FAQ

Study Details

What do I agree to if I decide to participate in the Project?
If you volunteer to take part, you will be asked to:

Answer questionnaires about your health and lifestyle, as well as your family and personal medical history; and take some simple physical measures (height, weight, waist and hip circumference)
If you attend a BC Generations Project assessment centre, baseline body measurements, such as bone density and percent body fat, will be taken
Allow us confidential access to your health records
Allow us to re-contact you from time to time for follow-up research. This may include asking you for further health information, or to provide blood and urine samples
Allow storage of your samples and health-related information in a coded form which does not identify individuals.

What kind of questions will be asked?
We will be asking primarily about your health and lifestyle, including family and personal medical history, occupation and residential information, diet, physical activity, smoking, drinking, and other habits.
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How often will I have to provide information?
To take part in the Project, you are only required to answer a baseline questionnaire about your health and lifestyle. You may also choose to book an appointment at a BC Generations Project assessment centre, where further baseline body measurements can be taken, such as bone density and percent body fat.

When you join, we will also ask your permission to contact you again in the future. At that time, we may ask you for further health information, or to provide blood and urine samples. You are, of course, free to accept or decline as you prefer.
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Will I need to regularly update you with any changes to my health, medications, etc. in the future?
We do not require you to update changes to your health or medications in the future. We will primarily be collecting the key health updates that we require through linkage with administrative databases. However, you may be contacted in the future to provide information needed to answer a specific research question that cannot be obtained by linkage.
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Will I need to inform you if I move or change my email address?
Yes, we would greatly appreciate it. You can call us at 1-877-675-8221 or by email at bcgenerationsproject@bccrc.ca.
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What are you going to do with results?
Information gathered from the BC Generations Project (not including personal identifiers like name or address) will be used by a variety of researchers to study the causes of cancer and other diseases. Results from these studies will be critical to guide future disease prevention programs.
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Can I get a copy of the Project results?
As the information we collect on participants will be used for many years and for a variety of research studies, we cannot provide you with a copy of the Project results. However, you will receive a regular newsletter which will update you on the progress of BC Generations Project. You can also visit our website (www.bcgenerationsproject.ca) or find us on Facebook or Twitter at any time to get information on the progress of the Project.
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How will I (or others) benefit from the Project?
Participation in the BC Generations Project will not provide you with any direct individual benefits. The benefits of this research are likely to help future generations and contribute to a better understanding about the causes of cancer and the factors that influence health and illness among Canadians.
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Participation

I’m not in the 35-69 age group. Can I still take part in the Project?
Unfortunately we are only inviting people between the ages of 35 and 69 years to take part in the Project at this time.
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I don’t live in Vancouver. Can I still participate in the Project?
Absolutely. You can participate from anywhere in British Columbia.
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I am pregnant. Can I still take part?
Yes, you can.
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I have been diagnosed with cancer (or other condition/disease), so can I still be in your Project?
Yes, we want all types of people to participate. It does not matter whether you are healthy or have been diagnosed with an illness.
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I am overweight/smoke cigarettes/drink alcohol/am a drug addict/take prescribed drugs – do you still want me to take part?
Yes, of course. We are studying people’s lifestyle and habits and will ask you questions about these. If any of the questions make you feel uncomfortable, you may choose “prefer not to answer” and move on to the next question. We will not make any judgment about any aspect of your health or lifestyle, or offer advice.
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I am adopted and don’t know anything about my birth family. Can I still take part?
Yes, this does not matter at all for the study. There is still a lot of information you can give us that will be extremely useful for our research.
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Online Questionnaire

I prefer not to use the online option to join the Project. Is there another way for me to take part?
If you prefer, we can send a paper participant package for you to complete by hand and return to us. Please contact the BC Generations Project Call Centre at 1-877-675-8221 to request a participant package to be mailed to you.
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Is your online questionnaire secure?
Participant confidentiality and security are very important to every aspect of the BC Generations Project. Information collected from participants using web-based tools will be transferred over a secure network to highly secure, multiply redundant and firewall-protected servers. All data will be saved in password-protected files. This protection exists at all points between your web browser and the database files where your data is stored. All physical systems are hosted at a secure data centre in the BC Cancer Agency Research Centre. Only authorized staff will have access to the study data.
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Will you track my IP address?
No. The BC Generations Project does not monitor or record this information.
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How do I register to take the online questionnaire?
You can get started here.

First, you will complete an online form that asks for your name, email address, age, sex and postal code. You will also be asked to provide a password that you will use to access the secure website, and the answer to a security question. Once your information is submitted and verified for age and BC residency, you will be directed to your secure home page.

Once you have registered, you will have access to a secure home page which will guide you through all the steps to complete the questionnaire.

