More people are suffering from brain diseases and disorders. There are no known cures for many of these conditions, and a high priority is given to research designed to improve our understanding of them, and find new treatments.
To ensure research is thorough, it is also important to have access to brain tissues from people who did not have the diseases being studied. These unaffected tissues are known as ‘control tissues’. It is crucial that scientists have access to these so that they can be compared with tissues from people who had a disease. These valuable donations are essential for developing new and better treatments for people with diseases and in the search for a cure.
Brain donation has helped researchers and doctors to better understand diseases such as schizophrenia, Alzheimer’s disease, Parkinson’s disease and variant Creutzfeldt-Jakob Disease.
A list of human tissue banks which accept brain and spinal tissue for research is available on the HTA website or by phoning the HTA. Brain banking needs to take place as soon as possible after death. Individual brain banks may vary in their procedures and this should be discussed with the brain bank.
A person may consent for their tissue to be used for research, or, if there is no record of the deceased person’s wishes, consent can be obtained from someone nominated by that person to act on his or her behalf or from someone in a qualifying relationship to them at the time of their death.
Although it is possible for a person to record a wish to donate their brain in their Will, the reading of the Will may occur too late after the person’s death to allow the donation to take place. Potential brain donors are therefore encouraged to contact their chosen brain bank rather than relying only on the information contained in their Will. By contacting the brain bank, appropriate arrangements can be discussed and made. This improves the chances of a successful donation after the person has died.
Despite being separate donation systems, it is possible in certain circumstances for a person to donate their brain and spinal cord for research and be an organ donor – this will need to be discussed with the individual brain bank.
If a person wishes to register for both organ donation and brain donation, the HTA recommends that the person ensures that those closest to them are aware of their wishes.
Further information on organ donation can be found on the NHS Blood and Transplant website: www.organdonation.nhs.uk.
There are various reasons why brain banks may not be able to accept the offer of a donation; they can give you more information about this when you contact them. For example, certain medical conditions may lead to the offer being declined. If a death is referred to a Coroner for the cause of death to be confirmed, it may not be possible for the brain and spinal cord to be donated. There may be some circumstances where it is not possible for the brain and spinal cord to be donated within the required timeframe, as most brain banks require that the tissues are collected shortly after death.
It will not usually be possible for the brain and spinal cord to be donated for research if the body is being donated to a medical school for anatomical examination, as medical schools require the whole body, including the brain and spinal cord.
Brain and spinal cord donation will not usually affect plans for a funeral, cremation or burial. The brain bank can give you more information about the timeframes for donation when you contact them.