I. The Journal Article that Birthed a Movement
Broadly speaking, the general public doesn’t read scientific journals. Most people subscribe to magazines like Time or Reader’s Digest, not academic publications like Nature or Science. Yet this doesn’t mean that scientific journals can’t have a massive impact on the way the public behaves. One fateful 1998 article in The Lancet sparked a debate that continues to rage to the present day, with partisans on both sides of the issue staunchly sticking to their guns. If the issue discussed in The Lancet‘s article was the health benefits of chocolate, or how valuable calorie counts are to good dieting, there would have been minor but ultimately not heated debates, the kind you’ll find in online forums. (Or, nowadays, Facebook threads.) But the subject of The Lancet‘s article, vaccines, matters a great deal to everyone. Vaccines have helped eliminate or substantially reduce diseases that once ravaged the world, particularly smallpox, which in 1980 was declared eradicated by the World Health Organization (WHO). A lesser known but nonetheless troubling disease called rinderpest faced its death knell at the start of the 21st century due in large part to vaccines. It was eradicated in 2011. For all of the undeniable benefits of vaccines, however, The Lancet‘s article suggested a sinister externality of vaccination: autism.
Dr. Andrew Wakefield, listed as AJ on the roster of 13 authors for The Lancet article, spent much of the 1990’s seeking links between vaccines and disease. In a 1993 paper he co-authored with six other people, Wakefield posited a link between the measles vaccine (commonly called MMR, for its use in preventing measles, mumps, and rubella) and Crohn’s disease, an intestinal disorder. Later scientific studies failed to replicate Wakefield’s claims. This did not stop Wakefield from further seeking out potential harm done by vaccines, the MMR vaccine in particular, which culminated in the now infamous 1998 Lancet article, entitled “Ileal-lymphoid-nodular hyperplasia, non-specific colitis, and pervasive developmental disorder in children.” (Predictably, in the extensive media coverage of this controversial article, the clunky title never gets mentioned.) Wakefield and his colleagues argue in the article that based on their research, there is good reason to believe that the MMR vaccine could serve as an “environmental trigger” that awakens “developmental regression,” i.e. autism. Although the article stated no direct causal relationship between the two, it nonetheless posed a serious challenge to the standard practice of vaccinations, if it was true.
The anti-vaccine movement is an uphill battle, and Wakefield is its Sisyphus.
If you go to The Lancet‘s and find Wakefield’s article, one word stands out: retracted. Not long after its publication, the article faced intense scrutiny, and over the course of the next ten years Wakefield’s reputation and his scientific findings fell into irreparable disrepute. In 2010, The Lancet retracted Wakefield’s article, meaning it disavowed its scientific legitimacy and refused to associate its name with it. Scientific journals publish articles from researchers all around the world, and it is a natural part of the scientific process that some will disagree on certain conclusions. So long as the author(s) of an article are practicing good science, a journal will entertain the possibility of publication. Sometimes scientific journals publish disagreements — The Lancet did just that a year after Wakefield’s 1998 article, which featured arguments against Wakefield and a reply by the man himself — which is not a sign of contradiction on the part of the journal’s editors. Like any academic discipline, science is replete with disagreement, a fact that ultimately helps facilitate new scientific conclusions. Even if an old article is proven wrong by a newfound consensus, old articles remain in the journal archive, a paper trail of a dying belief. A retraction appears only when an egregious violation of scientific practice has taken place: a manipulation of data, a mishandling of test subjects’ rights, an outright fabrication of research. That Wakefield’s most famous article bears the word “retracted” on the official website of its publication says everything about his standing as a scientist.
Wakefield’s article was retracted on numerous grounds, primarily for misrepresenting how he performed his study of only 12 patients. Wakefield was ultimately found guilty of numerous faults, including paying children 5 GBP at his son’s birthday party to obtain blood samples, performing unnecessary tests that he was ill-qualified to perform (such as lumbar punctures), and taking money from lawyers representing angry parents who believed the MMR vaccine damaged their children. Of course, on the grounds of sample size alone, Wakefield’s article should be questioned even if it had passed every test of legitimacy in how the study was conducted. 12 patients does not a syndrome make. But his ethical and professional failings in conducting the MMR/autisum study loom large over any of his other faults and successes. These days, Wakefield still spearheads the anti-vaccination cause, even going so far as to direct an anti-vaccine documentary propaganda film called Vaxxed: From Cover-Up to Catastrophe.
