Frequently Asked Questions

About Tumour Banks

Are prospectively collected samples or remnant samples exempt from Research Ethics Board approval?

If prospectively collected specimens obtained for clinical or diagnostic purposes are to be used for research purposes, then the specimens used in future protocols must be approved by a Research Ethics Board before the specimens are used. Biological wastes and left-over specimens are included in this category.

None of these studies will qualify for exempt status, but will require either expedited or full board review. Depending on the nature of the research, the Member Tumour Bank may be required to obtain informed consent from the patients for the new use.

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Can I expect any benefits from becoming a donor?

Your donation is critical in the fight against cancer. However, for the foreseeable future, individual donors should not expect an immediate health benefit.

The expected benefits of research using tissue/blood/body fluids include the potential to learn more about what causes cancer and other diseases, how to prevent them, how to treat them, and how to cure them. Unfortunately most of this research takes years to complete. Research that is made possible by your donation may not directly help you.

Your donation is more likely to provide a benefit to persons who have cancer and other diseases in the future.

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How do I donate?

At participating institutions, potential donors are made aware of the opportunity to donate tissue and blood samples. If patients agree to become donors, their contact information is forwarded to the tumour bank and arrangements are made for an interview.

Interested patients then meet with the designated personnel, who will explain the Regional Tumour Bank program and informed consent process. A blood sample may be requested at this time and a questionnaire will be filled out. If applicable, the participating hospital contacts the Tumour Bank with the date/time of the operation.

To ensure quality, tissue is collected in a timely manner, once the pathologist has made a diagnosis decision. Tissue is frozen immediately and transported for further processing and storage. 

The choice to donate left over tissue, blood samples, and possibly other body fluids for future research is up to you. No matter what you decide to do, it will not affect your care. You may still take part in clinical treatment trials.

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How is human tissue used in the fight against cancer?

Medical research depends on the ability to study human tissue that is donated by generous individuals. Although researchers can use models of the disease such as cell lines and animal tumours to develop ideas and potential markers and therapies, at some point it becomes essential to study human tissues. So one of the best ways of understanding how a disease like cancer develops in humans is to study human tissues.

Tissue samples are used to identify bio-markers, improve treatment efficacy, develop new drug therapies and to train scientists and doctors. 

Research that uses donated tissues and data is carefully monitored and can only be carried out if it satisfies particular regulations and has approval from an ethics committee. These regulations are to ensure that the research is ethical and that donor privacy is protected.

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What is a Prospective Study?

A prospective study is a study in which the collection of tissue will occur in the future. Specifically, the human biological material is not part of the collection at the time the research proposal is submitted for approval. 

In a particular example, the tissue may be obtained specifically for the research study only after the research proposal has been granted REB approval wherein the subject is asked to undergo a procedure to obtain a specimen for research purposes.

In an alternate example, the specimen may be harvested from discarded clinical samples that will be obtained after the research is approved by the REB and used for a specific research purpose.

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What is a Retrospective Study?

A retrospective study is one in which existing human biological material (already contained within the collection of the repository) is utilized for studies that seek REB approval for proposed research. 

For example, a retrospective study is one performed on historical collections, stored pathology specimens, left over sera, or involves secondary use of tissue collected previously for another research protocol, etc.

There are pros and cons to both types of study, prospective or retrospective. However some of the advantages of retrospective studies are that the work can be done more efficiently, with less cost, and much faster. In general, retrospective studies are more common and are performed to gain the initial evidence to support the cost and effort of moving on to a prospective study.

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What is a tumour bank?

Tumour banks are facilities that are organized to collect, store and distribute samples of tumour and normal tissue for further use in fundamental and translational cancer research. The samples are generally obtained from histopathology and cytology laboratories, which process smears, biopsy and surgical specimens for diagnosis.

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What is CTRNet?

The Canadian Tumour Repository Network (CTRNet) is a network of Canada’s leading tumour banks funded by the Canadian Institutes of Health Research (CIHR) that work together to provide human tissue for cancer research.

CTRNet member banks agree to implement and abide by policies on the collection, storage and distribution of the materials and data as established by CTRNet. 

CTRNet participates in international efforts to harmonize bio-banking.

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What is the history of tumour banking in Canada?

The genesis of tumour banking in Canada emerged from workshops such as the NCIC Terry Fox sponsored workshop in 1991 (on Molecular Biology - Impact on Cancer Etiological and Therapeutic Research). These were followed by the launch of a molecular epidemiology and correlative studies' program by the NCIC to support Tumour Banks.

