This past June, the European Union and dozens of pharmaceutical companies—including AstraZeneca (which sells Movantik constipation tablets), Glaxosmithkline, and Pfizer—announced they’ve been awarded a $131 million research grant aimed at studying neurodevelopmental conditions. The aim of the grant is to “increase our understanding of autism and help to develop new therapies to improve health outcomes and quality of life for autistic people.”

But the research program has been heavily criticized by many of those in the autistic community, who describe the Autism Innovative Medical Studies-2-Trials as not only offensive—many neurodivergent people feel their differences should be celebrated, not “fixed”—but as potentially serving as an argument to stop autistic people being born altogether.

Panda Mery is a university researcher in London and a former journalist, lecturer, and software engineer. He’s also autistic, and when he found out that a huge U.S.-based charity called Autism Speaks was involved in the AIMS-2 project, he grew highly suspicious of what “solutions” this research was seeking out.

“[Autism Speaks] are basically a hate speech organization,” he told me in an interview. “They treat autism like a cancer. You want to get rid of the cancer. You want to get rid of the autism. But autism is part of your identity. It’s like, how can you get rid of the Britishness of someone? How can you get rid of the Jewishness of someone? How can you get rid of the autism of someone?”

Autism Speaks is also held in low esteem by the two other autistic people I interviewed. Dr. Damian Milton, a social scientist at England’s University of Kent, said the organization has a “very dubious reputation with the autistic community.” Cos Michael, an autism consultant, added, “They used to have a prize every year called the ‘curing autism’ hero. They hate autism.”

When these comments were put to Autism Speaks senior director of media strategy Aurelia Grayson, she replied:

“These comments completely mischaracterize Autism Speaks, which is dedicated to increasing understanding and acceptance of people with autism. Our national board and staff include adults with autism and parents of children on the spectrum, guiding every aspect of our mission–from research to family services and advocacy.

Research funded by Autism Speaks shows that autism affects each person differently. As you know, some people can live independently; others need assistance with certain aspects of their lives, such as education or employment; and others have significant medical and behavioral challenges requiring 24/7 care. Through research, we are gaining a better understanding of the many forms of autism, which will make it possible to tailor treatments, resources and supports to individual needs.”

With alarm bells ringing, Mery requested a copy of the AIMS-2 grant agreement under EU transparency rules. On receiving the 664-page document, the alarm bells’ decibels became deafening. One section in particular troubled him:

“Currently, there are no effective medical treatments for the core symptoms of Autism Spectrum Disorder. Our overall goal is to address these shortcomings by adopting a precision-medicine approach to better target treatments to patients through the use of validated stratification biomarkers and by testing novel or repurposed drugs.”

For Mery, targeting the symptoms of autism sounds a lot like “curing autism”—but autism is not a disease, it does not need curing. Cos Michael also objects to this language of “core symptoms”:

“What are they? Are they good things? Bad things? Who decides? Because they keep changing. Through history, the ‘core symptoms’ of autism have changed. It’s about what other [non-autistic] people call them. And ‘targeting them’? Why? Because we want to take them out? It’s so full of…well, hate, frankly.”

While nobody I spoke to wanted to overstate the comparison, there are similarities with how homophobia views homosexuality—as something to be cured. The American Psychiatric Association viewed homosexuality as a mental disorder until 1987 and still views autism as such. Panda hopes one day that will change.

AIMS-2 is poised as a threat to the very survival of the autistic community. The trials aim to identify “biomarkers”—genes which are linked to autism. There’s nothing inherently wrong with research like this, just like there was nothing wrong with Ernest Rutherford’s research into splitting the atom. Gaining knowledge is rarely a bad thing, but how that knowledge is subsequently used is another story altogether.

Targeting the symptoms of autism sounds a lot like curing autism—but autism is not a disease, it does not need curing.
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Rutherford’s research, of course, was ultimately used to create the nuclear bomb; autism biomarkers could be used to inform pregnant mothers that their babies are likely to be autistic. Given the social stigma of autism, the misconceptions around it, and the reality that raising autistic children can be difficult, this could potentially lead to mass abortion and a declining autistic population.

