Here’s my piece from the British Medical Journal, or at least the last version I saw of it.
Medicine and the media
doctor and writer, London,
Guardian and BMJ columnist
A UK newspaper has once again linked autism with MMR and sparked a spate of media scaremongering. But the original story was wrong on every count, writes Ben Goldacre
It was inevitable that the media would re-ignite the MMR (measles, mumps, rubella) autism scare during Andrew Wakefield’s General Medical Council hearing (see News, p 000). In the past two weeks, however, one front page splash in the broadsheet Sunday newspaper the Observer (8 July) has drawn widespread attention: the newspaper effectively claimed to know the views of named academics better than those academics themselves, and to know the results of research better than the people who did it. Smelling a rat—as one might—for once, I decided to pursue every detail.
The Observer’s story made three key points: that new research had found an increase in the prevalence of autism, to one in 58; that the lead academic on this study was so concerned he suggested raising the finding with public heath officials; and that two “leading researchers” on the team believed that the rise was due to MMR. By the time the week was out, this story had been recycled in several other national newspapers, and the one in 58 figure had even been faithfully reproduced in a BMJ news article.
On every one of these three key points the Observer story was simply wrong.
The newspaper claimed that an “unpublished” study from the Autism Research Centre in Cambridge had found a prevalence for autism of one in 58. I contacted the centre: the study that the Observer reported is not finished, and not published. The data have been collected, but they have not been analysed.
Unpublished data is a recurring theme in MMR scares, and it is the antithesis of what science is about: transparency, where anyone can read the methods and results, appraise the study, decide for themselves whether they too would draw the same conclusions as the authors, and even replicate, if they wish.
The details of this study illustrate just how important this transparency is. It was specifically designed to look at how different methods of assessing prevalence affected the final figure. One of the results from the early analyses is “one in 58.” The other figures were less dramatic, and similar to current estimates. In fact the Observer now admits it knew of these figures and that these should have been included in the article. It seems it simply cherry picked the single most extreme number—from an incomplete analysis—and made it a front page splash story.
And why was that one figure so high anyway? The answer is simple. If you cast your net as widely as possible, and use screening tools, and many other methods of assessment, and combine them all, then inevitably you will find a higher prevalence than if—for example—you simply trawl through local school records and count your cases of autism from there.
This is not advanced epidemiology, impenetrable to journalists—this is basic common sense. It would not mean that there is a rise in autism over time, compared with previous prevalence estimates, but merely that you had found a way of assessing prevalence that gave a higher figure. More than that, of course, when you start doing a large scale prevalence study, you run into all kinds of interesting new methodological considerations: is my screening tool suitable for use in a mainstream school environment? How does its positive predictive value change in a different population with a different baseline rate? And so on.
These are fascinating questions, and for that reason statisticians and epidemiologists were invented. As Professor Baron-Cohen, lead author on the study, says: “This paper has been sitting around for a year and a half specifically because we’ve brought in a new expert on epidemiology and statistics, who needs to get to grips with this new dataset, and the numbers are changing. If we’d thought the figures were final in 2005, then we’d have submitted the paper then.”
The Observer, however, is unrepentant: it has the “final report.” And what is this document? I can’t get the paper to show it to me (and what kind of a claim about scientific evidence involves secret data?) but grant giving agencies expect a report every quarter, right through to the end of the grant, and it seems likely that what the Observer has is simply the last of those: “That might have been titled ‘final report’,” said Professor Baron-Cohen. “It just means the funding ended, it’s the final quarterly report to the funders. But the research is still ongoing. We are still analysing.”
But these are just nerdy methodological questions about prevalence (if you skip to the end, there is some quite good swearing). How did the Observer manage to crowbar MMR into this story? Firstly, it cranked up the anxiety. According to the Observer, Baron-Cohen “was so concerned by the one in 58 figure that last year he proposed informing public health officials in the county.”
But Professor Baron-Cohen is clear: he did no such thing and this was simply scaremongering. I put this to the Observer, which said it had an email in which Baron-Cohen did as the paper claimed. Observer staff gave me the date. I went back to the professor, who went through his emails. We believe that I too now have the email to which the Observer refers. It is one sentence long, and it is Professor Baron-Cohen asking if he can share his and the other researchers’ progress with a clinical colleague in the next door office. This dramatic smoking gun reads: “can i share this with ayla and with the committee planning services for AS [autism services] in cambridgeshire if they treat it as strictly confidential?”
Professor Baron-Cohen told me, “That’s not saying I’m concerned, or that we should notify anybody; these are just the people who run the local clinic, who I share a corridor with, who said they were interested to hear how it was going so far. They are not public health officials, and it’s not alarmist, it’s not voicing concern, it’s simply saying: ‘am I allowed to share a paper with a colleague in the next door office?’ It seems very important to me that we discuss clinical research with clinical colleagues, and I only stressed confidentiality because the paper was not yet final.”
But what about the meat? The Observer claims that “two of the academics, leaders in their field, privately believe that the surprisingly high figure [one in 58] may be linked to the use of the controversial MMR vaccine.” This point is repeatedly reiterated, with a couple of other scientists disagreeing to create that familiar, unnverving, illusory equipoise of scientific opinion that has fueled the MMR scare in the media for almost a decade now.
But in fact, the two “leading experts” concerned about MMR were not professors, or fellows, or lecturers: they were research associates. I rang both, and both were very clear that they wouldn’t really describe themselves as leading experts. One is Fiona Scott, a psychologist and very competent researcher at Cambridge. She said to me, very clearly: “I absolutely do not think that the rise in autism is related to MMR.” And: “My own daughter is getting vaccinated with the MMR jab on July 17.”
