- author, Guillaume Marquez
- stock, BBC News
In an isolated basement at the University of Southern Denmark, the largest in the country, there are rows of shelves with thousands of white buckets. Each of them, preserved in formaldehyde, contains a human brain. There are a total of 9,479.
For four decades until the 1980s, brains were collected during autopsies from patients who had died in psychiatric institutions across the country. It is believed to be the largest collection in the world.
However, brains were stored without the prior consent of patients or their relatives, sparking a long national debate about what to do with such large quantities of human organs.
In the 1990s, the Danish Ethics Council determined that the tissue could be used for scientific research, and that is where the Odense City University Brain Bank operates.
Some experts say the collection over the years has helped study many diseases, including dementia and depression. But its existence has also brought to the fore debate about the stigma of mental illness and the lack of rights for past sufferers.
Very well documented
After World War II, the collection began in 1945, with brains taken from mentally ill patients who died in mental institutions in various parts of Denmark.
At first, the organs were stored at the Ryskov Psychiatric Hospital in Aarhus, where the Institute of Brain Pathology operated.
After the post-mortem, doctors removed the organ before burying the body in nearby graves. They examined the brain and took detailed notes.
“All these brains are well documented,” Martin Wiernfeld Nielsen, a pathologist at the University of Southern Denmark in Odense and current head of the brain collection, told BBC News Mundo, the BBC’s Spanish-language news service.
“We know who the patients are, where they were born, when they died. We also have their diagnoses and neurological (autopsy) test reports,” Nielsen says.
Many patients have spent most of their lives in psychiatric hospitals. Therefore, 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 work that doctors did on the patient at the time, and now we have the brain,” Nielsen says.
The Brain Archive was discontinued in 1982 when the University of Aarhus moved to a new building and there was no budget to house the collection. In the case of abandonment, the destruction of all biological material was assumed. But in a “rescue move”, the University of Southern Denmark in Odense agreed to house the collection.
For five years, Nielsen was the director of the collection. Although he had a vague idea, he did not know the full scope of the file. “When I first saw it, I was really surprised.”
Although its existence was never a secret and was the subject of occasional rumours, the unusual collection did not become part of the Danish collective consciousness until plans to move it to the University of Odense were fully disclosed.
A major public debate – involving political, religious and scientific groups – concerns ethics and the way human remains are preserved, as well as patients’ rights. The Danish people faced something that had kept them out of the way: mental disorders.
“Anyone who had a brother, sister, father or mother with a mental disorder had a stigma surrounding mental disorders,” says Knud Kristensen, former president of the National Association for Mental Health.
“At that time, patients were hospitalized for the rest of their lives. There was no treatment, so they stayed there and worked in the garden, kitchen or other things. They died there and were buried in the hospital cemetery,” he said. BBC.
Mental patients had certain rights. They can treat a particular case without any approval.
Christensen commented that patients’ relatives were not even aware their brains were being preserved, and said many of the brains in the collection showed signs of lobotomy.
“Bad treatment, based on what we know today, but very standard at the time.”
When Christensen was president of the association, he became involved in deciding what to do with the brain — a controversy that went through several stages of debate.
The main assumption is that the organs were removed without the consent of the patients and their families, and therefore, from an ethical point of view, it is not advisable to keep the collection.
So they debated whether to destroy the items or bury them near the patients they belonged to. But there was no way to identify all the graves, and it was proposed to bury all the brains in one place.
Years later, the Danish Ethics Committee decided that it was ethically acceptable to be used for scientific research without the families’ consent. Society accepted.
The brain collection and all its documentation are accessible, with certain restrictions, to any researcher who offers the relevant project. This includes international scientists, although they must submit their projects to an evaluation committee and work closely with Danish scientists.
A “better” result
Each brain is placed in a bucket of formaldehyde. Additional tissue removed at autopsy is embedded in paraffin blocks. Scientists have preserved many original microscope plates made at that time.
Nielsen not only manages the collection, but also advises researchers on the best use of the material by using new molecular biology techniques to study changes in brain DNA.
“It’s a great scientific resource and very useful if you want to learn more about mental disorders,” says Nielsen.
For the collection director, the fact that scientists decided years ago to save patients’ brains was a “smart” decision for future generations of researchers. “Maybe after a long time, maybe in about 50 years, someone will come along and know more about the brain than we do.”
“The great value of this collection is its size,” says Nielsen. “This is unique because if we want to study a complex disease like schizophrenia, we don’t have to limit ourselves to a few brains. We can count 100, 500, even 1,000 brains for a single project, which allows us to see variations and the type of brain damage that would otherwise go unnoticed.”
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