How 'mommy instinct' outdid science
Seth Mnookin's book The Panic Virus
He had planned to tell a sociological history, a footnoted exposition of how mistrust in routine childhood vaccines entered the collective mind 15 years ago and ignited explosions of conscientious objection across many developed countries.
But Seth Mnookin's narrative got hijacked by its characters: among them the renegade and financially embroiled Dr Andrew Wakefield, popular culture queen Oprah Winfrey, and a down-on-her-luck glamour model called Jenny McCarthy.
The real story of a crisis of faith in arguably the greatest health breakthrough of the last century, the US author says now, is one of strong personalities fixated on their own distorted perspectives and of a media that abetted and inflated them by valuing colour and conflict ahead of scientific fact.
The bullet points of the Wakefield debacle are well known: in 1998 he published a paper linking the measles mumps rubella (MMR) vaccine with autism in a leading medical journal, The Lancet, which later retracted it after the extent of his financial and ethical conflicts of interest became clear. He had recruited most of the 12 British children in his study from an anti-vaccine lobby group and held patents for a rival vaccine. Wakefield, who also misrepresented some of his results, was struck off Britain's medical register last year. But the horse had long since bolted.
In the five years after his findings were widely reported, the British MMR vaccination rate fell to 80 per cent from 91 per cent - a big enough drop to allow the spread of the viruses, leading to serious illness.
Among several large studies conducted since, none has found evidence that vaccines trigger autism, and British immunisation rates are slowly recovering.
''I think the media failed completely. As an institution it failed so enormously in this story,'' said Mnookin in an interview ahead of the release here next week of his book The Panic Virus: Fear, Myth and the Vaccination Debate.
He was referring to reams of appealing, if spurious, copy centred on Wakefield, a hyperactive attention seeker in cowboy boots and insufficiently buttoned shirt, who was often portrayed as a children's hero battling an uncaring establishment.
Even accepting most journalists' lack of scientific education, Mnookin said, Wakefield's original study should have rung ordinary reporting alarm bells.
''The scientific method can take a while to understand because it's not always intuitive. But anyone can understand in two seconds that you can't draw conclusions about the population as a whole from 12 people,'' he said.
Giving Wakefield's views free rein, even alongside more mainstream findings, inevitably skewed the field, Mnookin said. Genuine balance could not be achieved if a media report included ''one person on each side when the consensus is 1000 to one''.
But then scientific balance was always secondary to the compelling story of one man against the system.
In the US a couple of years later, a former Playmate of the Month and comedy TV star, Jenny McCarthy, wrote a book about her son's apparent autism, and her belief the preservative in the MMR jab had caused it.
On the influential Oprah show in 2007, Winfrey applauded McCarthy's ''mommy instinct'', contrasting it favourably against an emotionally neutral but scientifically scrupulous statement by the US's pre-eminent public health agency, the Centres for Disease Control, that ''the vast majority of science to date does not support an association between thimerosal in vaccines and autism''.
The Oprah/McCarthy episode, said Mnookin, presented McCarthy in the same mould as Wakefield - as a brave warrior against authority - and demonstrated the superior power of a photogenic individual with a wrenching personal story over painstakingly gathered epidemiological evidence to sway popular opinion.
''The people who shout loudest get listened to,'' he said.
Associate Professor Philip Chubb, the deputy head of Monash University's journalism program, agrees the media has a poor track record in representing scientific debate.
In the case of climate change, he said - which might apply also to the presentation of research into vaccines or tobacco - there was ''a tendency to balance, in the name of journalistic ethics, the views of scientists with those of climate change deniers''.
''If you had a scientific community which was divided on the issue,'' said Chubb, ''it would be perfectly reasonable for journalists to report on that division. When there is no division, and the only people opposed … don't have any scientific credibility in this area and mostly don't have any scientific credibility at all, and are motivated by extreme ideology, then the idea of using them for balance is [wrong].''
