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Authors: Ben Goldacre

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What can this kind of paper tell you about a link between something as common as MMR and something as common as autism? Basically nothing, either way. It was a collection of twelve clinical anecdotes, a type of paper called a case series, and a case series, by design, wouldn’t demonstrate such a relationship between an exposure and an outcome with any force. It did not take some children who were given MMR and some children who weren’t and then compare the rates of autism between the two groups (this would have been a cohort study). It did not take some children with autism and some children without autism and then compare the rates of vaccination between the two groups (this would have been a case-control study).

Could anything else explain the apparent connection among MMR, bowel problems, and autism in these eight children? First, although they sound like rare things to come together, this was a specialist center in a teaching hospital, and the children had been referred there only because they had bowel problems and behavioral problems (the circumstances of these referrals are currently being examined by the GMC, as we shall see).

Out of an entire nation of millions of inhabitants, if some children with a combination of fairly common things (vaccination, autism, bowel problems) all come together in one place that is
already acting as a beacon for such a combination
, as this clinic was, we should not naturally be impressed. You will remember from the discussion of the unfortunate Dutch nurse Lucia de Berk (and indeed from reading news reports about lottery winners) that unlikely combinations of events will always happen, somewhere, to some people, entirely by chance. Drawing a target around them after the fact tells us nothing at all.

All stories about treatment and risk will start with modest clinical hunches like these anecdotes: but hunches, with nothing to back them up, are not generally newsworthy. At the publication of this paper, a press conference was held at the Royal Free Hospital, and to the visible surprise of many other clinicians and academics present, Andrew Wakefield announced that he thought it would be prudent to use single vaccines instead of the MMR triple vaccine. Nobody should have been surprised; a video news release had already been issued by the hospital in which Wakefield made the same call.

We all are entitled to our clinical hunches as individuals, but there was nothing in either this study of twelve children or any other published research to suggest that giving single vaccines would be safer. As it happens, there are good grounds for believing that giving vaccines separately might be more harmful: they need six visits to the GP, and six unpleasant jabs, making four more appointments to miss. Maybe you’re ill, maybe you’re on holiday, maybe you move house, maybe you lose track of which ones you’ve had, maybe you can’t see the point of rubella for boys, or mumps for girls, or maybe you’re a working single mum with two kids and no time.

Also, of course, the children spend much more time vulnerable to infection, especially if you wait a year between jabs, as Wakefield has recommended, out of the blue. Ironically, although most of the causes of autism remain unclear, one of the few well-characterized single causes is rubella infection itself while the child is in the womb.

The Story Behind the Paper

 

Since then this paper has been entirely discredited. I don’t want that aspect of the story—rather than the research evidence—to be the reason why you come to your own conclusion about the risks of MMR and autism. There are things that came out in 2004, however, that cannot fairly be ignored; they include allegations of multiple conflicts of interest, undeclared sources of bias in the recruitment of subjects for the paper, undisclosed negative findings, and problems with the ethical clearance for the tests. These were largely uncovered by a tenacious investigative journalist from
The Sunday Times
called Brian Deer, and they formed part of a case brought against Andrew Wakefield by the GMC, the medical regulator in the U.K.

While in the paper it is stated that the children investigated were sequential referrals to a clinic, in fact, Wakefield was already being paid seventy-five thousand dollars of legal aid money by a firm of solicitors to investigate children whose parents were preparing a case against MMR, and many of these referrals had come to him specifically as someone who could show a link between MMR and autism, whether formally or informally, and was working on a legal case. This is the beacon problem once more, and under these circumstances, the fact that
only
eight of the twelve children’s parents or physicians believed the problems were caused by MMR would be unimpressive, if anything.

Of the twelve children in the paper, eleven sued drug companies, and ten of them already had legal aid to sue over MMR before the 1998 paper was published. Wakefield himself eventually received almost $700,000 plus expenses from the legal aid fund for his role in the case against MMR.

The GMC has found that various intrusive clinical investigations, such as lumbar punctures and colonoscopies, were carried out on the children, not to determine their own treatment but rather for research purposes; furthermore, these tests were conducted without ethics committee approval.

Lumbar puncture involves putting a needle into the center of the spine to tap off some spinal fluid, and colonoscopy involves putting a flexible camera and light through the anus, up the rectum, and into the bowel on a long tube. Neither is without risk, and indeed one of the children being investigated as part of an extension of the MMR research project was seriously harmed during colonoscopy and was rushed to intensive care at Great Ormond Street Hospital after his bowel had been punctured in twelve places. He suffered multiple organ failure, including kidney and liver problems, and neurological injuries, and received $740,000 in compensation. These things happen, nobody is to blame, and I am merely illustrating the reasons to be cautious about doing investigations.

Outside of this, there are also other issues, uncovered by Brian Deer. In 1997 a young Ph.D. student called Nick Chadwick was starting his research career in Andrew Wakefield’s lab, using PCR technology (used as part of DNA fingerprinting) to look for traces of measles strain genetic material in the bowels of these twelve children, because this was a central feature of Wakefield’s theory. In 2004 Chadwick gave an interview to Channel 4’s
Dispatches
, and in 2007 he gave evidence at a U.S. case on vaccines, stating that there was no measles RNA to be found in these samples. But this important finding, which conflicted with his charismatic supervisor’s theory, was not published.

I could go on.

Nobody knew about any of this in 1998. In any case, it’s not relevant, because the greatest tragedy of the media’s MMR hoax is that it was brought to an end by these issues’ being made public, when it should have been terminated by a cautious and balanced appraisal of the evidence at the time. Now, you will see news reporters, including the BBC, saying stupid things like “The research has since been debunked.” Wrong. The research never justified the media’s ludicrous overinterpretation. If they had paid attention, the scare would never have even started.