This might sound like dystopian fiction but, as both Michael and Mery pointed out, in Iceland this is already a reality for people with Down’s Syndrome. Icelandic doctors are required by law to tell pregnant women that there is a screening test available which can indicate (among other things) the presence of Down’s Syndrome in their fetus. According to CBS, nearly all the women whose tests indicate Down’s Syndrome, terminate the pregnancy.

“If you get the biomarker research that they’re aiming for, you’ll be able to eliminate a group of people based on the fact that you just don’t want that group of people around,” warned Michael. “It’s designer baby time. It’s eugenics.”

Dr. Milton agrees that the search for autistic biomarkers is “a bit eugenicist,” but he thinks the search will fail. “It’s a genuine concern, but it’s like the U2 song, they’re not going to find what they’re looking for,” he joked. “Autism is an umbrella term describing a way of being, a way of acting in the world which is part of the diversity of people. It’s a category which is social in nature. Trying to find a biomarker for autism is not going to happen as such. Even sub-types of autism is a bit of a lost cause.”

His concern is that millions of euros will be spent on developing drugs that don’t work and may have side effects, and that parents will be told inaccurately that their children have an increased likelihood of autism. All this will improve pharmaceutical company profits, but increase the stigma of autism.

With all this money wasted, what the autistic community itself actually wants to be researched remains largely ignored by AIMS-2. When autistic people were asked what they wanted researching, they answered with things like, “how to reduce anxiety” and “how to improve mental health, adult social care, and adult autism diagnoses.” But, as the answer to most of these problems are unlikely to be “new drugs,” pharmaceutical companies are not interested.

On one point however, the interests of big pharma and autistic people are, at least partly, aligned. Epilepsy is common in autistic people, and Mery, Michael, and Damian all said they would welcome research into drugs to treat it. Research into epilepsy is mentioned in the AIMS-2 grant agreement, but is not as core to the program as many would like it to be.

With all this money wasted, what the autistic community itself actually wants to be researched remains largely ignored by AIMS-2.
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And while the power may seem to be with the EU and the multi-billion dollar corporations, ordinary autistic people do have some leverage in fact. The tests will need what Michael calls “lab rats,” autistic volunteers. “It doesn’t matter how much money they can throw at it,” she said, “If they can’t get autistic people involved, then how can they carry out their trials?”

(One of the companies involved is the world’s second biggest pharmaceutical company—Roche. When contacted for this article, the company denied it was researching a cure for autism and claimed that AIMS-2 was transparent and was consulting with autistic people. Their answers did not satisfy the autistic people I spoke to.)

By Vidya

I can distinctly remember a moment during one of those many (many) days in my first year of medical school when we were sitting in lecture and learning about a disease.

Before my professor described the mechanism of the disease, which involved inflammation of the blood vessels, he paused and cleared his throat. “I want you to know that you may see this disease referred to as ‘Wegener’s granulomatosis’ in textbooks or amongst colleagues. However, we as a profession have decided that we are not calling it ‘Wegener’s’ anymore. Because Wegener, it turns out, was a Nazi.”

He said this solemnly, and then proceeded with the lecture, referring to the disease by its new names. First, in the 2000s, “ANCA-associated granulomatous vasculitis” was used; now, it is often taught as “granulomatosis with polyangiitis” (GPA).

Medicine is rife with old eponyms — diseases or body parts named after their discoverers or researchers — that are beginning to be replaced by more logical names for practical reasons. (The term “rectouterine pouch,” after all, tells us more precisely what we are talking about than “pouch of Douglas”).

But this was the first I had heard of the entire medical profession deciding to change an eponym for the sake of revoking honor from someone whose actions were now deemed immoral. And, more than that, the name change accompanied a small but repetitive teaching of why there was a new name — actively passing on the unethical history that led to greater understanding of a rare disease.

When other diseases gained new names, we were typically allowed to use the original eponym and the logical name interchangeably. But here? We were being told: Don’t use this old name. This man was a Nazi, who used tissue from Nazi prisoners to make his discoveries. And this moment of reflection on the history of this disease’s name happened almost every time I was taught about GPA.

