Tributes to Nazis, names of diseases generate debate – 06/26/2023 – Science

Edith Sheffer’s son never liked labels like Asperger’s syndrome. But in 2016 a psychiatrist told him he should be proud: his condition was named after Hans Asperger, the Austrian scientist who in the 1930s used his position to help save children like him. By creating a diagnosis that highlighted the intellectual capacity of these children, the psychiatrist said, Asperger tried to save them from the Nazi campaign to “euthanize” children and adolescents with cognitive disabilities.

Sitting next to her 12-year-old son, Sheffer knew that wasn’t entirely true. Now a historian of 20th-century Europe at the University of California, Berkeley, she spent years researching Asperger’s syndrome for her 2018 book, “Asperger’s Children.” Before becoming known as a benevolent savior—”an Oskar Schindler of psychiatry,” according to Sheffer—Asperger faithfully followed the Nazis’ medical path.

His diagnosis, which he later called autistic psychopathy, was part of the broader Nazi medical effort to divide lives into two categories: those worth or unworthy of living. And, as Sheffer was shocked to discover, Asperger had personally condemned dozens of children to death centers. “I don’t want my son to be known by the name of someone who sent kids like him to die,” she told Vox in 2018.

When Shaffer’s book was published, Asperger’s syndrome was no longer included in the Diagnostic and Statistical Manual of Mental Disorders. In 2013, it was included in autism spectrum disorders, in part because there was no solid evidence that it deserved its own diagnosis. But shortened versions of the term continue to be widely used in the autistic community, and many members describe themselves with terms like “Aspie”, derived from the name Asperger.

Since then, Sheffer has been pleased to learn that other medical organizations have largely stopped using the term, including the American Psychiatric Association and the World Health Organization (WHO), which released the 11th revision of the International Classification of Diseases, or ICD. -11. “I think the message got across to the medical community,” she said.

Asperger’s syndrome is (or was) a medical eponym, part of the tradition of naming body parts, illnesses, disorders, and medical tools after great medical figures. Its disappearance illustrates the inherent risk incurred in idolizing someone from another era and adds support to a growing movement to end that tradition altogether. But some scholars argue that even “cancelled” eponyms have a place, serving to remind us of ethical violations that medicine must never commit again.

There was a time when an eponym was seen as medicine’s highest honor. Like monuments honoring great generals, eponyms honored medicine’s brightest minds, ensuring that their names lived on into perpetuity. The best-known example of this is the fallopian tubes, named after Gabriele Falloppio, an Italian priest and anatomist who would have been the first to describe them. Other examples include Alzheimer’s, Parkinson’s or Hodgkin’s diseases, all named after European doctors.

So it came as a shock when, in the early 2000s, it was discovered that dozens of eponyms were linked to National Socialist doctors who had violated all values ​​of medical consent and human dignity. These criminals had their names perpetuated in their lungs, linked to common ailments like arthritis and even craters on the moon. There seemed to be only one possible response: purge the Nazis. More than a hoax, these names were an affront to the medical profession, two doctors wrote in 2007 in The Israel Medical Association Journal.

“We owe it to our patients, to their loved ones, to the victims of these atrocities,” said Eric Matteson, a retired rheumatologist who helped rename a disease of inflamed blood vessels formerly known as Wegener’s granulomatosis.

Starting in 2000, after hearing a rumor that Friedrich Wegener had ties to National Socialism, Matteson and a colleague spent years combing World War II archives around the world. It turned out that Wegener was a Nazi supporter who worked three blocks away from the Lodz ghetto in Poland and may have dissected victims of medical experiments. In 2011, several major medical organizations replaced the name “Wegener’s syndrome” with granulomatosis with polyangiitis, admittedly not as easy to remember (but “Wegener’s disease” can still be found in ICD-11).