This led to the establishment of 5 NCIC funded Tumour Banks including the Manitoba Breast Tumour Bank (1993), the Toronto-London Soft Tissue Sarcoma Bank (1993), the London Brain Tumour Bank (1994) and the Montreal Lung Tumour Bank (1994), and the NCIC-CTG breast Tumour bank (1995). However this special NCIC program was rolled into the operating grants program and review system.

Issues soon arose with respect to the needs of other priorities of the NCIC and lack of agreement around the appropriate mechanism for the review and criteria for ongoing support of Tumour Banks. This stimulated extensive discussions including a national workshop on Tumour Banks (Toronto, 1996, sponsored by NCIC-Terry Fox- Health Canada) and an NCIC tumour bank committee (1998), and within the context of the Biologic Studies and Tumour Bank working group within the NCIC-CTG. However, despite general agreement on the merits of Tumour Bank infrastructure to support cancer research, the existence of formal grant mechanisms to support Tumour banks ended in June 2000. 

Other large tissue collections and initiatives have since emerged in Canada. Many of these other banks have been funded by institutions, or from non-Tumour bank research grants or private donation. These are believed to still be available as Tumour Banks to academic research. The design of these collections varies considerably with respect to the Tumour type or subtype target, tissue format, data collected and mandate. While many of these are referred to as Tumour Banks, they are not necessarily funded, enabled or oriented to provide case sets to external investigators. Many are also focused on single Tumour systems (often a positive factor for quality but reducing their ability to broadly support all cancer research). Many have uncertain baseline support/funding, absent or developing policies for industry support and insufficient critical mass, comprehensive data, capital or motivation to offer a substantial service.

In 1997, a National Tumour/Tissue/Data Repository was set up under the leadership of a Tumour Bank Working Group of the NCIC Clinical Trials Group. This bank collects material from patients across Canada who participate in National Cancer Clinical Trials and is supported in part by the NCIC/Canadian Cancer Society core funding to the Clinical Trials Group. The material in this bank is associated with well characterized clinical data, treatment, toxicity, and outcomes and has been established as a national resource for researchers.

In January of 2000, the FRSQ announced the creation and support of thematic networks, including RR Cancer network for tumour banking. The RRCancer supports research through bank hubs focusing on breast, ovarian and prostate cancer at the major teaching hospitals in Quebec in addition to a centralized leukemia bank.

The FRSQ Cancer Research Network has mobilized a significant number of researchers in the field of cancer who together, carry out high calibre multidisciplinary research.

The main goal of the FRSQ Cancer Research Network is to give Quebec researchers access to an important infrastructure which supports their desire to combine research activities allowing them to reach their common objectives.

The Ontario government established a new initiative to stimulate translational cancer research (Ontario Cancer Research Network) that includes development of linkage between clinical trials and Tumour Bank resources. 

The Alberta Cross Cancer Institute has established the Alberta Research Tumour Bank (ARTB) funded in part by the Canadian Breast Cancer Foundation that aims to collect approximately 20% of ~5000 cancers in the region.

At the same time the British Columbia Cancer Agency also initiated the development of a $6 million provincial TTR/Bioinformatics resource, linked to the British Columbia Cancer Information System which tracks every patient from diagnosis, therapy, follow-up and rehabilitation, in British Columbia.

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What is translational research?

Translational Research is the interactions between scientists and physicians that facilitates "translation" of molecular, cellular or genetic research findings to improvements in diagnosis, treatment or prevention of cancer.

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About Ethics and Privacy

How do CTRNet member banks protect donor information?

CTRNet member banks are governed by Research Ethics Boards, provincial privacy laws, and federal guidelines. Each member bank takes every precaution to ensure that the protocols, guidelines and laws are strictly followed.

All staff, board members and business partners sign confidentiality agreements or are bound by professional codes of conduct. Member bank staff are trained to follow proper procedures when dealing with identifying information.

Patient identity or other identifying information cannot and will not be provided. These practices, along with periodic internal reviews, ensure the confidentiality of donor medical information.

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What about the personal information on my sample?

CTRNet does not store any donors personal identifying information on its systems. An encoded unique record identifier, assigned by the member bank is used for data maintenance. Identification of the donor (should it be required and permitted by law) can only be made by the regional tumour bank serving as custodian to the donated material.

