by Ben Goldacre
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 fifty-eight] may be linked to the use of the controversial MMR vaccine’. This point is repeatedly reiterated, with a couple of other scientists disagreeing so as to create that familiar, unnerving, illusory equipoise of scientific opinion that has fuelled the MMR scare in the media for almost a decade now.
These ridiculous baby bibs are available from www.badscience.net, and they are an excellent way to start interesting conversations with other parents. (Nobody ever buys them.)
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: ‘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 was 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 (15 July), when the paper half-heartedly addressed some (and I mean some) of the criticisms of its piece, 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 was a legal report pertaining to a specific group of disabled children, submitted four years ago. Secondly, her view has been, and is, that if MMR has a causative role in symptoms which fit into 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 such a suggestion, 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 haven’t 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.
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 children’s autism. She was paid £100,000 of public money for her services. She says her objectivity was not affected by the sum, but to me this is not the issue: it seems an astonishing pair of facts for the Observer to leave out of its original article. It is still not satisfactory for this kind of information to appear only one week later in the Readers’ Editor’s column. ‘Conflict of interest’ is a situation, not a behaviour.
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.1
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 inaccessibl
e, 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.
Prevention Is Better than Cure When It Comes to Health Scares
Financial Times, 2 May 2013
Swansea in Wales is experiencing a serious measles outbreak, with 1,000 cases and one suspected death so far. The outbreak is the result of an unfounded fear that the combined measles, mumps and rubella (MMR) vaccine caused autism. This is just one among dozens of vaccine scares, and more will inevitably come if no action is taken.
Antivaccination campaigners have existed for as long as vaccination itself, using the same arguments over three centuries. If these scares were driven by evidence, we would expect them to appear everywhere at once. But vaccine panics respect local cultural boundaries, because they are cultural phenomena, driven by social and political factors.
In France, for example, there was a significant scare during the 1990s that a hepatitis B vaccine caused multiple sclerosis. And yet this was barely heard of outside France, even though the vaccine is offered universally in most developed nations. The UK’s MMR scare was most active between 1998 and 2003, creating 1,200 news articles in one year at its peak, and yet this was barely noticed outside the UK.
The US, meanwhile, had its own scare about vaccines and autism, centred on a preservative called thiomersal, which peaked half a decade after the UK MMR–autism scare. The US scare, in turn, received little coverage in mainstream European media.
Meanwhile in 2002, the World Health Organization was on target to eradicate polio from the face of the globe, when a vaccine scare arose across Kano province in northern Nigeria, with imams claiming that the vaccines were part of a plot by drug companies – and the US – to make Muslims sterile. Polio spread to neighbouring nations as well as Sudan, Yemen and Indonesia. But the scare also spread, often along religious channels, reaching Pakistan, where it contributed to the murder of seven vaccination workers last year in Karachi.
Local politics are a recurring theme in triggering these outbreaks. Suspicion around polio vaccinators in Pakistan was heightened by the US Central Intelligence Agency using the vaccination programme as a cover to find Osama bin Laden. The Kano scare emerged in the same area of Nigeria where Pfizer’s Trovan drug trial – associated by many with John le Carré’s novel The Constant Gardener – was blamed for eleven deaths just a few years earlier, and just as the case came to court in the US.
The peak of the UK MMR scare occurred in 2001, a full three years after the publication of the research – now forcibly retracted – on which it was based. It was driven by media speculation over the reluctance of Tony Blair, then prime minister, to disclose whether his eighteen-month-old son had had the vaccine.
But while the triggers may be political, scares land on fertile ground, and nothing has been done to address these background factors. In the UK, there is clear evidence to implicate irresponsible journalism. The South Wales Evening Post covers the area of the Swansea outbreak, and ran a notably aggressive anti-MMR campaign. Published academic research has shown that the MMR vaccine uptake in this one newspaper’s distribution area dropped 13 per cent, while coverage in the rest of Wales fell only 2 per cent. But many journalists remain reluctant to accept responsibility, while public health authorities are keener to promote positive messages than to confront misinformation.
Our systems in science to manage misleading content are also flawed, or even non-existent. Andrew Wakefield, author of the flawed MMR research, was only struck off the medical register after a decade’s delay. Retracting the paper took just as long. The research misconduct in his work was ultimately exposed by Brian Deer, an investigative journalist, while the institutions and academic journals involved were reluctant to accept responsibility for investigating at all. Again, little has changed here over the past decade.
