Brain tissue donation
“My mum has dementia and the doctor looking after her asked us how we would feel about donating mum’s brain to research after she dies. Mum cannot decide for herself anymore and I don’t know what she would want. I feel too overwhelmed to think about it.”
Conditions like dementia can affect how the brain works. By studying the brain, we can better understand what might cause dementia, which helps us to develop tools and treatments to manage this condition. Brain donations are critical for this.
But the decision to donate your brain, or the brain of a loved one, is a very personal one. There are no hard-and-fast rules, but making the decision early can make it less stressful for you and your loved ones.
If you’re thinking about brain donation, here’s some information that might help you make your decision.
Why brain donation matters
Scientists and researchers have made significant advances in understanding dementia over the past decades. But we still haven’t found a cure.
By donating your brain, you can help to further dementia research. Brain donation helps researchers identify the changes that occur in the brains of people with dementia, and compare them to people with healthy brains.
Healthy brains are important too. We use these as “controls” during the research process to understand ageing. Even if you’re not affected by dementia, you can still donate your brain and play a critical role in research.
About brain donation
Brain donation is when you or your family decide to provide your brain to medical research after your death. This includes your whole brain, and all of its parts. Sometimes, we refer this as brain tissue.
“Brain banks” are responsible for collecting, storing and distributing brain tissue for research purposes. If you decide to donate your brain, a brain bank will handle the procedure.
After you die, a specialist will remove your brain in an autopsy within 48 hours. The process is supervised by a pathologist, and it happens at a hospital or forensic institute mortuary.
Once it’s been removed, two things will happen to your brain. Half of the brain tissue is frozen and used for research. The remaining tissue is preserved in a liquid called formalin, so it can be used for both diagnosis and research.
Doing this means researchers can get the most information possible, and makes sure the tissue can be used for years to come.
You won’t know exactly what research your brain tissue will be used for, as research changes over time. But any research using brain tissue has to be approved by Ethics Committees and state Scientific Advisory Committees. Only ethical research projects that have scientific merit are approved.
Brain banks store donated tissues indefinitely. If they do need to dispose of tissue, it is done ethically and respectfully, in line with national regulations.
Eligibility for brain donation
Different brain donation programs may have different eligibility requirements, so it’s best to check directly with the brain bank in your state.
But these are some common concerns about eligibility:
- Organ donors: you can still donate your brain if you’re also an organ donor.
- Full body donors: it’s not possible to be both a full body donor and a brain donor. This is due to the embalming procedure that’s used when you donate your whole body to research.
- Infectious diseases: if you have an infectious disease, like Hepatitis B and C, HIV or Creutzfeldt-Jakob disease, you can’t donate your brain. This protects brain bank staff and researchers.
- Regional locations: you can usually register to donate your brain if you live in a regional location, but it does vary between states.
These are some other things to be aware of if you’re thinking about brain donation:
- Cost: donating your brain is free. But your funeral arrangements and costs will still be your family’s responsibility.
- Funeral: your brain donation won’t affect the timing of your funeral. As there are no visible marks from the autopsy, you can still choose to have an open casket.
- Privacy: brain banks are committed to protecting your privacy, and must adhere to the Australian government’s Privacy Principles. Your personal and health information is held securely in password-protected computer files and in locked files at a separate location. Once the brain donation has occurred, researchers access your tissue and select clinical information using a unique identification number; your name or identification will never appear in research.
How to donate your brain
If you’re thinking about donating your own brain, we recommend you discuss it with your family as early as possible. It’s a big decision, so having plenty of time to talk it through will help make sure your wishes are considered.
Once you’ve decided to donate your brain, these are the steps to take:
- Contact the brain bank in your state. Check if they’re taking donations and ask about any eligibility requirements.
- Fill in a brain donation consent form. The brain bank can supply you with the documents you need.
- Consider recording your decision in other relevant documents, like your advance care plan or will.
- Let your doctor know about your decision, as they’ll need to complete your death certificate as quickly as possible after you die. They’ll also provide the brain bank with relevant medical information that may be useful for researchers.
You can change your mind at any time by signing the withdrawal section on your consent form. All your electronic records will be deleted and your paper file will be destroyed. The brain bank won’t ask any questions, and it won’t affect your relationship with any medical institute or health service.
If you’re making the decision on behalf of a loved one, think about any conversations you might have had that could indicate their preferences. You’re able to choose to donate their brain, as long as it doesn’t contradict any wishes they’ve previously expressed (such as objecting to organ donation). We suggest involving other family members in this discussion.
Finding a brain bank
Here is a list of Australia’s brain banks. There are currently no brain donor organisations in Queensland, South Australia or the Northern Territory.
New South Wales and the ACT
Sydney Brain Bank
Tel: (02) 9399 1707
Email: braindonors@neura.edu.au
Web: sbb.neura.edu.au
NSW Brain Tissue Resource Centre
Tel: (02) 9351 2410
Email: medicine.uob@sydney.edu.au
Tasmania
University of Tasmania
Tel: 1800 792 661
Email: body.bequest@utas.edu.au
Web: utas.edu.au/health/community-programs/body-bequest-program
Victoria
The Florey Victorian Brain Bank
Tel: (03) 8344 1900
Email: fairlie.hinton@florey.edu.au
Web: https://florey.edu.au/our-research/scientific-facilities-and-research-services/victorian-brain-bank/
Western Australia
University of Western Australia
Tel: (08) 6488 3288
Email: bodydonation@uwa.edu.au
Web: uwa.edu.au/schools/human-sciences/body-donation-program
Other ways to support brain research
Preparing, examining each brain for diagnosis and distributing tissue to researchers is expensive. Brain banks gratefully accept any donation, big or small, to further research, and donations over $2.00 are tax deductible.
Some of the ways people like to donate to brain banks include:
- making regular or one-off donations
- leaving a bequest in your will
- asking people attending their funeral to donate money instead of sending flowers.
The brain bank in your state can point you in the right direction and supply the necessary documentation.