Donor Program FAQ

WHY SHOULD I DONATE MY BRAIN OR MY LOVED ONE’S BRAIN?

With our aging population, each year more and more people are being diagnosed with neurological disorders. Each year neuroscientists have been making progress in their research, but there is still so much more information waiting to be discovered. Our understanding of the biochemistry of the brain is best achieved through the use of postmortem human brain tissue. One brain can provide tissue for studies by numerous researchers throughout the United States as well as other countries. Therefore, a brain donation is a valuable gift.

WHO CAN DONATE?

Any legally competent adult can donate their brain, just as they can donate any other organ. Those who are incompetent, or otherwise unable to sign, may provisionally donate through their guardian.

ARE THERE ANY RESTRICTIONS?

The Center cannot accept brain donations from persons who were on a respirator for a period of time immediately prior to death or who suffered from highly contagious or neurologically transmissible diseases. As heart, kidney, and liver donors must necessarily be on a respirator at death, we regret that persons wishing to donate those organs can not donate a brain to the Center. However, unlike organ donations for transplants, there are no age restrictions for organ donations for research.

HOW DO I BECOME A BRAIN DONOR?

Simply let us know of your wish to become one by COMPLETING THE DONOR ENTRY FORM . It is very important to discuss your decision to donate with your family or friends and with your physician since your next-of-kin will be asked for their consent to proceed with the procedure after your death. The next-of-kin or other individual responsible for the donor will be instrumental in assuring a successful donation by seeing that the brain autopsy is done. Involving your own family may help them better remember your intentions to donate. Your physician and/or psychiatrist should be aware of your decision as well. All of these people can help you address concerns, complete the necessary forms, and insure that your wishes will be respected.

WHAT SPECIAL PROCEDURES MUST BE FOLLOWED AT THE TIME OF DEATH?

It is important to have the tissue removed as quickly as possible, before embalming, if embalming is planned. When a brain donor dies, the family or a member of the medical team who cared for the donor should call our Center’s Coordinator. During office hours (310) 268-3536; 24 hour pager (310) 636-5199. In the unlikely event that you do not receive a response when paging, please call the VA switchboard at (310) 478-3711. They will provide additional phone numbers to reach us. Our protocol will be faxed to the pathologist if he/she does not already have it. A minimum number of hours between death and tissue donation insures maximal research value.

WHAT ABOUT THE COSTS INVOLVED WITH DONATION?

The Center will pay for any incidental expenses which may occur as a result of tissue donation. Sometimes, personnel who assist in the donation process donate their services to aid this important research program. Funeral arrangements and expenses remain the responsibility of the donor and family.

WHO PERFORMS THE PROCEDURE?

For people that live in the Greater Los Angeles area: The Center has contracted a fee for service autopsy technician that will travel to either the mortuary selected by you and your family or a local hospital to remove tissue. The Center will pay the fees associated with the donation including the autopsy technician.

For Donors outside the Greater Los Angeles area: A local hospital will often carry out the autopsy. We suggest this be discussed with the potential donor’s physician, who may be able to help make the arrangements with a local pathologist. This discussion should be done at the time of the decision to donate and should be clearly recorded with personal papers such as a will or the provisional authorization forms provided in this packet. It is very important that the intent to donate be evident in the donor’s medical records so that all medical personnel are aware of the future donation.

MUST THE DONOR BE TRANSPORTED TO THE CENTER?

No, the brain is removed at a facility close to the place of the donor’s death. Only the brain and other authorized organs are sent to the Center.

WHAT HAPPENS TO THE BODY IN THE AUTOPSY SUITE/MORTUARY?

A simple incision of the skin on the back of the head under the hair line is made as the first step in removing the brain. After the brain has been removed, the body is released to the funeral director for whatever arrangements the family has made. An open casket or other traditional funeral arrangements are possible. The exact funeral and burial details, however, remain the responsibility of the donor’s survivors or estate.

WILL MY NEXT-OF-KIN RECEIVE A REPORT ON THE FINDINGS?

Upon request, we will send a copy of the neuropathology report to the next-of-kin. The report is a microscopic examination of the tissue which will confirm or negate any clinical neurological diagnosis.

WHAT HAPPENS AFTER THE BRAIN BANK RECEIVES MY BRAIN?

The Center contacts the next of kin to express our condolences as well as our gratitude for each donation. We need to ask the next-of-kin for permission to look at the donor’s medical charts. These records reveal much of the information needed for researchers to properly interpret their results. As with all information received, these records are kept strictly confidential.

WHAT ABOUT LEGAL ISSUES?

The hierarchy of legal relationships is fairly consistent from state to state. Generally, all legal guardianships, powers of attorney, and other court-appointed relationships end at death. The surviving legal next-of-kin is the first to fulfill one of the following requirements:

• Spouse (unless divorced or legally separated)
• Adult child (if more than one, all must agree)
• Parent
• Sibling (if more than one, all must agree)
• Other relative (niece, nephew, grandchild, etc.)
• Executor or Administrator (if already appointed)

WHAT ABOUT A WHOLE BODY DONATION OR DONATION OF BRAIN AND OTHER ORGANS?

Most medical schools do no accept body donations from persons who have donated any type of tissue. One usually must make a choice between donating their organ(s) versus donating one’s entire body to a medical school. There are no restrictions in donating eyes, skin, bone, or similar tissues when donating one’s brain.