The donation of tissue, blood and health information to the Victorian Cancer Biobank is a gift and we are very grateful to all patients who generously support our work.
What is the Victorian Cancer Biobank (VCB)?
The VCB is a collection of blood and tissue samples that are taken from healthy individuals or patients diagnosed with cancer or at risk of developing cancer. The VCB also collates some information about the health and treatment of the donors.
Samples and information from the VCB are available for research into cancer including its causes, development, diagnosis and treatment. The overall aim of the VCB is to improve our knowledge of cancer and cancer-related diseases, as well as our ability to manage cancer in the future.
The VCB is a not-for-profit consortium or network of tissue banks in Melbourne, supported by Cancer Council Victoria and the Victorian Government. It has been established to manage the collection of normal and cancer tissue and support the sharing of important data among researchers.
What will the tissue, blood and information be used for?
The aim of the VCB is to build up a large collection of cancer specimens, which are linked to medical information about individuals with cancer, that can be used for future research.
Researchers from within Australia or overseas can apply to the VCB for biospecimens and information to use in their cancer research project. Before it is provided, an impartial panel of scientists and doctors must agree that the project is scientifically worthwhile and a Human Research Ethics Committee must approve the project, having considered the interests of the donors.
Because information and materials stored at the VCB are collected for future research, it is not possible to say exactly which projects your specimens may be used for. However, only projects that investigate the causes of cancer and/or develop improved methods for the detection, diagnosis or treatment of cancer will be approved.
What happens if I agree to take part?
Normally, when a surgeon removes tissue, it is sent to a pathology laboratory where a pathologist examines it. Representative sections of the tissue specimen are taken and preserved in paraffin wax. The pathologist examines the tissue under a microscope and then prepares a report that is used to plan future treatment.
Tissue that is not needed for this process is usually discarded. In most cases, it is this tissue that would be destroyed that is banked with the VCB.
If you agree to participate, the pathologist may give the VCB a small sample of cancer tissue and some of the normal surrounding tissue that is not needed to make your diagnosis. However, there is no guarantee that any of your tissue will be taken for biobanking. It is up to the pathologist to decide. If there is any excess tissue it may be banked fresh, stored frozen or preserved in paraffin wax for future research.
We will also seek your permission to collect a small amount of blood (25-50mls) to match with the tissue. If possible, this will be collected at the same time as other routine blood tests.
We will also ask you some questions and gather information from your health records relevant to your cancer that may be useful in research. This information may be obtained from pathology reports, medical records or cancer registries and will include your treatment and progress over time.
If I agree, what exactly will the Victorian Cancer Biobank collect?
- Fresh normal and cancer tissue
- A blood sample
- Permission to use tissue stored in paraffin wax blocks
- Information about you and your health
Are there any risks?
Both the risks and benefits of participation in the VCB program will be discussed with you in detail. For tissue donation, there are no physical risks in collecting tissue that are additional to the risks of your operation. Only tissue that is not needed for your treatment will be collected for the VCB.
Collection of a blood sample can sometimes cause local pain and bruising. All procedures will be carried out by qualified staff and your welfare is their top priority.
Some approved researchers may conduct genetic research, which involves the study of genetic material, such as DNA. The VCB staff will discuss this with you, including the steps we take to manage risks.
The results of research performed on your tissue are intended to improve our understanding of cancer and to provide general benefit to cancer patients.
As research can often take many years, it is likely that there will not be any information from research conducted on your tissue that will have specific relevance to your health. However, if information with health implications for yourself or your family becomes available as a consequence of being a donor, the researcher is required to inform the VCB and Human Research Ethics Committee. The committee will examine the research data and decide whether it may be in your interests for you to be contacted. If this knowledge is of medical significance to you and your family this can be communicated to you, if you choose, via your doctor. In this case, it is important that you supply up-to-date contact information to the VCB.
If any discoveries are made using VCB materials that can be commercialised and generate money, a proportion may be returned to cancer research. However, there will be no money returned to tissue donors or the VCB.
Do I have a choice?
The decision to donate to the VCB is entirely up to you and your treatment will not be affected in any way by whether you decide to participate or not.
If you decide to donate and later change your mind, just let us know.
Your information and materials can be removed from the VCB if you wish, or if you prefer, materials already collected can be retained in a fully non-identifiable form. It will not be possible to remove materials that have already been used for research.
What about privacy and confidentiality?
To protect your privacy, only authorised VCB personnel will have access to your personal information. When materials or information are released to researchers, they will be labelled with a unique number only. Researchers will not be able to find out who you are unless you specifically allow the disclosure of your personal information.
How can I donate tissue?
If you would like more information about the VCB or if you are interested in participating, please contact us. We can arrange for a representative to discuss our detailed Patient Information Sheet with you or to assist you with the completion of our Patient Consent Form.
Patients who wish to participate in research are given the opportunity to have a discussion with VCB staff as part of our informed consent procedure. At this time, participants will be provided a detailed Patient Information Sheet and a Tissue Bank Consent Form to complete before tissue banking begins.
We encourage participants considering donation to read our Patient Information Sheet and Tissue Bank Consent Form and have a discussion with our team.
Participation in research is voluntary. If you do not wish to donate samples for research, this will not affect your routine care in any way.
Patients who consent to donate samples and subsequently change their mind can withdraw consent at any time by contacting the VCB.
The VCB does not disclose any personal information, which can identify you. When researchers are provided samples, the biospecimen is labelled with a unique number or code so no one can be identified by their samples.
The Human Tissue Act (1982) prescribes the VCB Tissue Banks collection, storage and distribution of biospecimens to cancer researchers. Biobank activities have also been ethically approved at all our collection sites.
Ethics
The VCB is committed to ensuring that the collection of research biospecimens does not interfere with patient care and that the privacy and confidentiality of all volunteer donors are maintained.
Informed consent for tissue collection and research use is obtained from all patients. The VCB and participating healthcare institutions comply with all existing Australian federal, state, territory and institutional requirements pertaining to the participation of patients in research, as well as the collection and use of research biospecimens and accompanying clinical data.
Collection of research biospecimens and associated clinical data has been approved by the research ethics committees at participating healthcare institutions. All research applications for biospecimens and clinical data must be accompanied by research ethics approvals of the research study and are subject to further review and approval by the internal VCB Access Committee.
All biospecimens and associated clinical data are de-identified so that a patient’s identity is accessible only to VCB authorised staff. Identifying information is not disclosed to any recipient medical researchers.