The media's use of defiant and charismatic individuals such as Wakefield and McCarthy, to give an otherwise opaque subject light, movement and a flavour of human power struggle, was another ''failure of journalistic imagination'', Chubb said. ''The media does it because of a compulsion to entertain and always find the less serious side of an issue … If the media does see itself as resting on a conflict model, there is enough disagreement [among scientists] to keep any journalist going.''
The promotion of dissenting voices from far beyond the boundaries of legitimate scientific debate could cause real harm, Chubb said, by muddying important policy questions: ''In the minds of the general public the issue becomes confusing, and they switch off.''
Chubb also pointed to an anomaly in the public's response to scientific findings. ''In surveys, people say they trust scientists'' far ahead of those working in many other sectors, including the media, he said. ''So on the one hand they're saying they trust scientists. On the other hand, on these really difficult issues they are ignoring them.''
Reflecting now on how the shaky vaccines and autism theory was able to garner such momentum, Mnookin, too, fingers the matter of trust. Some time in the latter half of the last century, he said, a longstanding love affair between science and the public quietly soured, and left a substrate of disappointment.
''If you go back to the middle of the 20th century, and even taking into account World War II and the only instance of the atomic bomb being used on the human population, the story of science's effect on the everyday life of people over the previous 50 years had been one almost miraculous medical intervention after another,'' said Mnookin, citing vaccines and penicillin.
''Then you look back at the last 50 to 60 years and the Cold War, this threat of nuclear annihilation has been part of everyday life. We haven't cured cancer, there have been accidents at nuclear power plants … Agent Orange, thalidomide.''
The scientific community, in Mnookin's construction, failed ''to realise that we're not in the 1950s any more and we're not going to believe you just because you tell us''.
But if science and ordinary people were already cruising for a fight, Mnookin said, then the latter may not have appreciated the seriousness of choosing immunisation as their battleground.
''One unique aspect of this was that the potential repercussion of not vaccinating had become so notional,'' he said.
A generation brought up free from the carnage of childhood infectious diseases did not have the imagination to appreciate the devastating consequences of forgoing vaccines.
That is where the story gets complicated, said Dr Julie Leask, a senior research fellow and manager of social research at the University of Sydney's National Centre for Immunisation Research & Surveillance.
Leask, a firm supporter of vaccines, nevertheless believes the danger posed by a small cabal of anti-vaccinators, at least in Australia, is often overstated; full immunisation according to the national schedule is achieved in 94 per cent of children by age two, and of the remaining 6 per cent a mere half are conscientious objectors; for the others, practical issues such as time or transport difficulties means they have not got around to it.
She sees last year's clampdown on immunisation objectors the Australian Vaccination Network, which lost its charity status and was ordered by the NSW Health Care Complaints Commission to prominently declare its anti-vaccine stance on its website, as an ''intensification of the war between radical non-vaccinators and radical pro-vaccinators''.
Health authorities might do better, Leask said, to be less brittle in their cheerleading.
''We know the vaccine issue is grey. It's not a simple case of vaccines are perfect,'' Leask said, and lack of acknowledgment of their limitations meant ''if you get that disease [despite being vaccinated] then you're going to be disillusioned. If your child gets a mild reaction you're going to be disillusioned.''
Meanwhile among doctors and nurses there was ''a fear that if you discuss the risks, if you even mention them, you put people off''.
Instead of expecting to convince people by bludgeoning them with vaccination facts, health authorities should be more conciliatory towards the motivations of unconvinced parents, especially women for whom ''intensive mothering'' was a point of pride.
''Again and again we hear parents say, 'I want balanced information. I don't want to feel I'm being propagandised,' '' Leask said. ''Upper middle-class mothers are starting to question immunisation more than they would have done, as part of a suite of things they want to do for their child - things like baby gym. You want to show you're doing a good job of mothering and not just accepting the status quo.''
The Panic Virus: Fear, Myth and the Vaccination Debate is out on Monday (Black Inc, rrp $32.95).