Can the brain tissue be used commercially?
The tissue cannot be sold, and will be used solely for research purposes. However, some of the research conducted with the tissue may contribute to the development of new products in the future. If these products are patented, it is possible that the researcher or his institution may profit. This profit may be divided between the researcher (and/or his institution) and the Brain Bank, according to the agreement protocol between the parties. Any profit following such an agreement by the institution that manages the Bank will be reinvested in the administrative costs of the Bank. Moreover, a researcher who uses tissue must disclose if a company is financing his project, and if so, if he has a financial interest in that company. The Research Ethics Board must then determine if this poses a conflict of interest for the researcher.
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 Hospital 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 are the research results, involving donated tissue, distributed?
It goes without saying that the results obtained will be treated with the utmost confidentiality. The results will be used to write articles for peer review before going on to be published in scientific journals. The donors’ identities will never be revealed, and the articles will not contain any information that can be used to identify or trace the donors.
How can I reach the Brain Bank Staff?
The Bank employs personnel who are qualified to handle human tissue samples, protect the rights of donors, and ensure that the Bank’s operations uphold the highest possible standards. The director can put one or several people in charge of the Bank, and keeps abreast of how they exercise their responsibility. The person in charge of the Bank, where the tissues are kept, is the Brain Bank coordinator. Outside regular business hours – be it evenings or weekends – a Brain Bank representative is always available. You can reach a Bank employee any time by calling (514) 761-6131, dialing 0, and then asking for the Brain Bank. Quebec hospital pathologists do not work for the Brain Bank, but they will agree to remove a deceased person’s brain if specific consent has been given and if there is an agreement between their institution and the Brain Bank. If you have questions concerning the rights of research subjects (donors), you may contact the Douglas Hospital Ombudsman at (514) 761-6131, ext. 3287.
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.
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
How will the donor’s tissue be used?
Many types of research can be conducted on human tissue. Some researchers study cells and their proteins in the hopes of finding the causes and characteristics of illnesses, while others may choose to focus on finding new ways to treat and even cure illness. In the future, some research may lead to the development of new products, like detection tests or new medications. Researchers may be interested in testing whether some modifications in certain genes can be associated with – or even be the cause of – selected illnesses. Genes are molecules that contain all transmissible information that directs the body’s cellular activities. They determine a person’s hereditary traits such as eye color or blood type.
To understand particular illnesses, researchers must have access to tissue samples from people who were afflicted with those illnesses. But they also must compare these pathological samples with those of a healthy person. For every pathological case studied, scientists must have access to a normal case to use as a control. Finally, researchers must also verify the specifics of their discoveries by comparing different illnesses and disorders.
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.
Is participation voluntary?
The donor’s participation is completely voluntary, and will not be remunerated financially in any way. If a donor agrees, the removed tissue and samples will be used by researchers whose research projects have been approved by their respective institutions’ Research Ethics Boards.
If consent to remove the tissues was given by a donor’s legal representative and/or his closest relative, this person can change his mind at any time. If he no longer wants the tissues to be used for research purposes, he can call the Brain Bank coordinator at (514) 761-6131, dial 0, then ask for the Brain Bank. The tissue and all information related to the donor will then be destroyed.
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.
What are the uses of the Douglas – Bell Canada Brain Bank?
The mission of the brain bank is to provide the scientific community with brain samples that have been preserved under optimal conditions for research that will lead to advances in the treatment, cure and prevention of brain diseases and disorders.
The study of brain tissue is essential for researchers as they strive to understand mental and neurological disorders. Human brain donations allow scientists to study psychiatric and neurological disorders; tissue samples from donated brains give direct access to the cells, proteins and genes of the brain.
In recent years, the Brain Bank has provided well-characterized brain samples to local, national and international mental health researchers and neuroscientists. For instance, over the last five years, an average of 1 000 brain samples were distributed on an annual basis to the scientific community. These figures clearly illustrate the Brain Bank’s importance in research on suicide and other psychiatric disorders for which human brain tissue is difficult to obtain.
What has to be done at the time of death?
