Why Denmark has nearly 10,000 brains in storage (and the controversy it generates)

In a remote basement of the University of Southern Denmark, one of the largest in the country, are rows and rows of shelves with thousands of numbered white buckets. Inside each of them, preserved in formaldehyde, is a human brain. In total there are 9,479.

The brains were removed during autopsies of patients who died in mental institutions across the country for four decades, up until the 1980s. It is estimated that it is the largest collection in the world.

However, the brains had been preserved without prior consent from the patients or their close relativessparking a long national debate about what to do with that number of human organs.

Finally, in the 1990s, the Danish Ethics Council ruled that the tissues could be used for scientific research and in this sense the university’s brain bank operates in the city of Odense.

Some experts say the collection has facilitated the study of many diseases, including dementia and depression, over the years. But its existence also brings to light what was the stigmatized topic of mental illness and the lack of rights for patients in days gone by.

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Detailed documentation

The collection began in 1945, after World War II, with the removal of the brains of mentally ill patients who died in psychiatric institutions in different parts of Denmark.

Originally, the brain was kept at the Risskov Psychiatric Hospital in Aarhaus, where the Institute of Brain Pathology operated.

After the autopsies, doctors removed the organ from the corpse before burying it in nearby cemeteriesThey examined it and wrote detailed notes.

“All of these brains are very well documented,” Martin Wirenfeldt Nielsen, a pathologist and current director of the brain collection at the University of Southern Denmark, Odense, told BBC News World.

“We know who the patients were, where they were born and when they died. We also have the diagnoses made and the reports of the neuropathological examinations (postmortem),” explains Dr. Nielsen.

Many of the patients spent much of their lives in psychiatric hospitals, so in addition to the detailed reports from the pathologist, you also have the medical histories of nearly half of the patients whose brains are involved.

“It’s actually a lot of metadata that we have. We can document a lot of the work the doctors did on the patient at the time, and we now have his brain as well,” Nielsen said.

The preservation of the brain ended in 1982, when Aarhaus University would move to new premises without space for the collection. In a state of abandonment, even the destruction of all this biological material was proposed. But in what Dr. Nielsen describes as a “rescue operation”the University of Southern Denmark in Odense, agreed to host the brain pool.

The ethical question

Dr. Nielsen has been director of the collection for five years. Although he had a peripheral idea of ​​it, he was not aware of its magnitude. “When I first saw it, I was really surprised.”

Although its existence had never been a secret and was the subject of occasional rumours, the unusual collection was not part of the Danish collective consciousness until the plan to move to the university in Odense exposed it completely.

A major social debate broke out about the ethical treatment the remains had undergone and on patients’ rights with the participation of political, religious and scientific groups. The Danish people were faced with a social aspect they had kept on the sidelines: mental illness.

“There was such a stigma around mental illness that no one who had a brother, sister, father, or mother in a psychiatric ward would even mention it,” says Knud Kristensen, past president of the National Association for Psychiatric Health, SIND. “mind”).

“Patients were then hospitalized for their entire lives. There were no cures for their disease, so they stayed there, maybe working in the garden, or in the kitchen, or whatever. They died there and were buried in the hospital cemetery,” he told BBC News Mundo.

Psychiatric patients had very few rights. They can be treated for a specific case without any kind of approval.

Kristensen noted that it was very likely that the patients’ relatives didn’t even know their brains were being preserved, and said many of the brains in the collection show signs of being lobotomized. “Bad treatment, based on what we know now, but pretty normal back then.”

Final decision

When Kristensen was president of SIND, he was involved in deciding what to do with the brain, a polemic that went through several stages of debate.

The main assumption was that the brains had been collected without the consent of the patients and their relatives, so it was ethically inadvisable to keep the collection.

So they discussed destroying the organs or even burying them next to the patients they corresponded with. But there was no way to identify everyone’s graves and it was even proposed to en masse bury all the brains in one place.

After several years, the country’s ethics council decided it was ethically acceptable for them to be used for scientific research without requiring the consent of the families. SIND finally agreed.

“It was said, ‘Well, we did something very immoral by collecting the brains, but since we have them, it would also be immoral to destroy the collection and not use it for research purposes,'” Kristensen explained.

“My main concern is that once a study is approved, there are guarantees that the project is being conducted in an ethical manner,” he added.

The brain collection and all associated documentation are available, with certain restrictions, to any researcher submitting a relevant project. This includes international scientists, although they must submit their project to an evaluation committee and collaborate with Danish scientists, says Martin Wirenfeldt Nielsen.

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A “great” move

Each brain is kept in a bucket of formalin, and extra tissue taken during autopsy is wrapped in paraffin blocks. Likewise, they have many of the original microscopy plates made at the time.

Dr. Nielsen not only manages the collection, but guides researchers in the best use of the material, applying new molecular biology techniques to investigate things like changes in brain DNA.

“This is a spectacular scientific resource and very useful if you want to learn more about mental illness”said Dr. Nielsen.

For the collection’s director, the fact that scientists decided to preserve patients’ brains all those years ago was a “great” step for future generations of researchers. “Maybe, in a long time, maybe in 50 years or more, someone will come along who knows more about the brain than we do.”

Knud Kristensen agrees that the collection has potential for new discoveries about mental illness.

“One of the great values ​​is that there are brains that are so old that they were removed from patients who weren’t given antipsychotics (because they didn’t exist), Kristensen said. “That means you can compare that old brain to recent brains to see what changes those drugs are making[in the organ].”

However, he doubts whether the collection is overused. “Research is expensive and most psychiatric studies are funded by the pharmaceutical industry, which is primarily interested in developing new drugs and not in discovering the reasons that cause mental illness.”

But dr. Nielsen assures that there are currently several projects in progress for the study of diseases such as dementia and depressionalthough he acknowledges that they have not yet yielded results that could be described as “revolutionary”.

“But they are already starting to emerge. These projects require a long-term commitment and that means several years before results,” he said.

“The great value of this collection is its size,” Nielsen emphasized. “It is unique because if we want to research, say, a disease as complicated as schizophrenia, we are not limited to a few brains, we can count on 100, 500, even a thousand brains for the same project that would allow us to to see the variations and the kind of damage to the brain that we would otherwise miss.”