Why does the bank need information from the donors' clinical file?
Researchers may sometimes need information about the donor in order to conduct research on the tissue. Information that may be shared includes age, sex, race, diagnosis, health, family history, treatments received and the response to them. This helps researchers find the cause of illnesses, and the Bank deals with this information in a confidential manner.
Where, When and How does the removal take place?
Brain removal must take place as soon as possible – ideally within 24 hours of death. The quality of the research depends on having as short a delay as possible. The removal location will be chosen shortly after death, by the Brain Bank staff. Generally, if a death occurs in a hospital, removal is done there. For a death occurring elsewhere (a private home or a nursing home), the body must be transported to a hospital close to the place of death as quickly as possible. Transport will take place by the funeral home chosen by the family. If the family or the legal representative cannot assume the additional cost of transporting the deceased for brain removal, the costs may be defrayed by the Brain Bank (maximum distance: 75 km).
Incision lines are discrete, and are usually made just above the hairline area, where they will not be visible to the eye. Incisions are fully compatible with currently accepted funeral aesthetic criteria. A twenty-four hour delay must be expected for the removal of the brain, before funeral arrangements can proceed.
What are the advantages and potential risks of donating a brain?
Brain donation helps researchers gain a better understanding of the causes of neurological, psychiatric and other illnesses, and find ways to prevent, treat and cure them. In the future, this research may help many more people suffering from these illnesses. Moreover, the neuropathological diagnosis can confirm or invalidate a clinical diagnosis, which can be very useful for the donor’s family. The greatest potential risk is linked to confidentiality and the dissemination of information from the deceased donor’s medical file.
Will the donor's information be kept confidential?
Yes. The donor's information remains confidential. Research results are not placed in the donor's medical file and no information will be transmitted to the researcher that could in any way disclose the identity of the donor.
How is the brain tissue used?
After the neuropathological diagnosis has been completed, the remaining stored samples are distributed to the researchers who have requested brain tissue
Is brain donation limited to people suffering from mental illness?
No. To understand illnesses, researchers must have access to tissue samples from people afflicted with those illnesses, but they also must compare the pathological samples with those of healthy people. For every pathology studied, scientists must have normal cases for control groups.
Can the brain tissue be used commercially?
The tissue cannot be sold and will be used only for research.
Will the donors' family receive a copy of the research results from the studies in which the donor's tissue was used?
The results of the research conducted with the tissue will not be sent to the donor’s family. The reason for this is that research can take a long time, sometimes years, and many other donors’ samples are used to get results. The research results cannot be given to the Brain Bank either, since the researchers won’t know the tissue donors. With the exception of the brain autopsy results (neuropathological diagnosis), no research results can be share with members of the donor’s family – not for insurance, employment or legal purposes.
What type of research will be conducted with tissue?
Some researchers are working to understand the causes and mechanisms of illnesses by studying cells and proteins. Others are working to find new ways to treat or even cure illnesses. In the future, some research may lead to the development of new products, as well as screening tests or new medications.
Will the donors' family receive a copy of the brain autopsy report?
A donor who signs his own brain donation consent form can also authorize that the brain autopsy report – the neuropathological report – be sent to his family. If a representative signed the consent on behalf of the donor, he will receive a copy of the neuropathological report.
Please note that the current delay to produce a neuropathological report is from four to five years, due to the very low number of neuropathologists working in Quebec. Also, the tissue can usually be used for research only after the Brain Bank has received the diagnosis.
How will results obtained with tissue be communicated?
The results obtained will be used in articles for examination by peer review committees before being published in scientific journals. Donor identity will never be revealed and the articles will contain no information permitting the donor to be identified or traced.
Where do the human tissue samples come from?
In certain cases, tissue from biopsies or from surgery (taken from living donors) can also be used in part for research, provided the donor has been fully informed and has given his consent.
Anyone can consent to having one or several of his organs or tissues removed after his death and to having them preserved for research purposes. If a potential donor is not legally competent to consent, his legal representative (a person legally approved by a court of law, such as a tutor, a curator or a mandatary) or, by default, his spouse or even his closest relative (if there is no spouse) can consent in his place.
The availability of these tissues, be they pathological or not, is of prime importance to the advancement of biomedical learning. Any individual, regardless of his mental and physical health, can donate his brain when he dies, as long as a consent form has been signed. Another important point: brain donation is not one of the options on the back of the Quebec Health Insurance Card.
Could familial genetic research be a possible option?
In exceptional cases, researchers may conduct other studies to look at how genes may transmit some illnesses within families. This research is extremely sensitive, and can have serious repercussions for the whole family – that is why these studies are always very well supervised. They also require direct contact between the research team and the family members who are participating in the study.
Researchers conducting this type of study may potentially ask the Brain Bank to contact families who may be interested in participating. These familial genetic studies, however, cannot be conducted without the donor’s general consent and his representative’s express permission. The representative will have to consent to the specific project, which has been approved and well supervised by the Douglas Institute Research Ethics Board.
Moreover, any preliminary contact the Brain Bank staff may have with the researchers must not reveal the identity of the donor, his representative, or other members of the donor’s family, until having received their express consent.
Families interested in learning more about the option of familial genetic research should contact the Brain Bank Office. Consent forms specific to this purpose will then be sent to family members for their consideration.
How long will the tissue be stored?
The sample will be stored in the Bank as long as the Douglas Institute Research Ethics Board feels that the sample’s scientific value is justified. Meanwhile, the general mode of operation will be evaluated by the same committee at one-year intervals, to ensure that the Bank’s management continues to conform to the latest standards.
When the Bank decides to stop storing the tissue, the tissue will be incinerated by a company that specializes in eliminating biomedical material.
What precautions does the Brain Bank take to protect the donor identity?
It goes without saying that the Bank protects personal information, so that donors’ names, or any other information that may help identify donors, are treated with the utmost confidentiality and conform with the provincial laws in effect.
Research results will not be put in the donor’s medical file and no information will be transmitted to the researcher that could in any way disclose the identity of the donor. With these precautions, it will be very hard to link the research results to the donor (or his family).
Moreover, the information and results will be used exclusively for scientific purposes. These results will be known only by the researchers, and they will be shared only for scientific purposes, without ever identifying who donated the tissue.
Why use human tissue samples?
In biomedical research, any fragment of an organ is called “tissue”. Cerebral tissue comes from the brain. The use of tissue in research can help us better understand the causes of illnesses; it can also help us to predict illnesses, and to find treatments and cures.
The availability of cerebral tissue in research has played a very important role in the understanding of certain neurological and mental illnesses in the last few decades. This has greatly contributed to the development of new treatments that have had a major impact on the quality of life for people suffering from these illnesses. But much work is still to be done.
Unfortunately, when it comes to treating diseases of the brain, the animal model is not always relevant – only human tissue can truly reveal the secrets of certain human mental disorders. For researchers in neurology and psychiatry, access to a resource like the Brain Bank is essential. The use of human brains in research can also help us better understand the effects of other diseases (like diabetes, cancer, and vascular diseases) on the brain.