A Precious Gift: The Need For More Advanced Brain Banks
by Professor Manuel B. Graeber MD PhD FRCPath, Neuropathologist
Today's cultural and technological achievements are the product of the human brain. Understanding how this organ functions is widely considered the ultimate scientific frontier. Two recent “mega” science projects, which are unprecedented in terms of ambition and scale, reflect this appreciation. One is funded by the US government and will focus on the mapping of human brain activity (1). The other project was launched by the European Union and has the more abstract goal of modeling the human brain in the computer (2). These projects are supported by a total combined research budget of more than $4 billion.
Novel and important scientific hypotheses are expected from this research, and many of them will require validation at the molecular, cellular and tissue levels before they can be translated into usable knowledge. This is particularly true for the development of diagnostic tools and treatment options. Consequently, a significantly increased demand for human brain tissue will likely ensue, for both healthy and diseased tissue and, importantly, human brain tissue that is still alive.
The provision of living human brain tissue represents a most difficult area that requires specific consideration (see below). But even obtaining suitable brain material from donor autopsy cases is not at all trivial.
Human brain banks have been around for a number of years (3) but most have to struggle because funding shortages represent a constant threat. One suggested way of funding brain banks has been through close collaboration with industry, drug companies in particular, but this is not a viable option because the primary interest of a company is financial profit and not the fulfillment of a brain donor's wishes. However, there is nothing wrong with industry collaborations if high ethical standards are maintained. This is where charities can have an important function as mediators to prevent conflicts of interest. Another approach tried to fund brain banks is through grants given to researchers that enable or complement in-house research. This approach is problematic if co-authorship of brain bank staff on publications becomes a requirement for tissue users. Such pricing fundamentally interferes with a tissue collection's core mission of maximizing access for researchers, i.e. it is the opposite of what donors want.
The question when tissue is obtained, i.e. post mortem or from the living, matters both scientifically and ethically. Patient protection needs to be absolute at all times and no tissue must be obtained without consent. Only donated post-mortem and disposed of surgical tissue can be used. It goes without saying that the fact that living tissue is saved from disposal, e.g. during the removal of a brain tumor, must not have an influence on the planning of the neurosurgical procedure and must not compromise the quality of the diagnostic evaluation of the tissue. Surgeons should not be the custodians of the tissue they remove to avoid even perceived conflicts of interest. Establishing safe practices that have the potential to last is the more important as brain tissue banking needs to be built systematically and research progress can be slow. The development of a vision for brain banking by politicians should be helpful therefore.
Patients are not like consumers who have a choice. They are caught with their disease and those who give tissue freely trust that the best possible use will be made of their gift. This trust between the donors and the receiving tissue bank must not be breached. It is important to understand that this foundation of immaterial values distinguishes brain banks from ordinary banks.
In conclusion, it seems highly advisable to set up brain tissue repositories with public funds. Site visits by independent and internationally recognized brain tissue specialist should be organized for quality assurance purposes. Accreditation of human brain tissue collections with the International Society of Neuropathology has been suggested earlier (for references see 4), and professionally trained personnel (4) who are capable of feeding data back into the national healthcare system should be appointed to lead brain banks.
MB Graeber (2014) Banking on the brain. Australasian Science 35(3): 36