The exiled doctor whose fraudulent research spread rampant vaccine distrust
For as long as vaccines have been around, there have been people against them. Generally, this is just a trend with any new human invention. But in a case of mistaken correlation for causation, people began to think the measles, mumps, and rubella vaccine was the cause of higher rates of autism in children. Most of this fear can be traced back to one fraudulent research study published in 1998. One of the authors, British doctor Andrew Wakefield, was caught up with lawyers, business schemes, ethics violations, and scientific fraud, but the study’s effects are lasting on the children of the world.
Since the beginning, people have mistrusted vaccines
The very first vaccinations began in the early 1800s for smallpox and, to be honest, the method was more than a little frightening. They would scratch a child’s arm and insert a fluid from the blister of someone who’d already gotten the vaccine. They initially made the vaccine from cowpox, a similar disease that infected cows.
People were against them for a variety of reasons, from religion to distrust in medicine to their own incorrect beliefs about how disease spreads. But once the United Kingdom’s government passed the Vaccination Act of 1853, which ordered mandatory vaccinations, people became upset about the infringement on their own freedom.
The fear of vaccines sprung up again in the 1970s around the diphtheria, tetanus, and pertussis (DTP) vaccine, but there was little scientific evidence to back up claims that the DTP vaccine was harmful. However, the sentiment did not completely die and soon enough people turned to fearing a different vaccine.
In the 1990s, some parents of children with brain disorders began blaming the measles, mumps, and rubella (MMR) vaccine for their problems. A few researchers had suggested there may be a link between autism and vaccines, but it hadn’t been fully investigated yet. The parents pushed their concerns enough to get a doctor involved.
That doctor already believed the MMR vaccine caused Crohn’s disease and he was ready to make money off of it
The doctor, Andrew Wakefield of London’s Royal Free hospital, already thought that the MMR vaccine was actually causing Crohn’s disease, an inflammatory bowel disease. He hypothesized that repeated infection of the gut with measles, from the MMR vaccine, was causing Crohn’s disease. So he set about researching the potential link.
In 1995, Andrew Wakefield and several other British researchers published a study showing they had found that people vaccinated with the MMR vaccine were more likely to have bowel disease than people who hadn’t been MMR vaccinated. However, some researchers questioned Wakefield’s expertise and credibility because he was trained as a surgeon, not a pathologist.
Two years after the Crohn’s and MMR paper, a different study came out that found no association between inflammatory bowel disease and the measles vaccine. A little later, in 1998, the U.K. Department of Health reviewed Wakefield’s papers on Crohn’s disease and determined there wasn’t any support for the hypothesis that measles caused Crohn’s.
But Wakefield had already come up with a business plan. He thought you could diagnose Crohn’s disease by finding measles virus in the bowels, so he wanted to make a company to do just that. He predicted they would make millions. Later, he expanded his business idea even further to capitalize on new claims.
Wakefield was paid to find evidence against the MMR vaccine
Around the same time, Wakefield was hired by a lawyer, Richard Barr, to do research. Barr wanted to file a lawsuit against the drug companies making the MMR vaccine. He was doing it on behalf of the families accusing MMR of harming their children, as part of the anti-vaccine group JABS.
Barr needed scientific evidence to support his claims, though, so he hired Wakefield to find it. Wakefield was paid a total of about $750,000 for his research. He was earning more than eight times the salary he officially reported. But the hospital and college he worked at were a little uncomfortable with this payment, so they put the money in a charity first and then paid Wakefield through it.
Before Wakefield could find any evidence of MMR being harmful, he first needed patients. Some parents were blaming the MMR vaccine for their children’s autism because they showed symptoms soon after getting the shot, so Barr asked the parents in JABS to contact him if their children had any Crohn’s disease symptoms.
These children were then referred to Royal Free, the hospital Wakefield worked at, and became crucial to a new study that frightened families across the U.K. and USA. As for the validity of the study, investigative journalism revealed shocking details about the methodology years after it had already done the damage.
He used invasive procedures on the kids, despite never getting approval from an ethics team
Wakefield didn’t find Crohn’s disease in any of the 12 children referred to the Royal Free, but he did perform a series of invasive procedures on them. This included MRI brain scans, lumbar punctures (aka spinal taps), and ileocolonoscopies, but this wasn’t actually approved by the ethics committee, despite Wakefield’s report that they were.
