Participant FAQs

What is a biobank?

A biobank is a collection of human samples such as tissue and blood, linked to health information, which is stored and made available to researchers.

What is the HSA Biobank?

The HSA Biobank is a collaboration between researchers and hospital staff to support the advancement of cancer research. It is housed at the Lowy Cancer Research Centre at the University of New South Wales. 

Who can consent to the HSA Biobank?

Patients having a surgical or medical procedure at the Prince of Wales Hospital, Royal Hospital for Women, Prince of Wales Private Hospital and St George Hospital may be offered the opportunity to consent to the HSA Biobank. Tissue and blood samples and health information are only collected from patients who provide written consent.

To be eligible to participate, you must be 16 years or older, and attending a participating hospital. You will be required to understand and sign a consent form, or have a guardian/carer sign it on your behalf.

I don’t have cancer. Why have I been asked to consent to the HSA Biobank?

Some patients who do not have cancer will be invited to consent to the HSA Biobank. This allows researchers to study other important medical conditions and/or diseases. It can also help enhance cancer research by allowing comparison of tissue or information between those with cancer and those without. 

What does consent involve?

Participation in the HSA Biobank is incorporated into your routine medical care. Once you have given your written consent, and following its examination by a pathologist, a small sample of the tissue removed during your procedure will be stored in the HSA Biobank. You may also be asked to provide a blood sample that can be collected during a routine blood test. If you are not due a blood test, you may be asked to provide a saliva sample or a small swab from inside your cheek. No further tests are required beyond this.

What other health information will be collected?

The HSA Biobank consent form will ask whether you give permission for access to extra information about your medical history such as your hospital medical records, and other health data collections of your past and future health. This information will be paired with your tissue and/or blood samples to help researchers answer a wider range of research questions. 

How can I be sure that my privacy will be protected?

Research is never conducted using information that names individuals. Your samples and data will be given a unique code and your name and other identifying information will be removed to ensure your privacy is maintained. 

Do I have to take part in the HSA Biobank? 

Participation in all aspects of the HSA Biobank is voluntary. You can say no to participation, and, if you choose to participate, you can withdraw your consent at any time if you change your mind. If you withdraw your consent, your tissue samples and personal health information will be destroyed. It will not be possible to remove materials from the HSA Biobank that have already been used for research.

Choosing not to consent to the HSA Biobank will not have any impact on your current and future medical treatment or your dealings with Medicare Australia. 

Will I be contacted again?

Once you have consented to the HSA Biobank, you will usually not be contacted again and your signed consent form is kept in your hospital medical record. If you are approached in the future to consent to the HSA Biobank, simply tell your doctor or nurse that you have already consented.

What will happen to my tissue samples and health data once they’ve been collected?

Your samples and data will be stored at the Lowy Biorepository at the University of New South Wales. Your name and identifying information will be removed to protect your privacy.

Researchers with projects that have been approved by a Human Research Ethics Committee can apply to access these samples and data.

These samples and data allow researchers to examine such things as causes of disease, prevention, diagnosis, treatment and genetics. 

How long will my samples and information be stored in the HSA Biobank?

The samples and data in the HSA Biobank will be kept indefinitely.

Why does the HSA Biobank team want access to Medicare and PBS records?

Medicare and PBS records provide helpful information about visits to health professionals, tests, and prescription medicines. This information is not always available through hospital records. This allows researchers to answer important questions about use of treatments and health services in the community, and to contribute to better patient care.

You can choose not to give the HSA Biobank access to these records. This will not impact your medical care, your dealings with Medicare Australia, or your ability to donate tissue to the biobank.