A Broken Trust: Lessons from the Vaccine–Autism War
11 years after Andrew Wakefield launched the MMR/Autism Hoax at a press conference to publicize his paper in the Lancet vaccination rates in the UK have yet to recover and measles is once more endemic in the UK. We had 1348 cases last year compared to 56 cases in 1998. In the USA MMR coverage remains high but measles is making a comeback courtesy of anti-vaccine enclaves amongst the “worried well” who regard autism as a more serious threat than the infectious diseases that, thanks to vaccines, they have never experienced. In the USA 25 percent of adults believe there is a connection between vaccines and autism. They are more likely to blame thimerosal, a mercury based preservative that used to be widely used in childhood vaccines, (but was never in the MMR triple vaccine) and other alleged pollutants that exercise Green Our Vaccines campaigners.
This situation persists despite the fact that Wakefield’s hypothesis is thoroughly discredited. The overwhelming opinion among scientists and doctors, backed by numerous scientific studies, is that there is no evidence of a connection between MMR and autism. A similar situation pertains with regard to thimerosal containing vaccines (TCVs). Moreover it is now 7 years since all routine childhood vaccines in the USA became thimerosal free. The growth of autism has not abated. This alone suggests that vaccines are not responsible.
Liza Gross discusses the reasons for this in an article published today by PLoS Biology, an open access journal, freely available online. In the article, entitled “A Broken Trust: Lessons from the Vaccine–Autism Wars,” Gross draws on the work of medical anthropologist Sharon Kaufman in an effort to understand
how the idea of a vaccine–autism link continued to gain cultural currency even as science dismissed it.
It is interesting to note both the similarities and the differences between the British and American responses. In the USA the authorities invoked the precautionary principle to remove thimerosal from childhood vaccines. The American Association of Pediatrics (AAP) issued a statement to reassure the public that
‘‘current levels of thimerosal will not hurt children, but reducing those levels will make safe vaccines even safer”
This merely served to convince a section of the public that there must be something wrong based upon the nostrum that there is no smoke without fire. In the UK health officials took an opposite stance in relation to MMR, refusing Wakefield’s call for the MMR vaccine to be split into separate shots because there was no evidence to support his claims. Rather than reassure the public, this tough stance was presented as evidence of yet further government intransigence in the face of a potential health disaster and is best understood in the context of the contemporaneous controversy over mad cow disease and the threat posed to humans from contaminated beef.
Kaufman argues that the hold which these narratives exert on the public consciousness goes a long way to explaining why the subsequent efforts by authorities both in the UK and the USA to marshal and present a wealth of scientific evidence has failed to seriously dent public perceptions.
Gross talked to Paul Offit, who correctly pointed out the need to bridge the gap between public and scientific perceptions of risk. But public understanding has always lagged behind science. The difference today is that public trust in science has been eroded. And the technological revolution that is the World Wide Web means that anyone can go online and find competing voices that are just as “sciency” as the experts we used to rely on. But these online health gurus make their living by being persuasive, not necessarily by being right.
What they have is a story with more narrative power than the strictly factual accounts of their scientific gainsayers. Offit understands this. It is why he has turned down requests to appear on any show with Jenny McCarthy, who uses her celebrity status to promote the anti-vaccine message.
‘‘Every story has a hero, victim, and villain,’’ he explains. ‘‘McCarthy is the hero, her child is the victim—and that leaves one role for you.’’
Gross ends with Rachel Casiday, a medical anthropologist in the UK who believes that the answer is for scientists to counter attack with narratives of their own.
Casiday suggests providing an alternative, science-based explanation or relating emotionally compelling tales about counter-risk—such as helplessly watching a young child die of a vaccine-preventable disease—in the same narrative format.
My only criticism of this article is that it can be seen as perpetuating a myth, a narrative if you like, about science being beyond most people. We rely, not upon our understanding, but upon the expert status of others in order to guide our actions. When experts are competing for our attention it is those with the most compelling narratives who prevail. Therefore the real experts need to beef up their image and their presentation skills and beat the self-styled experts and lifestyle gurus at their own game.
There is another story that needs to be told. The anti-vaccine movement did not emerge without challenge. The real experts may have missed the signs and failed to counter the contrarians until it was almost too late. But a number of parents of autistic children together with autistic self advocates have been meeting the challenge of the anti-vaccine movement online on email lists, in newsgroups, blogs and the latest social networking sites.
We do not think of autism in terms of epidemics and public health disasters. We want help to deal with the consequences of autism rather than its alleged causes. We believe that social models of disabilty have at least as much to say about autism as medical models. We need to celebrate and encourage autistic strengths while acknowledging the very real difficulties that face autistic people and their families.
Some of us have a professional as well as a personal involvement in autism. But most of us do not. That has not stopped us from grappling with the science in order to marry the narrative of our lives or our children’s lives to the scientific evidence in order to create new stories. If the professionals would take heed of our stories they would be better placed to challenge the pity party mentality of those who would demonize both science and autism to the detriment of both. And, who knows, perhaps together we can create positive outcomes for our narratives.
