Our mission and ethics
Brain tissue is a precious resource in the process of scientific discovery. It concerns us all that the causes of a wide variety of disorders and conditions are found, leading to better interventions for people affected by them. Yet few realise that it cannot be achieved without using human tissue. The complexity of the human brain cannot be replicated by test-tube systems.
Research is needed to understand the causes and biological basis of autism. The developing brain is altered in autism but scientists do not know how or why. Such critical research is hindered by the scarcity of human brain tissue.
By increasing the amount of brain tissue available for research, we increase scientists' ability to find answers - which could lead to the development of better interventions to improve the quality of life of those affected by autism.
The Brain Bank for Autism and Related Developmental Research (BBA) operates in the UK under strict legal and ethical regulations in accordance with the Human Tissue Act and with the approval granted by a Research Ethics Committee. The BBA oversees the distribution of brain tissue to scientists for research projects. Tissue is distributed to researchers submitting written requests and approval following peer reviewed by the Tissue Advisory Board which is made up of qualified experts in autism, neuroanatomy, neurobiology, neuropathology and neuroscience. The Board ensures that the tissue is used responsibly and efficiently by assessing the scientific merits of research proposals that will involve use of this precious resource.
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.
In the event of a death, a family member or healthcare professional would need to contact the brain bank on our free helpline 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. When the brain bank is contacted following a death, the staff work with funeral directors, medical examiners and pathologists to ensure that arrangements requested by the donor and/or next of kin are carried out. The body is treated with respect and compassion by the doctors and scientists involved in this process.
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.
When a potential donation is registered with the Brain Bank for Autism, this is not binding. A registrant can withdraw from the programme at any time by contacting our helpline 0800 089 0707. Formal consent must be sought 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.
If donor families request information about the research carried out, this will be made available to them. The next-of-kin will receive updates on research progress and various reports, e.g., neuropathology reports, on request.