided by commercial directories. We have no access to the health information of the people we contact.
Safeguarding Participant Information – All information and biological samples provided by participants to the BC Generations Project are stored in coded form, with no identifying information such as name, address, or personal health number. The BC Generations Project uses sophisticated and stringent methods to safeguard data and control electronic and physical access to information. Access to information is restricted to research and audit purposes only.
Access to Other Health Information – Participant data is linked to past and future health and vital statistics data that is routinely collected for research and statistical purposes. This summary information is provided confidentially and does not reveal your personal health number or name. We do not have access to your medical records in your doctor’s office.
Future Contact – The BC Generations Project may contact participants in the future to request additional information or samples. This would require prior approval from a Research Ethics Board, and participation is entirely optional.
Participants are asked to provide contact information for a close friend or relative, so the BC Generations Project can reach them if they move. No personal or medical information about participants is shared, other than the fact that they are participating in a research project.