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Richard Horton, Editor of The Lancet, found thirteen books referring to Andrew Wakefield’s paper and the MMR vaccination ‘crisis’ on the shelves of his local bookshop.1 Now he adds a fourteenth.2 This is an extraordinary quantity of material to have been generated by a single scientific paper, on just twelve cases, raising the ‘possibility’ of a link between MMR vaccine and a syndrome of bowel disease and developmental disorder in children. Of course it’s not as simple as this. In the paper the authors state that they ‘did not prove an association between measles, mumps, and rubella vaccine and the syndrome described’; however, at the press conference to mark its publication, Wakefield declared that there was a case for splitting the vaccine into its component parts, and so, to use Horton’s analogy, ‘lit the gunpowder trail that could not be extinguished’. That single fuse led to a series of explosions that had repercussions for politics, science, the medical establishment, the media and, almost incidentally, autism. As an anaesthetist by trade I can claim no expert knowledge but followed the debate from the start, and especially after the arrival of a first child.
Horton’s book is best in its description of the events surrounding the publication of the paper and the subsequent debate. He gives insight into the tensions affecting Wakefield, Wakefield’s coauthors, other doctors at the Royal Free Hospital and Medical School and, of course, the Editor of The Lancet. A particularly intriguing element is the account of a five-hour presentation given earlier this year by the Sunday Times journalist Brian Deer, whose investigation it was that led to a partial retraction (‘retraction of an interpretation’) of the paper. The mysterious appearance of the Liberal Democrat MP Dr Evan Harris at this meeting in the offices of The Lancet indicates the extent to which the issue had become politicized.
The sheer bitterness of the argument still surprises me. On the one side there is the pro-MMR camp; for instance, Evan Harris described the events at the Royal Free as ‘outrageous’, and there was talk of ‘rubbing out’ Wakefield. On the other side were such as Stephen Glover, a Daily Mail columnist, who denounced as ‘assassins’ those who questioned Wakefield’s paper. Horton finds himself attacked from both directions. While Glover counts him among the assassins, Deer accuses him of indulging in ‘readership-building controversy’ and of having favoured Wakefield as ‘an old Royal Free chum’. There is also the revelation that people had been trying to get hold of Horton’s home telephone records, for what reason we (and he) will probably never know.
Horton appositely concludes that ‘there is something wholly unsatisfactory about the way this debate has been conducted. It has been an anarchic free for all...’. He also offers some thoughts on the state of biomedical science and research. The dilemma is that research needs more funding than it can get from independent sources yet funding by interested parties can introduce bias. A key issue concerning the Lancet paper is whether or not Wakefield’s funding from the Legal Aid Board, not declared at the time, represented a conflict of interest. Wakefield says no, Horton says yes. This is where the field becomes a bit muddied. As Horton points out, the issue is not just whether there was a direct conflict of interest but also whether the arrangement could have led to perception of such a conflict. To resolve such issues in the future he suggests that an independent body, a Council for Research Integrity, could usefully act as a buffer between interested parties and researchers. Meanwhile, there has been one positive development in relation to publication bias (the tendency to favour research with positive rather than negative results), something of which the pharmaceutical industry, in particular, is often accused. In September 2004 members of the International Committee of Medical Journal Editors declared that, to be eligible for publication in their journals, a trial must have been publicly registered at or before the onset of patient enrolment. With such a system in place, a trial with negative results is less likely to be ‘lost’.
Another issue to have come out of the MMR debacle is the dissemination of scientific information to the public. Concluding, Horton proposes that the whole episode could have been prevented by more balanced reporting in the media and offers a possible solution in the form of a National Agency for Science and Health (another independent body) which would provide
‘... the trustworthy space to debate and judge conflicting evidence concerning the health effects and ethical implications of mobile telephones, water fluoridation, genetically modified foods, animal experimentation, BSE and vCJD, SARS, stem-cell research, global warming, nuclear power, public perceptions of weapons of mass destruction, organ transplants from animals to humans, gene therapy, the links between radon and cancer and housing design.’
Beyond this I found the book less persuasive. Horton touches on the issues related to provision of care for autistic children and the vulnerability of parents to dubious information (especially on the internet). But ‘touches’ is all he really manages. For depth and breadth I would recommend another book published this year, MMR and Autism: What Parents Need to Know,3 by Michael Fitzpatrick, a general practitioner and the father of an autistic boy. The book describes, movingly but without a hint of sentimentality, the process of gradually discovering that your child has this condition and then the difficulties of getting a formal diagnosis and providing care. More moving still is his account of the mother who came to see him in despair because she blamed herself for her son’s autism, having had him vaccinated against MMR. This surely is one of the most terrible legacies of the Wakefield affair—that a mother should be wracked with guilt because of research that was ‘fatally flawed’ and even at the time of publication was shown to contain inconsistencies.
Fitzpatrick knows his non-medical readership. Whereas Horton assumes that readers will understand what he means by the ‘immune system’—a concept central to the debate on the relation between MMR and autism—Fitzpatrick recognizes how this originally scientific term (which even in medicine goes back only to 1967) has been taken up and promoted by diverse schools of ‘alternative health’. Thus, when a patient asks what harm immunizations or antibiotics might do to the immune system, the clinician does well to remember that the system in question may not be the one recognized by conventional medicine.
Fitzpatrick is also in a position to provide a more objective account than Horton’s on what happened when the Wakefield paper appeared and subsequently. Although he cannot offer the behind-the-scenes picture we get from Horton, he indicates the impact of the unfolding controversy from the perspective of a parent, as he found himself mentally going over the events that preceded his son’s diagnosis. This links in with his discussion of ‘regressive’ autism—the previously uncommon variant that became an ‘epidemic’ in the wake of the Lancet paper. He cites autism experts as being exasperated by the lack of precision in characterizing the ‘regression’ in cases of autism attributed to MMR.
Why was the paper published at all? Although, as Horton has argued, it is absolutely correct that journals should have freedom of expression to stimulate debate and bring out new ideas, the reason for publication remains obscure. His declaration that Wakefield’s paper was fatally flawed was made in the light of subsequent information; but in The Lancet the article did appear with an accompanying critique that, if it had been obtained in the peer review process, would have caused many a less distinguished journal to reject it—let alone one that publishes less than 10% of submissions (and no I’m not bitter and twisted). Horton refers to the importance of perceptions, and the acceptance of this work in The Lancet, albeit with critical commentary, did harm by enhancing the perception of its scientific validity.
Hindsight, of course, makes things seem more straightforward than they were at the time and there is no doubt Horton published the paper with the best intentions. However, he wields a powerful weapon (his fuse analogy is apposite) and there has been a lot of collateral damage. In his introduction he describes the writing of the book as a kind of personal exorcism and this is how it comes across. This narrow focus is the reason why, ultimately, it is unsatisfying. Fitzpatrick, on the other hand, offers a profound and wide-ranging account including politics, philosophy and rationality, science and medicine, the media, the medics, history and autism itself from both sides of the fence and indeed the fence itself. Erudite without obscurity, economical without dryness, I found his book a gripping read—and so did my wife, a non-medic. On the jacket of Fitzpatrick’s book Brent Taylor is quoted as saying it should be read by ‘every health worker, parent, politician and journalist concerned with these issues’; to this list I would add anyone who is intrigued by the workings of society today.