The hunt for Nazi names had been launched. It turned out that Clara’s cells, a type of cell that lines the lungs and secretes mucus, were named after a Nazi doctor who experimented on prisoners who were soon to be executed. The cells were renamed claviform cells, reflecting their bulbous shape. Reiter’s syndrome, a form of arthritis caused by a bacterial infection, was named reactive arthritis after it was discovered that its former name was named after a doctor who performed deadly experiments with typhus on prisoners of the Buchenwald concentration camp.

In most cases, the name change accompanied the growing preference for descriptive rather than honorific terms. “Many of us don’t use eponyms because they’re not anatomically informative,” said anatomist Jason Organ of Indiana University. Instead of talking about fallopian tubes, he said, “it makes much more sense to talk about fallopian tubes — that describes what they are.” In some cases, he added, using eponyms incorrectly can even lead to medical errors.

Not all anatomists agree with this uncompromising approach. Sabine Hildebrandt, an anatomical educator at Harvard Medical School, studied in Germany a few years before the legacy of Nazi medicine began to surface. For her, the eponyms offer an opportunity to remind future physicians of a path that medicine must never take again. “I’d like to see them not necessarily as tributes, but as historical markers that can be leveraged for teaching,” she said.

In the classroom, Hildebrandt often highlights Frey’s syndrome, one of the rare medical eponyms that celebrates a female researcher and victim of the Holocaust. A neurological condition that can cause profuse facial sweating when a person eats, the syndrome is named after Lucja Frey-Gottesman, a Polish neurologist who was murdered by the Nazis after being sent to the Lviv ghetto.

Hildebrandt also draws attention to Charlotte Pommer, a name her students are likely unaware of. In 1942, Pommer, a young German anatomist, walked into the laboratory of her department director, Dr. Hermann Stieve, and came across the executed bodies of five people she recognized as members of the Rote Kapelle resistance group. Horrified, she abandoned the field of anatomy.

Pommer gave up her possibility of being immortalized. No part of her body is named after her, and no scientific article names her as the author. Stieve became renowned for his contributions to medicine, including challenging the so-called “rhythmic method” of birth control and studying the effects of stress on the menstrual cycles of death row inmates. Pommer lived in obscurity, treating war casualties at a nearby hospital.

Hildebrandt uses this story to show that complicity was not the only option available to physicians at that time and that there are other ways to be remembered than having something named after you. His 2016 book “The Anatomy of Murder: Ethical Transgressions and Anatomical Science during the Third Reich” is dedicated to Pommer. “It’s a matter of correcting history,” she said.

Viewed in this light, eponyms could be likened to the modern German tradition of Stolpersteine, or “stumbling blocks”—brass plaques carved into cobblestone streets across Europe that commemorate Holocaust victims, bearing their names and the dates they were taken. kidnapped from their homes. These signs are intended to make passers-by stop to look, prompting them to contemplate past atrocities and reflect on the lives of those who have died.

Many scholars argue that medicine should discard Nazi eponyms, but retain those linked to victims or resisters, to honor their histories. But the “right” side of the story is not fixed. As norms and standards change and scholars like Sheffer and Matteson surface new damning evidence, many more will surely fall from grace.

“If you pull a lot of the loose threads that are out there, a lot of things will fall apart,” Organ said.

Sheffer highlights yet another problem with eponyms: they often don’t even honor the right person. The term “Asperger’s syndrome” emerged in the 1980s at the suggestion of a British psychiatrist named Lorna Wing. But Wing itself has done much more extensive research into the condition that would earn the name Asperger’s. “Asperger’s doesn’t deserve the credit,” Sheffer said. “If we’re going to use an eponym, it should be ‘Wing syndrome’ because we’re following her definition, not Asperger’s.”

There is also a more fundamental reason to get rid of eponyms: singling out an individual obscures the reality that medicine advances through collaboration, debate, and gradual consensus. But that’s a lesson even doctors are still learning.

“Trying to conserve an eponym and strip it of its honorific meaning is probably very, very difficult,” said Jason Wasserman, a bioethicist at Oakland University School of Medicine who writes about medical ethics in the Nazi era. “The glory of discovery is built into the medical culture.”

^{Translated by Clara Allain}