Q: How can I contribute a sample?
A: If you are a cancer patient and you are interested in being involved in this study, please discuss this with your family doctor or oncologist and tell them about this web site.
A: If you are a scientist or a not-for-profit research institute and you are interested in contributing samples or in collaborating, please contact the CBCF TB.
A: If you are interested in supporting this research through a personal financial contribution, please contact the Canadian Breast Cancer Foundation – Prairies/NWT Chapter call (780) 452-1166 or toll free 1-866-302-2223.
A: If you are an organization and you would like to support this work or to highlight it in brochures or presentations, please contact CBCF TB.
Q: How are samples and patient records handled?
A: Patient confidentiality is our highest priority. The CBCF TB has made every effort to ensure the patient records and patient samples are fully anonymized using protocols approved by the Cross Cancer Institute and University of Alberta Ethics review boards. Blood, urine and tumor samples are numbered and only information about the date of collection, tumor type, gender and age of the patient are retained. A master list linking patient histories to each sample is kept in a separate, secure site. Several levels of data encryption and data security are attached to the electronic CBCF TB database so that only those with appropriate clearance will be able to access a limited subset of data.
Q: How do patients become involved in the tumor bank program?
A: When a patient is booked for surgery to have cancerous tissue removed, the surgeon will ask if he or she would allow a sample of tissue to be entered into the CBCF tumor bank. Patients will be given an informed consent form which describes the purpose of the project, what patients can expect to happen if they participate, any potential risks and benefits of taking part, and who to contact with questions or concerns. It is stressed that taking part in CBCF TB is voluntary, and that their decision will not impact their care in any way. If a patient agrees to take part and signs the consent form, arrangements are made to retrieve and store their samples. Sometimes tissue is removed for testing before it is known that a patient has cancer. When this happens, many hospitals keep the extra tissue aside. In cases like this, tissue will not be entered into the CBCF TB database until patients have given informed consent. If a patient decides not to give consent, his or her sample will be discarded. Two extra tubes of blood (about 15 mls) are drawn with routine blood work and stored in the lab. During surgery, once the tumor is removed and the pathologist has taken the necessary samples for tests, an extra portion will be frozen in liquid nitrogen and transferred to the CBCF TB sites.
Q: Who decides what tissue samples are released for research?
A: CBCF TB has ethical and administrative approval to establish and maintain a bank of tissue, blood, and urine samples. In the future, when researchers wish to use these samples, they must first receive approval from their institution’s ethics committee. This is a group of people from different but relevant professional backgrounds who review a research protocol and ensure that it does not violate the rights and safety of study subjects. In addition, the CBCF TB director and management team will review each protocol to ensure the research is consistent with the program’s mission and standards.
Q: What if a patient changes his or her mind?
A: Participation in CBCF TB is entirely voluntary. If a patient decides to withdraw, he or she just calls the Clinical Research Nurse coordinator for CBCF TB, and informs of their decision. The patient’s sample will be discarded. If patients feel uncomfortable with any of the protocols and chose to withdraw, they may contact the research nurse and their samples will be discarded. No record of these samples will be kept. PatientPatients can be assured of complete anonymity.
Q: What if a patient only wants to participate in part of the project?
A: No problem. The CBCF TB bank includes tumor tissue, blood and urine. Patients may contribute any or all of these. In the consent, patients can indicate whether they would like their samples to be used for cancer research only, or if they consent for researchers studying other health problems (like diabetes or asthma) to access their samples.
Q: Will my surgery be more completed if I agree to have my tumor banked?
A: No – Your surgeon will remove the amount of tissue that is medically necessary. Portions for the bank will be taken from that tissue after samples have been sent to laboratory for your personal diagnosis and treatment planning. In the rare cases where taking part in this project does require that an extra sample of tissue be removed (as in some biopsies and muscle tissue banking) a specific consent will be provided.
Q: Is there any chance that my doctor will need my tumor sample for my own care?
A: Yes, occasionally tumor samples are required for further tests or treatment planning. For this reason, the CBCF TB will put a hold of 3 months on your sample. During this time, your sample will be kept frozen but will not be made available for use by researchers. If a personal use is identified during this time, we will release the sample for those purposes.
Q: Does the Canadian Breast Cancer Foundation – Alberta Research Tumor Bank focus only on breast cancer?
A: No. The Canadian Breast Cancer Foundation – AlbertaPrairies/NWT Chapter has provided the funding for this program but the bank accepts samples from all types of cancers.
Q: Why are samples such as blood and urine banked?
A: Biological specimens such as blood, urine, bone marrow, and ascites (fluid that sometimes collects in the abdomen) contain genetic information, just as tumor tissue does. These samples can be used in studies that may help researchers see how people with certain genetic make-ups respond to certain treatments. It can also explain why different people have different health problems.
Q: My donated samples may be used for genetic research – does this mean my family has to give permission too?
A: No – the decision is yours. We will not put any results of the research on your chart, so the studies done on your sample should not affect you directly. Still, we do recommend that you discuss this with your family. If any questions or concerns arise, you and your family are welcome to contact the CBCF TB offices in Calgary or Edmonton.
Q: How do I know my sample will not be used for something immoral or illegal?
A: Before any sample is released, the researcher must provide proof that a recognized Research Ethics Board has approved the study for scientific and ethical soundness. In addition, the CBCF TB Management Committee will review the proposal to ensure that the study meets with our mission to enhance the understanding, treatment, prevention, and cure of cancer.
Q: What is Genomics?
A: Genomics is the comprehensive, high-throughput study of the genome – the complete complement of all genes in a cell, tissue or organism.
Q: What is Proteomics?
A: Proteomics is the comprehensive, high-throughput study of the proteome – the complete complement of all the proteins in a cell, tissue or organism
Q: What is Metabonomics?
A: Metabonomics is the comprehensive, high-throughput study of the metabonome – the complete complement of all the small molecule metabolites used or produced by a cell, tissue or organism.
Q: What is Bioinformatics?
A: Bioinformatics is a branch of information science that is dedicated to the storage, management and analysis of genomic, proteomic and metabonomic data.