Banking on the brain

The thin man with a fat grin strolled into the conference room with a mischievous confidence. “Is this the brain bank?” he bellowed, almost laughing. “I’d like to make a withdrawal. How much brains can I withdraw?” Transaction-wise, the man, who was attending an informational session on brain donation, will much more likely make a deposit. And that suits Kevin F. Bieniek, PhD, just fine.

Donating a brain is viewed differently than, say, donating a kidney or even body donation.The brain is the seat of the soul, as (philosopher René) Descartes said. Your brain is a special organ. It encompasses the entire sense of person and being.

–Kevin F. Bieniek

With a careful flick of his thumb, Bieniek, assistant professor of pathology and laboratory medicine in the Long School of Medicine, pops the blue lid off a plastic container. Inside are over a dozen pink, carefully freeze-packed slices of a human brain. White clouds of cold air escape from the door of the freezer, where other containers are neatly stacked and stored.

“This is what we need,” said Bieniek, the inaugural director of the brain bank at the university’s Glenn Biggs Institute for Alzheimer’s and Neurodegenerative Diseases. It’s his job to acquire a robust repository of brains for scientific research.

When the Biggs Institute was established in 2017, it was intended to be a comprehensive center that offers patient care, treatment and family support as well as advanced research in dementia and other brain disorders. Without brains, research is limited.

Sudha Seshadri, MD, founding director of the Biggs Institute, points to the central role of the brain bank in battling brain disorders.

“We believe a deeper understanding of the many biological pathways leading to dementia is essential to finding new drug targets and effective interventions that work,” she said. “Currently, the best method for understanding the molecular and pathological changes in the brain that cause the symptoms of dementia is examination of the brain at autopsy. We study the brain in detail using molecular methods.”

While large brain banks affiliated with medical centers are located predominantly along the coasts, there is a large swath of the country that is highly underrepresented, said Bieniek.

But in 2021, the National Institute on Aging, part of the National Institutes of Health, named the Biggs Institute a designated Alzheimer’s Disease Research Center — the only one in Texas. The designation helps promote research collaboration, encourages data sharing and open science and offers information and clinical trials for patients and families affected by Alzheimer’s and related dementias.

Texas is the second most populous state in the country, has the second highest number of deaths related to Alzheimer’s disease and is home to a Hispanic population that is among the fastest growing demographic segments in the U.S.

“We’re looking to be a resource for the greater San Antonio and South Texas region, regardless of socioeconomic status, race or ethnicity,” Bieniek said. “But ultimately, where we’re unique, is there’s this very large population that really hasn’t gotten the care from Alzheimer’s disease centers that it needs.”

Seshadri echoed that sentiment.

“We know very little about the unique mixtures of brain pathology in Hispanic persons,” she said. “The brain bank will help us make a precise diagnosis in families with the illness in multiple members and help future generations.”

While the decision to donate one’s brain is intensely personal, Bieniek said the reasons often involve care and concern for tomorrow’s patients.

Brain donors and their families want to contribute to research and help future patients, he said.

“It’s this concept called ‘altruism,’ people who recognize that brain donation is a very selfless gift,” he said. “Even in a time of incredible suffering, incredible tragedy, they want their experience and their family’s experience to help benefit society — people they don’t even know — to move that needle, to be the catalyst to that research discovery that will help heal this disorder.”

The need for closure is another motivation for donors, he said.

After the autopsy, “the neuropathology report goes to the next of kin,” Bieniek said. “We’ll say what we did, what regions of the brain we sampled, what we found and where we found it. Then we’ll give a neuropathological diagnosis or diagnoses if there are multiple things going on. And we try to put it all together — ‘What does this all mean?’”

A donor’s family may want to know how the brain disorder might impact other members of the family, he said. Neurodegenerative diseases have different levels of heritability.

“A family might ask, how are we going to approach this disease, how proactive will we be knowing that a specific diagnosis is imminent,” he said. “There may be family planning implications or lifestyle changes.”

While diseased brains are essential, researchers can’t fully understand brain disorders without comparing them to normal, healthy brains.

In his quest for all kinds of brains, Bieniek plans to reach out to memory care centers, nursing homes, hospitals and clinics. But he acknowledged a certain stigma surrounding brain donation.

“Donating a brain is viewed differently than, say, donating a kidney or even body donation,” Bieniek said. “The brain is the seat of the soul, as [philosopher Rene] Descartes said. Your brain is a special organ. It [encompasses] the entire sense of person and being.”

There also may be cultural or religious barriers and misconceptions regarding brain donation to overcome, Bieniek said. For example, donating will not delay or interfere with a traditional funeral or open casket. Also, “most religions view organ donations as valuable to society and an act of charity and love.”

With 222 donations as of March 2023, Bieniek is confident the brain bank will be pivotal in understanding brain disorders.

“The more cases we get, the more powerful studies we can conduct,” he said. “Everything we sample, everything we collect, we save, we archive and we share with our group, with people across campus, across Texas and the U.S. If they have a good idea, if they’re at a qualified institution and we think they have an interesting proposal, then we can provide them with tissue, and that tissue might be the critical step to discovery.”