The Importance of Donation and How to Donate

A brain donation to Autism BrainNet creates a legacy that helps advance research on autism spectrum disorder (ASD) and related neurodevelopmental conditions.

Research using postmortem brain tissue provides one of the most direct ways to understanding the biological causes of ASD and identifying potential therapeutic targets in the brain. This knowledge may empower autism families and individuals to better advocate for their needs and interests.

Talking with family members about brain donation is a key aspect of long-term planning. These discussions are much less stressful when they occur in advance and minimize the burden of decision-making at the time of death. Long-term planning will also help ensure that a donor’s decision is respected.

In the midst of grief and loss, Autism BrainNet’s donor families report that they find a sense of hope and purpose in their loved one’s continued contribution to science.

Why is it important to study the brain to understand autism and related neurodevelopmental conditions?

There is still much to learn about how the human brain works and the differences in how the brain of a person who has autism or a related neurodevelopmental condition works.

Scientists can study the living human brain by using neuroimaging techniques such as magnetic resonance imaging (MRI) and electroencephalography (EEG). But these methods do not allow seeing the individual brain cells that form the brain tissue or studying the molecules that signal how these cells develop and function. Neuroimaging techniques do not give scientists enough information to understand how genetic changes affect brain tissue at the microscopic level. Thus, it is extremely important to examine the postmortem human brain to study individual brain cells, as well as molecular pathways and patterns of gene activity.

One further challenge of studying the autism brain is that ASD is a very complex condition. Hundreds of genes have been associated with ASD, and many different clinical manifestations have been observed. The only way to understand this genetic and behavioral diversity is to examine a large number of cases, but unfortunately, brain donations are lacking.

No pharmacological intervention is currently available to address the core symptoms associated with ASD. Through a better understanding of the changes in brain tissue, autism researchers may help identify targets for new treatments that could improve the quality of life of individuals with autism and their families.

Who can become a brain donor for Autism BrainNet?

Autism BrainNet accepts postmortem brain donation from individuals of any age who have a diagnosis of autism or a genetic diagnosis associated with autism. This includes individuals with a diagnosis of Angelman syndrome, Dup15q syndrome, Phelan-McDermid syndrome, Prader-Willi syndrome or other genetic diagnosis associated with autism. 

Autism BrainNet also accepts donations from individuals (ages 2-50 years) who do not have a diagnosis of autism or neurologic or psychiatric condition. This is because researchers need to compare individuals with and without autism to identify the brain changes associated with autism.

If you would like to become a brain donor, it is important to let your family know. Your family can help carry out your decision (when death is near or has occurred) by calling Autism BrainNet toll-free at 877-333-0999. Our staff is available 24/7 and will walk your family through the donation process. It is recommended that you also inform your attorney, clergy, and healthcare provider of your intent to donate to Autism BrainNet. 

While the goal of Autism BrainNet is to accommodate all interested donors, if the health status of a particular donor does not meet Autism BrainNet’s inclusion criteria, we will assist families in exploring other brain donation programs.

Most organ donation registries do not include brain donation. This is because donated brain tissue can only be used for research purposes and not transplantation. Autism BrainNet donors can also be organ donors. Autism BrainNet encourages organ donation to save lives whenever possible. However, Autism BrainNet does not accept whole-body donations.

What are the steps to make a brain donation?

Autism BrainNet makes the donation process as simple as possible for every family. Donor families are treated with respect and compassion and provided with ongoing support.

These are the steps involved in the process of brain donation to Autism BrainNet:

  1. When a death has occurred or is near, the family or health care provider calls Autism BrainNet at 877-333-0999 as soon as possible for immediate assistance. Our staff is available 24 hours a day, 7 days a week, and will walk your family through the donation process. Medical providers will be notified of your intent to make a brain donation.

  2. An Autism BrainNet clinician will work with the legal next of kin to obtain consent for donation. State law determines the specific order, but the next of kin would generally be a health care agent (if named), spouse, adult children, parents, siblings and then increasingly distant relatives determined by the laws of your state. In the case of minors, parents are typically recognized as the legal next of kin.

  3. Autism BrainNet staff will coordinate brain recovery and make arrangements for the donation to be carefully transported to the nearest Autism BrainNet node, where it is preserved and stored for future distribution to approved, qualified researchers.

  4. An Autism BrainNet clinician will follow up with the donor family to schedule a video meeting or home visit. The purpose of this visit is to learn more about the donor and obtain medical, behavioral, and family information. This information may include medical records and neuropsychological, audiological or speech-language evaluations.

Autism BrainNet’s staff can be contacted anytime to answer questions or concerns after the brain donation process.

There is no cost associated with a donation to Autism BrainNet. Autism BrainNet takes care of all the financial costs related to the donation.

Brain donation does not interfere with funeral plans, including having an open-casket viewing, or with other traditional religious funeral arrangements.

How is donated brain tissue used?

Autism BrainNet follows high standards to collect, process, store and distribute the precious gift of donated brain tissue to qualified autism researchers worldwide. All decisions concerning the distribution of brain tissue are made with the advice of an independent Scientific Review Committee that evaluates each researcher’s application based on its scientific quality, relevance, adherence to the mission of Autism BrainNet and potential for significantly advancing science to improve the lives of people with ASD.

How is donor information protected?

Autism BrainNet is evaluated and approved by an Institutional Review Board (IRB). An IRB, also known as an Independent Ethics Committee (IEC) or Ethical Review Board (ERB), is an external, independent committee that approves, monitors and reviews biomedical and behavioral research involving humans to protect the rights and welfare of the research participants. An IRB performs critical oversight functions for research conducted on human study participants that are scientific, ethical and regulatory. Autism BrainNet abides by all IRB rules and regulations to protect the rights and privacy of our donors and their families.

Autism BrainNet is committed to protecting the privacy of donors and their families. Research data and results are collected in a centralized database in accordance with United States privacy laws. All donor families’ contact information is protected and remains confidential to Autism BrainNet and is never shared. Approved researchers will be able to access ONLY DEIDENTIFIED relevant medical data obtained and provided to Autism BrainNet.