It happened again when we learned about “Club cells,” the dome-shaped cells with short microvilli which serve to protect the lining of our lung’s small airways. We were told that they were originally named “Clara cells,” after the man who first described them in 1937. But Max Clara, we were told, was a Nazi — and so the pulmonary physician community made a dedicated effort in 2012 to have a name-change take effect in January of the next year. They rolled out the change systematically: for two years, they would put “Clara” in parenthesis after “club cell.” After that, “club cell” alone would replace all mentions of the name.

I started thinking about this movement to change names recently in the aftermath of the violence in Charlottesville and the national dialogue on removing monuments. The scientific name changes above signal a systematic effort to remove honor afforded to those who did immoral, horrific things to other human beings in the name of country-sanctioned medical research.

As a medical student, I am proud of the profession for pushing this change and I welcome the continued mention of the change in our medical training — with little effort, it allows us the important benefit of remembering the unethical history of the disease’s discovery without honoring it.

The Statues Must Come Down

But with each of these instances, there is also a growing feeling of disparity in this remembrance.

I rarely encounter the same explanation or historical interludes prefacing some of the tests we use in medicine today, which were developed in the context of racial exploitation in our own country’s history — such as spirometry to test lung function, or the immortalized cell line of Henrietta Lacks.

Soon after I learned how to do a speculum and pelvic exam in medical school, I happened to listen to an NPR Hidden Brain story which detailed the work of surgeon James Marion Sims. Sims, the so-called “father of modern gynecology,” developed the first speculum out of pewter in the 1840s — it was not markedly different from the very same device we use made of steel or plastic today.

There is an important benefit of remembering the unethical history of a disease’s discovery without honoring it.
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He is also famous for perfecting and pioneering a technique using silver sutures to repair vesicovaginal fistulas—an opening between the vagina and bladder that could result from complicated childbirth, which caused women suffering and social stigma from urine leakage.

In 1845, Sims purchased slave women with fistulas and housed them on his property for the purposes of medical experimentation geared towards gynecological research. In his memoirs, he names three of the at least 11 slave women he kept to experiment on — Anarcha, Lucy, and Betsey — brought to him by their owners. For the next four years, he did a series of experiments on them without anesthesia.

According to physician-historian Vanessa Northington Gamble in the NPR story, “there was a belief at the time that black people did not feel pain in the same way.”

In her book Medical Apartheid, writer Harriet A. Washington describes how, when the subjects of Sims’ experimental surgeries screamed in agony while he cut them with a scalpel, his medical assistants would forcibly hold them down. According to her research, women would be awake and naked while he did the procedure, often with many male assistants or interested physician colleagues watching.

One subject of his experiments, Anarcha, underwent 30 surgeries before he figured out how to properly heal her fistula. After that, Sims did the procedure in clinics — with anesthesia — to heal white women with the same condition. He started a women’s hospital after he moved to New York in the 1850s, where he gained his reputation as a surgeon treating women’s gynecological issues.

He reportedly repaired the fistula of a European empress, and became American Medical Association president in 1876 and president of the American Gynecological Society in 1880. According to Washington’s research, Sims also used black infants as subjects for experiments, using scalp incisions to pry skull bones into new positions based on the false belief that their skulls closed prematurely and caused lower intelligence; he was not blamed or persecuted when the infants died.

Washington writes that eugenics provided a contorted rationale for Sims’ and others’ experimentation on slaves:

“Many researchers argued that blacks were so different from whites — less intelligent, much less sensitive to pain, possessing numerous physical anomalies as well as markedly different patterns of disease immunity — as to constitute a separate species. Given this supposedly vast biological chasm between blacks and whites, how could scientists logically infer results of medical experiments from blacks to whites?”

Throughout August and September I started to see more articles in the press about Sims beyond the NPR story; people spurred by the events in Charlottesville started to organize to protest the statues that exist in tribute to him. There is a statue of Sims across from the New York Academy of Medicine, on Fifth Ave and East 103rd St in NYC. The New York Academy of Medicine has released a statement that it supports removal of the statue, writing that it does not belong to the Academy or its property and is in the control of the Parks and Recreation department.

