All about brain donation

Thinking of the future...

What is the Brain Bank?

The Queensland Brain Bank is based at The University of Queensland. It is part of the Australian Brain Bank Network, and provides services for Australian and international clinicians and researchers to investigate neurological diseases. The donation of post-mortem (autopsy) brain tissue for research is of fundamental importance to further our understanding of the causes of neurological conditions and to develop more effective diagnostic tools and treatments for those conditions.

If you know you want to donate, and just need the registration forms: follow this link to the “How do I donate” page.

Why is brain tissue needed for scientific research?

Many conditions such as Alzheimer’s disease, Lewy body disease, Fronto-temporal dementia, and other neurological conditions affect only humans. Brains from people affected with these illnesses are essential for research devoted to finding treatments and cures.

Tissue from normal brains is also needed. Researchers need to compare brains from those affected with a condition to those who are not. Unaffected spouse or family members may also consider registering as a donor.

Information about the type of research that is done using tissue from the Brain Bank can be found on the Discoveries page.

Can I be an organ donor and a brain donor?

Yes! Unfortunately organ donation does not include brain donation – the difference is due to the fact that organ donation is for transplantation into living patients, whereas brain donation is for research. Because of this, brain donation requires a separate registration form. If you would like to do both types of donation we can work with the organ donation doctors to make sure that both your wishes are fulfilled

Can I donate all of my body to research?

The Queensland Brain Bank is interested in acquiring brain tissue and some other tissues of the nervous system for research. If you would like to donate your body to medical research we can work with the Body Bequest program at the Queensland University of Technology. In this case, the Queensland Brain Bank would store the brain tissue for research and the rest of the body would be stored at the QUT Body Bequest facility.

If you are only interested in brain donation, then the remainder of the body is not used and the funeral arrangements remain the responsibility of the donor’s next-of-Kin.

How will information obtained from a brain examination benefit my family?

Examination of the brain after death enables clinicians to accurately diagnose the illness that the donor may have suffered, if any. When there was no underlying neurological illness, the brain is classed as a ‘control’ and is used in many different studies – mostly for comparison to the brains showing the effects of an illness. This information is also useful to the scientists that use the tissue as we can ensure that any tissue they use has been accurately diagnosed. A brain autopsy report (also called a neuropathology report) stating the final diagnosis will be sent to the donor’s senior next-of-kin, and any doctors that the donor or their family nominate. Occasionally, post-mortem diagnoses are different to those made whilst the donor was alive and could only have been made after a post-mortem examination of the donor’s brain.

What does it cost to donate my brain?

There are no costs involved in being a brain donor. The Queensland Brain Bank assumes all financial responsibility for any costs related to being a brain donor. Funeral expenses however, remain the responsibility of the family the same as they would if a donation were not made.

What if I register and later change my mind and do not wish to donate. What do I do?

You may withdraw from the brain donor programme at any time by simply notifying us of your decision. There are no costs involved in withdrawing from the programme.

Will brain donation interfere with funeral arrangements or having an open casket viewing?

No. The removal of the brain and other tissues of interest will not interfere with the family’s plans for the funeral, cremation, or burial. Brain donation will not interfere with open casket viewing or traditional funeral services.

If I become a donor will information about me be private and confidential?

Yes. Once the donation has occurred, the tissue is stored securely at the Queensland Brain Bank based at The University of Queensland and is identified only by a unique identification number. Donor details are held securely on computer and in locked files at a separate location to ensure confidentiality.

Researchers have access to the tissue and clinical information only through the unique identification number. No donor is ever identified by name in any publication or presentation that result from the research.

When a request to use the brain tissue for research is received, it is reviewed by a Scientific Advisory Committee to ensure that the tissue is used ethically and is only provided to feasible research projects with scientific merit.

What will happen when I die?

The donor’s next-of-Kin will need to call the Brain Bank Coordinator (07 3365 4614, anytime), and the funeral directors that have been chosen. The coordinator will have to obtain a “verbal consent” from the next-of-kin to make sure that the family would still like to go ahead with the donation. This involves only a short conversation and is a legal requirement that needs to be fulfilled before the donation can proceed.

Once the coordinator knows which funeral directors have been chosen, she will then liaise with them to make arrangements for the body to be transported to and from the nearest major hospital with facilities for brain removal. The whole brain is removed and processed in two ways to allow maximum information to be obtained and to ensure the tissue is usable in research for many years to come. Half the tissue is frozen and is used for research. The remaining tissue is fixed in formalin and allows for both neuropathological diagnosis and research.

Can the brain tissue be used commercially?

No. The tissue is provided free of charge for researchers to use. However we do charge researchers for the preparation and processing of the tissue to offset the considerable costs involved in collecting donations.

How long will the tissue be kept?

The tissue will be kept as long as research projects require the tissue. Should the tissue no longer be required, it will be disposed of as per the donor’s next-of-kin’s instructions obtained during the verbal consent conversation (see ‘What will happen when I die?’ above).

How will results obtained be communicated?

When important research findings are made, they will be published in peer-reviewed medical journals for others to read. Such publications can be found on the Discoveries page. The identity of the donors will never be revealed and the articles will not contain any information that would enable the donor to be identified.

Can I become a donor if I live in regional Queensland?

Yes. To be useful to researchers, post-mortem tissue must be collected and stored as soon as possible after death but can be collected up to 72hrs later. Obstacles of timing and distance may sometimes arise; however, this should not deter people from registering as donors. In most cases the post-mortem arrangements can be made with the nearest regional hospital.

Currently, we work with the RBWH in Brisbane, Nambour General, Gold Coast Hospital, and Toowoomba Hospital.

How can I ask people to donate money in lieu of flowers at the funeral?

Forms and reply paid envelopes can be made available for you to have at the funeral for donations in memory of your loved one. Should a donor or their family and friends wish to make a contribution towards the running of the Bank or its associated research program the Brain Bank would be most grateful for such additional generosity. All donations over $2.00 are tax deductible and the appropriate forms can be made available at your request.

I’ve decided to donate. What do I do next?

You should make the necessary arrangements well in advance, since family members need time to discuss this very important issue. It is important to share your wish to donate with your Senior Next-of-Kin and other family members. Ultimately, your Senior Next-of-Kin will be responsible for making sure your wishes are fulfilled.

Once you have decided you would like to donate, you have several options:

Telephone us

Telephone the Queensland Brain Bank Coordinator on (07) 3365 4614. You will have the opportunity to have any further questions or concerns answered and you will be sent the relevant consent forms and instruction documents.

Contact us online

Fill in the form on the Contact Page on this website, either for more information, or to be sent the forms in the mail with a reply paid envelope.

Fill out the registration forms and send them to us

Download the registration and medical history forms: QLD Brain Bank Registration forms. Note: you will need Adobe Reader to be able to view them.

You can either complete them on your computer, or print them out and complete them manually. Once signed they should be sent to the Queensland Brain Bank coordinator using the following address (no stamp required):

Dr N. Etheridge (764)
Queensland Brain Bank
School of Chemistry and Molecular Biosciences
Reply Paid 6469