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Brain donation

If you would like to help make a difference for people in the future, you can look into brain donation. This means promising your brain to researchers who can study it as they aim to develop new and better treatments for people affected by brain tumours.

On this page, we’ll cover:

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We understand that reading or thinking about brain donation can be emotional. And, we’re here to help. So, if you have any questions or would like to speak to someone about this, please contact our kind and approachable Support Team.

A mother talks about her decision to donate her daughter's brain to research following her death as a result of a brain tumour.

Why I chose to donate my daughter’s brain

In 2017 Olivia was diagnosed with a DIPG brain tumour. And after bravely battling the disease she passed away just before her 6th birthday.

In this video, her mum Clare openly talks about why she and her family decided to donate Olivia’s brain to research.

What is brain donation?

When affected by a disease, such as a terminal brain tumour, many people wish to do what they can to make a difference for those in the future. They want to help find a cure and prevent other families from being affected in the same way.

One way of making a difference is through brain donation. This is the act of promising your brain to science after you die.

Brain donation gives researchers access to brain tissue. This is important in the development of new and better treatments for those affected by a brain tumour.

And, it doesn’t just apply to brains affected by brain tumours. Researchers also need healthy brain tissue to use in comparison to tissue from brains affected by tumours.

How can I donate my brain and spinal cord?

If you decide that you would like to donate your/your loved one’s brain, there are various people you should contact to register your wishes.

It is important to make your wishes known in writing.

Brain Donation plays a vital role in research into brain tumours and contributes to finding a cure faster.

It is important to consider that donation is not always straight forward. Finding the most suitable place to ensure that your brain can be used for the correct research may take some time. Therefore, if you would like to donate your brain it is best to start enquiring how to do this as soon as possible.

Here’s who you should talk to about brain donation:

Your nearest brain bank

The Human Tissue Authority (HTA) has a list of brain banks with their locations.

There are a number of factors that can impact whether brain donation is possible or not, such as whether the brain bank has capacity to accept new donations.

Some banks may specialise in brains that have been affected by a specific disease, but you should still contact the bank nearest to you in the first instance.

Often brain banks cannot give a general ‘yes’ or ‘no’ answer as to whether or not they can take a brain donation. The answer will be dependant on factors; such as, brain tumour type, the brain tumour location, where geographically you live, your age etc.

Research at Universities and Hospitals

Brain Donation is also possible when there is a “call for study” at a hospital or university. This means they are currently carrying research into brain tumours. You can ask your hospital if they are looking for brain tumour donations for your brain tumour type. Even if they are not, they may know of other hospitals and universities who are.

Brain Tumour Organisations and Charities

You may also consider contacting other brain tumour charities and organisations to enquire about their knowledge and if they can signpost you in the right direction for brain donation.

Please know that we at The Brain Tumour Charity are currently working towards acquiring new findings, information and to be-able to provide the brain tumour community with further knowledge and understanding towards the brain donation process; in order to support you as best as possible.

The person wishing to donate their brain can consent themselves. Or, consent can be obtained from a person nominated to act on their behalf or by a person in a qualifying relationship at the time of their death (see box below).

This will usually be a spouse/partner, parent or close family member.

This applies when there are no records of their wishes, or they are not able to consent. For example, if they are too young.

Qualifying relationships are ranked (see below). The person at the top of the list should be asked first. Each person has priority over someone below them on the list:

  • spouse or partner, including civil or same sex partner (a person is considered a partner if they live as partners in an enduring family relationship)
  • parent or child
  • brother or sister
  • grandparent or grandchild
  • niece or nephew
  • stepfather or stepmother
  • half-brother or half-sister
  • long-standing friend.

Your medical team

Although you can record your wishes to donate tissue within your Will, the reading of the Will is likely to take place too late for the donation to take place.

So, as well as contacting your nearest brain bank, so that the appropriate arrangements can be discussed and made, you should also make your/your loved one’s medical team aware in advance.

This includes your hospital team and your GP. (Brain banks will often write to GPs to gain key information about you and your condition when you register with them.)

They can make a note on your records and make sure that the donation process takes place as speedily as possible.

Funeral directors

It is a good idea to choose your funeral directors and let them know that you will be donating your/your loved one’s brain.

Friends and family

It’s also important that you tell a relative and/or close friend about your decision to donate, so they know what your wishes are.

  • Talk to your healthcare team about the possibility of leaving your whole brain or tumour site to research after you die.
  • Make sure all the relevant paperwork is completed. It is important to discuss this with those you love so they are aware of what your wishes are after you die.
  • It’s best to discuss brain donation with your chosen funeral director as it may affect the logistics of your funeral. For example, you can’t be embalmed prior to donation.
  • Make sure if you have an Advance Care Plan you also update it to include your brain donation.

I wish to donate my brain. What does my family/carer need to do after I die?

The place where you have registered to donate your brain should be contacted as soon as possible to make them aware that the death has occurred. The bank will do all that they can to make sure that the donation takes place.

When a donor dies in hospital, a hospital doctor will normally certify the death and the donation will take place before the body is moved into the care of the funeral directors.

When the death occurs away from a hospital, the body is usually taken directly to the funeral home and the GP will confirm the death. A time for the donation to take place is usually agreed between the funeral director and the pathologist.

Most brain banks will cover the cost of transporting the body to the hospital mortuary for the donation to take place, and will arrange the collection of the body by the funeral director. If you know which funeral home will be used, you may wish to also make them aware of your wishes.

What may prevent the brain donation from taking place?

While everything is done to make sure you can donate your/your loved one’s brain if you want to, each donation is dealt with on a case by case basis. Unfortunately, in some circumstances, brain donation is not always possible.

To be suitable for research, the tissue should be obtained from someone who has recently died. The majority of banks will accept tissue within 48 hours, but speak to your nearest brain bank to check their policy on this.

Delays may occur if the cause of death is uncertain, as the death will be referred to the coroner for the cause to be confirmed. The coroner should be informed of your wishes and that relatives have agreed to the donation. If the coroner has no objections to the donation, it can still take place.

Delays may also be caused as brain banks rely on NHS mortuary services to assist with the donation and these may not always be available.

Will donating my/my loved one’s brain affect the funeral?

Brain and spinal cord donation will not normally affect the funeral. Speak to the brain bank about timeframes for the donation when you first contact them.

I don’t have a brain tumour. Can I donate my brain if it is healthy?

Yes! To ensure that research is thorough, it’s important that researchers also have access to healthy brain tissue to compare it to the tissue of those who have a brain tumour. These healthy tissues are called control tissues.

There’s currently a shortage of tissue donated by people with healthy brains on their death, so your kind donation would be a very valuable gift.

If you have further questions, need to clarify any of the information on this page, or want to find out more about research and clinical trials, please contact our team:
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