- Brain Donations
The Autism Research Foundation works closely with the Harvard Brain Tissue Resource Center at McLean Hospital, Belmont, MA 02178-9106, in obtaining tissue for our research. They are recognized nationwide as being a top rate institutions concerning brain tissue and donations.
"From knowledge will come a cure."
About the Harvard Brain Bank
The Harvard Brain Tissue Resource Center is located in Belmont, MA, on the grounds of the McLean Hospital. A few miles from Boston, the McLean Hospital is a psychiatric hospital dedicated to the diagnosis, treatment and research of neuralgic and psychiatric disorders. As an affiliate institution of the Massachusetts General Hospital and a teaching arm of Harvard Medical School, our location at McLean Hospital offers unique opportunities in the field of scientific research.
Our projects are funded through donations and grants from federal agencies as well as from public and private parties. We are a tax-exempt, nonprofit organization existing solely to serve the scientific community and families of our donors. Contributions from individuals are welcome and tax-deductible.
Please feel free to write should you have any further questions. Our toll-free, 24-hour number is 1-800-BRAIN-BANK. In addition, (617) 855-2400 is monitored 24 hours a day and if there is no answer at either of these numbers, please call (617) 855-2000. We are pleased to assist you in any way we can.
Thank you very much for your interest in out brain donation program.
AUTISM RESEARCH AND THE NORMAL BRAIN
The Harvard Brain Tissue Resource Center is a central resource for the collection and distribution of postmortem tissue for research into neurological and psychiatric disorders, including autism.
In order to conduct meaningful studies on the neurobiology of autism, it is essential for research scientists to have access to tissue from both normal and autistic individuals, so that they can identify comparative anatomical and neurochemical differences. Since the majority of these studies can be carried out on a very small amount of tissue, each brain can provide a large number of samples for research.
Neurochemical and anatomical studies focusing on the biological nature of many brain disorders are now emerging and bringing forth new hope for understanding the underlying mechanisms responsible for these debilitating brain disorders. However, because of the long standing shortage of brain tissue donated from autistic and normal individuals, essential postmortem research into the neurobiology of the human brain has been delayed.
DONATION OPTIONS AND ELIGIBILITY
Becoming a prospective tissue donor is easy. Any person 18 years of age or older can complete and return the "Brain Donation Questionnaire" form for themselves or on behalf of a child.
Often a brain donation is a last minute decision on the part of the family. Generally, however, it is better if the family has already openly discussed the idea of donation in order to avoid misunderstandings and to facilitate the donation process. At the time of death of the donor, the surviving family members or legal guardian will need to be available to verify the donor's intent-to-donate, and to offer authorization to the "Brain Bank" to acquire all medical records.
Autism affects as many as 15 of every 10,000 people, usually appearing within the first three years of life. Some autistic children are of normal intelligence and can learn to function independently, but mos are retarded and need constant care.
For many years, psychologists blamed autism on cold, unresponsive parents who failed to nurture their infants adequately. Thus, parents suffered twice - they felt the pain of being unable to reach and help their child, and they were made to feel that they themselves were to blame. Though no longer blamed on "refrigerator" parents, the exact cause of autism remains unknown, and the methods of treating the condition are varied and experimental.
Research has shown that autism is related to abnormal changes in the brain. Deep inside the brain, the limbic system forms early in fetal development and is involved with emotion, memory, learning and motivation. The cerebellum, at the back of the brain, may also be involved in learning. These findings confirmed speculation that autism was biologically based.
Donations of brain tissue from both autistic and normal individuals who have died through accident or illness is critical to present and future autism research. Since there is no animal model for autism, investigators must rely on the availability of human tissue for research. The need for this tissue is great and critical to solving the mystery of autism.
VARIOUS TYPES OF DONATION
There are different categories of tissue donation:
The "body donor" donates the entire body for medical education; however, the brain must remain with the body and cannot be used for research.
The "organ donor" donates for transplantation; however, the brain begins to decay immediately at death, and brain donation is generally not compatible with organ donation.
The "brain donor" donates the brain for medical research and if interested, also has the option of donating eyes, skin or bone tissue.
AT THE TIME OF DEATH
In order to initiate the process of brain donation, call 1-800-BRAINBANK at the time of impending death or immediately after the death of the donor. The "Brain Bank" associate will need the name and location of the donor and will work directly with the pathologist in charge. Most often, the brain should be removed and shipped to the Harvard Brain Tissue Resource Center within hours following the death of the donor. Only the donor's brain will be sent to the "Brain Bank," so the donor's body will not be transported away from your local area.