Can I change the email or password that I registered as my log in?
The email address you provide to us serves as your user ID. This ID is a permanent record and cannot be changed, even if you change your email address later on. However, you are free to change your password at any time. You can do this by logging in to your home page and following the “Change Password” link.
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My spouse and I share the same email address. Is this a problem?
Our online system requires that each participant is linked to a unique email address. This is to protect the privacy, confidentiality, and security of participant information. You will each need a separate email address to join online.
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Do I have to enter all my information in one session?
No, you don’t. The system saves each page as you complete it. You can leave the questionnaire at any time and return to it by logging in again using your ID and password. Completing the entire online package will take you about 55 minutes.
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I can’t log in to my home page – it will not accept my password. What can I do?
Confirm the spelling of your email address and password before trying to log in again. Please note that your our system is case sensitive. For security reasons, our system will lock you out for 24 hours after five unsuccessful login attempts. You can try again the next day.

If you have forgotten your password, you can use the Forgot Password option on the Login screen to receive an email message to help you change your password.

I’m trying to register but the system won’t accept my postal code. What can I do?
Make sure you’re entering a space, and not a dash (-), in the middle of the postal code. Also, check that you have not entered the letter “o” instead of the number “0”.
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I’m having trouble with my consent form – I can’t enter any information on the PDF document. What can I do?
Clicking on the Consent Form link in the centre of your screen will take you to the online form for filling out. The printable PDF version of the form (off to the left) appears as your record of consent.
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The questionnaire is loading really slowly. Is that normal?
The questionnaire should load fairly quickly on your screen as you move from page to page. If traffic is particularly heavy on our website, you may notice a slight delay. The loading speed may also be affected by limitations in your computer or a slow internet connection. If the questionnaire is loading slowly, first close all other programs on your computer. If the problem persists, please contact the BC Generations Project Call Centre at 1-877-675-8221 for further assistance on completing the questionnaire.
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Something went wrong while I was completing the questionnaire (system froze/ logged me out/ my power went out) and I’m afraid I’ve lost my data. What should I do?
Don’t worry! The system will save all of the answers you have provided up to your last completed page of the questionnaire. Return to your log in page, enter your user ID and password, and resume where you last left off. If you can’t log in to the questionnaire again, please contact the BC Generations Project Call Centre at 1-877-675-8221 for further assistance.
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The questionnaire will not accept the response I enter and it’s stuck. What should I do?
If you cannot move past a certain page, you most likely have an error message on that page that is preventing you from moving on. Scroll through the page and look for any error messages that appear in red.
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On a previous page, I made a mistake in the information I provided. Can I go back and fix it?
As long as you haven’t reached the end of the questionnaire and submitted it, you can go back and change your answers. To move through the pages, use the “Next” or “Previous” buttons in the bottom corners of the questionnaire.
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The questionnaire asks me to enter the DIN (Drug ID number) from my prescription. The questionnaire won’t accept the number I’m providing. What should I do?
This field asks for an 8 digit DIN number. Please make sure that you do not enter the prescription number, which is different than the DIN. If your DIN only has 6 digits, please enter 0’s in front of the number. If you’re still having trouble, you can skip this question and move on, but please make sure you’ve provided the medication’s full name in the previous field.
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I’m not sure if I submitted the questionnaire properly at the end. How do I know if you received it?
Your home page shows the status of your questionnaire. If your questionnaire shows as “Completed”, you have successfully submitted it. If it is listed as “In progress”, please click on the link to your questionnaire and then click “submit” at the end of the questionnaire.
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After I’ve submitted my questionnaire can I go back and make any changes, or can you change that information for me?
Once you have submitted the questionnaire, the information in this document becomes locked and cannot be altered. Before you submit, you can review your answers by moving through the pages using the “Next” or “Previous” buttons at the bottom of the questionnaire.

If you have pressed the submit button, then realize you forgot to add or correct information, please email the information to bcgenerationsproject@bccrc.ca, along with your full name, date of birth and phone number.

If you move or change your email address, you can log in to your home page and update your contact information with the BC Generations Project by following Account<Update Personal Info. You can then return to your home page or log out.

