2008 - Bad Science

by Ben Goldacre

  Of the twelve children in the paper, eleven sued drug companies (the one that didn’t was American), and ten of them already had legal aid to sue over MMR before the 1998 paper was published. Wakefield himself eventually received £435,643 plus expenses from the legal aid fund for his role in the case against MMR.

  Various intrusive clinical investigations—such as lumbar punctures and colonoscopies—were carried out on the children, and these required ethics committee clearance. The Ethics Committee had been assured that they were all clinically indicated, which is to say, in the interests of the children’s own clinical care: the GMC is now examining whether they were contrary to the clinical interests of the children, and performed simply for research.

  Lumbar puncture involves putting a needle into the centre 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 lube. 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 was punctured in twelve places. He suffered multiple organ failure, including kidney and liver problems, and neurological injuries, and received £482,300 in compensation. These things happen, nobody is to blame, and I am merely illustrating the reasons to be cautious about doing investigations.

  Meanwhile, in 1997 a young PhD student called Nick Chad-wick 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 US 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 over-interpretation. 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 their 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 immunisation programme, 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 labs. Chadwick’s work remained unmentioned (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 anti-vaccination 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, it also managed—heroically—to dig up some anti-MMR GPs to offer to journalists when they rang in asking for quotes.

  The story began to gain momentum, perhaps bound up in the wider desire of some newspapers and personalities simply to attack the government and the health service. A stance on MMR became part of many newspapers’ editorial policies, and that stance was often bound up with rumours 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 are all 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 which 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 which 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 personality medicalised with suggestions that they have ‘traits of Asperger’s’. Its growth as a pseudo-diagnostic 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 which reveal so much to us about our conventions and social mores in a charmingly plain and unselfconscious narrative style. Similarly, most people with autism do not hav
e the telegenic single skills which 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 sort of things most people think of when the word ‘autism’ pops into their head is testament to the mythologisation and paradoxical ‘popularity’ of the diagnosis. Mike Fitzpatrick, a GP with a son who has autism, says that there are two questions on the subject which 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 the Blairs 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 immunised, especially with everyone talking about ‘herd immunity’, and the worry that they might be immunising their child, and placing it at risk, in order that the rest of the population should be safer.

  Concerns were particularly raised by the ubiquity of Cherie Blair’s closest friend and aide. Carole Caplin was a New Age guru, a ‘life coach’ and a ‘people person’, although her boyfriend, Peter Foster, was a convicted fraudster. Foster helped arrange the Blairs’ property deals, and he also says that they took Leo to a New Age healer, Jack Temple, who offered crystal dowsing, homoeopathy, herbalism and neolithic-circle healing in his back garden.

  I’m not sure how much credence to give to Foster’s claims myself, but the impact on the MMR scare is that they were widely reported at the time. We were told that the Prime Minister of the United Kingdom agreed to Temple waving a crystal pendulum over his son to protect him (and therefore his classmates, of course) from measles, mumps and rubella; and that Tony let Cherie give Temple some of his own hair and nail clippings, which Temple preserved in jars of alcohol. He said he only needed to swing his pendulum over the jar to know if their owner was healthy or ill.

  Some things are certainly true. Using this crystal dowsing pendulum, Temple did claim that he could harness energy from heavenly bodies. He sold remedies with names like ‘Volcanic Memory’, ‘Rancid Butter’, ‘Monkey Sticks’, ‘Banana Stem’ and, my own personal favourite, ‘Sphincter’. He was also a very well-connected man. Jerry Hall endorsed him. The Duchess of York wrote the introduction to his book The Healer: The Extraordinary Healing Methods of Jack Temple (it’s a hoot). He told the Daily Mail that babies who are breastfed from the moment of birth acquire natural immunity against all diseases, and he even sold a homoeopathic alternative to the MMR jab.

  ‘I tell all my patients who are pregnant that when the baby is born they must put it on the breast until there is no longer a pulse in the umbilical cord. It usually takes about 30 minutes. By doing this they transfer the mother’s immune system to the baby, who will then have a fully-functioning immune system and will not need vaccines.’…Mr Temple refused to confirm yesterday whether he advised Mrs Blair not to have her baby Leo vaccinated. But he said: ‘If women follow my advice their children will not need the MMR injection, end of story.’*

  Daily Mail, 26 December 2001

  ≡ Here is Jack on cramp: ‘For years many people have suffered with cramp. By dowsing, I discovered that this is due to the fact that the body is not absorbing the element ‘scandium’ which is linked to and controls the absorption of magnesium phosphate.’ And on general health complaints: ‘Based on my expertise in dowsing, I noted that many of my patients were suffering from severe deficiencies of carbon in their systems. The ease in which people these days suffer hairline fractures and broken bones is glaringly apparent to the eyes that are trained to see.’