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What happens if a donor chooses to withdraw from the tumour bank program?

If a donor chooses to withdraw, the regional tumour bank will destroy all remaining samples and health records of personal identifiers. Where samples have been shipped for research, only minimal non-identifying information will be kept for scientific validation. No further samples will be shipped.

Unfortunately it is not feasible to attempt the recovery of materials that have already been shipped.

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What information about me is released to researchers?

Depending on the exact nature of the research being undertaken, researchers may request basic demographic, lifestyle, diagnostic, treatment and health outcome information. 

Before any information is released by the regional tumour bank all personal information is removed and an encoded identifier is assigned.

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What information is collected when I visit CTRNet's public website?

When you visit our web site, we only collect information that is essential for the operation and security of the web site. The web server automatically collects your Internet domain name or IP address. This information is collected so that we know how many people visit our site, the geographical region they are from, and which pages they view on our site. The collection of this information is in conformity with sections 36(1)(b) and 36(2) of The Freedom of Information and Protection of Privacy Act. The information is grouped into statistics, so individuals are not identified in statistical reports. The statistical information is kept up to six years before it is destroyed.

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What is Ethics and Law?

The law affects and regulates the standards and conduct of research involving human subjects in a variety of ways, such as: privacy, confidentiality, intellectual property, competence, and in many other areas. Human rights legislation prohibits discrimination on a variety of grounds. In addition, most documents on research ethics prohibit discrimination and recognize equal treatment as fundamental. Research Ethics Boards should also respect the spirit of the Canadian Charter of Rights and Freedoms, particularly the sections dealing with life, liberty and the security of the person as well as those involving equality and discrimination. 

This legal context for research involving human subjects is constantly evolving and varies from jurisdiction to jurisdiction. For this reason, researchers, institutions and Research Ethics Boards should have recourse to identify legal issues in the ethics review process. 

However, legal and ethical approaches to issues may lead to different conclusions. The law tends to compel obedience to behavioural norms. Ethics aim to promote high standards of behaviour through an awareness of values, which may develop with practice and which may have to accommodate choice and liability. Further, though ethical approaches cannot pre-empt the application of the law, they may well affect its future development or deal with situations beyond the scope of the law.

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What is Ethics?

Ethics is the branch of philosophy that deals with distinctions between right and wrong and with the moral consequences of human actions. Examples of ethical issues that arise in medical practice and research include informed consent, confidentiality, respect for human rights, and scientific integrity.

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What is privacy?

To the Privacy Commissioner of Canada, privacy means: 

The right to control access to personal information about ones self. The right to privacy means that individuals get to decide what and how much information to give up, to whom it is given, and for what uses.

For CTRNet and its member banks, privacy involves the policies that determine what information is gathered, how it is used, how it is stored and protected and how donors are informed and involved in this process. 

CTRNet and its member tumour banks put the priority on privacy protection and follow strict procedures to ensure that donors are informed of how their information and donated materials may be used in ethically approved research.

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What is respect for human dignity?

The cardinal principle of modern research ethics is respect for human dignity. This principle aspires to protect the multiple and interdependent interests of the person; including bodily, psychological and cultural integrity. In certain situations, conflicts may arise from application of these principles in isolation from one other. Researchers and Research Ethics Boards must carefully weigh all the principles and circumstances involved to reach a reasoned and defensible conclusion.

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What is the Personal Health Information Act?

The Personal Health Information Act became law in Canada in December 1997 and was introduced to empower you as a health service recipient. 
It accomplishes this by granting you two primary rights: 

- The Right to Access your personal health information.
- The Right to have your personal health information kept Private.

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What research requires ethics review?

All research that involves human tissue requires ethics review and approval by a Research Ethics Board in accordance with the Tri-Council Policy Statement. This includes research involving human remains, cadavers, tissues, biological fluids, embryos or fetuses. The following types of research are excluded from ethics review: research about a living individual involved in the public arena, or about an artist, based exclusively on publicly available information, documents, records, works, performances, archival materials or third-party interviews, is not required to undergo ethics review. 

Quality assurance studies, performance reviews or testing within normal educational requirements is not subject to Research Ethics Board review.

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About Research Materials

Do you serve investigators outside of Canada?

CTRNet expects that the majority of research facilitated through its member tissue banks will be in Canada. However, emphasis is on ensuring that the quality of research using collected materials is of the best possible caliber. If you are outside Canada and interested in obtaining materials from CTRNet member banks, please contact us.

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