The closest analogue to Wakefield comes from the world of film, rather than science. Wakefield’s doubling down on his anti-vaccine stance makes him a mirror image of Tommy Wiseau, director of the “so bad it’s good” masterpiece The Room. Although The Room has become one of cinema’s greatest punchlines, Wiseau continues to appear at screenings of the film across the nation, indifferent or maybe even oblivious to the fact that the crowd is there to hate-watch his movie. When it comes to infamy, Wakefield’s reputation mostly stems from the first two letters of that word: few in the scientific community think he is credible, and everyday people who know his name think him a proponent of agenda-driven pseudoscience. Yet Wakefield chugs ever on, attending rallies and, recently, presidential inaugurations. The anti-vaccine movement is an uphill battle, and Wakefield is its Sisyphus.
Normally, being scientifically debunked by dozens of researchers would be enough to send even the most affable of scientists into exile. But Wakefield shares with Wiseau one other major thing: a cult audience. The belief in the importance of vaccines remains mainstream, but a small fringe has latched on to Wakefield’s research. Some university professors have come out as anti-vaxxers. Celebrities like Jenny McCarthy and Robert DeNiro have either parroted Wakefield’s agenda or at the very least sought to revivify it in a public sphere. The sitting president of the United States, Donald Trump, has on more than one occasion played the euphemism game in discussing the anti-vaccine cause. For all of Wiseau’s faults, the worst his cult audience could do is shanghai unsuspecting filmgoers into sitting through 99 minutes of cinematic dreck. Wakefield’s followers pose a much graver threat.
II. An (Im)probable Movement
Scientific advancement takes place in laboratories, classrooms, and hospitals on a daily basis. Yet the vast scientific progression that has led to things like the eradication of polio also begets pseudo-science, the Joker to science’s Batman. When people are let down by hospitals, they sometimes turn to supplements and vitamin cocktails whose ability to cure ailments ranks questionable at best. Adam Conover, the host of the comedic fact-finding show Adam Ruins Everything, likens these faux-medicinal remedies to snake oil. Yet the lack of scientific proof for these supplements, given the circumstances under which many people come to believe they’re valuable, explains why people turn to them in the first place. As astounding and effective as modern medicine is, it doesn’t always work. Cancers return. Antibiotics can fail to halt a spreading infection. It is a truism of practicing medicine that even the stuff that works, sometimes doesn’t. Doctors acknowledge this grim reality every day they practice; many patients come to the same conclusion after some sober reflection. But for many — understandably so, it’s worth adding — “it just didn’t work this time” fails as an explanation. When science and medicine can’t deliver, people turn elsewhere. The anti-vaxxer movement succeeds because of, not in spite of, the paucity of evidence linking vaccines and autism.
Wakefield’s research didn’t so much create the anti-vaxxer movement as it did provide it a sheen of legitimacy, even after he and his work were rubbished by the scientific community. In this way, the anti-vaxxer movement is not unlike the 9/11 “truther” movement: these groups present scientific-sounding evidence, and accurately point out that unexplained phenomena exist in the documentary record. Where there’s a gap, there’s a conspiracy waiting to emerge. Parents whose children have autism must reckon with one such gap when it comes to understanding how a child gets autism. There’s no one single cause, no one clearly traceable biological line that would enable a parent to understand why their child lives with the disorder. If you peruse through any number of primers on autism, almost all of them contain language to the effect of: “Autism’ has numerous causes, including environmental and genetic ones.” Parents and researchers would much prefer a description with the certitude and clarity of a flu diagnosis: a virus enters your body and starts messing things up. As of now, autism allows for no such explanation, and until it does vaccines will in the eyes of anti-vaxxers remain a culprit.
Politician and Celebrity Statements Against or Questioning Vaccines
A list compiled by writer Lindy West for Jezebel in 2014 reveals an important distinction amongst anti-vaccination groups. Some, such as Wakefield and Schneider, openly claim that vaccines cause autism, and are thus “anti-vaccine” in the traditional sense. Others don’t go so far as to explicitly make that connection, but they will align themselves with anti-vaccine movements for other reasons. A common refrain, one espoused by McCarthy and many others, maintains that anti-vaxxers “aren’t anti-vaccine; they’re pro-safe vaccines.” There’s also the argument that it’s the prerogative of parents to decide whether or not they give their kids any kind of medical treatment, even if it’s safe. These more rational — if still tenuous — lines of reasoning provide the otherwise controversial and reviled anti-vaxxer movement with credibility, the kind of common sense talking points that could sway anyone to the cause. Based on the science alone, people have little reason to fear vaccines. But if the anti-vaxxers can appeal to parental rights and to medical safety, suddenly they’re on firmer ground.
