The BC Generations Project collects, uses, discloses, and retains personal information in accordance with the BC Freedom of Information and Protection of Privacy Act (FIPPA), and is subject to the independent oversight of the Office of the BC Information and Privacy Commissioner.
The information below contains a brief overview of the BC Generations Project’s data security and access protocols. For more detailed information, read the Privacy Impact Assessment.
Participant Information
After participants provide their information and biological samples to the BC Generations Project, their data is anonymized. This means that any information that could identify them (name, address, etc.) is removed from the data and replaced with a unique study identification number.
Personal information of cohort participants is stored in secure electronic form in a dedicated server at the assessment centre and transferred to the BC Cancer Agency daily in password protected and encrypted files. An electronic key linking participant name, address, and phone number with the unique study identification number, is stored in an encrypted form in a separate password protected file on a different server. Monthly, this key file is transferred to a separate zip drive, which is kept in a locked safe within the BC Cancer Agency.
Linkages
The BC Generations Project intends to link participant information with health and vital statistics data that is routinely collected for research and statistical purposes. This information will be provided through linkages with the Ministry of Health Services, the Vital Statistics Agency, and the BC Cancer Registry (within the BC Cancer Agency). Examples of such information would include records of physician visits, hospital admissions, cancer diagnoses, deaths, etc. Summary information is provided confidentially in a coded format that does not reveal participants’ personal health number or name. We will not have access to patient records in doctors’ offices.
Data Access
The BC Generations Project expects to receive requests from Canadian and overseas scientists and international collaborators to use coded information or samples. All access will be subject to the strictest scientific and ethical scrutiny and independent oversight. Every health research project that uses data or samples from the BC Generations Project must obtain the approval of a properly constituted Research Ethics Board before that new research is conducted. A Research Ethics Board oversees research projects that involve humans (or information or material collected from humans) for the purpose of research, to ensure that the research proposed will be carried out according to the highest ethical and scientific standards.
No information will ever be disclosed to others, such as insurance companies, family members or employers.