When questionable circumstances surround a death, a state medical examiner/coroner may be responsible for a postmortem investigation involving the brain tissue. However, the remainder of the brain not required for their evaluations may be donated to the "Brain Bank" upon request by the family. Generally, medical examiners will cooperate with the family's decision for brain donation. When an investigation by the medical examiner is not required, a pathologist in a nearby hospital can perform the brain removal using a protocol supplied by the "Brain Bank."
THINGS YOU SHOULD NOW
In all cases, the identity of each donor and potential donor will remain strictly confidential.
Brain donation does not conflict with most religious perspectives and will not interfere with an open casket or other traditional funeral arrangements (call for a brochure outlining Religious Perspectives).
A diagnostic neuropathological report will be sent to the family and pathologist involved with the case.
Because the cost of autopsy is not covered by health care insurance, The Autism Research Foundation in Boston has agreed to cover pathology expenses related to the donation up to $300 (generally, fees do not exceed this amount).
FORMING A BRAIN DONATION NETWORK
Brain donation for research is not a widely publicized subject, so many physicians and pathologists are not familiar with brain banking. Contacting the pathologists at your local hospital and identifying the professionals in your area who are sensitive to the need for brain donation can greatly facilitate the donation process. If you are having trouble identifying a cooperative pathologist, feel free to call us at 1-800-272-4622, and our staff will be happy to assist you.
STEPS TOWARD A SUCCESSFUL BRAIN DONATION
If you are interested in brain donation, we recommend the following steps:
- Have a family discussion about brain donation, and inform your physicians of your decision.
- Complete and return the "Brain Donation Questionnaire," registering the potential donor(s).
- Upon receipt of your "Brain Donation Questionnaire," we will send a wallet-sized "Donor Card." Carrying this card is not necessary but may facilitate the donation process.
- At the time of impending death or at death, call 1-800-BRAINBANK (1-800-272-4622) and provide the following information:
complete name and current location of donor, date of birth of donor, time and cause of death (if known), name and address of legal next-of-kin
- After the death of the donor, a "Postmortem Confirmation of Consent" form for donation must be signed by the next-of-kin.
- This form will be provided at the time of autopsy by the medical examiner, coroner or pathologist (if one has been identified) which authorized brain removal.
Please call 1-800-BRAIN BANK or 1-617-414-7012 to receive further brain donation information and a brain donation questionnaire to fill out and return.
Those of us at the Brain Bank genuinely appreciate your interest and contribution to autism research.
Religious Perspectives Concerning Brain Donations
As advances continue to be made in research laboratories throughout the world, more and more people are beginning to appreciate the enormous potential or postmortem human brain research. What the public does not seem to realize, however, is that while promising results are being reported and our understanding of severe neuralgic and psychiatric disorders is improving, more significant progress is actually being delayed because of a scarcity of brain tissue donors.
Some people, it appears, fell so strongly about the need for postmortem human brain research that they need not think twice about donation. Many more, however, seem to find the decision to donate tissue to be a difficult and complicated one. It is a decision that causes many to contemplate their innermost feelings about death; to consider whether or not there is an afterlife; to think about what constitutes the soul during life and what happens to the body after death.
For centuries, religious leaders have been grappling with these very same issues. This information has been put together with the help of rabbis, priest, ministers and medical ethicists, to provide answers to some of the religious questions you may have regarding organ and tissue donation.
"Is the decision to support essential research by donating brain tissue after death compatible with my religious beliefs?"
This is the question that many individuals need answered before deciding to become a brain tissues donor or before choosing to donate the tissue of a loved one. Though the answers vary from one denomination to another, it appears that the majority of religions do support postmortem brain tissue donation and research. While some faiths have very particular laws regarding the circumstances of donation, the mandate to heal and call to compassion are recognized as fundamental to all religions.
The Buddhists believe that the decision to donate organs and tissue is a matter of conscience. While there is no written resolution on the issue, Reverend Gyomay Masao, president and founder of the Buddhist Temple of Chicago, says "We honor those people who donate their bodies and organs to the advancement of medical science and to saving lives."
