Frequently Asked Questions

What is involved in becoming a donor?
What is meant by brain tissue?
Why is brain tissue needed for scientific research?
Is tissue from normal brains needed?
I am an organ donor. Can I still donate my brain?
I am a full body donor (or whole body donor). Can I still donate my brain?
I have an infectious disease. Can I still donate my brain?
Is there any cost involved with donating my brain?
Do I need to have a Next of Kin?
What is the process of brain donation?
Will the brain donation affect the funeral arrangements?
What happens to the brain tissue?
What research is performed on the brain tissue?
If I become a donor, will this information be private and confidential?
What if I decide to withdraw after giving consent?
Does my doctor need to know that I intend to donate my brain upon my death?
How long will the tissue be stored and how will it be disposed of?
Can I donate if I live outside of Sydney?

What is involved in becoming a donor?

If you decide to become a brain donor, after an initial pre-screen to confirm eligibility, you will be sent a consent kit which contains all information and consent forms. After enrolment we will contact you annually to update your details.

Read more on how to become a 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.

Why is brain tissue needed for scientific research?

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.

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. People not affected by neurological and psychiatric are encouraged to consider registering as donors of tissue that may be used as controls in the research process.

I am an organ donor. Can I still donate my brain?

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.

I am a full body donor (or whole body donor). Can I still donate my brain?

No. It is not currently possible to be both a full body donor and a brain donor. This is due to the embalming procedure used when donating your whole body to research.

I have an infectious disease. Can I still donate my brain?

No. People with infectious diseases cannot be donors due to the safety of the NSW Tissue Resource Centre staff and researchers. These include Hepatitis B and C, HIV and AIDS, and Creutzfeldt-Jakob disease.

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. However all other aspects of the funeral arrangements remain the responsibility of the family.

Do I need to have a Next of Kin?

UoB requests a Senior Next of Kin to be part of the consent process is due to Human Tissue Act 1983. Under the Human Tissue Act 1983, to gain authority to remove tissue after death we need:
“The deceased person, during the person’s lifetime, given his or her consent in writing to the removal of tissue from the person’s body for that purpose”
and
“A senior available next of kin of the person may, by instrument in writing or in any other manner prescribed by the regulations, authorise the removal of tissue from the deceased person’s body for the purpose of its transplantation to the body of a living person, or its use for other therapeutic purposes or for medical purposes or scientific purposes.”

The Senior Next of Kin is defined in the Human Tissue Act 1983 as
1) Spouse including a de facto or same sex partner
2) Son or Daughter (18 years of age or over)
3) Parent
4) Sibling
The Senior Next of Kin cannot be a Guardian, Power of Attorney, Person Responsible, or Person to Notify (unless these are people as stated above) as these people have not legal status after death in relation to tissue donation.

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.

What is the process of brain donation?

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 at an autopsy by a trained technician and the post mortem examination is 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, however brain donation can take place as part of a full autopsy, when appropriate.

Will the brain donation affect the funeral arrangements?

The post mortem procedure does not interfere with the normal cause 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.

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 neuropathological 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 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.

Read more on Research.

If I become a donor, will this information be private and confidential?

Yes. The personal and health information of all registered donors is held in 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 NSW Tissue Resource 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 Tissue Resource Centre 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.

What if I decide to withdraw after giving consent?

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.

Does my doctor need to know that I intend to donate my brain upon my death?

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.

How long will the tissue be stored and how will it be disposed of?

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.

Can I donate if I live outside of Sydney?

Unfortunately we cannot accept people’s generous donations if they live outside the Sydney, Illawarra and Hunter regions due to our limited resources involved with transportation and donation.

Sydney is defined as Inner Sydney, Outer Sydney and Sydney Surrounds, as per the definitions from Division of Local Government, NSW Government.