Frequently Asked Questions
What happens when the time comes to donate?
What are the religious views on brain donation?
About Brain Research
What research is being done and what are the benefits?
With brain tissue, researchers can go far beyond the limits of other technologies and study autism at a cellular and molecular level. It is possible to extend the current imaging studies of the brain in living individuals to investigate particular pathways and even look at the individual neurons of the brain to help understand both normal and abnormal neurodevelopment. What is learned about neurodevelopment can be applied to day-to-day educational programmes to make the most of developmental periods and the brain's capacity to change (plasticity). What is learned about molecules and neurotransmitters in the brain can lead to new drug treatments. A better understanding of the genetics of autism increases our ability to diagnose autism and assess the risks of inheritance.
One of the key areas of human tissue research is into so-called "control" tissue, so that brain tissue of people from the general population who have not had autism or epilepsy, and of those who have had epilepsy but not autism, can be investigated. This enables us to compare the development of the brains of affected and non-affected individuals and it is vital to have access to this range of brain tissue if scientific knowledge is to advance.
About Brain Donation
What is meant by brain donation or brain tissue donation?
What information will I need to provide?
What information will I receive?
Will I be able to have information on what research reveals about the brain of my family member?
Can I be an organ donor and a brain tissue donor?
Does registering as a donor mean that medical treatment will be altered?
What if I change my mind and no longer wish to donate?
What happens to brain tissue after it has been donated?
What is meant by brain donation or brain tissue donation?
Autism is a complex disorder and it is likely to involve changes in many different parts of the brain. Therefore an important part of performing brain research is to be able to examine all parts of the brain which would mean retaining the whole brain for research.
It is also important to perform research on specific parts of the brain and then we use samples of tissue removed from the brain.
What can I do right now?
You can register your general support for the research. Or you can, if you wish, pre-register as a potential brain donor.
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.
Pre-registration as a donor does not make a donation automatic at the time of death, but it helps to make your wishes known to your family. It is always best to have discussed your wishes with your family in advance.
Who can register?
Our research focuses on:
- people within the autism spectrum or their family members
- people not affected by autism but who are affected by epilepsy
- people who have other neurodevelopmental and related disorders
- individuals without autism or epilepsy
Donations from people who do not have autism are very important since this allows comparisons to be made between the brains of affected and non-affected individuals. Some 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.
What information will I need to provide?
After the donation, at a time when the family is comfortable about it, the clinical co-ordinator for the Brain Bank for Autism will contact the next of kin to learn as much as possible about the donor and his or her specific symptoms and other medical conditions. This insight into the problems experienced by the donor will help scientists make informed conclusions about their findings on brain tissue.
What information will I receive?
Our view is that, if requested, donor families should be fully informed about the research carried out and many express a strong desire to join in the research effort. The next-of-kin will receive updates on research progress and various reports, e.g., neuropathology reports, on request.
Will I be able to have information on what research reveals about the brain of my family member?
We cannot provide individualised results of research because in order to carry out research you need a number of cases and they are each made anonymous. So the research yields results that apply to a group of cases. This anonymity is something we have to undertake by law and it is intended to protect individuals from being identifiable, to protect their privacy.
Can you be an organ-donor and a brain tissue donor?
Currently, you are advised to register as either one or the other form of donor. But please note that your donation will not automatically occur even if you have registered your pledge to donate. If you wish to donate to the Brain Bank for Autism, please discuss this with your next of kin so that your wishes are known and can be carried out if you were to die.
How is a donation made?
This can be discussed at any time with the Brain Bank for Autism by calling our free-phone helpline on 0800 089 0707. In the event of a death, a family member or healthcare professional would need to contact us on this number to discuss the potential donation. The next of kin gives fully informed consent for the donation to go ahead around the time of death. This involves consulting with the next of kin in a compassionate way. The process of donation will be fully explained and discussed. Informed consent must be given before brain tissue is removed from the donor. At every step in the process, there is opportunity to ask questions so as to make a fully informed decision about going ahead.
Does registering as a donor mean that medical treatment will be altered?
Absolutely not! Registering does not mean that your doctor can or would in any way alter the patient's medical care.
What if I change my mind and no longer wish to donate?
When a potential donation is registered with the Brain Bank for Autism, this is not binding. If you were to withdraw from the programme, please contact us at 0800 089 0707. Formal consent must be sought anyway at the time of death. The next-of-kin can also subsequently withdraw at any time after a donation has been made and the brain and tissue sample would be returned or disposed of according to their wishes as indicated on the consent form. In this case, it would be helpful to directly inform the brain bank of this decision.
What happens to the brain tissue once it has been donated?
Immediately after autopsy, the brain tissue will be transported to the brain bank at Oxford Radcliffe Hospital (University of Oxford). Some parts of the brain are rapidly frozen, according to a specific protocol, and stored at -80 degrees Celsius in a locked freezer. Other parts of the brain are treated with different 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.
In order to ensure that the tissue is used responsibly and efficiently, a team of qualified experts review and discuss the scientific merits of research proposals that will involve use of this precious resource. This Tissue Advisory Board is made up of experts in autism, neuroanatomy, neurobiology, neuropathology and neuroscience.
Each donation is distributed to as many as 20 different approved studies to help understand the causes and basic neurobiology of autism. The researchers will not know the donor’s identity and the donor will never be identified by name in any publication.
About consent and next of kin
When is consent to a donation given?
When is consent to a donation given?