It is right to deploy resources on catch-up programmes for MMR and other missed vaccines when outbreaks occur. But prevention is better than cure, and history teaches us that fresh vaccine scares will always emerge. Eradication is a distant dream, but better education, early media monitoring and improved accountability through scientific institutions may help.
Dodgy Academic PR
Guardian, 30 May 2009
Obviously we distrust the media on science: they rewrite commercial press releases from dodgy organisations as if they were health news, they lionise mavericks with poor evidence, and worse. But journalists will often say: What about those scientists with their press releases? Surely we should do something about them, running about, confusing us with their wild ideas?
You may think that a journalist should be able to do more than simply read, and then rewrite, a press release; but we must accept that these are troubled times.
So, in this imperfect world, it would be useful to know what’s in academic press releases; we are entitled, after all, to expect a very high standard of factual accuracy from academics. Sadly, a new paper in the Annals of Internal Medicine this month shows that we have been failed.
Researchers at Dartmouth Medical School in New Hampshire took one year’s worth of press releases from twenty medical research centres. This was a mixture of the most eminent universities and the most humble, as measured by their US News & World Report ranking. Those centres each put out around one press release a week. Two hundred were selected at random and analysed in detail.
Half covered research done in humans, and as an early clue to their quality, 23 per cent didn’t bother to mention the number of participants – it’s hard to imagine anything more basic – and 34 per cent failed to quantify their results. What kinds of study were covered? In medical research we talk about the ‘hierarchies of evidence’, ranked by quality and type. Systematic reviews of randomised trials are considered to be the most reliable: because they ensure that your conclusions are based on all of the information, rather than just some of it; and because randomised trials – when conducted properly – are the least vulnerable to bias, and so they are the ‘most fair tests’. After these, there are observational studies: these are much more prone to bias, and produce findings which might just reflect correlation instead of causation (‘People who choose to eat vegetables live longer’) but they are generally cheaper to do. Then there are individual case reports. And then, finally, because medical academics like to think they’re funny, right at the bottom of the hierarchy you will find something called ‘expert opinion’.
In the Dartmouth study, among the press releases covering human research, only 17 per cent promoted the studies with the strongest designs, either randomised trials or meta-analyses. Forty per cent were on the most limited studies: ones without a control group, small samples of fewer than thirty participants, studies looking at ‘surrogate primary outcomes’ (which might measure a blood-cholesterol level, for example, rather than something concrete like a heart attack), and so on.
That’s not necessarily a problem. Research is always a matter of compromise over what is practical, or affordable. It would be nice to randomise every single patient, everywhere, whenever there is any uncertainty over which is the best treatment for their condition, and perfectly follow their progress, but that would be quite a piece of work. It would be nice to randomise everyone in the country to different lifestyle choices at birth, to see which had the most significant
impact on their health, so that in seventy years’ time we would have a comprehensive story on the best way to live; but it’s hard enough to get people recruited and cooperating in a brief three-week study, let alone lifelong change; and in any case, who wants an answer in the year 2079?
So people conduct imperfect research, knowing that it is the best we can do with the resources available, knowing that the results must be interpreted with caution and caveats. This isn’t ‘bad science’, because the studies themselves are – we assume – well conducted, and faithfully described in their publications. The errors come at the level of interpretation, where people fail to acknowledge the limitations of the evidence.
That failure is a crime, but is it limited to quacks and hacks? No, and that is the key finding of this new paper. Fifty-eight per cent – more than half – of all press releases from this representative sample of academic institutions lacked the relevant cautions and caveats about the methods used and the results reported. I would like journalists to be experts in their field – and I don’t think they could be bluffed as easily by a politician or a sports personality as they are by a science press release – but make no mistake, this is a war on all fronts.
Suicide
Guardian, 28 March 2009
This week, in my crescendo-ing tirade against journalism, we shall review the evidence that journalists kill.
The suicide of Sylvia Plath’s son has filled the news. The media obsessed – understandably – over genetics, when mental illness is probably the single biggest risk factor, but the coverage has been universally thoughtful, considerate, informed and responsible. This is not always the case, as we shall see. But before we get there, one important cause of suicide seems to have been missed.