In August, the activist group The Black Youth Project 100 held a protest in front of the statue, with protestors memorably wearing bloody-appearing hospital gowns. The statue currently still stands, though in the aftermath of Charlottesville, New York City declared that it will be going through a 90-day review of “symbols of hate on city property,” and as part of that, the Sims statue was discussed at a public city hearing in late November.

What Really Happened In Charlottesville

Yet another statue stands on the statehouse grounds in Columbia, South Carolina, Sims’s home state, with an inscription commending him for “treating alike empress and slave.” Columbia mayor Steve Benjamin said in an interview in August that the Sims statue is the most offensive one to him of all the statues on the grounds, and that it “should come down at some point.”

Kwoya Fagin Maples, creative writing instructor at the Alabama School of Fine Arts, helped to organize a protest in front of the statue that took the form of a poetry marathon, to show support for the hastening of its removal.

“There have been no preparations, to my knowledge, for it to actually happen. I suppose the protest was a way to support the mayor’s words in hopes that it would move us closer to giving the eleven or more women he experimented on retribution. I think the monument should contain images of the women he used for his discoveries. Personally, I think his image should not be the focus of the monument, if there at all.”

In September, Nature published an unsigned editorial originally entitled “Removing Statues of Historical Figures Risks Whitewashing History,” in which it argued that names or statues (specifically pointing out Sims) should not be removed but instead supplemented with additional plaques or “equally sized” monuments commemorating their victims:

“Sims was far from the only doctor experimenting on slaves in 1849, despite the fact that the abolitionist movement was well under way in the United States. And his achievements saved the lives of black and white women alike. But some historians argue that his experiments could have been considered unethical even for his time.”

The original article was met with strong backlash in many publications and on social media. Nature changed the title of the piece to “Science must acknowledge its past mistakes and crimes” with some content changes, and with an editor’s note apologizing for the original article being “offensive and poorly worded.”

A few weeks later, Nature editor-in-chief Philip Campbell published an apology statement in the journal:

“Removing such statues or other memorials does not erase these individuals or their acts from history. Beyond that fundamental error in the Editorial, the arguments throughout the piece — including an inappropriate framing of the example of J. Marion Sims — and its overall tone were naive and unintentionally served to reinforce the insidious notion that women, people of colour and minority groups do not have a place in science. This notion is wrong. We did not recognize how destructive the overall Editorial was and the effects that it could have.”

When I read about this saga in Nature, I remembered Wegener and Clara again. Why propose to build an “equally sized” monument to stand alongside the existing one, when one could build an entirely new monument altogether? In her NPR interview, Dr. Gamble proposed that his subjects Anarcha, Lucy, and Betsey be depicted instead. “I think what the inscription would say is ‘Betsey, Anarcha, and Lucy, the mothers of modern gynecology.’”

Apart from teaching medical students like me about the history behind the modern practice of gynecology, learning about the experimentation by Sims also brings up important conversations regarding the ability to consent.

In the Journal of Medical Ethics in 2006, physician L.L. Wall argued that “Sims’s modern critics have discounted the enormous suffering experienced by fistula victims” and that, based on Sims’ own writings, his original patients were “willing participants in his surgical attempts to cure their affliction.”

But can any people considered property actually consent? And would a woman truly “consent” to 30 surgeries without anesthesia? The argument is fallacious, dangerous, and openly ignores the intent with which Sims purposefully bought black women for his experiments, not to mention the eagerness of slaveholders to have their slaves returned in better condition for physical labor.

Can any people considered property actually consent? Would a woman a truly ‘consent’ to 30 surgeries without anesthesia?
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While Sims had been criticized by contemporaries as early as 1858 (by African-American surgeon Daniel Hale Williams, according to Washington), Wegener kept his Nazi ties secret for decades. He had joined the Nazi Party in 1932 and it is speculated that he participated in Nazi medical experimentation.

The American College of Chest Physicians awarded him a “master clinician” prize in 1989, a year before his death, but rescinded it after his secret Nazi past was discovered 11 years later through the work of two physicians researching his life in preparation for an intended celebratory article. Sims, for his part, experimented on living women — further exploiting their already harrowing reality of exploitation, using eugenics-based logic to give them no pain medication.

