Frequently Asked Questions About Brain Donation

Donations are obtained from individuals who register before death and/or from next-of-kin who authorize a postmortem donation. Eligibility for postmortem donation of brain and other tissues is determined by trained staff at the research facility. Research staff notification of a request for postmortem donation may come from surviving family members, treating physicians, hospital systems, donor services, organ and tissue banks, disease advocacy groups, specialized residential facilities and/or collaborating medical examiners.

For more information, please reach out to the DECBB coordinator:

(519) 646-6100 ext. 42398

CognitiveNeurology@sjhc.london.on.ca

Trained individuals of the biobank request and document consent for brain tissue donation from the deceased’s next-of-kin or legally authorized representative. Individual requests for release of medical records, questionnaires and/or interviews with individuals knowledgeable of the deceased are obtained as per brain biobank policies. All samples (blood, tissues, cerebrospinal fluid) and data will be used by researchers to investigate and learn more about the disease.

A brain autopsy is performed to confirm clinical diagnosis following brain donation. Typically, the whole brain and spinal cord are removed and prepared for analysis and future research. No disfigurement occurs as a result of this procedure. The family can plan for an open casket or other form of traditional funeral arrangements and the brain donation process will be undetectable. The brain donation autopsy procedure will not delay or interfere with the family's plans for a funeral, cremation, or burial. Our brain bank works closely with families and funeral homes to ensure that donation does not interfere with funeral arrangements.

Donation is voluntary and has no financial benefits. However, many donors and their families share a common satisfaction knowing they are contributing to the health and well-being of others affected by similar brain disorders. Brain donation makes the research and discovery of cures to neurological diseases possible which will benefit future patients. The London Brain Biobank can assume all financial responsibility for transportation of the eligible deceased donor from the location of demise to the designated pathologists and back to the funeral home. Please note that funeral expenses remain the sole responsibility of the family.

The identity of each donor remains strictly confidential. Specifically, research results are not written in the patient's medical file or chart and the donor’s name will also not be included in any information sent to researchers. All distributed samples are coded with brainbank IDs to ensure donor anonymity. Researchers using these de-identified samples through the London Brain Biobank will not return any scientific results to the next-of-kin or family members of donors.

No it does not, organ donation and brain donation are separate matters. The sticker on your driver’s license does not give brain banks permission to receive a brain.

Yes, a brain donation does not make a participant ineligible for a whole body donation. Whole body donations usually require pre-registration with a medical school. An academically housed body donation program may accept a donation despite a previous brain donation. Please inquire with the program/study coordinator regarding this matter prior to registration.

Brain donations should be performed within 24 hours from the time of death in order to ensure optimal preservation of the tissue and maximize the research value. If death is imminent, please contact the study coordinator.

If you or a family member is interested in registering as a donor, please contact Dr. Elizabeth Finger’s study coordinator at (519) 646-6032. We are happy to answer any questions and concerns you may have with regards to the donation.

The sample will be stored in the Bank as long as the Western Human Research Ethics Board feels that the sample’s scientific value is justified. In the meantime, the general mode of operation will be evaluated by the same committee during yearly intervals, to ensure that the Bank’s management continues to conform to the highest standards.

The results and data will be used to present data at scientific meetings and write articles for peer review before going on to be published in scientific journals. The donor identity will never be revealed and the articles will contain no information permitting the donor to be identified or traced in any way.

Yes, the donor’s participation is completely voluntary. If at any point the donor or his/her family member wishes to withdraw the consent the may do so by simply contacting the coordinators of the bank. The samples and all related information to the donor will then be destroyed as per the brainbank policy.

The goal of the brain bank is to provide the scientific community with clinical data and brain samples that have been preserved under optimal conditions for research that will lead to advances in finding a treatment, cure or prevention of brain diseases and disorders. The study of brain tissue is crucial for researchers as they strive to understand mental and neurological disorders. Brain donations help researchers to study psychiatric and neurological disorders. The tissue samples from donated brains also help to study the cells, proteins and genes of the brain.

​​​​​​Many kinds of research can be conducted on human brain tissue. Some researchers can 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 discoveries, such as early detection tests or new medications for treatment. Researchers could be interested in testing whether some modifications in certain genes can be associated with – or even be the cause of – selected illnesses. Genes are the basic molecules that contain all transmissible information that directs the body’s cellular activities. They determine a person’s hereditary traits; for example, eye colour or blood type.

Brain tissue and blood and CSF is preserved in the London Brain BioBank located at Robarts research institute. Samples are stored and distributed from here to researchers, who request specimens. The BrainBank is administered by the DECBB steering committee, which includes neurologists, neuropathologists, and patient family representatives. The DECBB steering committee develops the rules of operation and the financial methods inherent in specimen preservation, in collaboration with Western University and Lawson Health Research Institute affiliated Hospitals, and with the approval of the Western Research Ethics Board.

Brain tissue usually 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 LHSC University hospital according to an established protocol. Samples are transported by a Brain Bank employee. Once transferred to our bank, frozen samples are stored at -80°C in a special freezer linked to a central surveillance system. Treated and stored in this way, the samples tend to retain the characteristics necessary for research. A portion of the brain is fixed in formalin 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 had consented. The neuropathological exam is part of the clinical evaluation of the LHSC Department of Pathology, and not the research arm. After the neuropathological diagnosis has been completed, the remaining stored samples are available and can be distributed to the researchers.

The Brainbank was created specifically to provide precious brain tissue samples to the local and international scientific community. A qualified researcher from the public sector may access the tissue on the condition that their research protocol is approved by their institution’s Research Ethics Board. As for private sector research centres, the Research Ethics Board must specifically approve requests before any tissue is approved and sent.

Sometimes researchers need information about the donor in order to conduct research on the tissue. De-identified information that may be shared includes age, sex, race, diagnosis, health, family history, treatments received and the response to them. The Brainbank deals with this information in a confidential manner.

Yes, the donor’s information remains confidential. Research findings 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.

Clinical brain autopsy reports can be made available to the next of kin authorizing the autopsy, from the patient's treating physician(s).