By Dorit Rubinstein Reiss
A new book on a prominent misinformation campaign targeting the measles, mumps, and rubella (MMR) vaccine has profound insights into current vaccine debates, such as those emerging around a potential COVID-19 immunization.
“The Doctor Who Fooled the World: Science, Deception, and the War on Vaccines,” by Brian Deer, exposes the elaborate fraud perpetrated by Andrew Wakefield, the former British gastroenterologist who, in the late 1990s, created a scare about MMR vaccine by suggesting it caused autism.
Brian Deer is the journalist who, through several years of dogged investigation, exposed Wakefield’s hidden conflicts of interests and misrepresentations, showing that the small study used to create the scare was not just deeply flawed – as was apparent on its face – but an elaborate fraud.
Unfortunately, Wakefield and his misrepresentations are still with us, and are still putting children at risk all around the world. This makes Deer’s book – which teaches us how Wakefield tricked the world, and the lasting impact of his fraud – timely and important.
In 1998, Wakefield’s hospital – the Royal Free Hospital in London – had a press conference about a paper that Wakefield and 12 other co-authors published in the leading medical journal, The Lancet. The study reported on a sample of twelve children and claimed a new syndrome linking bowel disease, developmental problems, and the measles, mumps, and rubella vaccine.
The paper was inconclusive and weak even on its face, but that did not stop Wakefield from claiming the MMR vaccine was dangerous and recommending parents use single vaccines. For several years, Britain was gripped by a vaccine scare leading to disease outbreaks.
Starting in 2004, revelations showed that the children in the study were actively recruited from parents in litigation against MMR manufacturers, that Wakefield was paid to serve as expert witness in that litigation (a fact that he hid, among other conflicts of interest), and that the children were subjected to invasive, dangerous tests without ethics committee approval.
The book provides an in-depth picture of this, and of the many ways in which Wakefield’s paper was misleading.
I thought I knew the story. I had deep admiration for Deer’s investigative work long before the book; I have read Deer’s BMJ series on Wakefield, I have written about Wakefield’s misrepresentations in the past, have followed his later litigation efforts against Deer, and have responded to many of his admirers in online comments.
But I did not know even a quarter of it. As Deer describes it, the fraud was elaborate, involving many actors who helped send Andrew Wakefield just the right patients to put together the case against MMR, an effort for which he was secretly paid by the British legal aid. These actors included anti-vaccine activists in the UK, the solicitor who put together the case, the parents, and doctors urged – sometimes personally by Wakefield – to send children in.
The depth of the deception was also staggering. To give one example, not only did Wakefield change the histories of the children, but also he presented results that his own pathologists stated were normal as abnormal. Further, he presented a finding the literature agreed was benign – something he and his colleague gastroenterologists had to have known – as a problem.
The book also provides a good example of why ethical standards are needed in medicine – and how they depend, to some extent, on ethical people applying them. Deer describes the invasive tests used against the children that were the subjects of the study – and later, other autistic children whose parents were misled by the study. It describes children collapsing, crying, suffering, and their parents suffering. It describes how ethics were repeatedly ignored by Wakefield.
Deer shows how parents were misled by Wakefield, and how many still are. Some of these parents and their children are dealing with incredibly hard situations: a child in a wheelchair for life; a child who is both violent and self-injurious. Others less so. With much sympathy, the book shows how all of these parents are victims – left with guilt by the vaccines-cause-autism narrative, in addition to their other problems.
The book also directly confronts the problem of parents being wrong – or even untruthful. In quite a few of the cases, the parents’ stories simply did not fit the evidence, including the medical records. Sometimes, this could be explained by lack of recollection. Other times, it seemed intentional. The reality, as the book sets out, is that we simply cannot take parents’ claims that vaccines cause harm at face value. There are certainly cases where that could be true, but there are too many examples where it was not.
Finally, Deer shows us how aggressive (and often vicious) the anti-vaccine movement is – promoting its stories, attacking critics with every tool at its disposal, including lies, trying to intimidate, and more.
The anti-vaccine movement is dishonest, aggressive, and experienced in creating fear and doubt. We have seen that for decades – and now, that experience is being directed towards creating COVID-19 misinformation. We can learn from “The Doctor Who Fooled the World” how such misinformation is created and perpetuated, which may help hone our tools to combat it.