The children were all between three and ten years old and had some combination of bowel and behavioral issues. Wakefield took their data and decided it was a new syndrome that he dubbed “autistic enterocolitis.” Children with autism do often have bowel issues more than children without autism, but this syndrome is not officially recognized as a real condition.
The parents of the children tested were concerned because their kids experienced “behavioral regression” after receiving the MMR vaccine. Supposedly, several of the kids became autistic and lost skills they’d already learned, like language. Once the research was published, this part of the paper was probably the most concerning to the public.
While working on this research, the lawyer Barr wrote to Wakefield, “I have mentioned to you before that the prime objective is to produce unassailable evidence in court so as to convince a court that these vaccines are dangerous.” Going into research purposefully trying to prove something, without leaving room for being wrong, is never a good thing.
Autism rates have increased in the past years, worrying parents
The concern that vaccines cause autism comes from the fact that symptoms often begin near when kids get vaccinated. This is unavoidable, though, because the first vaccines are scheduled to be administered shortly after kids turn one year old, which is right around the same time that autism first shows up.
There’s also concern because over the last few decades, both autism spectrum disorder (ASD) diagnoses and vaccination rates have been increasing. In 1992, one in 150 children had ASD. But in 2004, that jumped up to one in 68. So what’s going on? Well, there are a few possibilities, but scientists aren’t quite sure yet.
In the 1940s, only about one in 10,000 children were diagnosed with autism. Obviously, this is a huge difference from the numbers now, but this increase can be explained. It’s because from the ’40s to the ’80s, only kids with extreme symptoms of autism were diagnosed, but now we view it as a spectrum.
As for the rise in diagnoses from the 1990s till now, scientists don’t know exactly what’s causing it. It might be that there’s just more autism cases being reported and diagnosed, whereas before kids went undiagnosed. It could be that the definition of ASD has changed to include more people. Or, it could be an actual increase in people having the disorder.
Wakefield never found the evidence he needed and ignored any data that went against his theory
Wakefield’s theory about autism was that measles virus from the MMR vaccine caused gut inflammation that let harmful proteins leak out of the gut, which then got into the brain and damaged neurons, causing autism. But in order to prove this, he had to find evidence of the measles virus in the children.
Wakefield didn’t do all the research by himself, though, so someone else was tasked with finding the virus. One of the graduate students in Wakefield’s gastroenterology lab, the biochemist Nicholas Chadwick, looked for traces of the virus in the children. But he never found it. Wakefield just shrugged this off.
The lack of recognition for the negative results wasn’t an isolated case. At a judicial hearing many years after the research was published, the graduate student Chadwick said that Wakefield only talked about data that supported his hypothesis. He pretty much ignored any data that went against the idea that this new syndrome existed and that MMR vaccination caused it.
Chadwick said, “Not many people thought [Wakefield] would be taken that seriously. We thought most people would see the Lancet paper for what it was—a very preliminary collection of [only 12] case reports. How wrong we were.” Chadwick himself didn’t even want his name on the paper, and thus was never listed as an author.
While doing research, Wakefield adapted his business plan to capitalize on the vaccine fear he was planning to spread
Meanwhile, during this research, Wakefield decided he was not done with his business plan; he planned to adapt and expand it. In addition to diagnosing Crohn’s disease, the company would also manufacture vaccines, provide treatment for autistic children, and diagnose this new syndrome “autistic enterocolitis” that he’d come up with.
Wakefield applied for a patent on a measles vaccine he’d made. The difference between his vaccine and the standard MMR was that his was purely for measles and did not vaccinate against mumps or rubella. He filed this patent before publishing the study implicating MMR vaccination as a cause of autism.
Wakefield faked the data in his study right before publishing it
But before publishing the paper on the “new syndrome,” Wakefield fudged some of the data on the 12 children. For instance, the parents had said their children developed behavioral symptoms between one and 56 days after getting the MMR vaccine, but Wakefield published the range as one to 14 days.
Plus, it was originally written down that six of the children had normal colons, but this was changed to four. And while the paper said only eight of the families blamed MMR for their child’s symptoms, it was actually 11 of the 12 families. Other data was similarly changed for the published paper, but the public didn’t know any of this until it was too late.
