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What is Tissue Banking?
“Tissue Banking” is storing tumour (or tissue) and blood samples for future research. A “Tissue Bank” is the place where tissue and blood samples are stored.
The purpose of tissue banking for future unspecified research is to securely store samples for use when new tests or ideas for tests become available. The use of banked tissue and blood in future research may help researchers learn more about different types of cancers and how to best treat them.
Tissue banking for future research is usually an optional part of the study. You will only donate your samples if you select the option agreeing to donate and sign the consent form at the end of the relevant information sheet. You do not need to have any additional procedures or tests.
What Will Happen to my Banked Samples?
Any samples (e.g. tumour, blood, etc.) left over after testing for a study will be sent to a specific Tissue Bank; the location of the Tissue Bank will be specified in the study-specific information sheet.
Your tumour and blood samples will be stored as re- identifiable samples. This means that your samples will be identifiable by a code; they can be identified as yours even though the bank does not know your identity.
The custodians of the Tissue Bank will have access to your samples and will ensure appropriate standards are met in storing and managing the Tissue Bank.
All future new studies will require the prior approval of both a committee consisting of academic researchers and other experts and a Human Research Ethics Committee (HREC), which is made up of clinical, scientific and community representatives and operates under national guidelines. The HREC oversees the ethical conduct of a study, including protection of patient rights, confidentiality and safety.
Your confidentiality will be protected at all times, and the researchers will follow the applicable national guidelines. Samples will be used for research purposes only and will not be sold. As we don’t know exactly what your samples will be used for, we expect to keep them for a long time. You can choose to have your samples removed and destroyed at any time by contacting the study doctor, however information already obtained from research on your tissue samples may be combined with other data sets and it may not be possible to remove it.
What are the Possible Benefits of Banking my Samples?
There is no direct benefit to you. Other people with breast cancer in the future might benefit if researchers learn more about how to treat breast cancer more effectively by using your banked samples.
Do I Have to Allow my Samples to be Banked?
Participation in the banking of your samples for future research is voluntary. If you do not wish to allow your samples to be banked for future research, you do not have to.
If you do not agree to take part in future unspecified research, your samples will be returned to the hospital from which they were obtained if needed or destroyed at the end of the study.
If you decide to allow your samples to be banked and later change your mind, you need to notify your study doctor or a member of the research team who will ensure your samples are removed from the tissue bank.
You may hold beliefs about a sacred and shared value of all or any tissue samples removed. The cultural issues associated with sending your samples overseas and/or storing your tissue should be discussed with your family/mob/whānau as appropriate.
There are a range of views held by Māori around these issues; some iwi disagree with storage of samples and genetic testing citing whakapapa and advise their people to consult before taking part in research where this occurs. However, it is acknowledged individuals have the right to choose.