For Families
On this page
- How does HBCC get donated brains?
- Will my loved one’s confidentiality be protected?
- Will you need additional information from the family or next-of-kin?
- What research is done with donated brains?
- If we donate our loved one’s brain, will we still be able to have a viewing/open casket?
- Does brain donation delay the return of the deceased’s body to the family or funeral home?
- Will brain donation interfere with the cause of death investigation?
- Will we receive any report on your findings?
- Does your contacting us mean the deceased individual had a mental illness or died by suicide or drug overdose?
- Does registration as an organ donor on a driver’s license include brain donation?
- Additional resources
The goal of the Human Brain Collection Core (HBCC) is to learn about the causes and mechanisms of mental illnesses, which are brain diseases. To conduct this research, we obtain brains from deceased individuals with and without mental illness. The results help researchers develop new therapies and preventive strategies.
Learn more about the importance of brain donation and why people choose to donate.
How does HBCC get donated brains?
We obtain brains through the Office of the Chief Medical Examiner (OCME) of the Central and Northern Districts in Virginia. Our staff are notified of potential donors by the OCMEs. We then contact the primary next-of-kin of the decedent to obtain consent for donation of the entire brain and a blood sample. Our staff audio record the next-of-kin’s consent as official documentation of the donation.
Only after obtaining permission from the next-of-kin, we arrange with the OCME to collect the donated brain. There is no cost to the next-of-kin or the decedent’s family. There is no direct benefit to the family for allowing the donation. The donation is strictly voluntary.
All our procedures are approved by the HBCC Oversight Committee and by the NIH Department of Bioethics.
Will my loved one’s confidentiality be protected?
We protect the confidentiality of the decedent by removing their name and all identifying information from all materials we receive.
Will you need additional information from the family or next-of-kin?
If the family or next-of-kin agrees, we conduct interviews with the family and review the released medical records to learn more about the decedent’s medical and psychiatric history.
This is not required and we will accept a donation even if the next-of-kin does not wish to answer follow-up questions.
What research is done with donated brains?
We and our approved collaborators conduct a vast array of research studies on the neurobiological processes in the brains of people with and without mental illnesses. We use modern techniques, such as RNA and DNA sequencing, to examine molecular composition of tissues and cells in various brain regions.
Visit the For Researchers section to learn more about our research.
If we donate our loved one’s brain, will we still be able to have a viewing/open casket?
Yes, the medical examiner’s procedure is done in a manner so that it will not change or affect the appearance of the deceased person.
Does brain donation delay the return of the deceased’s body to the family or funeral home?
No, brain donation will not delay or interfere with the family’s plans for a funeral, burial, or cremation. The donation process happens very quickly on the same day as the autopsy.
Will brain donation interfere with the cause of death investigation?
No, our procedures will assist with the investigation. We perform a full neuropathological examination of the donated brain and relay our findings back to the medical examiner.
Will we receive any report on your findings?
We generate a report of our examination and provide it to the medical examiner to be included as part of their final autopsy report. Because of the ongoing nature of our studies, we do not provide any individual research results to the next-of-kin or families nor comment about the cause of death. You will need to request this report directly through the medical examiner’s office. It is typically available approximately 3 months after the date of death.
Does your contacting us mean the deceased individual had a mental illness or died by suicide or drug overdose?
No, our call to families of the deceased does not imply any specific medical history or cause of death. The medical examiner’s office refers all individuals to us who pass away suddenly and meet the criteria for brain donation. Only the medical examiner can provide details on the circumstances and cause of death.
Does registration as an organ donor on a driver’s license include brain donation?
No, organ donation and brain donation are separate matters. The designation on a driver’s license does not give brain banks permission to receive a brain. Brain donation is the decision of the primary next-of-kin and their family.
Additional Resources
NIMH Help for Mental Illnesses If you or someone you know has a mental illness, there are ways to get help. Use these resources to find help for you, a friend, or a family member.
The Substance Abuse and Mental Health Services Administration (SAMHSA) is the agency within the U.S. Department of Health and Human Services that leads public health efforts to advance the behavioral health of the nation. SAMHSA's mission is to reduce the impact of substance abuse and mental illness on America's communities.
NIAAA Alcohol Treatment Locator will steer you toward evidence-based treatment, which applies knowledge gained through decades of carefully designed scientific research.
988 Suicide & Crisis Lifeline: If you or someone you know is struggling or having thoughts of suicide, call or text the 988 Suicide & Crisis Lifeline at 988 or chat at 988lifeline.org . This service is confidential, free, and available 24 hours a day, 7 days a week. In life-threatening situations, call 911.
If you would like to participate in future research by pre-registering for brain donation, please visit this site: Brain Donor Project Its mission is to increase brain donation to advance science, leading to the treatment and cure of neurological, neuropsychiatric and neurodevelopmental disorders and to help people understand the critical need and simplify the process of making the gift.