Unlocking the mysteries of the human brain and advancing medical research relies on the generosity of individuals who choose to donate their brain tissue. While many are familiar with organ donation or donating one’s body to science, the concept of brain tissue donation remains relatively unknown.
“After 19 months of living with glioblastoma, recurrence, metastasis down her spine, and additional treatments, it was clear that Kelsey was declining,” Kelsey’s mom, Rachael K., shared. “Amidst all the topics to be discussed with our social worker, I asked about organ donation. I so badly wanted the gift of knowing Kelsey’s heart could be beating in someone else or any part of her could be somewhere alive in the world. While there are some cases where that is possible, for Kelsey, she would not be a candidate for donation. Our social worker quickly followed up with the idea of donation for research. And with those words, one of the greatest gifts born from this tragedy was given.”
As a member of the brain tumor community, learn more about the world of brain tissue donation, find answers to commonly asked questions, and gain insights into its profound impact.
What is brain tissue donation?
After an individual passes away, their brain can be removed post-mortem and donated to a brain tissue bank to help advance research.
Each brain tissue bank has its own procedure on how the tissue is prepared and sent to their facility. This part of the process is all coordinated behind the scenes by their team so that the patient’s loved ones do not have to worry about logistics.
How does brain tissue donation help advance research?
Brain tissue donation plays a pivotal role in propelling advancements in brain cancer research. By selflessly donating their brain tissue, individuals provide researchers with invaluable resources to understand brain tumors comprehensively.
Access to brain tissue for research is a finite resource. Currently, tissue samples collected during a biopsy or surgical resection are used to help the patient’s health care team determine an accurate diagnosis, prognosis, and treatment options, and they may also be used for research.
Post-mortem brain tissue donations allow researchers to study complete samples of tumors, providing a more comprehensive and detailed picture of the disease. For patients with inoperable tumors, surgical resections may not be possible. Post-mortem donation allows researchers of these tumors to gain valuable insight.
If a patient passes away following a recurrence, the tumor’s evolution may change between the time of the most recent biopsy and the patient’s death.
Dr. Michael Taylor of PhD Hospital for Sick Children in Toronto shared with Gift from a Child, “Autopsy tissue is absolutely critical if we want to cure more children with pediatric brain tumors. The biology of the tumor changes over time, and quite obviously, the tumor at the time of death is the tumor that evaded therapy. It’s this tumor we need to learn about in order to treat it so that in the future, we will not need autopsies.”
Post-mortem brain tissue donation allows researchers to evaluate these molecular changes and determine whether the observed changes are natural or treatment induced. These insights help refine treatment approaches and enhance patient outcomes.
In a recent issue of Neuro-Oncology Advances, researchers share that “in providing a sample of the final and fatal iteration of disease, post-mortem tissue affords detailed investigations into the mechanisms and molecular pathways of treatment resistance and tumor evolution. These insights are beyond that which can be viewed in recurrent samples often obtained months prior to death and prior to the withdrawal of treatment.”
For donated pediatric brain tissue through Gift from a Child, a portion of all donated tissue goes directly to the Children’s Brain Tumor Network, the world’s largest pediatric brain tumor biorepository. Researchers and investigators can request samples for their research — which also includes clinical, imaging, proteomic, and genomic data — while still protecting the privacy of the individual.
Scientists can request samples from this repository to conduct studies, test existing drugs against specific cancer types, and explore new therapeutic avenues.
By donating brain tissue for research, patients can help numerous researchers incorporate cell lines from the donation into their studies. According to the Children’s Brain Tumor Network, “Cell lines are essentially a copy of the tumor. They can be continually grown in culture, so they are considered a renewable resource of a biological sample. They can then be used in many ways by researchers, including testing against existing drugs to determine if the drugs might be effective against that particular cancer.”
Another important element to discovering breakthroughs is making a comprehensive effort to collect samples that represent all who are affected by a brain tumor.
“Neuroscientists need access to all kinds of tissue, representing all kinds of donors, in order for the science to be complete,” said Tish Hevel, CEO and Founder of the Brain Donor Project. “Strong efforts are underway now to invite those under-invited and communities of color to participate, as there are not enough samples from minority groups. And so-called unaffected control tissue is needed in every single study, so those brains have tremendous value.”