The Press Coverage Begins

 

What’s most striking about the MMR scare—and this is often forgotten—is that it didn’t actually begin in 1998.
The Guardian
and
The Independent
covered the press conference on their front pages, but
The Sun
ignored it entirely, and the
Daily Mail
, international journal of health scares, buried its piece on it in the middle of the paper. Coverage of the story was generally written by specialist health and science journalists, and they were often fairly capable of balancing the risks and evidence. The story was pretty soft.

In 2001 the scare began to gain momentum. Wakefield published a review paper in an obscure journal, questioning the safety of the immunization program, although with no new evidence. In March he published new laboratory work with Japanese researchers (“the Kawashima paper”), using PCR data to show measles virus in the white blood cells of children with bowel problems and autism. This was essentially the opposite of the findings from Nick Chadwick in Wakefield’s own lab. Chadwick’s work remained un-mentioned (and there has since been a paper published showing how the Kawashima paper produced a false positive, although the media completely ignored this development, and Wakefield seems to have withdrawn his support for the study).

Things began to deteriorate. The antivaccination campaigners began to roll their formidable and coordinated publicity machine into action against a rather chaotic shambles of independent doctors from various different uncoordinated agencies. Emotive anecdotes from distressed parents were pitted against old duffers in corduroy, with no media training, talking about scientific data. If you ever wanted to see evidence against the existence of a sinister medical conspiracy, you need look no further than the shower of avoidant doctors and academics and their piecemeal engagement with the media during this time. The Royal College of General Practitioners not only failed to speak clearly on the evidence. They also managed—heroically—to dig up some anti-MMR GPs to offer to journalists when they rang in asking for quotes.

The story, perhaps bound up in the wider desire of some newspapers and personalities simply to attack the government and the health service, began to gain momentum. A stance on MMR became part of many newspapers’ editorial policies, and that stance was often bound up with rumors about senior managerial figures with family members who had been affected by autism. It was the perfect story, with a single charismatic maverick fighting against the system, a Galileo-like figure; there were elements of risk, of awful personal tragedy, and, of course, the question of blame. Whose fault was autism? Because nestling in the background was this extraordinary new diagnosis, a disease that struck down young boys and seemed to have come out of the blue, without explanation.

Autism

 

We still don’t know what causes autism. A history of psychiatric problems in the family, early birth, problems at birth, and breech presentation all are risk factors, but pretty modest ones, which means they’re interesting from a research perspective, but none of them explains the condition in a particular person. This is often the case with risk factors. Boys are affected more than girls, and the incidence of autism continues to rise, in part because of improved diagnosis—people who were previously given labels like “mentally subnormal” or “schizophrenia” were now receiving a diagnosis of “autism”—but also possibly because of other factors that are still not understood. Into this vacuum of uncertainty, the MMR story appeared.

There was also something strangely attractive about autism as an idea to journalists and other commentators. Among other things, it’s a disorder of language, which might touch a particular chord with writers; but it’s also philosophically enjoyable to think about, because the flaws in social reasoning that are exhibited by people with autism give us an excuse to talk and think about our social norms and conventions. Books about autism and the autistic outlook on the world have become bestsellers. Here are some wise words for us all from Luke Jackson, a thirteen-year-old with Asperger’s syndrome, who has written a book of advice for teenagers with the condition (
Freaks, Geeks and Asperger Syndrome
). This is from the section on dating:

If the person asks something like “Does my bum look fat?” or even “I am not sure I like this dress” then that is called “fishing for compliments.” These are very hard things to understand, but I am told that instead of being completely honest and saying that yes their bum does look fat, it is politer to answer with something like “Don’t be daft, you look great.” You are not lying, simply evading an awkward question and complimenting them at the same time. Be economical with the truth!

 

Asperger’s syndrome, or autistic spectrum disorder, is being applied to an increasingly large number of people, and children or adults who might previously have been considered “quirky” now frequently have their personalities medicalized with suggestions that they have “traits of Asperger’s.” Its growth as a pseudodiagnostic category has taken on similar proportions to “mild dyslexia”—you will have your own views on whether this process is helpful—and its widespread use has allowed us all to feel that we can participate in the wonder and mystery of autism, each with a personal connection to the MMR scare.

Except of course, in most cases, genuine autism is a pervasive developmental disorder, and most people with autism don’t write quirky books about their odd take on the world that reveal so much to us about our conventions and social mores in a charmingly plain and unself-conscious narrative style. Similarly, most people with autism do not have the telegenic single skills that the media have so enjoyed talking up in their crass documentaries, like being
really amazing
at mental arithmetic or playing the piano to concert standard while staring confusedly into the middle distance.

That these are the sorts of things most people think of when the word “autism” pops into their heads is testament to the mythologization and paradoxical “popularity” of the diagnosis. Mike Fitzpatrick, a physician with a son who has autism, says that there are two questions on the subject that will make him want to slap you. One is: “Do you think it was caused by MMR?” The other is: “Does he have any special skills?”

Leo Blair

 

But the biggest public health disaster of all was a sweet little baby called Leo. In December 2001 Prime Minister Tony Blair and his wife, Cherie, were asked if their infant son had been given the MMR vaccine and refused to answer. Most other politicians have been happy to clarify whether their children have had the vaccine, but you can imagine how people might believe the Blairs were the kind of family not to have their children immunized, especially with everyone talking about “herd immunity” and the worry that they might be immunizing their child, and placing it at risk, in order that the rest of the population should be safer.

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