Most Frequently Asked Questions:

Can I be an organ-donor and a brain tissue donor?

Should I have a letter of intent with my other papers?

Who is the next-of-kin?

Does registering as a donor mean that medical treatment will be altered?

How soon should the brain bank be called after death and what happens after the brain bank is called?

What information will I need to provide?

Will I have to alter funeral arrangements? Are there costs?

What information will I receive?

What research is being done and what are the benefits?

Who oversees the distribution of the tissue?

Do I have to pre-register to be a donor?

Co-Registration; Can I be registered in two tissue programs? What about whole body donations?

MedicAlert: Can I add brain donor information to my Medical ID?

Q: Can I be an organ-donor and a brain tissue donor?

A: The answer is yes. We encourage the donation of organs to save lives whenever possible. But please note that brain donation will not automatically occur even if you are a registered organ donor. You must sign up for brain tissue donation through the Autism Tissue Program so that your wishes are known. We have driver license stickers we can send you that say 'Call 1-877-333-0999 to coordinate donation of brain tissue to the Autism Tissue Program’. We can send you these stickers if you call us at 1-877-333-0999 or email atp@memoriesofhope.org. Cards for your wallet are also available with this important phone number and may be also attached to medical records.

Q: Should I have a letter of intent with my other papers?

A: This is such an important decision to make. Getting the support you need occurs when you make your wishes known. We have included letters of intent for you to give to your family, clergy, physician, and friend to explain your intent to donate, for yourself or your children. This way, your next-of-kin knows your wishes and will not have to second-guess you in an emergency. You may also want to include information in your advanced medical directives.

Q: Who is the next-of-kin?

A: Next-of-kin is, in this order, spouse, adult son or daughter, either parent, adult brother or sister, or guardian at time of death. Although guardians play an important role in medical and other legal processes, family members, in the order listed above, will have the legal right to give permission for tissue recovery of the deceased. For example, if a person with autism is 30, the sister is legal guardian and one parent is still alive, the parent would be considered the next-of-kin and responsible for the consent for brain donation, which can be given at the time of the call to the Autism Tissue Program.

Q: Does registering as a donor mean that medical treatment will be altered?

A: Absolutely not. Registering does not mean that your physician can or would alter the patient's medical care or prematurely end the patient's life.

Q: How soon should the brain bank be called after death and what happens after the brain bank is called?

A: We need to be called at 1-877-333-0999, as soon as possible after death, within 24 hours. The specialists at the brain bank will arrange for the donation to be carried out by a pathologist in your area. The recovery of the tissue will be done in the nearest hospital equipped for the procedure. If death has occurred in a hospital, tissue retrieval is usually completed within a few hours and the body is then released to the funeral home for care. If death occurs at home or elsewhere, tissue recovery can occur in the hospital or funeral home. A medical examiner would be involved in cases of sudden or accidental death, and an autopsy may be required. In any event, the associates at the brain bank work with funeral directors, medical examiners and pathologists to ensure that arrangements you request are fulfilled. The body is treated with respect and compassion by the physicians and scientists involved in this process.

Q: What information will I need to provide?

A: After a brain donation, you will be contacted by the Family Clinical Coordinator, Carolyn Komich Hare, who will start to gather medical and behavioral questions relating to the donor. She can be reached by calling 1-877-333-0999.

Q: Will I have to alter funeral arrangements? Are there costs?

A: No to both questions. Brain and tissue recovery does not interfere with having an open casket or with other traditional religious funeral arrangements. The Autism Tissue Program will pay for procedures directly relating to obtaining or transporting tissue. Your family will incur only the usual expenses of a funeral and burial.

Q: What information will I receive?

A: Our view is that donor families express a strong desire to join in the research effort. The next-of-kin of record can receive updates on research progress and various reports, e.g., neuropathology reports, on request. Call 1-877-333-0999.

Q: What research is being done and what are the benefits?

A: With brain tissue, researchers can go far beyond the limits of other technologies and study autism at a cellular and molecular level. It is possible to extend the current imaging studies of the brain to investigate particular pathways and even look at the individual neurons of the brain to help understand both normal and abnormal neurodevelopment. The information gained by the many genetic studies using blood can be confirmed by specifically labeling genetic material or protein products in brain cells. What is learned about neurodevelopment can be applied to day-to-day educational programs to make the most of developmental periods and the brain's capacity to change (plasticity). What is learned about molecules and neurotransmitters in the brain can lead to new drug treatments. A better understanding of the genetics of autism increases our ability to diagnose autism and assess the risks of inheritance.

