Questions you may ask
Why is brain tissue needed for autism research?
With brain tissue donated after death, neuroscientists can go far beyond the limits of any kind of brain research carried out during life and can study autism at a cellular and molecular level. We can investigate particular pathways and even look at the individual neurons of the brain to understand neurodevelopment.
Researchers face a desperate shortage of tissue donated for autism research and progress is being held back. Only a small number of these precious donations have so far been given to the UK brain bank and the organ donor card here does not include the brain (see section on this below). The only other similar research programme, which is in the US and has been established for much longer, also has less then a fifth of the number of donated brains needed to make this area of research really effective.
We collect the whole brain and, ideally, a cerebrospinal fluid sample taken from adjacent to the brain stem. Consent may also be sought for other small samples such as skin tissue.
What is learned about neurodevelopment can be applied to day-to-day educational programmes to make the most of key developmental periods and the brain's capacity to change.
Certainly. Brain tissue is needed from people who are:
- of any age and are within the autism spectrum or are members of their family
- not affected by autism but who are affected by epilepsy or any other condition related to autism, such as Fragile X or Rett syndrome
- from the general population, who are up to the age of 65 and do not have autism or a related condition
Donations by people of all ages, particularly the young, are needed because this research essentially seeks to understand how the brain develops from its early years and throughout life.
20-30% of people with autism also have epilepsy, and it is vital to distinguish changes in the brain due to autism from those due to epilepsy.
We also need to understand more about the ‘typical’ development of the brain. Donations from people in the general population who do not have autism are very important since they provide what is known as ‘control’ tissue, which enables comparisons to be made between the brains of affected and non-affected individuals. For every donation by someone who had autism or a related condition, matched tissue is needed from someone of the same age and gender without autism.
No. Currently in the UK, the NHS scheme is exclusively for organs for transplantation. However, if you donate your brain for research that is no bar from donating other organs for transplantation provided the conditions for donating an organ for transplantation are also met. (There is also a separate arrangement with UK medical schools whereby you can pledge to donate a body to medical science but if you do that, brain donation for research is not an option.) A pledge to the NHS scheme would not include giving your brain for research.
Please register as a potential brain donor to the Brain Bank for Autism & Related Developmental Research. A donor card would be posted to you. You can also register your general support for this research.
The more that people express their support for research into how the brain functions in autism, the stronger the case is for it and the more likely it is to succeed. If you wish to give your support by helping to raise awareness of the need for this research, that would be very helpful, but there is no expectation that you would do so.
You are free to change your mind at any time. We understand that brain donation is the ultimate gift you can make, and you may reconsider your pledge. If so, just email us or telephone 0800 089 0707.
A formal consent must be sought from you or your next-of-kin, before or immediately following your death. Consent can be withdrawn at any time after a donation has been made. The donated tissue would then be treated according to the wishes indicated on the consent form.
This is given in the Human Tissue Act (Section 54(9) as:
- Spouse or partner (including civil or same-sex partner)
- Parent or child
- Brother or sister
- Grandparent or grandchild
- Niece or nephew
- Stepfather or stepmother
- Half-brother or half-sister
- Friend of long standing
When you make a pledge to donate, it is always best to have discussed this with your family so that your wishes are known and your family can support your decision.
If you do not have a next of kin or they live abroad, you can nominate someone to act as one. This can be done legally through your solicitor.
Just prior to your death - or soon after your donation, at a time when your family is comfortable about it - we will ask for information about your development during your life. This will help the neuroscientists to reach informed conclusions about their findings. Your identity will always be kept confidential.
If your death were known to be imminent, it would help the brain bank team to know in advance so that we can put arrangements in place prior to your death for your donation to go ahead. At the time you die, the team should be quickly informed by phoning our helpline number - 0800 089 0707 – as given on your donor card. Before your donation could be made, your GP, or the doctor attending you, would need to have certified your death.
We aim to collect a donated brain within 24 hours of death but we can accept brains up to 48 hours after death. If a funeral director has been appointed, we will work with them to arrange for your donation to go ahead.
The brain bank team will arrange that:
- Your body is transported to the John Radcliffe Hospital in Oxford or the hospital nearest to the place of death
- A pathologist or post mortem technician at the hospital will carry out the procedure to remove your brain
- Your body will be returned to the funeral director for your funeral to take place
- Your tissue will then be protected from deterioration and stored safely at the brain bank
Will brain donation interfere with my funeral arrangements?
No, your donation will not delay or interfere with plans for your funeral, cremation or burial. The donation procedure is short and your body will then be returned to your family within a few hours.
Will my appearance distress my family when my body is returned to them?
No, your brain would be removed with great care and respect to ensure that your hairline and face would be untouched and your body could be viewed in an open casket.
Immediately after autopsy, some parts of the brain are rapidly frozen, according to an agreed protocol, and stored at -80 degrees Celsius in a locked freezer. Other parts of the brain are treated with fixatives and preserved. Treated and stored in this way, the brain tissue tends to retain the characteristics necessary for research. The tissue itself is given a unique identification number and stored within the brain bank. Details about the donor and their family are kept entirely confidential and held securely on a database in locked files.
To ensure that the most responsible and efficient use is made of this precious tissue, a team of qualified experts reviews and discusses the scientific merits of the research proposals made. This Tissue Advisory Board is made up of experts in autism, neuroanatomy, neurobiology, neuropathology, genetics and neuroscience.
Each donation is distributed to as many as 20 different approved studies to help understand the causes and neurobiology of autism. It can be stored and used for 10 years or more. When tissue is no longer suitable for research it is carefully disposed of, according to the wishes expressed on the consent form. All tissue is treated with respect and consideration of the person who generously donated it.
We cannot provide individualised results because we need a number of donations in order to carry out research and they are each made anonymous. We have to preserve anonymity by law so that each individual’s privacy is protected. However,the next-of-kin will receive updates on request about the progress of the research.
Buddhists believe that the decision to donate organs or tissues is a matter of individual conscience.
The Catholic Church has long supported organ and tissue donation. The decision to donate is seen as an act of charity, fraternal love, and self-sacrifice. On the other hand, organ and tissue donations are not considered to be an obligation.
Although the Church of Christ Science takes no specific position regarding organ or tissue donation, most Christian Scientists rely on spiritual rather than medical means for healing.
Hindus are not prohibited by religious law from organ donation. This is an individual decision.
The Moslem Religious Council initially rejected organ donation by followers of Islam in 1983 but has since reversed its position provided that the donor's written consent is obtained.
Jehovah's Witnesses do not encourage organ or tissue donation, but believe that it is a matter for individual conscience, according to the Watchtower Society, the legal corporation for the religion.
Judaism teaches that every dignity must be extended to the human body in death as in life. If a person specifies in writing that his or her body should be used for science, it is permissible to donate that body for medical education and research.
While no one can speak with ultimate authority for Protestant Christianity because of the diversity of the traditions and the lack of a single teaching authority, most denominations both endorse and encourage organ and tissue donation. At the same time, they stress respect for the individual conscience and a person's right to make decisions regarding his or her own body.