The brain is a complex structure that allows us to experience the world around us, feel emotions, and create memories. While we understand the role the brain plays in our lives, we’ve only scratched the surface of how it’s able to do this and how different diseases impact it.
By studying the brain of people who have died, scientists are able to take a closer look at how diseases impact brain function by comparing brains from people with and without disease. Brain donation provides opportunities for scientists and physicians to improve our understanding of brain function and disease, which will lead to better treatments and therapies for brain diseases and disorders.
Note: BICAN is recruiting donors who did not have brain diseases or disorders. If you do not fit BICAN’s study criteria and would like to be involved in brain donation, please refer to UCI MIND to learn more about other brain donation programs and studies being conducted at UC Irvine.
What is brain donation and why is it important?
Brain donation is a process where an individual or their family decides to donate their brain to medical research. Unlike with organ donation, the brain is not given to a recipient, but is instead used for research into different neurological diseases.
There is a limit to the amount of research that can be done on the brain when the person is still living. Therefore, post-mortem brain research is essential for investigating the effects of disease on the brain and the development of new and innovative treatments.
Brain donation is a selfless gift that provides hope to future generations.
Why is it important for diverse populations to participate in brain donation?
Brain donation from underrepresented groups is extremely important. Research has shown that Alzheimer’s disease and other forms of dementia affect the African American/Black and Latino/Hispanic population at a higher rate than White Americans. However, brain donation and tissue availability from underrepresented groups remains low. Including diverse participants in research helps scientists to better understand how dementia and other neurological diseases uniquely affect these populations.
Is tissue from normal brains needed?
While brains of individuals with cognitive impairment and brain disease are very helpful to our understanding of the disease processes and the impact on brain tissue, there is a tremendous need to better understand healthy brains, as well. Researchers are seeking to better understand brains with no history of brain disease or cognitive disorders. These brains are needed to help us better understand how the brain works, the effects of aging, and to provide a point of comparison against which diseased brains are measured.
I am an organ donor. Can I still donate my brain?
Yes, you can. Being a brain donor does not preclude you from being an organ donor. All that is required is that the family has obtained consent from the organ donation program and the program has agreed to relinquish the body for brain removal prior to organ donation. Please keep in mind that brain research can be time-sensitive, and oftentimes the brain tissue is most informative to research if it is processed as quickly as possible at the time of death. We encourage you and your family to discuss your plans and directly coordinate with the organ donation program(s) about your wishes. The organ donation team will provide clear instructions to you and your family.
I am a full body donor. Can I still donate my brain?
Yes, you can, only if you are registered through UCI’s Willed Body Program.
What does the brain donation process look like from start to finish?
Enrollment: Once an individual is determined to be a suitable candidate for the program, the individual may enroll. For requirements and to determine eligibility, please contact the brain donation coordinator.
Consent: Once approved for the study, the participant must sign a consent form and pre-register in advance.
Decision making for brain donation is a personal choice, and we encourage individuals to discuss this further with their families. It will be important that next-of-kin and family members are made aware of this decision in advance.
Designating a Representative: A family member or representative must be selected to contact the brain donation program at the time of death.
Notify: A program coordinator is available 365 days a year, 24 hours a day, 7 days a week, to be contacted immediately at the time an organ donor passes. The coordinator will assist the family in making transportation arrangements to and from the brain donation site. Due to the time-sensitive nature of the organ procurement, it is imperative that the program coordinator is contacted immediately.
Transport: A transportation service, coordinated by the donation program, will transport the body to the brain donation site.
Removal: Our autopsy team will carefully remove the brain. The procedure is performed in a way that is minimally invasive, thus ensuring no disfigurement of the body and timely preservation of the brain tissue.
Release: After the quick removal process, the body is released to the family’s preselected funeral home to proceed with funeral or cremation arrangements.
Report: Approximately 1-year post-donation, our team of neuropathologists will provide the donor’s family with the neuropathological report via email, phone, or in-person consultation.
What happens to the brain after donation?
Once the brain has been removed, it is stored for medical research in UCI’s biorepository. To maximize the amount of information that can be obtained from the donation, the brain is preserved in two ways. One hemisphere of the brain is fixed in formalin and the other hemisphere is frozen. Formalin is a fixative used to preserve the tissue for research and diagnostic purposes. Once preserved, the neuropathological diagnosis is determined, and the tissue samples will be shared with researchers all around the world to aid in their research.
Are there any costs or fees to me or my family?
No, the study will assume all financial responsibility for the brain donation process, including the cost of transportation to and from the brain removal facility. The family will not incur any costs. However, any funeral expenses will remain the responsibility of the family.
Will brain donation delay the funeral?
Brain Donation will not delay, limit, or complicate any funeral arrangements.
Can we still have an open casket?
The incision will not be visible, nor will it preclude you from having an open casket. An open casket is still an option.
Does my religion prevent me from donating?
Many religions allow and support brain and organ donation. However, some religious beliefs and traditions might preclude you from donating. We advise you to speak with your family, religious advisors, and other spiritual leaders for guidance. Feel free to reach out to us if you have any questions.
How can I donate?
Our study is running through 2026. If you are interested in donating your brain to our study during that time, please contact Jillian Berry @ jvberry@uci.edu.
Can I revoke my consent to donate my brain?
Yes, you are able to revoke your donation at any time.
How will my brain be studied?
The brains donated to the BICAN UM1 project will be studied by looking closely at different types of brain cells to understand how they work and connect. Scientists will use special tools to map out each cell’s shape, location, and function, helping us learn how healthy brains grow and what might go wrong in diseases.
What research data will my family/next of kin receive from my donation?
Approximately 1-year post-donation, our team of neuropathologists will provide the donor’s family with the neuropathological report via email, phone, or in-person consultation.
How long is this study running?
This study is running through the end of 2026 with the possibility of renewal.