Frequently Asked Questions about the TTR
WHAT IS the Tumour Tissue Repository (TTR) biobank?
The TTR is a tumour biobank that collects & stores tissue, blood and clinical information from patients receiving medical treatment for a tumour that agree to participate in the biobank. High quality samples and data that have been de-identified are provided to cancer researchers.
WHO BENEFITS from participation in the TTR?
We all benefit from biobanks. The information and knowledge generated from researchers using samples from biobanks, such as the TTR, helps to further health research.
WHO IS funding the TTR?
The main funder for the TTR is Provincial Health Services Authority (PHSA), BC Cancer.
A small amount of money is generated by charging researchers who access biospecimens and data.
WHO HAS reviewed and approved the TTR?
The UBC BC Cancer Research Ethics Board has approved the TTR operations. The TTR provides an operations report every year to the UBC BC Cancer Research Ethics Board.
WHAT DO researchers hope to learn?
Researchers are working towards improving knowledge about cancer. They are looking for new ways to detect, treat and prevent cancers.
WHO IS asked to volunteer to contribute samples and health information to the TTR?
All patients with a cancer diagnosis.
HOW IS a patient referred to participate in the TTR?
If a patient is having a medical procedure related to a cancer or a possible cancer tumour they can be referred by a medical professional or they can self-refer.
WHAT IF someone is referred and decide they don’t want to participate in the TTR?
Participating in the TTR is voluntary. A decision not to participate does not change anything about clinical care.
HOW LONG are tissue samples stored for?
Samples in the TTR will be stored indefinitely until they are all used up by researchers.
HOW MUCH does it cost to participate in the TTR?
There is no cost to participate in the TTR.
WHAT WOULD someone have to do to participate in the TTR?
Participating in the TTR requires that the potential participant signs an informed consent form. A participant may choose to donate an optional blood sample.
WHO CHOOSES the tissues that goes to the TTR and how much extra is taken during procedures or surgery?
Participating in the TTR does not change anything about a person’s medical care – no extra tissue is removed at the time of the medical procedure.
The tissue that is removed during the medical procedure is used for diagnostic purposes and stored by the Department of Pathology for future care and diagnosis.
Tissue that is not used for these purposes is usually discarded and the TTR would collect from this tissue.
A pathologist makes the decision about what tissue is released to the TTR and ensures that what is released will not affect clinical care.
WOULD SOMEONE have to travel to the TTR at the BC Cancer-Victoria Centre to participate?
No. The informed consent discussion may be over the phone or a team member may meet them at a hospital (in Victoria) appointment. A TTR member is also able to meet them at the BC Cancer–Victoria Centre if that is best for them.
WOULD PARTICIPATING in the TTR mean lots of phone calls?
No. On the signature page of the consent form the participants are able to choose the type of further contact that they would like.
WOULD A participant receive any research results?
No. Information about individual samples will not be provided to the participant, their family members or health care providers.
WOULD A participant receive any incidental findings?
If a participant chooses to hear about incidental findings the TTR will follow their plan to deal with potential findings that involves discussion with the REB and their physicians.
WHAT ARE the physical risks of participating in the TTR?
There are no risks related to tissue collection as the TTR receives tissue from clinical procedures – no extra tissue is being collected.
The TTR sometimes collects optional blood samples. Whenever possible these optional samples are collected at the same time clinical bloodwork is already being done.
HOW WOULD tissue samples and/or clinical data be shared with researchers?
Only de-identified data and coded tissue samples are transferred outside the TTR.
De-identified data is transferred in electronic form and coded tissue samples are sent by courier.
HOW WOULD privacy be protected?
The TTR makes every effort to protect the participant’s privacy and confidentiality. Federal and provincial privacy laws outline safeguards for privacy, security and authorized access.
We will remove the name and any information that could identify a participant from their samples and information.
Only de-identified data will be shared with researchers.
Tissue samples are kept in a locked laboratory and health information/data is kept on secure computers.
All TTR staff have had training in privacy and confidentiality.
HOW MUCH time will a person have to make a decision about participating in the TTR?
A person may take as much time as they need to make a decision.
A decision can be made before or after a medical procedure.
WHAT HAPPENS if a person volunteers to participate in the TTR but changes their mind at a later date?
Participating in research is voluntary and anyone may change their mind at any time about participating.
WHO SHOULD someone contact if you have questions?
If someone has questions about the TTR:
TTR Staff Member
250-519-5713 or toll-free 1-866-898-2840
If someone wants to discuss their rights as a research participant:
BC Cancer Research Ethics Board
604-877-6284 or firstname.lastname@example.org
If someone wants information about privacy and privacy practices:
BC Office of the Information and Privacy Commissioner
Callers outside Victoria can contact the office toll-free by calling Enquiry BC and requesting a transfer to (250) 387-5629.
Vancouver: (604) 660-2421
Elsewhere in BC: (800) 663-7867