Schizophrenia: A Handbook For Families

Table of Contents

Appendix II

The Canadian Brain Tissue Bank

As advances continue to be made in research laboratories throughout the world, more and more people are beginning to appreciate the enormous potential of post-mortem human brain tissue research. What the public does not seem to realize, however, is that although promising results are being reported and our understanding of severe neurologic and psychiatric disorders is improving, more significant progress is actually being delayed because of a scarcity of brain tissue donations.

The Canadian Brain Tissue Bank was established in 1981 in order to support medical research through the collection, storage, and distribution of brain tissue to interested scientific investigators. Such research is concerned with the causes, treatments and eventual cures for the many psychiatric and neurological disorders affecting so many people today. These include schizophrenia, Alzheimer's disease, dystonia, epilepsy, among many others.

Research over the past decade has shown that the study of human brain tissue is essential to increasing our understanding of how the nervous system functions and consequently in preventing and alleviating these illnesses. Most recently, post-mortem human brain research played a significant role in the development of a genetic test for Huntington's disease and a treatment for Parkinson's disease. Additionally, human brain tissue is necessary because several serious neurologic and psychiatric conditions affect only humans and therefore, animal models are not relevant.

For comparative purposes, brain tissue is needed from healthy individuals, as well as from those who died with a neurologic or psychiatric illness. There is also a critical need for relatives of people with genetically inherited disorders to donate their brains after death. Samples of DNA are kept from all tissue to help in future genetic testing.

What You Should Know About Brain Donation

• Your next-of-kin must verify your intent to donate at the time of your death.
• Even if a decision to donate was not made prior to death, family members can arrange for the donation of brain tissue after death.
• In all cases, the identity of each donor and potential donor will remain strictly confidential.
• Because the brain is removed from an incision in the back of the skull, there is no disfigurement. Thus, brain donation does not interfere with an open casket or other traditional funeral arrangements.
• An autopsy is not necessary. Brain tissue removal will not change the appearance of the donor. Only the donor's brain will be sent to the Brain Bank.
• When appropriate, a diagnostic report will be sent to the family and health professionals involved with the case.
• There are four major circumstances where a brain generally becomes unsuitable for donation. These are: when a person dies while on a respirator; when a person dies from a highly contagious disease; when a person plans to make a whole body donation to a medical school; and when a person makes a donation of heart, eyes, etc., and is therefore maintained on life support systems.
• The Canadian Brain Bank is funded by government grants and private foundations. Usually, brain donation involves no cost to the family. Occasionally, however, charges may be incurred with the local hospital or funeral director.
• Because the majority of studies can be carried out on a very small amount of tissue, each donated brain provides a large number of samples for many researchers.
• Autopsies must be made promptly after death. One half of the brain is frozen immediately, for future biochemical studies. The other half is placed in a special solution called formalin for pathological studies and determination of the exact disease process.
• The Brain Bank should be contacted as soon as a potential donor dies. Delay could result in the loss of the donation.

How to Donate

Becoming a prospective tissue donor is easy. Call the Canadian Brain Tissue Bank at (416) 977-3398. If you prefer, you can obtain a copy of the pamphlet entitled A Gift of Hope - Canadian Brain Tissue Bank and fill out the attached donor card. But first, do the most important thing of all: inform your family that you would like your brain donated to the Brain Bank after death; they will have to do it for you and they must understand why you wish to donate.