But even more important is the fact that, though Sims practiced 100 years before Wegener and Clara, American assumptions based on false theories of racial difference are still held by some physicians today.

A study last year from the University of Virginia found that a substantial portion of white medical students and residents surveyed believed that black people are biologically less sensitive to pain; in their results, 40% of first and second-year medical students and 25% of residents thought blacks have thicker skin than whites.

American assumptions based on false theories of racial difference are still held by some physicians today.
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One aspect of knowing the history of American medical experimentation is also understanding and empathizing with the views of black patients who continue to endure bias today. My medical school classmate Shelley Thomas is passionate and outspoken about working towards racial justice in health care, and was one of the classmates I interviewed for this article.

She cited acceptance of intrauterine devices (IUDs), a form of long-acting contraception, as one of many examples of history informing patient skepticism. “There are so many populations that are skeptical of IUDs. Some people think, ‘she’s not looking at the statistics, this is just lack of education,’ without knowing the history of forced sterilization,” she explained.

“When you’re talking about putting something inside of a black woman that will stop her from having kids for 5–8 years, the history is there, and without knowing that history, we can make a lot of assumptions about why people are so hesitant about a lot of these different forms of medical advancement.”

When I worked as a clinical research coordinator, my required online training included a section on research ethics that described the history of the Tuskegee trial. Wouldn’t it make sense to require us to preface our learning about, say, the speculum exam with a lesson about the man behind the device?

I often wonder why these histories don’t already exist in medical curricula; why I come across it almost solely in the lay press. I interviewed Dorothy Charles, a classmate a year ahead of me who is an organizer for the national White Coats for Black Lives movement.

“It would be a great to have syllabi on this in medical school,” she said. “We need medical students to learn these social justice issues in medicine, and be educated about the racial history and myths in medicine.”

She suggested having people who are experts in these topics teach it — not necessarily physicians, but instead social scientists or historians. Some might argue medical school is not the place for medical history, but as both Charles and Thomas pointed out to me, then why comment on the Wegener’s name change at all?

How Medical Schools Are Failing The LGBTQ Community

And, Thomas added, “when we don’t address it and don’t talk about it, now you’re having a child whose pain is being ignored because a resident that has gone through our medical education system thinks that black children don’t experience pain the same way that white children do.”

(Studies show that black children are less likely to receive appropriate pain medication as compared to white children, even for a condition such as appendicitis.)

I wonder if having increasing black representation at academic medical centers would push the process of learning about and introducing stories like that of Sims into medical curricula. In an article in the Journal of Urology in 2011, two urologists write that while lay journalists and historians have increasingly studied and critiqued Sims’s surgical discoveries and accomplishments, “relatively little mention is found in standard urology textbooks or journals.”

“Medical sources have continued to portray him unquestionably as a great figure in medical history. This division keeps the medical profession uninformed and detached from the public debate on his legacy and, thus, the larger issues of ethical treatment of surgical patients.”

The authors found that urological textbooks referred to Sims repeatedly as a surgical innovator in their sections on vesicovaginal fistulas. Though a more recent edition of a urological textbook did have a paragraph on the controversial ethics of his practices, it concluded with: “It is generally believed that Sims was trying to enhance the lives of these women and was in concert with accepted mores.”

Before inpatient rounds one morning earlier this year, Thomas gave a short presentation on GPA, which one of her patients suffered from. “GPA used to be called Wegener’s, but they changed the name — I have some thoughts about that, which we can talk about later,” she said. After the presentation, her resident asked her about it, and we had a short discussion as we walked to the first patient room about the issues with changing some names in medicine while continuing to honor others. But these conversations are difficult to initiate as a medical student who is constantly in the position of being evaluated by our superiors.

I hope that one day, across medical schools, before we are even allowed to do a pelvic exam, we are given the context of Sims and his experiments.

“Just like you do with Wegener’s, give that little one slide about the complicated history here,” Thomas told me. “I think that begins the process of honoring these women who suffered.”