Bearing False Witness for Profit
To say that people love a good story is cliché, but the primary problem with that statement is that love is too mild a term. People need their stories with a depth of feeling that belies rationality. Stories can provide comfort, structure, and even provide an individual with an identity. An idea can be boundlessly outlandish, but if couched in a compelling narrative, it can gain acceptance in ways and by numbers that defy belief. Examples of this abound from the big picture of religion to smaller notions like conspiracy theories.
One recent narrative is that vaccines cause autism in children (see the three-article special section “Vaccines and Autism: Myths and Misconceptions,” SI, November/December 2007). There are few narratives as dramatic, as inflaming, as that of a child being threatened, and that is the core conflict examined by Paul Offit, MD, in his masterful Autism’s False Prophets: Bad Science, Risky Medicine, and the Search for a Cure. In the course of his own carefully written narrative, Offit, the chief of Infectious Diseases and director of the Vaccine Education Center at Children’s Hospital of Philadelphia, tells many stories that come together to provide a deeply disturbing depiction of how quack science based on falsified research quickly fueled a monstrous conspiracy theory accusing vaccine manufacturers and the physicians administering them of willfully harming children in a malicious conspiracy for profit.
Offit’s approach to this poisonous idea is to tell his tale from the beginning. He dates the earliest discussion of autism (as a diagnosis) to a paper published in 1943 and tells of the distressing rapidity with which bad information began to crowd out good research. Bruno Bettelheim and his harmful and incorrect ideas about autism and parenting provide an early model for the accusatory and factually deficient approaches taken up by many others, but the grandfather of this conspiracy theory lies in the “research” published in the Lancet in 1998 by Andrew Wakefield, a gastroenterologist working at London’s Royal Free Hospital.
Offit weaves the story of Wakefield’s rise and fall through the book, vividly illustrating how his medical fraud and quackery metastasized through the autism community. It became the basis for the accusation that the medical community not only did not know what to do about autism but was actually intentionally causing it through an amoral and greedy pursuit of profits by administering immunizations that they knew caused the disease.
Offit carefully and clearly explains the shaky basis of Wakefield’s theory: that the MMR vaccine causes inflammation to intestines, allowing harmful proteins (though he could not identify what those were) to pass through the damaged intestine and harm a rapidly developing brain. That such a finding was published in one of the oldest and most respected medical journals in Great Britain, the Lancet, caused an explosion of press coverage whose shock waves carried over the globe. Wakefield’s hypothesis was not generally supported by his paper, but the sheen of legitimacy granted to it by its publication was thrown into the maelstrom of a sensation-seeking and conflict-hungry global media machine that roared to a white-hot pitch in a matter of days.
The need for a narrative took over at this point. That the scientific method (which takes time) and the court proceedings that arose in the aftermath (which take even longer) utterly disproved the legitimacy of this theory was lost on a media interested in dramatic conflict and the pronouncements of celebrities, no matter how incorrect and ignorant they may be, over clarity. The compelling, emotionally gratifying narrative of an evil entity defied by newly empowered victims sells better than the slow, reflective work of science.
Tragically, this story does not begin and end with Wakefield. Despite a lack of corroborative research and court proceedings that revealed the depth to which Wakefield falsified his dubious research, the idea of vaccines causing autism has mutated and survived. If it wasn’t MMR, then it was the mercury in the thimerisol used to preserve multidose vials of vaccines. Wakefield opened a Pandora’s box of bad science that shows no signs of abating. “Cures” have abounded, and some have caused greater harm and even death to the children treated. This is a narrative that still lacks a happy ending.
Science still hasn’t determined the cause of autism, which is frustrating a community of people who are desperate for a cure for their children’s medical condition. What this narrative provides to parents of autistic children (and anyone else interested in their fate) is someone to blame, a nemesis they can safely direct their anger toward. Autism has been a mystery since it was initially identified over half a century ago, and progress on research has only recently begun to illuminate its genetic basis. In the absence of a clear cause, it is more emotionally satisfying to identify already existing villains (Big Pharma and Big Medicine) as the cause of it all. Offit himself has been the victim of this abuse but has bravely produced a definitive account of this tragic story.