The success of the BC Generations Project depends on the generosity of BC residents, aged 40-69, who are willing to give a small amount of their time to contribute to disease prevention efforts in the future. While the Project is unlikely to benefit participants directly, their children and grandchildren may benefit from the outcomes of thousands of research studies that will draw on this massive collection of high-quality, highly-secure health data.
Recruitment
We use a number of methods to raise awareness and recruit eligible BC residents for the BC Generations Project. These include word of mouth (through participants, large employers, and BC physicians), brochure distribution, and media stories.
The BC Generations Project is also randomly contacting BC residents directly through the mail, using commercial directories. These directories comply with all the Canadian consumer privacy regulations, including the federal Personal Information Protection and Electronic Document Act, and the BC Freedom of Information and Protection of Privacy Act.
The information supplied through these directories consists of names, addresses and telephone numbers. We have no access to any additional information, including medical records, of anyone we contact.
Participation
Potential participants are invited to contact the BC Generations Project and request a participant package. The package contains detailed information about the Project, questionnaires to send back by mail, a measuring tape, and a requisition form and instructions for providing blood and urine samples at a LifeLabs location in the participant’s community. The package also includes an informed consent form, which must be signed and returned to the Project in the envelope provided.
Participation consists of three parts:
- Questionnaires – Participants answer questions about their health and lifestyle, including occupation and residential information, diet, physical activity, smoking, drinking, and other habits. They also complete a questionnaire about their family and personal medical history.
- Physical measurements – Participants record their height and their waist and hip measurements using the measuring tape provided in their participant package. They also record their weight.
- Samples – Participants visit a LifeLabs location in their community to provide a blood sample and a urine sample. The samples are then sent to the Project for storage and future use.
Future Contact
As scientific knowledge advances in disease risk factors and prevention, the BC Generations Project may contact certain groups of participants and request that they provide further samples or information. This re-contact would require approval by the University of British Columbia/ BC Cancer Agency Research Ethics Board, an independent body that oversees this project. Any future involvement is entirely optional.
People who participate in the BC Generations Project can also expect to receive, by mail or email, annual updates that let them know how the Project is progressing, and provide the latest scientific information and findings that emerge from this initiative.
To help us maintain contact with participants over time, we ask participants to provide the name, address and phone number of a close personal friend or family member. This way, we can locate participants even if they move. This is standard practice in long-term studies, and no personal or medical information about participants is shared, other than the fact that they are participating in a research project.
