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Information for brain donors
A University of Sydney brain donor program
The 'Using our Brains' donor program enrols brain donors from a broad cross-section of the community to offer future generations the possibility of improved health.
What is brain donation?
Brain donation is when a person and their family decide to donate their brain for medical research following their death. Brain donation is fundamental to advancing the understanding of diseases that affect the brain, and also require people without brain diseases to participate for comparison purposes.
Brain donation is donation of 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.
Although over the past decades many advances have been made in our understanding of diseases that affect the brain, there are still no cures for these conditions. Modern brain imaging techniques, blood tests and genetic markers are helping to improve the characterisation of brain diseases, but without understanding the changes that occur in the brain, the impact of these advances will be limited.
In order to develop more effective treatments for diseases that affect the brain, studies are needed to identify the specific cellular changes occurring in the brain of people with those diseases compared with healthy subjects.
Once the brain has been obtained, it is collected, stored and characterised by the NSW Brain Tissue Resource Centre (NSW BTRC). In some cases permission is also sought to remove the spinal cord. The brain undergoes a thorough examination to determine a final diagnosis so that the tissue can be used most effectively in ethically approved research studies.
Tissue requests received by the NSW BTRC from both national and international researchers are evaluated and approved by a Scientific Advisory Committee. Over the past decade the NSW BTRC has collected over 500 cases and tissues have been provided to over 270 different projects. The NSW BTRC has sent tissues to a number of research groups world-wide and they have used various pathological, neuro-chemical and molecular techniques, including proteomics and genomic studies with excellent results.
How to become a donor
Any person over the age of 18 can register as a potential brain donor. To enrol as a donor for the Using our Brains program you must complete a pre-screen via telephone or the online enquiry form. This is to ensure that you are suitable for brain donation for research.
Before making a decision to register as a potential donor, it is highly recommended that you discuss this decision with your family to ensure that they are aware of your wishes.
Donors that meet eligibility criteria will be sent a 'consent kit' that contains detailed information on the Using our Brains program and consent forms. Consented donors will be contacted annually to update their contact, medical and lifestyle details.
During your life, any information that is obtained that can be identified with you will remain confidential and will be disclosed only with your permission or as required by law.
By signing the consent kit, after your death your tissue will be stored and made available to researchers from leading neuroscience centres both nationaly and internationally who apply via the NSW Brain Tissue Resource Centre.
Researchers may publish results, however information will be provided in such a way that you cannot be identified.
You are eligible to be a donor if you:
- are aged 18 years and over
- live in NSW Sydney Metropolitan, Hunter or Illawarra Region
- are not a Whole Body Donor (different to organ donation)
- do not have an infectious disease such as Hepatitis, HIV, AIDS, CJD
- have not been diagnosed with a brain tumour, stroke, epilepsy, or other neurological illness
- do not suffer from a serious head injury with loss of consciousness.
As each state has different laws governing the use of human tissue for research purposes, it is not possible for the brain banks in Sydney to accept interstate brain donations, however there are brain donor coordinators in some other states across Australia who can supply more state specific information.
Frequently asked questions
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.
Many conditions such as schizophrenia, bipolar disorder, depression, motor neurone disease, multiple sclerosis, alcohol related brain disorders and other neurological and psychiatric conditions only affect humans. Brains from people affected with these illnesses are essential for research devoted to finding treatments and cures.
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. People not affected by neurological and psychiatric conditions are encouraged to consider registering as donors of tissue that may be used as controls in the research process.
Yes. There is no interruption to the organ donation processes and this will preclude the brain donation. Neither procedure will be affected by your decision to be an organ or brain donor.
No. It is not currently possible to be both a full body donor and a brain donor.
No. People with infectious diseases cannot be donors due to the safety of the NSW Brain Tissue Resource Centre staff and researchers. These include hepatitis B and C, HIV and AIDS, and Creutzfeldt-Jakob disease.
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. However, all other aspects of the funeral arrangements remain the responsibility of the family.
We request a senior next of kin to be part of the consent process, due to Human Tissue Act 1983 which requires a senior next of kin to gain authority to remove tissue after death. The senior next of kin can be a spouse, guardian, power of attorney, or significant other.
It is possible to consent to brain donation without a senior next of kin, however we cannot guarantee at time of death that donation will proceed. This is due to brain donor program requiring approval from a Designated Officer for removal of tissue, and generally we require full consent of both the donor and next of kin to seek this approval.
After we have been notified of your death we will arrange transport to a registered hospital or forensic institute mortuary. The brain (and spinal cord if additional consent has been given) is removed by a trained technician supervised by a pathologist. Ideally the procedure should take place within 24 hours after death but can be performed up to 60 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.
The post mortem procedure does not interfere with the normal course of events associated with a funeral. The donation process only takes a few hours and the body can usually be returned to the family within 24 hours. Special arrangements can be made to comply with religious beliefs. 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.
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 neuropathological diagnosis and research.
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 that 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 NSW Scientific Advisory Committee. This is to ensure the tissue is used ethically and is only provided to feasible research projects with scientific merit.
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 the NSW Brain Tissue Resource Centre 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 NSW Brain Tissue Resource Centre is committed to protecting the donor and their families privacy. You have the right to access any personal information that we hold about you. You can ask to correct, update or amend personal and health information, such as your current address.
You are free to withdraw your consent at any time, by signing the withdrawal section on your consent form. Your decision will be fully respected and no questions will be asked. Your decision will not affect your relationship with any medical institute or area health service. All your electronic records will be deleted and your paper file will be destroyed.
Your General Practitioner (GP) will be asked to complete the death certificate at the time of death. Your GP will also be the main contact to provide any additional medical information required post-mortem. Therefore it is important that your doctor is aware of your wish to donate your brain, however it is not compulsory.
The donated tissues are stored indefinitely. They are preserved in such a way that ensures their continued use in research. 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.