The real lessons of the MMR debacle
It was a widespread mood of anxiety and hostility to reason that allowed an insubstantial figure like Andrew Wakefield to have such an impact.
‘I trusted Andy.’
That was how John Walker-Smith, the former senior paediatric gastroenterologist at the Royal Free Hospital in London, explained to the General Medical Council that he did not know which case was which in the list of children included in the paper he published in the Lancet in 1998 together with the former gastroenterology researcher Andrew Wakefield, suggesting a link between the measles, mumps and rubella vaccine (MMR) and autism.
Indeed, Walker-Smith trusted Andy so much that he did not even bother to read the final draft that Wakefield, the lead author, submitted. Walker-Smith has paid a high price for his misplaced trust: last May he was struck off the medical register with Wakefield after the GMC upheld numerous charges in relation to the production and presentation of the Lancet paper.
In a series of articles in the British Medical Journal, based largely on documents revealed in the course of the protracted GMC inquiry, investigative journalist Brian Deer presents the basis for the conclusion by the journal’s editor Fiona Godlee that ‘the MMR scare was based not on bad science but on deliberate fraud’. These articles also make clear that, though Wakefield bears the central responsibility, others must also share the blame for perpetrating this fraud and the fact that it has taken nearly 13 years for its full extent to be exposed. Deer quotes the recollection of Brent Taylor, the Royal Free community paediatrician who led the scientific challenge to Wakefield’s claims, that there was an ‘extraordinary atmosphere’ at the hospital as members of Wakefield’s team speculated about how their pioneering work ‘would win the Nobel prize’. Perhaps Wakefield’s colleagues, such as Walker-Smith, believed in Andy because they hoped that they, too, might bask in the reflected glory he promised to achieve. Yet, though Walker-Smith suffered a humiliating fall at the end of a distinguished career, others have escaped censure.
Deer’s articles reveal systematic manipulation of data in the Lancet paper, details of the spin-off commercial enterprises established by Wakefield and his collaborators, and how senior figures at the Lancet and the Royal Free tried to limit the damage (to their own reputations) caused by Deer’s earlier exposure of Wakefield’s improprieties – thus delaying the denouement of this story for several years. Let’s take these in turn.
Deer’s BMJ revelations
Deer’s forensic study of the case histories of the 12 children included in the Lancet study leads to the conclusion that ‘in no single case could the medical records be fully reconciled with the descriptions, diagnoses, or histories published in the journal’. The accompanying editorial asks, ‘Is it possible that he was wrong, but not dishonest: that he was so incompetent that he was unable to fairly describe the project, or to report even one of the 12 children’s cases accurately?’ The inescapable answer is ‘No. A great deal of thought and effort must have gone into drafting the paper to achieve the results he wanted; the discrepancies all led in one direction: misreporting was gross.’
Deer’s second article investigates ‘how the vaccine crisis was meant to make money’. As Wakefield’s research continued in the late 1990s, he set up a number of companies aiming to exploit the market potential for ‘diagnostics, immunotherapeutics and vaccines’ arising from his claims of a link between the measles virus and autism. Key collaborators were Roy Pounder, the head of adult gastroenterology at the Royal Free, and the Dublin pathologist John O’Leary. Other participants in these enterprises included the father of one of the children in the Lancet study, senior figures in the Royal Free medical school, and an unnamed ‘venture capitalist’. Deer quotes one prospectus seeking to attract investors with a forecast that income ‘could be about £3.3million rising to about £28million as diagnostic testing in support of therapeutic regimes comes on stream’.
For Deer, Wakefield’s commercial activities confirm that the motivation for the MMR fraud was greed. I am not convinced. Like all scientific researchers working in the public sector in recent years, Wakefield was under pressure to seek external funding. No doubt his grandiose schemes impressed his Royal Free paymasters, then struggling (unsuccessfully) to maintain their independence in face of the impending University College takeover. But the claims and projections offered by Wakefield’s companies suggest a drift into the realm of fantasy: if Wakefield was a bad scientist he was an even worse entrepreneur. If Wakefield, Pounder and O’Leary had presented their business plans on BBC TV’s Dragons’ Den, there can be little doubt that the dragons would have unanimously responded ‘I’m out’.
Wakefield’s commercial pipe dreams ended abruptly in 2001 when the promised scientific breakthroughs failed to appear and new management at the Royal Free called his bluff, demanding that he produce some evidence for his MMR-autism hypothesis or quit. He quit. Wakefield’s only financial success was in attracting the substantial legal aid funding directed to him through Richard Barr, the solicitor who took on the anti-MMR cases.
Deer’s third article – ‘The Lancet’s two days to bury bad news’ – focuses on events in February 2004 when Deer presented the results of his investigation into Wakefield’s work to Richard Horton, the editor of the Lancet, prior to publication in The Sunday Times. Deer’s account indicates that Horton collaborated with Humphrey Hodgson, then Royal Free vice-dean, Walker-Smith, co-author Simon Murch – and Wakefield himself – in ‘a scramble to discredit my claims’. Horton attempted to ‘spoil’ Deer’s Sunday Times story by prematurely publishing the Lancet’s response. After an informal review of Deer’s allegations conducted by the very people under suspicion, the Lancet published their responses in what Deer describes as a ‘5,000-word avalanche of denials, in statements, unretracted to this day’.
In his editorial response, Horton insisted that allegations of research misconduct had been ‘answered by the clarifications provided by the senior authors’ of the paper. Though conceding that Wakefield should have disclosed his legal aid funding, Horton was satisfied that there had been no ‘intention to conceal information or deceive editors, reviewers or readers about the ethical justification for this work and the nature of patient referral’. The rigorous investigation of these same charges by the GMC culminated – six years later – in the vindication of Deer and the disgrace of Wakefield and his collaborators.
