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FAQ DONOR BROCHURE
脑捐献常见问题解答
1
Why should I donate my brain to neurological research?
More than 50,000 Singaporeans have a neurological condition and numbers are projected to increase significantly due to Singapore’s ageing population. The symptoms experienced by people living with neurological conditions, such as Parkinson’s and Alzheimer’s disease, are a result of damage taking place within their brain and/or spinal cord. Although there are a number of different ways to conduct research on these conditions, being able to study the very tissue that is damaged in each disorder is vital to the development of better treatments.
The Brain Bank Singapore retrieves and stores donated brain tissue and makes samples of the material available to scientists carrying out research on these conditions. The donation of tissue will further our understanding of neurological disorders and is an essential contribution to the development of effective treatments for these conditions.
2
Who can register as a donor?
Healthy individuals as well as those with neurological disorders above 21 years of age can all register on our donor scheme and bequeath tissue for research. Samples of tissue from people that did not have any brain condition are of crucial importance since they allow scientists to compare damaged tissue with the healthy brain tissue. Please contact us if you have any specific queries.
3
How do I become a brain donor?
First, you should read all the information on our website, or literature given to you, and discuss the matter with your family. If your family has not raised objections and you would like to donate your tissues to the Brain Bank Singapore for research, then you will need to fill in and sign the relevant Informed Consent Form. Once registered as a donor, you will receive a Brain Bank Singapore Donor card. Do carry this card with you at all times so that in an emergency, hospital staff will know immediately of your desire to donate your brain to the Brain Bank Singapore.
4
What does my next-of-kin need to do?
The tissues for donation are removed after the registered donor has died. As tissues of the brain and spinal cord change very quickly after death, material that has been removed from the body within 24 hours of death is of greatest value to research. However, tissue retrieved up to 48 hours after death can still be used in some research. We endeavor to ensure that all arrangements are kept as straightforward as possible at such a difficult time. Since it is vital that we are contacted as soon as possible after the donor’s death, preferably within a couple of hours, we would request that your next of kin or legal representative and health care professionals are aware of your wish to donate tissues and are willing to contact the Brain Bank Coordinator after your death. In the circumstances where the donor does not have the mental capacity to give consent, it can be given by the next of kin or legal representative.
5
What if I do not wish to proceed or change my mind once I have registered?
We understand that the donation of tissue is not right for everyone. Should you change your mind at any time after consenting and decide to withdraw your consent, simply contact the Brain Bank Singapore coordinator via telephone or email. The coordinator will return your original consent form and remove your details from the computer database. If you have any queries either whilst deciding whether to consent or after you have given consent, please contact us.
6
If I donate my brain, can I still have an open casket viewing?
Yes. As brain retrieval is performed from the back of the head, there is no visible effect on the appearance of the body.
7
Under which circumstances will brain donation not be possible?
On rare occasions when it is apparent that it will not be possible to retrieve and preserve the tissues within 48 hours due to unforeseen circumstances, we will not go ahead with the tissue retrieval. This is because irreversible damage occurs in tissue samples after 48 hours and that the brain tissue will not be useful for research.
We may not be able to proceed with retrieval of tissue in the event of:
Presence of systemic infectious diseases that present a severe health risk to our staff;
If death has to be certified by a coroner;
Too long a delay in being informed of death (close to or over 48 hours);
Inability to arrange retrieval within a specified time for other reasons.
8
Will my personal information be kept confidential?
All consent forms and related paperwork are stored in secure databases. Personal details of our donors are never divulged to researchers receiving tissue or anyone outside the Brain Bank Singapore team. The databases that store details of individuals who have registered as donors and those who have donated tissues, are on a secure computer not linked to the internet, which can only accessed by Brain Bank Singapore staff who are looking after the donation process.
9
What types of post-mortem human tissues are collected?
Since neurological disorders affect the brain and/or spinal cord, these tissues are of most use to research. The cerebrospinal fluid (CSF) that surrounds the brain will also be collected as it may also provide useful information. In order to explain why the damage is restricted to the brain and spinal cord, scientists may wish to compare this organ with other tissue, for example, muscle. Therefore, we will remove small samples of gut, spleen, lymph nodes and peripheral nerves if consent for this is given and it would prove useful for research into particular neurological conditions.
