Download Example patient information sheet for tissue bank

DONATING MY BRAIN TO SCIENCE
INFORMATION ABOUT BRAIN DONATION TO THE HUMAN BRAIN BANK FOR
RESEARCH
1. Background
The Human Brain Bank was established in 1994 to enable research to be performed on human
brain tissue from people with neurological diseases. It was founded by Professor Richard Faull
who was asked to undertake diagnostic studies on brains from people with Huntington’s
disease. Subsequently the Human Brain Bank was expanded to include other brain diseases such
as Alzheimer’s disease, Parkinson’s disease epilepsy, stroke and motor neurone disease with the
enthusiastic support of various neurological disease support organisations within New Zealand.
The brain bank continues to receive and utilise human brain tissue for on-going research
projects aimed at finding treatments and cures for brain diseases and for understanding how the
brain functions normally.
2. What does brain donation mean?
Brain donation involves having your brain and related tissues removed after your death and
donating them to the Brain Bank to enable studies into neurological disorders. After death the
brain-removal process takes 45-90 minutes and is done at a hospital mortuary by a skilled
technician. The body is then returned to the family for their own funeral arrangements. The
brain tissue is processed in two main ways to ensure it is optimally preserved for future research
studies. One half of the brain is usually fixed and the other half is frozen fresh. Because the
brain tissue donated is of immense value for research, it is kept indefinitely in the Brain Bank.
Brain tissue will not be returned to the next of kin.
3. Processing, analysis and storage of brain tissue
On receipt of the brain, tissue is processed for pathological studies and for research studies. The
research studies that will be performed on the donated brain tissue include: anatomical studies
to understand the brain structure; pathological studies to understand any disease process that
might have affected the brain; cell culturing to enable drug testing of new and existing potential
drugs to be tested on human brain cells; molecular biology techniques that enable proteins,
DNA and RNA to be studied; genetic studies allow the detection of genetic abnormalities or
gene combinations to be understood that may contribute to a neurological condition. The
genetic studies may include the manipulation of genes in cell culture to overexpress or knockout
genes of interest to neurological diseases. The studies required to achieve a diagnosis (even to
confirm that the brain is unaffected by a disease) may take up to a year. At the conclusion of
these studies the results will be discussed with the next of kin and then a letter containing the
pathology report findings will be sent to you. After the pathology findings have been returned to
the next of kin, no other individual findings from the brain studies will be made available.
However enquiries about our overall research findings can be made.
4. Will all donations be accepted at the time of death?
Brains from people with and without neurological diseases are needed at the Brain Bank. Whilst
we try to accept every offer of brain tissue there are circumstances where for technical, medical
or logistical reasons we are unable to accept the donation of brain tissue. If there is a medical
history of infectious disease or a rapid onset of dementia we may not be able to accept the brain
donation. Also, we must receive the brain within 24 hours in order for the brain to be useful for
research studies.
5. What type of studies will the brain be used for?
Many different scientific techniques can be performed on a donated human brain. The most
common are designed to understand how the brain is wired and what chemical are involved in
making it function normally and what ones become dysfunctional in brain diseases. Also, we are
able to isolate a few cells from certain parts of the brain and grow them in cell culture. The
number of cells kept alive in culture is very small but they do retain some normal brain cell
functions (such as the way one cell communicates with another, but the characteristics like
personality and thinking are not retained) and if the donor had a neurological disease then
dysfunctional characteristics of the neurons can be studied in cell culture. Furthermore new
drugs for neurological diseases can be tested directly on human brain cells that were have been
affected by the disease. We work with genetics experts at the Centre for Brain Research who
seeking answers to how some genes cause diseases while others protect from disease. In
addition, in order to study the effects of specific gene expression on human brain cells in
culture, we undertake studies involving knocking genes out or expressing them at high levels in
cultured human brain cells.
6. Who will use the brain tissue?
Brain tissue will be used by researchers at the Centre for Brain Research to advance our
understanding of the brain, what goes wrong in brain diseases and how the brain can be
repaired. Although the vast majority of brain tissue is used at the Centre for Brain Research, we
do work closely with carefully chosen research groups at other universities and institutes within
New Zealand and overseas; in order to more rapidly advance our studies we may send brain
tissue to them on a collaborative basis to perform specified studies. Also, because our aims are
to develop and test treatments for brain diseases, there may be situations where, for example, a
pharmaceutical company may contract us to test potential drugs for them using human brain
tissue or cells. Whilst this is uncommon we will only engage in such work if there is a high
likely hood of this accelerating the development of treatment options for patients with brain
diseases. Any financial return to the brain bank from such research will be used to fund human
brain research.
7. What will happen to brain tissue that is left over?
Donated brain tissue will be stored indefinitely in the brain bank. However sometimes there is a
small amount of tissue is left over after the dissection of the brain is complete. This tissue will
be cremated and the ashes will be scattered at the University of Auckland memorial plot at the
Mangere Lawn Cemetery.
8. Privacy and confidentiality
All identifiable donor information is kept private and is stored either on a secure database or in a
locked filing cabinet at the Centre for Brain Research on the 5th floor of building 503 at the
Grafton campus. Only brain bank staff will have access to the name and contact details of the
donor. If you decide to withdraw from offering your brain for donation you can phone, e-mail or
write to us at the address below.
9. The procedures for bequeathing brains to the Brain Bank are quite straight forward.
First, at some time before death it is important that the donor (if possible), complete the ‘Offer
Of Brain And Other Tissues For Research’ form after reading the ‘Information About Brain
Donation To The Human Brain Bank For Research’. It is important to discuss this matter with
all relevant family/next-of-kin, since it is only with their approval that the bequest can be
accepted. Your next-of kin will need to witness and sign the form as well. The form is attached
and should be sent to the address below. Please note that at the time of death the next-of kin will
need to sign a ‘Post-mortem consent form’ authorising your brain to be removed for long term
preservation for research and diagnostic purposes.
The Brain Bank staff will then acknowledge receipt of the form and keep the details on file.
If you have any further queries on brain tissue donation, please write directly to:
XXXXX
XXXXXXXX
XXXXXXXX
XXXXXXXXX
E-mail: XXXX
Phone: XXXXXXX
Website: XXXXXXXXX
This research project has been approved by the xxxxx will be next reviewed on XX
August 20XX. Reference XXX/YYY.