Brian contra mundum
It is unfortunate that Deer has allowed himself to be dragged into the disputatious mire into which this sorry saga has festered for many years. He was, for example, ill-advised in getting drawn into a slanging match with parent campaigners in the course of the GMC hearings. He has also made ill-judged criticisms of others who have been involved in challenging the campaign against MMR – including US paediatrician Paul Offit, Guardian columnist Ben Goldacre, and, heaven forbid, myself.
Curiously, I am upbraided for being one of those doctors who ‘default to defending other doctors’ because I ‘denounced the GMC’s inquiries as a “witch-hunt”’. The point I made, in an article on spiked written long before the GMC proceedings began, was that there was a danger that the long-delayed prosecution of Dr Wakefield would ‘turn into a witch-hunt’. My concern was that this ‘would play into the hands of Dr Wakefield in his self-indulgent posture of victimhood and encourage his supporters to move even further down the road towards canonising him as a martyr’. I argued that ‘it would be better for the medical establishment to learn some lessons from the MMR fiasco and allow Dr Wakefield to sink into obscurity’. In that same article, I criticised Wakefield, ‘the medical establishment… for its failure to respond effectively to the anti-MMR campaign’, ‘the scientists and doctors who remained silent’, and the ‘failures of leadership in the medical profession over MMR’. Just another doctor defaulting to the defence of doctors? Perhaps it irks Deer that my first article critical of Dr Wakefield was published in 1998, five years before he took up the issue!
We must, however, allow Deer some slack in all this. He has been much abused by the pro-Wakefield lobby, and it is unsurprising that he feels more than a little beleaguered. He has done a marvellously tenacious job in digging out the damning detail of the case when other journalists were looking the other way. The medical, scientific and wider community have now a full account from which to draw their own conclusions.
The power of myth in an anxious world
‘I shall stand by this man forever.’ One mother’s response to Deer’s BMJ revelations posted on the website of the anti-vaccination campaign JABS reflects the views of Wakefield loyalists (especially in the US), who continue, despite all the evidence, to ‘trust Andy’.
The Wakefield myth, like a fairytale, has an extraordinary potency. The story goes that once upon a time a physician with a particular interest in the digestive problems of children with autism set up a clinic in north London. Because he was the only doctor who would listen to the parents’ accounts, families flocked from far and near to see him. They believed that his cutting-edge programme of investigation and treatment yielded dramatic improvements in the children’s health and even in their autistic condition. As a result of his pioneering work with these families, the good doctor lent his support to their quest for compensation. When his work raised questions over the possibility of a link between MMR and autism he was persecuted by the medical establishment in conspiracy with Big Pharma and was obliged to go into exile, first in Florida and then in Texas, where he set up private clinics to treat autistic children. Unfortunately, the story ends in tears: Wakefield was struck off, kicked out of his Texas clinic, and nobody lived happily ever after.
Only the ending of the story bears much relation to reality. In the mid-1990s Wakefield was a floundering academic surgeon with no qualifications or experience in relation to the care of children, and no clinical responsibilities, even for adults. His laboratory work claiming a link between measles virus and inflammatory bowel disease had become widely discredited and his persistent refusal to acknowledge negative results meant that he was increasingly distrusted by fellow researchers. Walker-Smith recalls that when, in 1994, he proposed moving his team from Barts to the Royal Free, gut immunologist Tom MacDonald refused to join him because ‘he did not like the connection with Andy Wakefield with whom he profoundly disagreed’. MacDonald later published a scathing critique of Wakefield’s work on ‘autistic enterocolitis’, indicating data manipulation before the Deer revelations.
Wakefield freely admits that he knew nothing about autism before meeting his first case in May 1995. Wakefield responded positively when parents contacted him (through JABS or Barr) because autistic children appeared to offer a lifeline for his forlorn attempt to link the measles virus and inflammatory bowel disease – and, through legal aid, an additional source of funding. If Wakefield has continued his association with the world of autism since his departure from the Royal Free, it is because he has nowhere else to go.
The faith that has been reposed by so many people in such a fairytale and in such a sad and insubstantial figure reflects not only the power of wishful thinking among colleagues like Walker-Smith and among parents who are vulnerable to specious hope. It also reflects the existence of a widespread mood of anxiety and suspicion, and a loss of confidence in our ability to rely on our powers of reason. Only in that wider climate could the peer reviewers and the editors, the doctors and scientists and journalists, have allowed Wakefield to make such an impact.
Meanwhile, in 2008, for the first time in 14 years, measles was declared an endemic disease and outbreaks of mumps have become commonplace. Let’s leave the last word to the editors of the BMJ:
‘But perhaps as important as the scare’s effect on infectious disease is the energy, emotion and money that have been diverted away from efforts to understand the real causes of autism and how to help children and families who live with it.’
‘How the case against the MMR vaccine was fixed’, by Brian Deer, British Medical Journal, 2011; 342: c5347
‘ How the vaccine crisis was meant to make money’, by Brian Deer, British Medical Journal, 2011; 342: c5258
‘The Lancet’s two days to bury bad news;, by Brian Deer, British Medical Journal, 2011; 342: c7001
‘ The fraud behind the MMR scare. Editor’s Choice’, Fina Godlee, British Medical Journal, 2011; 342:d22
‘Wakefield’s article linking MMR vaccine and autism was fraudulent’, by Fiona Godlee, Jane Smith, Harvey Marcovitch, British Medical Journal, 2011; 342: c7452
‘Autistic enterocolitis: is it a histopathological entity?’, by Thomas MacDonald and Paula Domizio, Histopathology 50, 2007
Callous Disregard: Autism and Vaccines – The Truth Behind A Tragedy, Andrew Wakefield, Skyhorse, 2010
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