FAQ

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 clinic, 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 provide information and samples once. However, we will ask your permission to contact you again in the future to invite you for a visit or to fill in an updated questionnaire. You are, of course, free to accept or decline as you prefer.
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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) 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?
Health benefits from this research are likely to help future generations, but your participation in BCGP is not expected to provide you with any direct individual benefits or personal health results beyond those offered at your initial visit.
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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. As long as you are well enough to visit a LifeLabs location in your community to provide blood and urine samples, we would like you to take part.
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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?
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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Consent & Withdrawal

What happens if I ask for a participant package and change my mind later on?
You will not have agreed to take part in the study until you sign the consent form and return it to us. 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 will 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?
If you participate in a BC Generations Project clinic or are selected 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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I don’t like having blood taken. Can I take part, but not give a blood sample?
Our research does require a blood sample from each participant. If you are certain that you don’t want a blood sample taken, we will, unfortunately, be unable to accept you as a study participant.
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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 if you 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:

Your samples and information are stored de-identified – 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.
Information is encrypted. We do need to be able to identify your samples and information 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 that 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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