10
How are human tissues stored at the Brain Bank Singapore?
Brain tissues are optimal for research when they are retrieved within 24 hours after donor’s death because brain tissues are sensitive to the lack of oxygen and glucose and will rapidly degrade. They are preserved by rapid freezing which retains most of their characteristics or by chemical treatment.
11
How are human tissues used in research?
Brain tissues from both patients who suffer from neurological disorders and healthy individuals will be used for laboratory-based studies to identify new drug targets or processes by studying genetic changes, protein changes, damage to neurons, presence of viral infection, presence of toxic molecules, and many other experimental approaches.
12
Which government body and legislation regulates the work of Brain Bank Singapore?
The Brain Bank Singapore is registered as a Human Tissue Bank regulated by the Human Biomedical Research Act (HBRA 2015) and Human Tissue Framework (HTF) of the Ministry of Health (MOH).
13
Are you already signed up as a whole body donor under the MTERA (Medical Therapy Education and Research Act)?
The Brain Bank Singapore is regulated under the HBRA (Human Biomedical Research Act) and is a separate organ donation programme from the whole body donation. The main purpose of each of the donation programmes in Singapore are as shown.
Brain Bank Singapore (Opt-In)
MTERA (Opt-In)
HOTA (Opt-Out)
Legislation
Human Biomedical Research Act
Medical Therapy Education Research Act
Human Organ Transplant Act
Mental Capactity
Yes and No*
Yes
Yes
Informed Consent Form
BBS Consent Form
MTERA Pledge Form
Inclusive ≥ 21 years old
Organs
Brain and Cerebrospinal fluid (CSF)
Any organ / body part (e.g. skin, bone) / whole body
Heart, kidneys, liver and corneas
Purpose
Research for neurological disorders
Transplant, Education and Research
Transplant
Donation
After death
After death
After death
Post-Mortem Delay
24 – 48 Hours
Not Applicable
As soon as possible
Brain Bank Singapore (Opt-In)
Legislation
Human Biomedical Research Act
Mental Capactity
Yes and No*
Informed Consent Form
BBS Consent Form
Organs
Brain and Cerebrospinal fluid (CSF)
Purpose
Research for neurological disorders
Donation
After death
Post-Mortem Delay
24 – 48 Hours
MTERA (Opt-In)
Legislation
Medical Therapy Education Research Act
Mental Capactity
Yes
Informed Consent Form
MTERA Pledge Form
Organs
Any organ / body part (e.g. skin, bone) / whole body
Purpose
Transplant, Education and Research
Donation
After death
Post-Mortem Delay
Not Applicable
HOTA (Opt-Out)
Legislation
Human Organ Transplant Act
Mental Capactity
Yes
Informed Consent Form
Inclusive ≥ 21 years old
Organs
Heart, kidneys, liver and corneas
Purpose
Transplant
Donation
After death
Post-Mortem Delay
As soon as possible
* Next-of-kin or legal representative may complete consent on behalf of individuals lacking mental capacity.
The preservation process of the brain organ for optimal use in scientific research requires time sensitivity to freeze the brain tissue in -80°C for long-term storage of at least 10 years. This is also the reason for the need of family members and healthcare professionals to inform the Brain Bank Singapore as soon as possible after the donor’s death so that we can make the arrangement in the consideration of this grief.
The pledge for whole body donation does not include brain donation to the Brain Bank Singapore for future research purpose. Another consent form, which is specific for the Brain Bank Singapore, will need to be completed.
If you are a
dual donor (BBS and MTERA)
, here is a flow diagram of what happens
generally
upon receiving the emergency notice. There may be unique circumstances present in each situation.
Emergency call about donor’s death
0.5 Hour
Documents check and arrangement with National Organ Transplant Unit
1 Hour
1 Hour
Retrieval of whole brain and other consented tissues
1.5 hour
Transport of donor’s body via casket company to retrieval site
3 Hours
3 Hours
The remaining whole body will be kept by the relevant Institution for medical teaching
~ 2 to 3 Years
Ceremony for appreciation and farewell
Location & Hours
Brain Bank Singapore
Lee Kong Chian School of Medicine
Nanyang Technological University
Clinical Sciences Building (Novena)
11 Mandalay Road
Singapore 308232
Operating Hours
Monday - Friday: 8:30 am to 5:30 pm
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