Furthermore, brain tissue donations have a long-lasting impact. The data and samples collected today can continue to fuel research for years to come. As scientific understanding evolves and new questions arise, researchers can revisit the stored brain tissue and associated data to gain further insights, ultimately driving progress in the field.
“Ten years from now, we’re going to have a whole new set of questions to ask about, and all that data is still going to be there,” said Patti Gustafson, Executive Director of the Swifty Foundation, which funds Gift from a Child. “So we can query that data with all these new questions because now we’re this far down the road. The whole point of the database is that it’s infinite, and everybody can use it.”
Can brain tissue donation impact funeral arrangements?
In most cases, it should not interfere with the family’s plans for a funeral, cremation, or burial. The brain bank representative will work closely with the funeral home to ensure arrangements are not impacted. The process of acquiring the donation can typically be done at the hospital or funeral home.
The donated brain tissue is removed from the back of the head to prevent any disfigurement, so there can still be an open casket viewing. If the family has any concerns based on the patient’s tumor placement, they are encouraged to ask their brain bank contact.
Family can stay with their loved one for as long as they wish after their passing. While most researchers prefer tissue donated within 24 hours, they also understand that the family’s needs come first.
Generally speaking, timing is not an issue for families who want to have a funeral as soon as possible. If the family is concerned about timing for religious reasons, they are encouraged to ask the brain bank upfront to determine whether brain tissue donation is viable.
What is the cost of brain tissue donation?
By working with Brain Donor Project or Gift From a Child, there is no cost to the family for the brain tissue donation. Families will still have to cover the costs of all funeral expenses. Only the brain tissue donation costs are covered.
Does a patient have to live near a brain bank to donate?
While there are a handful of designated brain tissue banks throughout the country, the patient does not have to live near one to donate. The brain bank representative will use their existing network to secure and ship the donation to their location.
The earlier the patient or guardian can consent to brain tissue donation, the more time the tissue navigator and medical team have to prepare and make their plans.
“A tissue navigator in New York probably doesn’t know anybody in Kansas or California,” Patti said. “They have to have these abilities to organize from far away, make connections, find courier services, and do all the things that have to take place. It’s typically around 100 phone calls or emails to facilitate one donation. Obviously, the sooner a family consents, the easier it is to get this in place, and the more smoothly that the donation is going to go, but they will work on the fly as well.”
Can the patient still donate their organs or body to science in addition to their brain?
Patients with brain tumors may have challenges donating organs or tissues for transplants. If it is determined that the patient can donate, it may be possible to donate both organs for transplant and the brain for research. According to the Brain Donor Project, “the recovery teams will coordinate so that both kinds of donations can take place.” Please note that registering to be an organ donor and pre-registering to donate one’s brain tissue are separate processes.
For patients who have completed pre-registration with a medical school for a whole-body donation, “a brain donation would not necessarily rule a patient ineligible for a whole-body donation” per the NeuroBioBank. Many programs still accept the whole-body donation after a brain donation, but not all programs do, so it’s essential to contact the academic program of interest and ask.
Can the patient change their mind?
Yes, a patient can change their mind at any time. They will need to communicate this change with the brain bank, their health care proxy, and close family members.
How does the patient’s health care proxy or family notify the brain bank?
Once the patient has passed, it’s important to notify the brain bank as soon as possible — ideally within one hour — so that their team can set their plan in motion. Families will be given a designated phone number to call once the patient passes. Most families will designate a specific individual ahead of time to manage the phone call to the tissue navigator or brain bank representative.
“Nobody is thinking the minute their child takes their last breath that I have to get on the phone, but it needs to be as timely as you can make it,” Patti advised. “It’s one phone call to say what happened, and then you don’t have to do anything else. More than likely, you’ll call your grandma or sister and say, ‘Oh my gosh, Michael’s gone.’ She’s the one who will then call because you’ve set that up ahead of time, so you don’t have to deal with it.”
Why is it important for patients to inform their health care proxy and family?
While adult patients need to provide their written consent for donation, they should also inform their health care proxy and family members of their wishes. It’s not enough to simply note one’s intention in a will, as the phone call to the brain bank needs to occur shortly after death. By the time a will or other paperwork is reviewed, it would be too late to facilitate a donation.
If a patient changes their mind, it’s also important to update the same family members to ensure they are aware of the change.
How can brain tissue donation help the patient and family?
For some families, brain tissue donation gives them a sense of meaning and hope — a light in the grief following their loved one’s passing.