She also says, astonishingly, that the Observer never even spoke to her, before incorrectly reporting that she has a privately held view that MMR might be partly to blame for autism. I say “reporting,” but in some ways, it’s more like an accusation. Dr Scott horrified. She simply does not believe that MMR has caused a rise in autism.
And yet the Observer’s “readers’ editor” column one whole week later (July 15), when the paper half-heartedly addressed some (and I mean some) of the criticisms of its piece, still reinforced the idea that she holds this view. It’s like a repeating nightmare. They say they know she does, because of a report she wrote, from 2003.
I trudged back to Scott. Firstly, she tells me, this is a legal report pertaining to a specific group of disabled children, submitted 4 years ago. Secondly, her view has been, and is, that if MMR has a causative role in symptoms which fit in to a diagnostic category of autism (which is after all very broad, and can easily subsume a lot of children with learning difficulties and organic injury) then the numbers are so small that they are not in excess of what people already routinely expect in side effects from vaccines: again, she does not think MMR causes a rise in autism prevalence.
But lastly, even if she ever had, in 2003, in one report, made a suggestion: then one is entitled to change one’s view in over four years of working and researching, and in the face of new evidence, and experience, and indeed that would be admirable. If you’re saying someone holds a view, right now, and you havent even asked them, and they loudly say they don’t, then it doesn’t really matter what you think you’ve read in a court report from half a decade ago: you’re on very shaky territory.
But the paper still has not contacted Fiona Scott: apparently the Observer knows the opinions of this woman, better than she knows her own mind, despite her public protestations. In fact the only voice Dr Scott could find (while the Observer continued to describe her as a “dissenter”) was in the online comments underneath the readers’ editor piece, where she posted an impassioned and rather desperate message. I shall reproduce it, almost in full, because she deserves the space the print Observer has repeatedly denied her:
“I feel, given that I was one of the two ‘leaders in the field’ (flattering, but rather an exaggeration) reported as linking MMR to the rise in autism, that I should quite clearly and firmly point out that I was never contacted by and had no communication whatsoever with the reporter who wrote the infamous Observer article. It is somewhat amazing that my ‘private beliefs’ can be presented without actually asking me what they are. What appeared in the article was a flagrant misrepresentation of my opinions—unsurprising given that they were published without my being spoken to.
“It is outrageous that the article states that I link rising prevalence figures to use of the MMR. I have never held this opinion. I do not think the MMR jab ‘might be partly to blame.’ As for it being a factor in ‘a small number of children,’ had the journalist checked with me it would have been clear that my view is in line with Vivienne Parry of the JCVI [Joint Committee on Vaccination and Immunisation]. The ‘small number’ was misrepresented by being linked inappropriately and inaccurately with ‘rise in prevalence,’ leading readers to arguably infer that it is in fact NOT a small number!
“I wholeheartedly agree with Prof Baron-Cohen, and many of the posts and responses received to date, that the article was irresponsible and misleading. Furthermore I reiterate that it was inappropriate in including views and comments attributed to me and presented as if I had input into the article when I had not (and still have not) ever been contacted by the journalist in question. I am taking the matter under advisement.”
Then the story takes one final, bizarre turn. The last “leading expert” is Carol Stott. She does believe that MMR causes autism (at last!). However, she is no longer even a “research associate” at the Autism Research Centre. Carol Stott works in Dr Andrew Wakefield’s private autism clinic in America, and she was also an adviser to the legal team that failed in seeking compensation for parents who believed that MMR caused their child’s autism. She was paid £100
And were her views private, and unknown? No. Stott is so committed to the cause against MMR that when the investigative journalist Brian Deer exposed the legal payouts in 2004, although she had no prior contact with him, she spontaneously fired off a long series of sweary emails titled “game on”: “Try me, shit head . . . Beleive [sic] me, you will lose . . . so go fuck yourself. Got it yet shit head. Try me . . . Twathead . . . waiting . . . oh yes . . . Stick that where it feels good. shit head . . . well, ur a bit slow on the uptake . . . Give it time I s’pose. twat.” And so on.
I rang her with some trepidation, but when I got through I instantly and genuinely warmed to her. She regrets that many people have fallen into entrenched positions over MMR on both sides, including herself. But she’s not a leading expert (as she herself agrees); she’s hardly a senior Cambridge academic suddenly expressing a fresh and private concern (her views are perfectly public); and even she is very clear that this new research tells us nothing whatsoever about MMR causing autism.
Outside of the details, there is a wider story here. The media have diligently avoided writing anything on the negative findings in autism research. Instead they have chosen repeatedly to concoct huge stories from the “concerns” of “experts” and research that is unpublished and inaccessible, locked away in a box, where they can say what they like about it. They can even refuse—as the Observer has with my approaches—to actually show their evidence; and that is the absolute polar opposite of what science and evidence based opinions are about.
On this occasion I was able to go to the source, and debunk the Observer’s claims: often, though, these “new unpublished research” stories are concocted with the complicity of researchers from the anti-vaccine movement, and there is no such luck.
Whatever one might think about Andrew Wakefield, he was just one man: the MMR autism scare has been driven for a decade now by a media that over-emphasises marginal views, misrepresenting and cherry picking research data to suit its cause. As the Observer scandal makes clear, there is no sign that this will stop.
[The most important take home message here is that I got some very impressive swearing into one of the world’s most prestigious medical journals, and I have therefore won the internet. The gauntlet is down and I’d like to see any one of you try and beat “fuck” and “shithead” over the next 12 months, prize as ever for the best contender.]