- What is a tumor bank?
Tumor banks are facilities that are organized to collect, store and distribute samples of tumor 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.
- How is human tissue used in the fight against cancer?
Human tissue donated through a RR-CANCER-BTD member bank may be used for basic, translational and epidemiological research. We invite you to consult this web site to better understand the implications of donating your tissue in the fight against cancer.
- What happens if a donor chooses to withdraw?
If a donor chooses withdraw, the regional tumor bank will be destroy all remaining samples, health records and personal identifiers. Where samples have been shipped for research 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 already shipped.
- What research requires ethics review?
All research that involves human tissue requires review and approval by an Regional Ethics Board (REB) in accordance with the Tri-Council Policy statement, before the research is started: Tri-Council Policy Statement: Ethical Conduct for Research Involving Humans
- 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.
- What is a prospective study? What is a retrospective study?
Prospective study: a study in which the collection of tissue will occur« in the future». In other words the biological specimens is not «on the shelf» when approval for the research under review is requested. This may refer to tissue that will be obtained specifically for research purposes after the research protocol has been approved by the Research Ethics Board (REB) wherein the subject is asked to undergo a procedure to obtain a specimen for research purposes and to specimens to be collected from discarded clinical samples that will be obtained after the research is approved by REB.
Retrospective study: Retrospective research studies are studies that utilize existing tissue that has already been collected when the REB request for approval is made. This may refer to tissue collected for clinical indications and then stored (i.e. pathology specimens, left over sera, etc) or a secondary use of tissue collected previously for another research protocol (i.e. material in a tissue bank)
Source: Wayne State University
- 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
- What is the relation between ethics and laws?
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 ethic prohibit discrimination and recognize equal treatments as fundamental, REBs 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 REBs should have recourse to expertise 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 to err. Further, though ethical approaches cannot preempt the application of the law, they may affect its future development or deal with situations beyond the scope of the law
- Can I expect any benefits from becoming a donor?
Your donation is critical in the fight against cancer, however, for the foreseeable future, individual, individual donours 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 may be done with your donation may not help you. All members of the network offer donors the option to request to be contacted if a significant scientific discovery led to clinically meaningful benefits to the donor. The publications of discoveries made from donated samples can be found on our website news section, recent publications. Your donation is more likely to provide a benefit to persons who have cancer and other diseases in the future.
- What is respect for human dignity?
The cardinal principle of modern research ethics is respect for human dignity. This principle aspires to protecting the multiple and interdependent interests of the person, from bodily to psychological to cultural integrity In certain situations, conflicts may arise from application of these principles in isolation from one other. Researchers and REBs must carefully weigh all the principles and circumstances involved to reach a reasoned and defensible conclusion.
- What is privacy?
To the Privacy Commissioner of Canada, privacy means: "…the right to control access to one’s person and information about one’s 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 RRCancer and its member banks, privacy involves the policies that determine what information is gathered, how it is stored and protected and how donors are informed and involved in this process.
RRCancer and its member tumour banks put the priority on privacy protection and follow strict procedures to ensure that donor’s are informed of how their information and donated materials may be used in ethically approved research.
- What is an ethics review?
An ethics review is the "process by which principles of ethics are applied to research involving human subjects". A completed and approved Ethics Reviews by an approved Regional Ethics Boards (REB) is required before any materials can be shipped through member partners.
All researchers must complete and submit the relevant protocol form for ethics approval to the appropriate ethics review body. Research that is subject to ethics review and that is not approved may not be undertaken.
- What information comes with the specimen?
The information that comes with the specimen includes the age and sex of the patient, the diagnostic of the surgical pathology and the diagnostic of the quality control tissues that have been sent to the research.
- What about the personal information associated with my sample?
Once the sample has been obtained by the RRCancer member bank and the appropriate health information has been collected from you and your healthcare providers, the sample will be given a code number so that it is no longer identified by your name. All of your health information will also be coded to make it anonymous All data remains anonymous while it is stored and when it is used. No identifying information is available to those whomaywork with the data and tissue within or outside of tumour bank.
- What personal information is released to researchers?
When research data is made available to approved researchers, it is anonymized: that is, it does not contain information that can be used to identify you and no individual researcher will ever be able to contact you. The reference between your name and the codes used to anonymize your samples and information will be kept secure and only made available to the director of the RRCancer. By this mechanism we are able to identify you in the event that we need to contact you and inform you about findings from our studies having a possible medical benefit for you. This mechanism also allows us to withdraw all your personal information from the database and identify your samples for destruction should you wish to rescind your consent.
- How do I become a donor?
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 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 datetime 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 poddibly 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 treatments trials.
- How the member bank protect the information of the donor?
RRCancer members are governed by REB, 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 professional conduct codes. Member bank staff are trained to follow proper procedures when dealing with identifying information. Patient identify or other identifying information cannot and will not be provided. These practices, along with periodic internal reviews, ensure the confidentiality of donor medical information.
- What is the database and tissue bank of the FRSQ cancer research network (RRCancer-BTD)?
The database and the tissue bank of the FRSQ cancer research network was created to allow rapid access to biological samples and their clinical data. It is spread out over many hospital institutions (in Montreal, Quebec and Sherbrooke). The members of the RRCancer-BTD supply normal, benign and malignant samples from routine surgeries and blood tests.Blood and tissue samples are collected by the provincial biobanks on a regular basis and are coded, classified and stored. The samples can be supplied to a researcher either fresh ou frozen or blocks of paraffin or on slices. The sharing of information and biological material is managed according to ethical rules and contributes to increasing the value of research in Quebec.