Benefits for patients
Biobanking of tissue or blood samples from patients with cancer facilitates research into the causes and treatment of cancer. Biobanking samples does not require any additional procedures, as left-over samples from routine test taken during diagnosis and treatment are used. Any patient can contribute samples to biobanks and consent must be given by the patient (or their parent/guardian, if under 18 years of age) to do so. Donation of samples to biobanks does not compromise the patient’s diagnosis, treatment, or care. On the contrary, biobanked samples may assist an oncologist’s decisions around treatment in patients that develop recurrent disease.
Biobanks have legal and ethical responsibilities to obtain patient or parental/ carer consent to store and use a child’s tissue for medical research. Biobanks are only given samples that are not used up by pathologists during diagnostic tests, and would otherwise be discarded. Biobanks will only store patient samples if you/ your child give consent. All samples collected for biobanking and their associated clinical data (such as name, D.O.B., diagnosis) are de-identified at the time of collection. These samples are made available to researchers. Samples are only distributed to qualified researchers who have received ethics approval to conduct a study using the samples. Thus, regardless of how a patient’s sample is used, the patient will never be identified in any publications resulting from the research performed. A patient or their guardian can withdraw consent at any time through consultation with their treating physician. In the event of a withdrawal, any investigators who have been given samples will receive a letter referencing the patient’s unique identification number and requesting its destruction, if it has not already been used up.
What happens to the results of the research?
Biobanks store samples so that they can be made available to researchers. Researchers need access to large numbers of samples from patients with similar cancers to be able to make important discoveries about how cancer develops and progresses and responds to various treatments that are available. Biobanks protect sample donors, as all proposed research is reviewed and approved by Human Research Ethics Committees prior to the use of samples from any biobank.
Data obtained from research using samples from the ANZCHOG National Biobanking Network will be published, whenever possible, and links to these publications will be posted here
Need more information?
You can download and read the following documents from the Children’s Hospital at Westmead Tumour Bank, as examples of what documentation you should expect to receive when you participate in biobanking at your local hospital: