Q: How does the donation process work?
The following is a step-by-step description of the process of brain donation.
1. The family or health care provider calls the Autism BrainNet 24-hour Hotline (877- 333-0999) as soon as possible after the death; and medical personnel are informed of your intent to make a brain tissue donation.
2. The The Autism Brain Net Coordinator explains and facilitates the informed consent process. In order for the donation to occur, the Autism BrainNet must obtain “informed consent,” which is the formal and knowledgeable approval of the donation from the donor’s next-of-kin (NOK). The NOK is generally defined in this order: spouse, adult children, either parent, adult siblings, or guardian at the time of death.
3. The Autism BrainNet research center that will receive the brain tissue will be notified immediately of the impending donation, will arrange for the brain recovery, and will begin preparing the arrival of the donated tissue.
3. A Medical Examiner, coroner, or pathologist will conduct the brain recovery. 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 has occurred at home or elsewhere, tissue retrieval can occur in the hospital or funeral home. A medical examiner would be involved in cases of sudden or accidental death.
4. A courier will transport the recovered tissue directly to the Autism BrainNet research center. Optimally, the Autism BrainNet research center will receive the donated brain tissue within 24 hours of the donor’s death.
5. Skilled technicians at the Autism BrainNet research center will begin a process to properly prepare and preserve the donated tissue for future distribution to approved investigators.
6. Tissue will be provided to autism researchers after an application process and thorough scientific review. Researchers will receive tissue anonymously (i.e., the Autism BrainNet staff will provide researchers only an identification code, never the name of the donor).
7. An Autism BrainNet clinical specialist will contact the donating family and schedule a personal meeting, at the time and location convenient to them, to acquire information about the donor.
Q: Will funeral arrangements need to be altered ? Are there costs to families in connection with brain tissue donation?
No to both questions. Brain and tissue recovery do not interfere with having an open casket or with other traditional religious funeral arrangements. The Autism BrainNet will pay for procedures directly relating to obtaining or transporting tissue. The donor’s family will incur only the usual expenses of a funeral and burial.
Q: What information needs to be provided about the brain tissue donor?
After a brain donation, a clinical counselor will arrange to meet with the donor’s family to obtain medical, behavioral and family information about the donor.
This information will generally include the following, as applicable:
1. Autopsy report
2. Medical records
3. Neuropsychological evaluations (IQ or any psychological/behavioral evaluations, ADOS, etc.)
4. Audiological evaluations
5. Educational evaluations
6. Speech-language evaluations
7. Case history information (which includes information about the family)
The counselor will help families to obtain the needed information. The data received through this process is extremely important in studying the donated brain tissue.
Q: Who oversees the distribution of the tissue?
The Autism BrainNet will collect, process, store and distribute the brain tissue samples for autism research, and research data and results will be collected in a centralized database. All decisions concerning the distribution of brain tissue will be made with the advice of a Scientific Review Panel, which will assess each researcher’s application based on its scientific quality, relevance, and potential for significantly advancing science for the purpose of improving the lives of people with autism.
The institutions currently participating in the Autism BrainNet include the MIND Institute of the University of California at Davis, the Mount Sinai School of Medicine in New York, the University of Texas Southwestern Medical School, and the Autism Speaks Autism Tissue Program (ATP) at the Harvard Brain Tissue Resource Center. In the coming years, the Autism BrainNet plans to add additional institutions, both nationally and internationally.
Q: Will donor information be kept private?
The Autism BrainNet is an Institutional Review Board (IRB) approved clinical program. An IRB, also known as an Independent Ethics Committee (IEC) or Ethical Review Board (ERB), is an external, independent committee that has been formally designated to approve, monitor, and review biomedical and behavioral research involving humans with the aim of protecting the rights and welfare of the research subjects. An IRB performs critical oversight functions for research conducted on human subjects that are scientific, ethical and regulatory. The Autism BrainNet is dedicated to abiding by all IRB rules and regulations in order to protect the rights and privacy of our donors and their families.
The Autism BrainNet is fully committed to protecting the privacy of donors and their families through any process, communication, or action by this program. All family contact information remains confidential to the Autism BrainNet and is never shared. We will keep a donor family’s identity confidential by providing unique de-identifying tracking codes for all associated data and donor tissue. Approved researchers will be able to access relevant medical data obtained and provided to the Autism BrainNet, but will not know the identity of the donor or donating family.
Q: What support and information can donor families receive after a donation?
The Autism BrainNet staff will ensure that the entire brain tissue donation process is properly carried out, and will serve as a source of comfort and support for donor families. We can be contacted anytime to answer questions or concerns families may have after the brain tissue donation process. Families can also receive updates on research progress and various reports, e.g., neuropathology reports, on request.