III. Can Science Save the Conversation?
Vaccine skepticism will always be grasping for evidentiary and logical footholds. To amend Milton Friedman, “We’re all pro-vaccine now.” This year, Minnesota faced a measles outbreak unlike anything it or any American state had seen in a long time, and the ax of blame was swift to fall on Wakefield and those like him who promoted the anti-vaxxer cause. But the anti-vaxxer community is resilient, and deeply supportive of its members. When you read interviews with people like McCarthy, they speak of a “community” with its own language and conventional wisdom. Certainly, many if not most anti-vaxxers want what is best for their kids, and even if their science fumbles, their intentions do not. Reconciliation between the broader scientific consensus and the community of vaccine skeptics requires patient discussion, not the demonization that regularly happens in this debate, where health, and lives, are on the line.
The data unquestioningly favors the pro-vaccine side. In contrast to the minuscule test group used by Wakefield in his 1998 article, studies performed on children of vast sample sizes confirm that there is no link between vaccinations and the MMR vaccine. Should you not be terribly interested in perusing the intricate language of a scientific journal article, the American Academy of Pediatrics compiled and summarized numerous studies rebutting vaccine skepticism into a well-organized document. Like any eager initiates to a cause, anti-vaxxers will insist on numerous flaws in these studies: biases on the part of researchers, incomplete data sets, and, of course, that pesky problem of open questions. That the anti-vaccination view features considerable flaws scientifically — for example, if vaccinations can cause autism, why isn’t autism extremely common given the high rates of vaccination in the Western world? — doesn’t matter to its proponents if they can easily flip the script on the scientists.
The general thrust of vaccine skepticism goes something like this: “If vaccines don’t cause autism, then why have the number of autism cases risen in recent decades, when widespread and sometimes mandatory vaccination became commonplace?” Correlations not equaling causations notwithstanding, there’s a simple explanation for the (correct) point that autism rates have spiked in the latter half of the 20th century. Jessica Wright, writing for The Scientific American, explains two factors that have contributed to the rise in autism diagnoses: (1) awareness and (2) better diagnostic practices. As recently as the 1980s, autistic individuals were institutionalized without a proper diagnosis, meaning that cultural memory doesn’t account for dozens of people who today would get the proper diagnosis. The general public’s knowledge of autism is a recent historical development, one that is getting better with plenty of room for improvement. This heightening of awareness goes hand-in-hand with the diagnostic practices that have led to better scientific understanding of autism by scientists, parents, and people in the general public. Autism isn’t a new disease; our knowledge of it, in the grand scheme of things, is. Anti-vaxxers too often confuse the novelty of the former with the latter, in so doing allowing themselves to fall prey to the correlation equals causation trap.
No one number will do the trick. Whipping out yet another study debunking the “vaccines cause autism” claim will embolden those who do vaccinate their kids and galvanize those who believe that vaccines just aren’t safe enough yet. The lesson that many have yet to learn on this issue is the same one illustrated by Wakefield’s article in The Lancet: once a scientist’s study is released into the world, he or she loses control of how that study will be used. No matter how much ignominy follows Wakefield for the rest of his life, this fact is to his advantage. The scientific community will attempt to bury his research deep into the ground, but the anti-vaccination movement made The Lancet article a zombie. Killing it seems to have only made it stronger; Peter J. Hotez at the New York Times speculates that due to an increase in vaccination abstentions throughout Texas, the state is liable to experience potentially deadly measles outbreaks. Wakefield gets to sit with celebrities and presidents well over a decade after his credibility crumbled in his native United Kingdom. Wakefield’s fame, isolated and uncertain as it is, fits the era of “alternative facts.”
But if Wakefield knows that his colleagues wouldn’t give him the time of day, the general public, including and especially parents of autistic children, couldn’t care less about internecine scientific debates. Most people do not have the luxury of perusing through scientific literature for hours on end to understand the context of the vaccines/autism discussion. The majority shrug off the minor side effects of vaccines, but a significant minority is racked with uncertainty, an uncertainty likely motivated by desire for their children’s health. But when it comes to the rules of herd immunity, eventually uncertainties must be skipped over in favor of health. By most proper scientific accounts, vaccines do not cause autism and they do prevent serious diseases around the world.
In remediating the fraught divide between the broadly vaccinated public and the vaccine-skeptical minority, science is important, but it is not enough. Presenting the facts must be part of the methodology used to sway people to the importance of vaccination. For anti-vaxxer parents, however, science alone was probably not the sole source of their beliefs. Paraphrasing a famous saying of Jonathan Swift’s, “One cannot be reasoned into something that she was not reasoned into in the first place.” Bringing vaccine skeptics to the side of vaccination requires meeting them in the middle, of sympathizing with the concerns they have for their children while assuring them of vaccine safety standards and, above all else, that not vaccinating means putting more than just one kid at risk. With measles cases cropping up across the United States after pockets of individuals refused vaccination, no time is better than the present to bridge the space that separates anti-vaxxers from the rest of their communities. Preventing disease should unite us all in the end.