When can brain donation occur?
The brain will be removed as soon as possible after death.
Why is spinal cord tissue requested?
Some donor programs have approval to also ask if you would like to donate your spinal cord for medical research. This is done because nerve cells involved in helping you move, touch and feel are located in your spinal cord. Some brain diseases also affect these cells found in your spinal cord, brain diseases such as motor neuron disease. Collection of the spinal cord is more invasive and take longer than brain collection alone, and for this reason some people choose only to donate brain tissue after death.
What happens to the tissue?
Tissue samples are processed with the utmost care and respect by the Sydney Brain Bank at NeuRA. All tissue is held by us so that local, national and international scientists can use the material for ethically approved research projects. These projects could include assessment of DNA for genetic variability and modifications.
Is brain donation the same as tissue or organ donation?- Such as cornea or kidneys?
No, the donated brain is not used for transplantation, but solely for research purposes. Therefore, separate permission is required for this type of donation.
Is there anyone who cannot be a donor?
People who have an infectious disease such as HIV, Hepatitis B, Hepatitis C or Creutzfeldt-Jakob disease are unable to participate in the brain donor programs.
The brain donor program can also have other criteria that may exclude some people according to their project aims and ethical approval.
Will the removal of the tissue affect funeral arrangements?
The removal of the tissue is no different from any other surgical operation, and is performed by highly skilled professionals. The donor is always treated with dignity and respect. The donation of brain and spinal cord tissue will not alter the physical appearance of the body and will not affect your decision to have an open casket.
Are there any costs involved?
No, the brain bank coordinator will ask the funeral directors to charge the Sydney Brain Bank for any additional costs involved in transferring the body to the hospital where the donation or removal of the tissue is carried out.
What do the researchers do if they find out sensitive genetic information?
Some people may be concerned about their genetic material being stored or tested in a laboratory. Discovery of a mutation in a person may have implications for his or her children in terms of their risk of developing the disease, their ability to obtain insurance and other issues. In most circumstances the research findings from the study of an individual’s DNA do not have any implications for the person concerned, so there is often no information to be provided to people, or their families, who have given a tissue sample. However, if a disease-causing genetic mutation is identified in a family member and appropriate consent is given, this information will be made available.
Dennis Frost was diagnosed with frontotemporal dementia at age 59. In honour of Frontotemporal Awareness Week, he has shared with us some of the impacts the diagnosis has had on his life. Here, he shares how the music of his youth holds even greater relevance to him now and offers him a pathway to the past once again. It is well […]