The next-of-kin will be required to formally give consent round about the time of death. But whenever you take this important decision, whether for yourself or your child, you are more likely to get the support you need when you discuss your wishes with those who are close to you. If you intend to donate your own brain tissue, we could provide draft letters of intent for you to give to your family or friend to explain your intention to donate. This way, they know your wishes and will not have to try in an emergency to guess what you would decide. We always encourage people considering brain donation to openly discuss this and make their wishes known to their family. In law ‘intent’ is not ‘consent’ and formal consent is required at the time of death.
Who is the next of kin?
We will observe the order of qualifying persons as laid out in the Human Tissue Act (Section 54(9) :
- 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
Although guardians play an important role in medical and other legal processes, family members or a friend of long standing in the order listed above, have the legal right to give permission for brain or tissue recovery from the deceased.
What happens when it is time to donate?
Would it affect the research if the body is embalmed after death?
Who will carry out the brain autopsy and when will it happen?
Does brain removal mean that there cannot be an open casket and/or funeral?
Will I have to alter funeral arrangements? Are there costs?
How soon should the brain bank be called after death and what happens after the brain bank is called?
We need to be called at 0800 089 0707, as soon as possible after death, ideally within 24 hours. The specialists at the brain bank will arrange for the donation to be carried out by a pathologist in your area. The recovery of the tissue will be done in the nearest hospital equipped for the procedure. If death has occurred in a hospital, tissue retrieval is usually completed within a few hours and the body is then released to the funeral home for care. If death occurs at home or elsewhere, tissue recovery can occur in the hospital or funeral home. A coroner would be involved in cases of sudden or accidental death, and an autopsy may be required. In any event, the associates at the brain bank work with funeral directors, medical examiners and pathologists to ensure that arrangements you request are carried out. The body is treated with respect and compassion by the doctors and scientists involved in this process.
Would it affect the research if the body is embalmed after death?
Since embalming treats the body with formalin, it would start to 'fix' the brain, as researchers intend to do after its removal.
Normally just one half of the brain would be treated in this way, so embalming does restrict the use which research can make of the tissue and it is better that brain tissue is removed before any embalming is carried out.
Who will carry out the brain autopsy and when will it happen?
Brain tissue is recovered under the supervision of a neuropathologist. Donation takes place according to a strict protocol following the signing of an autopsy permit by the patient, legal next of kin, or guardian.
The pathologist will need to remove the brain within 48 hours of death if at all possible as tissue starts to deteriorate when blood is no longer flowing through it. However, it may be possible to accept tissue that has been removed within 72 hours. Depending on the complexity of sampling, most brain autopsies take about 45 minutes.
Does brain removal mean that there cannot be an open casket and/or funeral?
No! The removal of the brain does not cause disfigurement and does not interfere with funeral arrangements or viewing of the deceased. Incision lines are discrete, and in the average individual, beyond the hairline and not visible. Incisions are fully compatible with funeral aesthetic criteria.
Will I have to alter funeral arrangements? Are there costs?
No to both questions! Brain and tissue recovery does not interfere with having an open casket or with other traditional religious funeral arrangements. The Brain Bank for Autism will pay for procedures directly relating to obtaining or transporting tissue. Your family will incur only the usual expenses of a funeral and burial.
What are the religious views on brain donation?
Buddhism
Buddhists believe that the decision to donate organs or tissues is a matter of individual conscience. While there is no written resolution on the issue, Reverend Gyomay Masso, president and founder of the Buddhist temple of Chicago, says, "We honour those people who donate their bodies and organs to the advancement of medical science and to saving lives."
Catholicism
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. For this reason, the free and informed consent of the donor or the donor's family is imperative. The Church also specifies that in order to show respect for human life, respect for the Author of human life, and respect for the person who once existed, dignity and reverence are due to the remains of every being.
Christian Science
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.
Hinduism
Hindus are not prohibited by religious law from donating their organs. This is an individual decision.
Islam
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 Witness
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
Judaism teaches that every dignity must be extended to the human body in death as in life. It is the consensus of rabbinical opinion that an examination after death may be performed that will benefit the treatment of others already afflicted with a life-threatening illness. Similarly, most rabbinical authorities concur that an examination after death may be performed on a person who dies with a genetic disease in order to save the lives of children who may be afflicted with the same disease, even if the children whose lives will be saved have not yet been born.
One of the provisions of the Israeli legislature's Anatomy and Physiology Act contends that 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.
Protestantism
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.
The Lutheran Church-Missouri Synod was the first denomination to encourage organ and tissue donation by adopting a supportive resolution and by distributing the largest ever number of organ donor cards through an issue of Luther Witness magazine
General Questions
Should family members also become brain donors?
Can I be registered in two tissue programmes? What about whole body donations?
How do the regulations on data protection and confidentiality apply to the programme?
Should family members also become brain donors?
Yes! As relatives of an individual with autism, your brain tissue is very important for comparative studies. Crucially, research to find out the differences caused by autism depends on being able to make comparisons with brain from individuals not affected by autism. Even parents or grandparents who are older than 65 years (the maximum age of donors who are not affected by autism or epilepsy), are strongly encouraged not only to register as donors themselves, but also to try to enlist the rest of their family to support the research by registering with the programme.
Can I be registered in two tissue programmes? What about whole body donations?
If you are already involved with another tissue programme, it is also possible to participate in the Brain Bank for Autism. Please make the pathologist aware of this and provide our free-phone helpline number so that the donations can be co-ordinated. However, some whole body donation programmes do not allow brain donation to a separate programme like ours – so, you would then need to make a decision about what type of research you most want to support.
How do the regulations on data protection and confidentiality apply to the programme?
Under the Data Protection Act, we have to speak directly to a potential adult donor before they can be named as registered to donate their brain to the programme. Parents can register with us their intention to make a donation on behalf of their child.