For a patient like Michael, a 15-year-old teen with recurrent medulloblastoma, he went through an existential crisis once he learned his death was inevitable, questioning the meaning of his life. A tour of his doctor’s lab changed everything.
“Michael always wanted to be a scientist when he grew up, and seeing a mouse in a tiny MRI machine looking at the tumor that came from a post-mortem donation just sparked his imagination,” said Patti, who started Swifty Foundation after her son Michael passed. “He came up with what he called his master plan to donate his body to science so they could find a cure. That decision changed everything for Michael. He had this hope and comfort that he was still going to contribute to science and have an impact. Knowing he was going to help future children gave him purpose and hope.”
“For the rest of us, we could look at his death in a new way,” Patti said. “It kind of reframed it for us. It wasn’t just this huge loss. There was this hope and knowledge that Mikey was still going to be living on — not in the way we would want but in these labs around the country. It has made all the difference for us.”
Brain tissue donation can also comfort family and friends in knowing that their loved one’s selfless act is still making a difference even years after their death.
“Our social worker worked with our neuro-oncologist, and it so happened she was in contact with a researcher in Boston who would welcome receiving Kelsey’s tissue,” Rachael explained. “About a year later, we would receive word from the lab that Kelsey’s tissue samples were critical for two studies they were preparing to publish. It is a gift to know that somewhere out there, her cells are being used to make a material difference, advance research, find breakthroughs, and make it better for the next folks who must walk this path. It is a gift to know that what she lost, what we lost, can have meaning. And, as her mama, knowing that even after her death, she is making a difference, I could not be prouder.”
For donations made through Gift from a Child to one of the six centers of excellence, many families can visit a lab with their child’s tissue if they give Protected Health Intent (PHI) consent upfront at the time of donation. It can be a therapeutic moment for interested families to see how research is being done using donated tissue.
How can an individual consent to brain tissue donation?
While the process of acquiring the tissue post-mortem is the same for pediatric and adult patients, there are differences in where the tissues may go.
Gift from a Child is a national initiative to increase post-mortem pediatric brain tissue donations. They have partnered with the Children’s Brain Tumor Network along with six centers of excellence that have the expertise to develop cell lines and mouse models from the tissue to accelerate cutting-edge brain cancer research. The six centers include:
Ann & Robert H. Lurie Children’s Hospital of Chicago
Children’s Hospital of Philadelphia
New York Presbyterian Hospital-Weill Cornell Medicine
Stanford University Medical Center
Children’s National Hospital
Orlando Health Arnold Palmer Hospital for Children
Families of pediatric patients can work directly with tissue navigators at Gift from a Child to learn more about the donation process and have their questions answered to determine whether they want to provide written consent. When the time comes, the tissue navigator will coordinate all aspects of the donation process.
For adult brain tissue donation, the Brain Donor Project helps people pre-register to become a future brain donor and connects registered brain donors with a brain bank in the NeuroBioBank, a structure of brain banks around the country that store and distribute brain tissue on behalf of the National Institutes of Health (NIH). These brain banks include:
University of Miami Brain Endowment Bank
University of Maryland Brain and Tissue Bank
Harvard Brain Tissue Resource Center
The Human Brain and Spinal Fluid Resource Center
Mt. Sinai Brain Bank
Brain Tissue Donation Program at the University of Pittsburgh
Once connected with the brain bank that will receive the tissue donation, families will receive a 24/7 phone number to call once the patient passes. The brain bank will make arrangements from there for the post-mortem donation.
What are key questions to consider before making a decision?
Deciding whether or not to donate one’s brain tissue is a very personal decision. To help a patient or guardian make a choice, consider these questions from the patient’s perspective:
Would I like to know that my brain helped advance research?
Is it important to me for my entire body to be buried or cremated?
Are there any religious or cultural beliefs that would preclude me from donating my brain tissue? (If you’re unsure, please contact your spiritual leader.)
Do I have a health care proxy or family member I can trust to contact the brain bank and authorize the post-mortem donation following my passing?
Do I have any unanswered questions to help me make an informed decision?
Request Personalized Support
NBTS’s Personalized Support and Navigation team responds to outreach from patients with brain tumors and care partners with quality, unbiased information, resources, support programs, and services. They can help answer questions about the brain tissue donation process and direct patients and families to additional resources to reach an informed choice.