By Meghan McCarthy
Ed and Marcia Kung
Ed and Marcia Kung first discovered the Penn Memory Center (PMC) in 2008 when a neighbor asked for a ride to an appointment with his Alzheimer’s doctor.
For the 15 years since, they have been dedicated participants in the center’s Aging Brain Cohort (ABC) study, even planning to donate their brains for scientific advancement after death.
Though without cognitive complaints, their decade-plus commitment to research has trickled into their end-of-life plans. It sounds paradoxical, but the Kungs say the decision to donate their brains was relatively simple: they understood the importance of brain donation, specifically from healthy individuals, in the field of Alzheimer’s disease and related dementias (ADRDs).
Brain donation defined
Brain donation is the process of donating the brain after an individual passes away for scientific advancement.
From a technical perspective, an experienced autopsy technician performs the procedure, carefully removing the brain through an incision at the base of the skull. All other tissues are then properly repositioned and carefully sewn in place, leaving no visible signs in the event of an open-casket service.
At PMC, brain donations are used by scientists throughout the center to progress their research. Donations from healthy participants are especially important.
Beyond serving as a comparison to those with ADRDs, donations from healthy participants help researchers understand how healthy individuals can be ‘resistant’ and/or ‘resilient’ to ADRD development.
“How is it that someone can live into the 80s, 90s and beyond but don’t ever develop Alzheimer’s disease?” Edward Lee, MD, PhD, associate director of the Penn Alzheimer’s Disease Research Center, said. “We don’t have enough autopsies from such people who are ‘resistant’ to developing disease. Conversely, there are brains from normal people who have disease pathologies including Alzheimer’s disease, but they were cognitively normal. What makes these people ‘resilient’ to disease?”
At PMC, research participants can be evaluated and deemed eligible for brain donation. Research coordinators within various studies discuss the process with participants.
From rides to research
When Marcia Kung drove her neighbor to a PMC visit in 2008, she recalls browsing educational materials in the waiting room, including one describing the ABC study.
“I came back and told Eddie about it,” Marcia said. “We were intrigued and decided to sign up. It’s been 15 years of participating, and since then we’ve referred at least three friends and family members.”
As cognitively healthy participants, the Kungs appreciate that their research participation is a yearly check-up on their cognition. After Ed’s brother-in-law, Bob, was diagnosed with Alzheimer’s disease, he decided to donate his brain to aid ADRD research. This decision ultimately inspired the Kungs to follow suit.
“It’s nice to get the validation that we’re cognitively healthy,” Marcia said. “Brain donation felt like a natural extension of our involvement in the Penn Memory Center.”
As the pair thought about the option, their primary considerations centered around religious implications.
Originally from China, Ed was raised in a Buddhist religion. In Buddhism, the cycle of samsara, or life, death, and rebirth, is taught.
As Ed considered brain donation, he wondered what donating his brain may mean in future reincarnations. Marcia, on the other hand, was clear on the choice.
“It’s an ongoing discussion,” Marcia said. “But I don’t think there’s a problem. I think that when you are reincarnated, if that’s what you believe, then you’re going to be your all.”
Although Ed grappled with his religious background, the pair approached the decision with clarity, aligning their participation with their spiritual beliefs.
“It was an easy decision to make,” said Ed. “We told our son and daughter; we didn’t ask for permission.”
An impactful difference
At PMC, tissue from brain donations is examined by neuropathologists at Penn’s Center for Neurodegenerative Disease Research (CNDR). Following that, the individual’s family receives a comprehensive report of what was found in the brain.
Tissue is used in current studies and also banked for future research.
A prime example is seen through the work of Daniel Ohm, PhD, who is a research associate at the Penn Frontotemporal Degeneration (FTD) center.
As a neuroscientist, Dr. Ohm specializes in neuroanatomical distributions and changes that occur in the brain. This means he studies the anatomical regions of the brain, and how these regions are affected by ADRDs.
In the past, animal models have been used for this research.
However, findings from animals may not translate due to differences in anatomy, physiology, or biology. Brain donation has allowed Dr. Ohm’s work to more precisely capture regions and subregions of the brain that may not exist in animal models.
“What is amazing and so invaluable about brain donation is that we can study patterns intrinsic to human anatomy,” Dr. Ohm said. “In my research, we use brain donations to directly inform us of what occurred in a human context, which can direct us to future clinical interventions.”
Brain donations from individuals of all racial and ethnic backgrounds are monumentally helpful in ADRD research.
“Having diversity within brain donation is paramount,” Dr. Ohm said. “We have active efforts to recruit individuals from diverse populations because there can be subtle or large differences in disease pathologies that can inform clinical diagnoses and treatments.”
Factors to consider
Deciding to move forward with brain donation can be a nuanced and incredibly personal decision. For individuals considering the choice, there are several factors to consider.
As with Ed, religious beliefs can cause some hesitation in making the decision of brain donation.
In many world religions, organ and tissue donation, for medical diagnosis and to advance research that can help provide a healthier future for generations to come, is compatible. For those with concerns, discussion with spiritual advisors is encouraged.
Beyond religion, conversation with family members and loved ones is an important aspect of brain donation.
For families like the Kungs, this may be an easy conversation. But, for those with family members less informed about the process, these conversations may not be simple.
Approaching loved ones with transparency and education can help ease these discussions.
Ultimately, these conversations are important because brain donation decisions should be included in medical advance directives and communicated with funeral homes.
An instrumental gift to research
In any study context, brain donation from individuals like the Kungs is an instrumental gift to the field of ADRD research.
The Kungs’ contribution underscores the undiminished rate of surprise findings from autopsies, reflecting the evolving nature of human disease and advancements in tissue study,
“As we become better at studying human tissues, we continue to learn about the diseases that affect how we think, act and exist, in addition to how our brains age successfully,” Dr. Lee said.
To learn more about brain donation at PMC, please click here.
If you are interested in learning more about brain donation, please contact Patricia Salley at 215-662-4373.
If your loved one has existing plans to donate their brain, please contact Felicia Hamilton at 215-662-4474 as soon as possible after death.