  Cherie Blair was also a regular visitor to Carole’s mum, Sylvia Caplin, a spiritual guru. ‘There was a particularly active period in the summer when Sylvia was channelling for Cherie over two or three times a week, with almost daily contact between them,’ the Mail reported. ‘There were times when Cherie’s faxes ran to 10 pages.’ Sylvia, along with many if not most alternative therapists, was viciously anti-MMR (over half of all the homeopaths approached in one survey grandly advised against the vaccine). The Daily Telegraph reported:

  We move on to what is potentially a very political subject: the MMR vaccine. The Blairs publicly endorsed it, then caused a minor furore by refusing to say whether their baby, Leo, had been inoculated. Sylvia [Caplin] doesn’t hesitate: ‘I’m against it,’ she says. ‘I’m appalled at so much being given to little children. The thing about these drugs is the toxic substance they put the vaccines in—for a tiny child, the MMR is a ridiculous thing to do. ‘It has definitely caused autism. All the denials that come from the old school of medicine are open to question because logic and common sense must tell you that there’s some toxic substance in it. Do you not think that’s going to have an effect on a tiny child? Would you allow it? No—too much, too soon, in the wrong formula.’

  It was also reported—doubtless as part of a cheap smear—that Cherie Blair and Carole Caplin encouraged the Prime Minister to have Sylvia ‘douse and consult The Light, believed by Sylvia to be a higher being or God, by use of her pendulum’ to decide if it was safe to go to war in Iraq. And while we’re on the subject, in December 2001 The Times described the Blairs’ holiday in Temazcal, Mexico, where they rubbed fruits and mud over each other’s bodies inside a large pyramid on the beach, then screamed while going through a New Age rebirthing ritual. Then they made a wish for world peace.

  I’m not saying I buy all of this. I’m just saying, this is what people were thinking about when the Blairs refused to publicly clarify the issue of whether they had given their child the MMR vaccine as all hell broke loose around it. This is not a hunch. Thirty-two per cent of all the stories written that year about MMR mentioned whether Leo Blair had had the vaccine or not (even Andrew Wakefield was only mentioned in 25 per cent), and it was one of the most well-recalled facts about the story in population surveys. The public, quite understandably, were taking Leo Blair’s treatment as a yardstick of the Prime Minister’s confidence in the vaccine, and few could understand why it should be a secret, if it wasn’t an issue.

  The Blairs, meanwhile, cited their child’s right to privacy, which they felt was more important than an emerging public health crisis. It’s striking that Cherie Blair has now decided, in marketing her lucrative autobiography, to waive that principle which was so vital at the time, and has written at length in her heavily promoted book not just about the precise bonk that conceived Leo, but also about whether he had the jab (she says yes, but she seems to obfuscate on whether it was single vaccines, and indeed on the question of when he had it: frankly, I give up on these people).

  For all that it may seem trite and voyeuristic to you, this event was central to the coverage of MMR. 2002 was the year of Leo Blair, the year of Wakefield’s departure from the Royal Free, and it was the peak of the media coverage, by a very long margin.

  What was in these stories?

  The MMR scare has created a small cottage industry of media analysis, so there is a fair amount known about the coverage. In 2003 the Economic and Social Research Council (ESRC) published a paper on the media’s role in the public understanding of science, which sampled all the major science media stories from January to September 2002, the peak of the scare. Ten per cent of all science stories were about MMR, and MMR was also by far the most likely to generate letters to the press (so people were clearly engaging with the issue); by far the most likely science topic to be written about in opinion or editorial pieces; and it generated the longest stories. MMR was the biggest, most heavily covered science story for years.

  Pieces on GM food, or cloning, stood a good chance of being written by specialist science reporters, but for stories on MMR these reporters were largely sidelined, a
nd 80 per cent of the coverage of the biggest science story of the year was by general-ist reporters. Suddenly we were getting comment and advice on complex matters of immunology and epidemiology from people who would more usually have been telling us about a funny thing that happened with the au pair on the way to a dinner party. Nigella Lawson, Libby Purves, Suzanne Moore, Lynda Lee-Potter and Carol Vorderman, to name only a few, all wrote about their ill-informed concerns on MMR, blowing hard on their toy trumpets. The anti-MMR lobby, meanwhile, developed a reputation for targeting generalist journalists wherever possible, feeding them stories, and actively avoiding health or science correspondents.

  This is a pattern which has been seen before. If there is one thing which has adversely affected communication between scientists, journalists and the public, it is the fact that science journalists simply do not cover major science news stories. From drinking with science journalists, I know that much of the time, nobody even runs these major stories by them for a quick check.

  Again, I’m not speaking in generalities here. During the crucial two days after the GM ‘Frankenstein foods’ story broke in February 1999, not a single one of the news articles, opinion pieces or editorials on the subject was written by a science journalist. A science correspondent would have told his or her editor that when someone presents their scientific findings about GM potatoes causing cancer in rats, as Arpad Pusztai did, on ITV’s World in Action rather than in an academic journal, then there’s something fishy going on. Pusztai’s experiment was finally published a year later—after a long period when nobody could comment on it, because nobody knew what he’d actually done—and when all was revealed in a proper publication, his experimental results did not contain information to justify the media’s scare.

  This sidelining of specialist correspondents when science becomes front-page news, and the fact that they are not even used as a resource during these periods, has predictable consequences. Journalists are used to listening with a critical ear to briefings from press officers, politicians, PR executives, salespeople, lobbyists, celebrities and gossip-mongers, and they generally display a healthy natural scepticism: but in the case of science, they don’t have the skills to critically appraise a piece of scientific evidence on its merits. At best the evidence of these ‘experts’ will only be examined in terms of who they are as people, or perhaps who they have worked for. Journalists—and many campaigners—think that this is what it means to critically appraise a scientific argument, and seem rather proud of themselves when they do it.