From October 2009 to March 2013, the BC Generations Project actively recruited participants through public outreach activities. Our recruitment methods included commercial mail and email directories, word of mouth referrals, brochure distribution, and media awareness campaigns. During this time, nearly 30,000 British Columbians signed up to participate.
Data security and access
Protecting the privacy and confidentiality of our participants is of the utmost importance. The BC Generations Project has stringent procedures to ensure the security of the information and samples provided to us.
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.
After participants provide their information and any biological samples to the BC Generations Project, their data and samples are de-identified. 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.
De-identified data and samples are stored at secure facilities in British Columbia, Ontario and Quebec. The data and samples stored at these facilities remain under the jurisdiction of the BC Cancer Agency at all times.
The BC Generations dataset is enriched on an ongoing basis through linkages to other health and vital statistics data. This information is linked and stored at Population Data BC, a provincial health research resource for secure data storage and linkage. Researchers who want access to linked data on participants apply through Population Data BC. Medical records held in doctors’ offices are not accessible to the BC Generations Project nor to Population Data BC.
Data and sample access
The BC Generations Project welcomes requests from Canadian and international researchers to use our de-identified information or samples for approved research into the causes of cancer and chronic disease.
All access is subject to scientific and ethical review, including approval by a legitimate Research Ethics Board. 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. All access is also reviewed by the BC Generations Project Access Committee, which ensures the scientific rigour of the research and that proper legal and privacy standards are maintained.
Ethics and governance
The BC Generations Project follows all national and provincial guidelines regarding research ethics and confidentiality, and all our systems and procedures maintain the highest confidentiality and security standards. Above all, we respect the privacy of our participants.
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 University of British Columbia/ BC Cancer Agency Research Ethics Board