If the donor dies in his home, call 911 to report the death. An Urgences-santé doctor will go to the location and give notice of the death. For a death occurring in a nursing home or hospital, the staff will contact a doctor. Then, without delay, you must call the Douglas Hospital at (514) 761-6131, dial (0) and ask the operator to contact the Brain Bank representative. This Brain Bank employee will take charge of the donation process, answer all your questions and ensure that this ultimate gift is treated with respect and efficiency. A Brain Bank representative is always available – 24 hours a day, 7 days a week.
What kinds of research will be conducted with the tissue?
Many types of research can be conducted on human tissue. Some researchers study cells and their proteins in the hopes of finding the causes and characteristics of illnesses, while others may choose to focus on finding new ways to treat and even cure illness. In the future, some research may lead to the development of new products, like detection tests or new medications. Researchers may be interested in testing whether some modifications in certain genes can be associated with – or even be the cause of – selected illnesses. Genes are molecules that contain all transmissible information that directs the body’s cellular activities. They determine a person’s hereditary traits such as eye color or blood type.
To understand particular illnesses, researchers must have access to tissue samples from people who were afflicted with those illnesses. But they also must compare these pathological samples with those of a healthy person. For every pathological case studied, scientists must have access to a normal case to use as a control. Finally, researchers must also verify the specifics of their discoveries by comparing different illnesses and disorders.
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.
Where will the donor’s tissue be kept?
BRAIN BANK
Brain tissue is preserved in the Douglas Hospital Research Centre Brain Bank, which has been created to promote neurological and psychiatric illness studies. Here, tissue is collected, stored and distributed to researchers, who request these specimens as an invaluable part of their work. Established in 1980, it was the first brain tissue bank in Canada. Its creation is due to a major investment, financed almost entirely by the Douglas Hospital Foundation. Today, its main support comes from the Quebec Mental Health and Neuroscience Network (QMHNN) of the Fonds de la recherche en santé du Québec (FRSQ). The Bank is administered by the director, who develops the rules of operation and the financial methods inherent in specimen preservation, in collaboration with the Brain Bank Management Committee, the Douglas Hospital Research Centre and Douglas Hospital administration, and with the approval of the Douglas Hospital Research Ethics Board. The Douglas Hospital and its Research Centre are affiliated with McGill University and the World Health Organization. The Brain Bank also works directly with neuropathologists at Hôpital Sainte- Justine and the Montreal Neurological Institute.
COLLECTION
Brain tissue comes from donors, who have made the donation themselves, or from a family who has done so in their name. Removals take place at the hospital closest to the place of death and according to an established protocol. Samples are collected by a Brain Bank employee and the tissue transport fees are paid by the Bank.
STORAGE
Once sent to our laboratories, part of the brain is rapidly frozen, according to a specific protocol, and stored at -80°C in a special freezer linked to a central surveillance system. Treated and stored in this way, the human brain tissue tends to retain the characteristics necessary for research. Another part of the brain is set in formaline and is used for the brain autopsy to establish the neuropathological diagnosis of the donor. The results of this exam take the form of a report, which is sent to the donor’s family, if the donor has so consented. This neuropathological exam is part of the Bank’s diagnostic arm and not the research arm.
DISTRIBUTION
After the neuropathological diagnosis has been completed, the remaining stored samples are distributed to the researchers who have requested brain tissue. The quality of tissue that comes from the Bank has enabled many scientists throughout the world to discover new data that has helped improve the prevention and treatment of various neurodegenerative diseases. The more access researchers have to human cerebral tissue, the more major discoveries may be made that could have an impact on the sufferer’s quality of life.
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.
When it comes to research into the human brain, a brain autopsy is invaluable to establish or confirm the clinical diagnosis; that is why it is mandatory. However, a general autopsy is not mandatory. The Brain Bank assumes the costs related to brain removal and brain autopsy, but it cannot be accountable for costs related to the general autopsy if the treating physician or a family member has requested it. However, the Brain Bank staff can arrange for the brain removal and general autopsy to occur in the same place.
Who will have access to the tissue?
The Brain Bank was created specifically to provide precious brain tissue samples to the international scientific community. Historically, Quebec researchers have benefited most from this resource because of their proximity to the Bank. Any qualified researcher from the public sector, however, can get tissue, on the condition that his research protocol is approved by his institution’s Research Ethics Board. As for private sector research centres, the Douglas Hospital Research Ethics Board must specifically approve requests before any tissue is sent.
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.
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.
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 of several 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.
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.