PlatformsAustralian Brain Bank Network (ABBN)

About Donating Brain Tissue to Research

The donation of post-mortem (autopsy) brain tissue for research is of fundamental importance to further our understanding of the causes of neurological and psychiatric conditions and to develop more effective diagnostic tools and treatments for these conditions.

The following questions and answers are to assist those who are considering registering as a brain donor.

What is meant by brain tissue?
We mean the whole brain. The brain is a very complex structure and it is necessary to look at all the different parts of the brain. In some neurological conditions the spinal cord is also essential for the confirmation of diagnosis and research. If this is specifically stated on the consent form, consent to donate spinal cord can be given.

Why is brain tissue needed for scientific research?
Many conditions such as Alzheimer's disease, bipolar disorder, depression, Huntington's disease, motor neuron disease, multiple sclerosis, Parkinson's disease, schizophrenia, alcohol related brain damage and other neurological and psychiatric conditions affect only humans. Brains from people affected with these illnesses are essential for research devoted to finding treatments and cures.

Is tissue from normal brains needed?
Yes. Progress can be made towards finding the cause of neurological and psychiatric conditions if researchers can compare brains from those affected with brains from those who were not affected by such conditions. Normal brain tissue can also be used to study ageing of the human brain. Normal brain tissue is known as 'control' tissue. Unaffected spouse or family members are encouraged to consider registering as donors of tissue that may be used as controls in the research process.

How will information obtained from a brain examination benefit the family?
Examination of the brain after death enables clinicians and researchers to have an accurate diagnosis of the illness that the donor may have had and supports research into these illnesses. A detailed neuropathological report stating the final diagnosis will be sent to the donor's doctor and is available (upon request) for the senior available Next of Kin to discuss with the doctor. Occasionally post mortem diagnoses may differ from those made while the donor was alive.

This resource centre offers the opportunity to support medical research into neurological conditions, using research techniques which cannot be performed during life.

This is particularly important for those in whom the neurological disease may have a hereditary or familial association. If you or a close relative have such a disease, this program may then be relevant for a child or grandchild at risk of developing the disorder.

In time, these donations will come to help those affected and those not yet affected. Active research is now in progress and already many medical and scientific articles have been published using donor specimens.

Can I become a donor if I live in a regional area?
Yes. To be useful to researchers, post mortem tissue must be collected and stored as soon as possible after death. Obstacles of timing and distance may sometime 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.

I have an infectious disease. Can I still donate my brain?
In general, the brain banks usually preclude brain donation by people with infectious diseases for the safety of staff. These include Hepatitis B and C, HIV and AIDS, and Creutzfeldt-Jakob disease. Specialist brain donor programs may accept people with these conditions. If you have an infectious disease, please provide the Brain Donor Coordinator with the appropriate details.

Is there any cost involved with donating my brain?
No. The brain bank will cover all costs involved with transportation of the body for the procedure and all costs associated with the brain donation (including neuropathological diagnosis). However, all other aspects of the funeral arrangements remain the responsibility of the family.

What does a brain donation involve?
The brain (and sometimes spinal cord, if consent has been given) is removed at an autopsy restricted to the tissues being donated. The post mortem examination is an orderly procedure supervised by a pathologist at a hospital or forensic institute mortuary. Ideally the procedure should take place within 24 hours after death but can be performed up to 48 hours after death. The deceased is treated with the utmost respect, and brain removal occurs in such a manner that the body is not disfigured. Brain donation does not require a full autopsy, however brain donation can take place as part of a full autopsy, when appropriate.

What happens to the brain tissue?
The brain is 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 neuropathologic diagnosis and research.

What research is performed on the brain tissue?
We cannot advise you as to the exact nature of this research as researcher's needs change with time and there are continuing advances in technology which affect the nature of scientific research. However, researchers will only be able to access stored tissue and clinical information after obtaining approval for their research projects from their institutions Human Research Ethics Committee and the relevant state Scientific Advisory Committee. This is to ensure the tissue is used ethically and is only provided to feasible research projects with scientific merit.

If you become a donor will this information be private and confidential?
Yes. The personal and health information of all registered donors is held securely in password-protected computer files and in locked files at a separate location to ensure confidentiality. Once the donation has occurred, the tissue is stored securely at a one of our Brain Banks and is identified only by a unique identification number.

Researchers have access to selected tissues and specified clinical information only through the unique identifier. No donor is ever identified by name in any publications or presentations that result from the research.

The ABBN are covered by the rules for handling personal information set out in Federal and State legislation, and adherence to the National Privacy Principles. The ABBN are committed to protecting the donor and their families' privacy.

You have the right to access any personal information that the ABBN holds about you. You can ask to correct, update or amend personal and health information, such as your current address.

For more detailed information on the Privacy Act contact the Office of the Federal Privacy Commissioner by visiting www.privacy.gov.au or on 1300 363 992, or your relevant state legislative authority.

Resource Links page under 'Other useful links' add Australian Commonwealth Government Privacy Act 1988, with link to http://www.privacy.gov.au

What effect will making a brain donation have on funeral arrangements?
None. The post mortem procedure does not interfere with the normal course of events associated with a funeral.

The post mortem does not affect the ability to have a viewing or open casket funeral as the brain is removed in such a way as to minimise visible marks.

Is brain donation the same as tissue or organ donation such as cornea or kidney?
No. Organs and tissues donated for research must have a completely separate and specific consent from organs and tissues donated for transplant.  The donated brain is never used for transplant purposes.

When should plans be made to ensure brain tissue donation occurs after death?
It is important to make the necessary arrangements well in advance, since family members need time to discuss this very important issue.

Discussion with your senior available next of kin and family members will also help ensure your wishes are considered. It is preferable to state your wishes in writing by using the brain donation consent forms designed for this purpose by the brain donor programs. Contact the brain bank for a copy of this documentation.

Does my doctor need to know that I intend to donate my brain upon my death?
Your family doctor will be asked to complete the death certificate at the time of death. It is important that your doctor is aware of your wish to donate your brain in order to complete the death certificate in an expedient manner. In addition, your doctor will provide medical information useful for researchers (consent to access medical information forms part of the brain donation consent form).

What if you decide to withdraw after giving consent?
You are free to withdraw your consent at any time. Your decision will be fully respected and no questions will be asked.

How long will the tissue be stored and how will it be disposed of?
Your tissues are preserved in a way that ensures their continued use in research for many years to come.

If we have to dispose of tissue that is no longer suitable for research it is done in an ethical and respectful manner, in accordance with prevailing national regulations.

Can I make a donation to the running of the ABBN?
The cost of preparing, examining each brain for diagnosis and distribution of tissue to researchers is very costly. Monetary donations to the brain banks within the national network are gratefully accepted. Donations over $2.00 are tax deductible. Sporadic or regular donations can be made in the form of cash, cheque or credit card. Bequest donations in your will are also welcomed.

Individuals or organisations interested in supporting the ABBN should contact Fairlie Hinton 03 8344 1900 or f.hinton@mhri.edu.au.

How can I ask people to donate money in lieu of flowers at the funeral?
The appropriate state brain bank can provide a document to be available at the funeral to facilitate cheque or credit card donations. Contact your local State Brain Donor Coordinator for details.

How do I find out more or become a registered brain tissue donor?