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Brain donation for research
We would like you to consider participating in
our brain donation programme. The purpose of this programme is
to provide tissue for research into changes occurring in the
brain with normal ageing and in neurodegenerative diseases
like Alzheimer’s disease, Pick’s disease, Parkinson’s disease
and other similar conditions. We also hope to discover how
genes interact to influence these degenerative disease
processes. You, or a member of your family may have one of
these conditions, or you may participate as part of a
comparison group for donors without neurodegenerative disease.
We hope that you will help by agreeing to donate your brain
for neuropathological research following your death.
We are aware that making the decision to donate tissue after
death is a very personal and difficult one. We appreciate that
the death of a loved one is an emotional and stressful time for
those left behind and will strive to ensure that brain donation
does not add to the stress.
Part of the programme asks for participation in annual
questionnaires concerning your basic health, lifestyle and
family history. Since some information is only available
following examination by a doctor, we ask for permission to
access relevant medical records for details of your clinical
presentation and progression. For some diseases, it will also be
important to obtain DNA for study. We also therefore ask for
your permission to extract DNA from the brain samples for
research. Both the brain tissue and the DNA will be stored for
future detailed analysis. Participation in every aspect of the
research is voluntary and you should not feel obliged to
participate in every, or any, aspect if you do not feel
comfortable about being involved. For people who are unable to
give their own consent, we ask that the senior available next of
kin consider our request on behalf of the person. We cannot
guarantee that you will receive any benefits from this research.
Any information that is obtained in connection with the research
will remain confidential. You may withdraw your consent at any
time without prejudice.
The research outcomes may be published in scientific journals or
presented at national or international conferences. In all
cases, information will be provided in such a way that you or
the person for whom you have provided consent cannot be
identified. However, please be aware that it is not always
possible to report in a way that is completely anonymous to all
family members. The research projects will be carried out
according to the principles of the National Health and Medical
Research Council statement on ethical conduct in research
involving humans. Both the samples and any data from this
research will be stored for at least 15 years. Data will be
stored on a secure database at the Prince of Wales Medical
Research Institute.
The following researchers and institutions are conducting this
research. In addition to the chief investigators, other
researchers may participate under the supervision of the chief
investigators.
Prince Of Wales Medical Research Institute
Prof. Glenda Halliday (Ph 02 9399 1000)
University of Sydney
Assoc. Prof. Jillian Kril (Ph 02 9036 7118)
Brain Donor Programme Coordinator
(Ph 02 9036 7117)
Is brain donation the same
as tissue or organ donation such as corneas or kidneys?
No. The donated brain is not used for transplantation, but solely
for research purposes.
Consequently, separate permission is required for brain donation
for scientific research.
What should I do now to ensure
that brain tissue donation occurs after death?
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Read the information sheet and consent form,
and discuss with your family.
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Complete the Researcher’s copy of the consent
form and return to: Brain Donor Coordinator, Prince of
Wales Medical Research Institute, Barker St, Randwick, NSW,
2031 (a reply paid envelope is provided)
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Complete the consent form (Participant’s or
Next of Kin copy) and keep in a safe place that all family
members are aware of.
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Inform all family members and the Executor of
your will of your wish.
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Inform your General Practitioner.
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If applicable, inform your Specialist Medical
Practitioner (this could be a Neurologist, Geriatrician,
Psychiatrist or Neuropsychologist). If you are suffering
from a brain disease and have not seen a specialist, please
consider doing so.
-
At the time of death, the instructions below
should be followed (also reproduced on the consent form)
What does brain donation involve?
Apart from removal of the brain, brain donation
involves documentation of existing diseases. After receiving
consent to donate for those with or without a
neurodegenerative disease, the Brain Donor Coordinator will
send out a survey requesting your medical and family history,
and a detailed questionnaire to ascertain your cognitive and
motor performance. Thereafter, follow-up surveys will be
posted annually to determine whether there has been any change
in your health status. Your General Practitioner and
Specialist Medical Practitioner (if applicable) will also be
contacted about your medical history on an annual basis.
What happens if the donor
dies in hospital?
If the staff has been made aware of the donor’s wishes,
they will notify the researchers as soon as possible after
death using the 24 hour contact details on the consent form.
A signed and completed death certificate and the consent form
should accompany the body to a mortuary, so that a pathologist
can remove the brain. This procedure will not interrupt the
normal funeral arrangements. If there are any questions or
any problems with these procedures, please contact us.
What to do
when the donor dies
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Notify the researchers as soon as possible
after death using the 24 hour contact details on the consent
form.
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If the donor dies at home or in a nursing
home, the General Practitioner is required to certify the
death and supply a death certificate. If the donor dies in
hospital, the attending doctor will sign the death
certificate.
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Funeral directors appointed by the family are
informed
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The researcher will then contact the funeral
director and make the necessary arrangements for the donor’s
body to be taken to the hospital for removal of the brain.
This procedure will not interrupt the normal funeral
arrangements and will not result in any additional cost to
the family.
The body of the donor is transported to a hospital for brain
tissue removal. Two documents must accompany the body:
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The death certificate
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A signed consent form.
Is there a preferred Funeral
Director?
No. The choice of Funeral Director is entirely up to the
family.
Is there any cost involved?
No. The Brain Donor Coordinator will ask the Funeral Directors
to charge the Brain Donor Programme for any additional costs
involved in transferring the body to the hospital where the
autopsy will be carried out.
What happens to the tissue?
Tissue samples are processed in two main ways
to allow the maximum information to be obtained and all tissue
is held at the Tissue Resource Centre of the Prince of Wales
Medical Research Institute so that scientists either in
Australia or overseas can use the material for ethically
approved research projects. Some of the tissue is frozen so
that it can be used for DNA extraction or biochemical studies.
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 (eg. presenilins, amyloid precursor gene,
tau, alpha-synuclein, parkin) The remaining tissue is fixed in
formalin to preserve it for microscopic examination.
This information allows comparison between DNA and tissue
findings as well as tissue diagnosis and typing.
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. 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.
Privacy and confidentiality
Any information that is obtained in connection with this
study and identifies an individual will remain confidential
and will be disclosed only with permission or as required
by law. Only the researchers identified, or colleagues who
will sign legal agreements not to disclose details, will be
allowed access to any potentially sensitive research information
from these tissue studies. The tissue samples and information
will be kept in a potentially identifiable form (that is,
it will be coded). In the event of withdrawal from the study,
the tissue samples and information will either be de-identified
or destroyed depending on the option chosen.
Use of research information in the future
It is possible that the results of the research may lead to
discoveries and the development of intellectual property which
may be commercialised. However as no information can be
generated from an individual sample, there is no financial
benefit to individual subjects through participation in this
type of research. Sometimes research institutions enter into
collaborations with other research institutions, or private
companies, to get financial assistance to carry out further
research in a particular area. In exchange for the financial
assistance, the other organisation or company may require
commercial rights to the collection of tissue (often referred to
as a tissue bank) developed as a result of research such as
this. If research information is given to another organisation
or company by one of the participating institutions it would be
done in such a way that personal details can not be linked to
samples.
Participation in other possible studies
We may ask you to participate in research using brain imaging,
or we may ask you to consider giving a blood sample for laboratory
studies. We will ask you to consider signing additional consent forms
if these are requested.
We hope that the information provided will help
you reach a decision. However, if you have any questions or if
there are any problems with these procedures, please telephone
the Brain Donor Coordinator on 9036 7117 who will be happy to
discuss these with you further.
Download the
following forms and brochure (pdf format)
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