Consent & Withdrawal

What happens if I ask to join the Project but change my mind later on?
You will not have agreed to take part in the study until you provide us with your electronic or written consent. You are free to withdraw at any time from the study without giving us a reason. You are welcome to call us and discuss your concerns at any time, and the various options you have for withdrawal.
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Who do I tell if I decide to withdraw?
You can either call us at 1-877-675-8221 (toll free) or contact us by email at bcgenerationsproject@bccrc.ca.
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Can my relatives withdraw consent after my death?
No. Only you can give consent and only you can withdraw it. This is because it is important that researchers have access to information on people who have died to help them understand disease.
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I object to the use of animals in research/embryonic stem cell research. Can you specify what type of research my samples will be used for?
No, we can’t specify which type of research will be conducted on your samples. All research projects using BC Generations Project samples will have to be approved by the a specially constituted panel of scientists and doctors set up to monitor BC Generations Project, and by the University of British Columbia Research Ethics Committee. Our aim is to help in the fight against disease. Although BC Generations Project will not be carrying out any tests involving animals, information contained within BC Generations Project may someday be used to develop new drugs. Currently, new drugs have to be tested on animals by law. If you have strong objections to this type of research, we would recommend that you do not take part in BC Generations Project.
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Procedures

Do I have to take ALL the measurements, or answer ALL the questions?
You do not have to answer any question, or take any measurement, that makes you uncomfortable. If there are questions you are not comfortable about answering, you can always choose “prefer not to answer”. Obviously, the more answers you can give us, the more useful your information will be.
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How do you ask the questions?
We have a questionnaire that you will complete. We encourage you to use our online option to answer questions on a secure web page. Or, we can send you a paper questionnaire that you will complete and return to us by mail.
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How do I provide my blood and urine samples?
Ultimately, the BC Generations Project intends to collect blood and urine samples from all its study members. However, not everyone is asked to provide a sample when they first join.

When we ask you to provide a sample, you will receive a bar-coded requisition form for LifeLabs medical laboratories, with lab locations and hours of operation listed on the reverse side. Simply drop by the lab closest to you, where staff will take your blood and urine samples. No appointment is needed.
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How much blood will you take?
Around 36 ml, which is less than 3 tablespoons. This will be put into six different small tubes, because each will be stored separately and will be used for measuring different things in future research.
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Do I need to fast before providing my blood and urine samples?
No. You can eat and drink as you normally would.
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Will you screen my samples for cancer?
No, we do not carry out any kind of health screening. If you are worried about any of these conditions, you should see your own family doctor to discuss them.
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Will you tell me what genetic information you find about me?
No. We will not be able to tell individual participants the results of any tests that may be done on their samples in the future. We shall, however, make available for participants the findings from all research projects that use this resource.
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Will you give me the results of my urine and blood tests?
No. We will not conduct tests on the blood or urine samples for many years. If you have any worries about your health, you should discuss these with your own family doctor, who can arrange any tests that he or she thinks are necessary. During the next 20-30 years, samples will gradually be analyzed as the BC Generations Project resource becomes available for medical research of all kinds, both in Canada and around the world. As this may be far in the future, and researchers will be analyzing anonymized samples, we will be unable to inform you of any findings.
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Confidentiality

I don’t mind doing the Project, but I don’t want my doctor/family member to know. Will you agree not to tell him/her?
No one other than yourself knows about your invitation to the Project, or the information collected about you if you choose to participate. You can keep your participation confidential from your physician and anyone else you so choose.
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Can insurance companies, employers, or my relatives find out about the results of research on samples?
No, they cannot. Your samples and information are stored in a de-identified fashion – that means any information that can identify you, such as your name, address, or date of birth, is taken off your data and samples and stored separately. We will only grant access to this de-identified data for ethically and scientifically approved research into the causes and treatment of disease.
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Will drug companies be able to use my information?
Yes. It is important that drug companies can access the information in order to research potential new drugs and treatments. All potential users of the BC Generations Project resource, whether employed by universities, government, charities or commercial companies, will have access only to anonymous information (that is, they will not have information that identifies participants) and will be held to the same scientific and ethical standards.
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How can you guarantee confidentiality?
The security and confidentiality of your data are our top priorities. We operate stringent security measures, which include sophisticated computer controls and building access systems. The main methods we use to protect your confidentiality are:

All your information is stored de-identified – that means any information which can identify you, such as your name, address, or date of birth, is taken off your data and stored separately.
Information is encrypted. We do need to be able to identify your information and any samples you have provided so that we can track your medical records, contact you again or destroy your samples if you withdraw. We do this by using multiple codes. Only those BC Generations Project staff with access to the code will be able to connect you with your information and samples.
Access is kept to a minimum. Very few staff has access to the key code. The computers which hold your information are protected by industry strength firewalls.
All research information is confidential. Your name will never appear on the questionnaire or in any report. All information will be anonymized before it is used for any research studies.

How will you access my medical records?
If you consent to participate, we will access health information from a number of sources such as death records, cancer registration, hospital procedures and other health-related records as they evolve over time. This access is strictly controlled and we do not see detailed medical records, such as those kept by your doctor.
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What happens to my information if I become seriously ill or die?
Once you have given us your consent, we will continue to use your information up to and after your death, unless you withdraw from BC Generations Project. It is important that researchers have access to information on people who have died to help them understand disease progression.
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