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 ÒmegaÓ 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.
References
1
http://www.nih.gov/science/brain/
2
https://www.humanbrainproject.eu/
3
http://ibro.info/wp-content/uploads/2012/12/A-Brief-History-of-Brain-Archiving.pdf
Also see
MB Graeber
(2014) Banking on the brain. Australasian Science 35(3): 36
MB
Graeber (2011) Ensuring respect for the donated brains of children. PLoS
Medicine Blog (reviewed)