Finally, the time came to publish the research. In 1998, Wakefield published the paper on the 12 children in the medical journal The Lancet. In the paper, he described the new syndrome that combined inflammatory bowels with regressive developmental symptoms and recounted data from the children’s many medical tests.
The study heavily implicated the MMR vaccine as the cause for the symptoms, but provided no evidence other than that the parents saw the behavioral symptoms develop soon after vaccination. At the end, they literally wrote, “We did not prove an association between measles, mumps, and rubella vaccine and the syndrome described.”
Despite being paid to do this research, Wakefield never listed his conflicts of interest
Normally when researchers submit a study to a peer-reviewed journal, they list any conflicts of interest that may have influenced their results or interpretation of the data. Something like the money Wakefield got from Barr, or perhaps the patent he had filed for, would be called conflicts of interest.
But Wakefield didn’t list either of these conflicts on the research paper. Instead, he listed a charity at the hospital, Special Trustees, which the money from Barr had been funneled through to him. Upon publication, the public had no idea Wakefield was being paid by Barr or that he had the patent.
Wakefield proceeded to advocate against the MMR vaccine
Wakefield and the Royal Free medical school held a press conference announcing their findings. Wakefield said he thought the MMR vaccine was causing the new syndrome because it was three vaccines combined in one. He recommended using a single-antigen vaccine instead, just like the one he had patented not too long ago.
The press took off with the vaccine theory and thoroughly scared the public, despite the study’s very small sample size and lack of actual evidence. Remember, the published paper only suggested that the MMR vaccine caused the autistic symptoms because the parents thought it did based on timing.
To the public, it seemed that these 12 children were just patients of the Royal Free hospital that had come to get treatment for various bowel issues, not specifically referred like they really were. None of these kids actually lived in London, where the hospital was located. One kid was even from the USA.
And no one knew that most of their parents were clients of Barr, the lawyer paying Wakefield, who the public also didn’t know about. Plus it was hidden that these kids had been specifically chosen because their parents blamed MMR, which makes for a pretty biased study sample.
Wakefield was fueling the vaccine scare because his business scheme depended on it. He started another company to do tests on tissue and blood samples from children. The father of one of the study’s children was set to get 22.2% of the shares and a few other people were in on it, too.
Even the Royal Free hospital and the medical school Wakefield researched at were in on the business plan, but they tried to keep it hidden. However, the business never fully came to fruition because someone was savvy to Wakefield’s shadiness. An investigative reporter had been assigned to look into Wakefield’s research.
New university management asked Wakefield to repeat the study, but he never did
But before the public learned of the true story behind the research, Wakefield’s story went in a new direction. The school, University College London (UCL), got a new head of medicine, Mark Pepys, who didn’t like Wakefield. Pepys and UCL’s provost wrote Wakefield a letter about their concerns with his business.
They said the business appeared “to depend on premature, scientifically unjustified publication of results, which do not conform to the rigorous academic and scientific standards that are generally expected.” They weren’t going to let him get away with his scheme. Wakefield’s luck had run out, but his public reputation was still relatively intact.
University College London asked Wakefield to research the matter further, to either confirm or deny that the MMR vaccine causes autism, inflammatory bowel disease, or the “autistic enterocolitis” syndrome. They wanted him to replicate his findings with 150 children, since repeatability is pretty crucial to the validity of science.
He never did a second study. After asking for an update, and finding Wakefield had nothing to show for the months since the meeting, the school was done with him. In 2001, they paid him to leave his job. But at this point, the public still knew nothing about Wakefield’s scheme to make money off the vaccine scare. They were still under the impression that his research was valid.
After the paper’s publication, a crisis blossomed in Great Britain and the U.S.
Not long after The Lancet published the 1998 Wakefield paper, parents in Great Britain and the US began delaying or denying vaccinations for their children. In Britain, the MMR vaccination rate went from 92 percent to below 80 percent in the years following the study’s publication. People were scared of the vaccine.
More studies came out in support of Wakefield’s hypothesis. One lab announced they had found measles virus in autistic children, but when the U.K. High Court asked a molecular biologist to investigate their lab, he found a lot of problems. They had poorly calibrated their equipment and found DNA, instead of RNA, which measles genes are made of.
