Why Denmark stores nearly 10,000 brains – 04/17/2023 – Equilibrium

In a secluded basement at the University of Southern Denmark, one of the country’s largest, there are rows upon rows of shelves holding thousands of numbered white buckets. In each of them, preserved in formaldehyde, there is a human brain. There are 9,479 in total.

The brains were taken during autopsies of patients who died in psychiatric institutions across the country over four decades, until the 1980s. It is estimated to be the largest collection of its kind in the world.

However, the brains were preserved without the prior consent of the patients or their close relatives, sparking a long national debate about what to do with such a large amount of human organs.

In the 1990s, the Danish Council of Ethics determined that the tissues could be used for scientific research, and it is in this sense that the brain bank of the city university of Odense works.

Some experts say that, over the years, the collection has facilitated the study of many diseases, including dementia and depression. But its existence has also brought to the fore the debate about the stigma of mental illness and the lack of rights for patients in bygone eras.

In detail

The collection started in 1945, after World War II, with brains removed from patients with mental disorders who died in psychiatric institutions in different parts of Denmark.

Originally, the organs were kept at the Risskov Psychiatric Hospital in Aarhaus, where the Institute of Cerebral Pathology operated.

After autopsies, doctors removed the organ before burying the corpse in nearby cemeteries. They would examine the brain and take detailed notes.

“All these brains are very well documented,” Martin Wirenfeldt Nielsen, a pathologist and current director of the brain collection at the University of Southern Denmark in Odense, told BBC News Mundo, the BBC’s Spanish-language news service.

“We know who the patients were, where they were born and when they died. We also have their diagnoses and neuropathological examination reports (post mortem),” explains Nielsen.

Many of the patients have been in psychiatric hospitals for most of their lives. So, in addition to the pathologist’s detailed reports, the scientists also have the medical histories of almost half of the patients.

“We have a lot of metadata. We can document a lot of the work that the doctors did on the patient back then, in addition to having the brain now,” says Nielsen.

The brain archive stopped in 1982 when Aarhaus University moved to a new building and there was no budget to house the collection. In a state of abandonment, the destruction of all biological material was considered. But in a “rescue operation”, the University of Southern Denmark in Odense agreed to house the collection.

the ethical question

For five years, Nielsen was director of the collection. Although he had a vague notion, he was unaware of the full magnitude of the file. “When I first saw it, I was really taken aback.”

Although its existence was never 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 fully.

A major public debate – with the participation of political, religious and scientific groups – was held on ethics and the way in which human remains are conserved, as well as on patients’ rights. The Danish people were faced with something that they kept on the sidelines: mental disorders.

“There was such a stigma surrounding mental disorders that no one who had a brother, sister, father, or mother in a psychiatric ward even mentioned them,” says Knud Kristensen, former president of the National Association for Psychiatric Health.

“At that time, patients were hospitalized all their lives. There was no treatment, so they stayed there, maybe working in the garden, in the kitchen or other things. They died there and were buried in the hospital cemetery”, he told BBC News Mundo .

Psychiatric patients had few rights. They could receive treatment for a specific case without any kind of approval.

Kristensen commented that it was very likely that the patients’ relatives did not even know that their brains were being preserved and said that many of the brains in the collection show signs of lobotomy.

“Bad treatment, based on what we know today, but pretty standard back then.”

Final decision

When Kristensen was president of the association, he was involved in deciding what to do with the brains – a controversy that went through several stages of discussion.

The main assumption was that the organs had been collected without the consent of the patients and their families and therefore, from an ethical point of view, it was not advisable to keep the collection.

So they discussed destroying the materials or even burying them next to the patients they belonged to. But there was no way to identify everyone’s graves and it was even proposed to have a mass burial of all the brains in one place.

After several years, the Danish Ethics Board decided that it was ethically acceptable for them to be used for scientific research without the consent of the families. The association agreed.

“It was said, ‘We did a very immoral thing 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,'” says Kristensen.

The brain collection and all its documentation are available, with certain restrictions, to any researcher presenting a relevant project. This includes international scientists, although they have to submit their projects to an evaluation committee and work closely with Danish scientists.

“My main concern is that whenever scientific research is approved, there are guarantees that the project is carried out ethically,” says Kristensen.

‘Genius’ decision

Each brain is preserved in a bucket of formaldehyde. Additional tissue removed during the autopsy is embedded in paraffin blocks. Scientists have retained many of the original microscopy plates that were made at the time.

Nielsen not only manages the collection, but advises researchers on the best use of the material, applying new molecular biology techniques to examine changes in the brain’s DNA.

“This is an excellent scientific resource and very useful if you want to learn more about mental disorders,” says Nielsen.

For the director of the collection, the fact that scientists decided to keep the brains of patients so many years ago was a “genial” decision for future generations of researchers. “Maybe a long time from now, maybe 50 years or so, someone will come along and know more about the brain than we do.”

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

“One of the big advantages is that there are brains that are so old that they were removed from patients who weren’t given antipsychotic drugs (because they didn’t exist),” Kristensen said. “That means you can compare these old brains to new brains to see what changes these drugs cause (in the organ).”

However, he says the collection is not being used much. “Research costs a lot of money and most psychiatric studies are funded by the pharmaceutical industry, whose main interest is the development of new drugs, not the discovery of the reasons that cause mental disorders.”

Nielsen says that several projects to study diseases such as dementia and depression are underway. So far, however, they have yet to produce results that could be considered “revolutionary”.

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

“The great value of this collection is its size,” says Nielsen. “It’s unique, because if we want to investigate, for example, a disease as complicated as schizophrenia, we don’t have to limit ourselves to a few brains. We can count on a hundred, 500, even a thousand brains for the same project – which allows us to see the variations and the type of damage to the brain that would otherwise go unnoticed.”

This text was published here