Q: What is mental illness?
A: The DSM-IV (Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition) describes a mental disorder as a “behavioral or psychological syndrome or pattern that occurs in an individual and that is associated with present distress (e.g., a painful symptom) or disability (i.e. impairment in one or more important areas of functioning) or with a significantly increased risk of suffering death, pain, disability, or an important loss of freedom.” In other words, mental illnesses (or mental disorders) emerge from brain diseases that cause a disturbance in thinking, mood, or behavior. An individual who suffers from a mental illness should not be looked upon as having a personal weakness. A brain disease that causes mental illness is no more a sign of personal weakness than a heart disease that causes heart failure. Much like the study of diseased and healthy heart tissue has lead to the understanding of heart disease, it is our hopes that the study of brain tissue from deceased mentally ill and healthy individuals will lead the way to discovering a biological bases for mental illnesses.
Q: How long after death does tissue have to be recovered?
A: Donated tissue is precious and fragile. It should be recovered within 24 hours, however we can use tissue recovered after longer periods of time. We understand that this is a very difficult and stressful time for families when we ask for verbal consent.
Q: Tell me more about organ donation.
A: Organ Donation in the State of Alabama is regulated under the guidelines of the Universal Anatomical Gift Act. The Universal Anatomical Gift Act governs both live organ donations for medical transplantation and for making gifts of tissue to be used in medical research. For more information see The Revised Universal Anatomical Gift Act of Alabama.
We work with the Alabama Organ Center, which identifies cases and obtains the primary permission for brain donation. Please go to their website for details: www.alabamaorgancenter.org
Q: Is the brain tissue we have donated going to be used by commercial pharmaceutical companies?
A: Tissue can only be distributed to commercial pharmaceutical companies if the family has granted special permission
Q: Can studies be done individually on my loved one’s brain?
A: The answer to this question is generally no. Currently no signature pathology (such as that found in Alzheimer’s, Huntington’s or Parkinson’s disease) has been discovered that identifies the brains of people with mental illness. When we study the brains of people with mental illness, we do not “test” for mental illness per se, but we study groups of subjects and compare them to subjects without mental illness. The researchers who work outside of the ABC with the brain tissue do not know the names of the deceased, and all identified records are kept strictly confidential.
Q: How is the brain tissue preserved?
A: Tissue is dissected and assigned a confidential code. It is then either frozen or chemically preserved for further study.
Q: Is there any cost to my family if I donate tissue?
A: No, the AOC and/or the ABC covers all of the costs involved for tissue recovery. Funeral expenses are covered by the family. However, if the donor or donor’s family wishes to make a gift of body donation, all expenses related to the donation and cremation are covered by the AOC.
Q: Why was I asked to participate in a phone interview?
A: Researchers are interested to know more about the medical and psychiatric conditions your loved one may have had. They will also ask about any medications they may have taken. The data collected during the interview are strictly confidential, and are used to diagnose the tissue for research purposes.
Q: My loved one did not have a mental illness, why would you want to collect their brain?
A: We use brain tissue from individuals will no history of mental illness as “controls.” They are extremely important to use in comparison with tissue from individuals diagnosed with a mental illness. This makes it possible to identify brain structures or functions that are different in the disease condition. Without the brains of normal controls we would not be able to analyze tissue from patients when studying the biological basis of mental illness. In addition, many important studies are conducted in control tissue to understand the neurobiology of the human brain.
Q: If I change my mind, will my loved one’s tissue be used anymore for research?
A: You may change your mind about the donation and or the interview at any time. If you do change your mind, you may contact the Director of the ABC (Dr. Rosalinda C. Roberts 205-996-9373 ) or one of the Coordinators (Joy Knickman Roche 205-934-1858 , Rosie Ricks 205-934-1970 ). Once notified of your intentions the donation will be removed from our collection.
Q: I have more questions. Whom do I contact?
A: You may contact Dr. Rosalinda C. Roberts by phone at 205-996-9373 .