This drop in vaccination rates threatened something called “community immunity” (also known as herd immunity). The idea is that when enough people are vaccinated, the disease can’t spread widely because an infected person will mostly encounter immune people. Thus, susceptible people will rarely encounter each other and the disease won’t go beyond one person.
Some people can’t be vaccinated because they’re allergic to ingredients or they have another disease, like one that affects the immune system. For these people, community immunity is very important for keeping them safe from diseases like measles. However, scaring people away from vaccinating their children makes it more likely that these people will get infected.
Quickly, countless other scientists debunked Wakefield’s theory
Alongside the vaccine scare, studies were coming out that showed no relationship between MMR and autism. Scientists at Boston University studied the medical records of three million children (compare that to 12!) and found that MMR vaccinated children were no more likely to develop autism than those who hadn’t been vaccinated.
Other researchers published similar studies at different universities. And while the public was panicking over vaccines, some people began questioning the validity of the original Wakefield study. One investigative journalist, Brian Deer, uncovered all the shady aspects of Wakefield’s research over the course of the next several years and was ready to publish his findings.
Finally, the public learned that the children in Wakefield’s study were handpicked (as well as the other issues)
In 2004, the journalist Deer revealed to the public that the children of Wakefield’s study were not merely kids that happened to be getting treatment at Royal Free. The public learned that some of the parents had been involved with a lawyer, Richard Barr. He was working on a lawsuit against MMR vaccine manufacturers.
Wakefield’s own compensation from the lawyer came out, too. The Lancet editor Richard Horton told Deer, “If we knew then what we know now, we certainly would not have published the part of the paper that related to MMR […] There were fatal conflicts of interest.” The authors of the study had to say something.
Soon enough, ten of the 13 authors of the Lancet paper formally retracted the paper’s suggestion that the MMR vaccine caused autism, but Wakefield was not one of them. Over the next few years, the public learned even more reasons they shouldn’t have trusted Wakefield’s study in the first place.
The public learned about the full extent of the business scheme and financial conflicts of interest, the lack of ethics in performing procedures on young children, and the changed medical data. Multiple times, the children’s medical tests reported the childrens’ digestive systems as normal and not having colitis, but Wakefield ignored these.
Wakefield had reported most of the kids as having an autism spectrum disorder, but every kid had some part of their medical records misreported in the published study. Some of the children had symptoms before vaccination, while some had their symptoms clear up in a few months, and others didn’t even have autism.
When other gastroenterologists (doctors who study the gastrointestinal tract) were shown the original medical records of the children, they said most of the children’s data was within the norm. None of the kids actually had the enterocolitis, an inflamed small intestine and colon, that made up half of Wakefield’s new syndrome, “autistic enterocolitis.”
Wakefield went on trial and denied everything but he was banned from practicing medicine
Despite all the evidence, Wakefield denied all the allegations against him. However, after a trial in 2010 The General Medical Council charged Wakefield with dishonesty and abuse of developmentally challenged children, among other things. The Lancet retracted the 1998 paper officially after the verdict came out and Wakefield was banned from practicing medicine.
The General Medical Council said he had “callous disregard for the distress and pain the children might suffer.” But despite Wakefield being discredited, he’d done the damage already. In the U.K. there were 56 measles cases in 1998, but 1,300 in 2008. In April 2006, the first British death from measles in 14 years occurred.
Despite being debunked from every angle, Andrew Wakefield’s study has lasting impacts today. Since the 1998 initiation of the autism vaccine scare, social media has made it easier for misinformation to circulate around a lot of people. Plenty of people still believe that vaccines cause autism among other things.
Many people don’t trust vaccines and get their kids exempt from having them. About one to three percent of US children have vaccine exemptions, but in some communities this reaches as high as 20 percent. This threatens community immunity and puts people at risk of getting preventable diseases like measles and mumps.
While vaccination succeeded in eradicating smallpox, and almost eradicated polio, it’s now suffering from its own success. People have forgotten how awful diseases like measles and whooping cough can be, particularly for young children. They may not be very deadly to adults, but are very dangerous to babies. So it’s not ideal to have babies exposed to non-vaccinated people.
The decrease in vaccination has led to outbreaks of these preventable diseases. Unfortunately, a lot of the reasoning behind not vaccinating children is based on conspiracy theories found on the internet and not actual science. The real conspiracy was the guy working against the MMR vaccine for financial gain, Andrew Wakefield.