Brain tissue arrives at the Sydney Brain Bank from around Australia and is processed and stored in different ways as a means of offering the greatest options for researchers who may want to utilise the tissues for their experiments. Specifically, some of the tissue is frozen so that it can be used for DNA extraction or biochemical studies. This is done in the shortest time period possible to ensure viability of most neurochemicals, DNA and RNA. If DNA is extracted, a number of samples are prepared and stored for future testing. For participants with a strong family history of disease, the DNA may be screened for genes in which rare mutations have already been associated with neurodegeneration. The remaining tissue is fixed in formalin to preserve it for microscopic examination.
All brains undergo thorough neuropathological examination to determine a final diagnosis. This is provided to the donors’ next-of-kin and medical practitioners.
All tissue and clinical information given to researchers is de-identified.
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. Very occasionally, this kind of research uncovers non-paternity or non-maternity of a presumed natural parent. It is not normal practice to disclose this information if it is found. However, if a disease-causing genetic mutation is identified in a family member and appropriate consent is given, this information will be made available.