Q: Who oversees the distribution of the tissue?

A: Tissue is distributed to researchers submitting written requests according to the Tissue Advisory Board made up of scientists from a variety of fields nominated by autism research organizations.

Q: Do I have to pre-register to be a donor?

A: We encourage everyone to talk with their family and friends about brain donation, advise them of their decision on donation and to register for the program if that is their choice. However, we know that families are busy and often delay these sorts of discussions and decisions. So, a family that experiences a death and wants to donate can start the process anytime by calling 1-877-333-0999, even without prior registration.

Q: Should grandparents register?

A: Grandparents often ask us if we are interested in them as brain donors. The answer is yes when their contribution is in addition to that of the whole family of the affected child. As a relative of a grandchild with autism, your brain tissue is very important for comparative studies. For example, it is now possible to amplify and analyze DNA from single brain cells (neurons) and study the expression of multiple genes in individual neurons. Future research will depend on the ability to compare the gene products in various parts of the brain and among family members. We do not accept geriatric donations when there is a known degenerative brain disease or damage such as Alzheimer’s or cancer of brain tissue.

Q: Co-Registration; Can I be registered in two tissue programs? What about whole body donations?

A: We are often asked what happens if you are already involved with another tissue program and still want to participate with the Autism Tissue Program. One example involves a registrant, the grandmother of a child with autism, who is currently enrolled in a Parkinson's Disease study and intends to continue the study after death by donating her brain to the University's tissue program. Much is to be gained by researchers collaborating in cases such as these and we recommended that she indicate to the Parkinson's Disease project coordinator her interest in autism research. Her next-of-kin should contact the Autism Tissue Program at 1-877-333-0999 after death to notify us of the potential to collaborate on brain research. Many university whole body donation programs do not allow brain donation – so, you need to make a decision about what type of research you most want to support.

Q: MedicAlert: Can I add brain donor information to my Medical ID?

A: Yes, you can contact MedicAlert at 1-888-633-4298 to update your information to indicate that “in the case of death; please contact the Autism Tissue Program, 1-877-333-0999, to donate brain tissue”.

What are the various Religious points of view on brain donation?

Buddhism

Buddhists believe that the decision to donate organs or tissues is a matter of individual conscience. While there is no written resolution on the issue, Reverend Gyomay Masso, 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."

Catholicism

The Catholic Church has long supported organ and tissue donation. The decision to donate is seen as an act of charity, fraternal love, and self sacrifice. On the other hand, organ and tissue donations are nor considered to be an obligation. For this reason, the free and informed consent of the donor or the donor's family is imperative. The Church also specifies that in order to show respect for human life, respect for the Author of human life, and respect for the person who once existed, dignity and reverence are due the remains of every being.

Christian

Although the Church of Christ Science takes no specific position regarding organ or tissue donation, most Christian Scientists rely on spiritual rather than medical means for healing.

Hinduism

Hindus are not prohibited by religious law from donating their organs according to the Hindu Temple Society of North America. This is an individual decision.

Islamic Society

The Moslem Religious Council initially rejected organ donation by followers of Islam in 1983 but has since reversed its position provided that the donor's written consent is obtained.

Jehovah's Witness

Jehovah's Witnesses do not encourage organ or tissue donation, but believe that it is a matter for individual conscience, according to the Watchtower Society, the legal corporation for the religion.

Judaism

Judaism teaches that every dignity must be extended to the human body in death as in life. It is the consensus of rabbinical opinion that an examination after death may be performed that will benefit the treatment of others already afflicted with a life-threatening illness. Similarly, most rabbinical authorities concur that an examination after death 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.

One of the provisions of the Israeli legislature's Anatomy and Physiology Act contends that is a person specifies in writing that his or her body should be used for science, it is permissible to donate that body for medical education and research.

Protestantism

While no one can speak with ultimate authority for Protestant Christianity because of the diversity of the traditions and the lack of a single teaching authority, most denominations both endorse and encourage organ and tissue donation. 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 organ donor cards ever through an issue of Luther Witness magazine.