The Catholic Church has long supported organ and tissue donation. The consent to donate is seen as an act of charity, fraternal love, and self sacrifice. On the other hand, organ and tissue donation is not considered to be an obligation. For this reason, the free and informed consent of the donor of donor's family is imperative. The Church also specifies that in order to show respect for human life, respect for the author of life and respect for the person who once existed, dignity and reverence are due to the remains of every human being. Therefore, organs and tissue should be removed only when there is sufficient reason to justify such an action.
Pope Pius XII was an early advocate of tissue donations and Pope John Paul II relies on his teachings today. In 1956, Pius XII declared that "the public must be educated." He explained that to consent to autopsy or organ donation "in the interest of those who are suffering is in no violation to the dead...this consent can involve sadness and sacrifice for the near relatives," he explained, "but this sacrifice is glorified by the aureole of merciful charity toward come suffering brothers."
Although the Church of Christ Scientist takes no specific position regarding organ and tissue donations, most Christian Scientists rely on spiritual rather than medical means for healing. Most also fell that they can make their particular contribution to the health of society and their loved ones in other ways than through organ or tissue donation.
Hindus are not prohibited by religious law from donating their organs according to the Hindu Temple Society of North America. This act is an individual decision.
Judaism teaches that all humans are created in the image of God and that every dignity must be extended to the human body in death as in life. Consequently, Jewish law sanctions the performance of autopsies only in certain, very limited circumstances. It is the consensus of rabbinic opinion that postmortem examination may be performed for the purpose of gaining specific information that will benefit the treatment of others already afflicted with a life-threatening illness. Similarly, most rabbinic authorities concur that a postmortem examination may be performed on a person who dies with a genetic disease in order to save the lives of children who may be afflicted with the same disease, even if the children whose lives will be saved have not yet been born.
Under Jewish law, sanctioned autopsies should be considered surgical procedures, and should be performed with the same dignity, respect and consideration that would be accorded a living person undergoing an operation. Only those organs, tissue and body fluid not needed for microscopic of biochemical examination should be returned for prompt burial as required by Jewish Law.
A more liberal precedent, followed by many of today's Jewish leaders, was set during the last century by Rabbi Jacob Ettlinger, the author of Binyan Zion (response nos. 170-171). He ruled that an autopsy may be performed if the deceased had willed his or her body for that purpose while still alive. In fact, once of the major provisions of the Israeli legislature's Anatomy and Physiology Act contends that if a person specifies in writing that his or her body should be used for science, it is permissible to donate that body for medical instruction and research.
The Moslem Religious Council initially rejected organ donation by followers of Islam in 1983, but has since reversed its position provided that donors consent in writing in advance.
Jehovah's Witnesses do not encourage organ or tissue donation, but believe it is a matter for individual conscience, according to the Watch Tower Society, the legal corporation for the religion.
While no one can speak for Protestant Christianity, because of the diversity of traditions and the lack of a single teaching authority, most denominations both endorse and encourage organ and tissue donations. At the same time they stress respect for the individual conscience and a person's right to make decisions regarding his or her own body.
The Lutheran Church-Missouri Synod was the first denomination to encourage organ and tissue donation by adopting a supportive resolution and by distributing the largest number of donor cards ever through an issue of Lutheran Witness magazine. Reverend James W. Rassbach of the Board for Communication Services, Missouri Synod, says, "We accept and believe that our Lord Jesus Christ came to give life and came to give it in abundance. Organ and tissue donation enables more abundant life, alleviates pain and suffering and is an expression of live in times of tragedy."
Due to the limited nature of this booklet, the McLean Brain Bank was unable to include perspectives from all faiths. For those needing additional religious guidance, it may be helpful to discuss your questions and concerns with your own rabbi, priest or minister. While they may not have all the answers you are looking for, they will undoubtedly recognize and support your desire to contribute to a healthier tomorrow.
For further information regarding postmortem human brain research or to obtain a donor card, please contact one of the following brain bank resources:
Dr. Francine Benes
Brain Tissue Resource Center
115 Mill Street, Belmont, MA 02178
Dr. Wallace Tourtelotte
National Neurological Research Bank
V.A. Wadsworth Medical Center
Wilshire and Sawtelle Blvds.
Los Angeles, CA 90073
Dr. Patrick McGeer
Division of Neurological Science
University Hospital, UBC Site
2255 Wesbrook Mall
Vancouver, British Columbia
Canada V6T 1W5
614-228-7377 or 228-7121