Trust and accountability in the vaccine-autism wars

Science Blogs

Posted on: May 28, 2009 1:28 PM, by Janet D. Stemwedel

There’s a new feature article by Liza Gross [1] up at PLoS Biology. Titled “A Broken Trust: Lessons from the Vaccine-Autism Wars,” the article does a nice job illuminating how the themes of trust and accountability play out in interactions between researchers, physicians, patients, parents, journalists, and others in the public discourse about autism and vaccines. Ultimately, the events Gross examines — and the ways the various participants react to those events — underline the questions: Who can we trust for good information? and To whom are we accountable for our actions and our decisions? In many ways, it strikes me that the latter question needs more consideration than people typically give it.

The question of trust, on the other hand, is one with which people seem more ready to grapple. The challenge, however, is that such grappling seems more often than not to result in mistrust.

Consider, for example, the outcome of efforts to be transparent about the contents of foods and medicines, and to err on the side of caution in instances where definitive information was lacking. You would think such efforts would inspire trust.

Sometimes, they don’t.

In 1997, a US congressman from New Jersey inserted into a funding bill a provision that gave the Food and Drug Administration (FDA) two years to measure levels of mercury in all products under its jurisdiction, and release its findings to Congress and the public. The FDA’s analysis revealed that because several new vaccines were added to the immunization schedule after 1988, some infants could be exposed to as much as 187.5 micrograms of ethylmercury by the time they were 6 months old–if every dose of Hib, hepatitis B, and DTaP contained thimerosal.Based on this new finding, says [UC-San Francisco medical anthropologist Sharon] Kaufman, leading vaccine experts began to investigate the possibility that mercury in vaccines was putting kids at risk. While the ethylmercury levels exceeded the federal safety guidelines for methylmercury, which gains toxicity as it accumulates through the food chain, no guidelines existed for ethylmercury at the time. Its toxicity was largely unknown; however, there was evidence that very high doses of ethylmercury could cause neurological damage. It was also known that methylmercury can cause subtle neurological effects in infants born to mothers who eat large amounts of fish and whale meat. Studies have since shown that ethylmercury is eliminated much faster than methylmercury and is unlikely to accumulate. But in 1999, no one knew what dose to consider safe for the developing brain.

Given the uncertainty about ethylmercury’s toxicity, Neal Halsey, director of the Institute for Vaccine Safety at Johns Hopkins University, urged vaccine policymakers at the CDC and American Academy of Pediatrics (AAP) to remove thimerosal from vaccines as a precautionary measure and to maintain public confidence in their safety. The agencies agreed, and vaccine manufacturers responded quickly; by March 2001, no children’s vaccines contained thimerosal.

Anticipating the FDA’s release of its findings, the AAP issued a statement explaining its decision as an effort to minimize children’s exposure to mercury, asserting that “current levels of thimerosal will not hurt children, but reducing those levels will make safe vaccines even safer”. Unfortunately, Kaufman says, “rather than reassuring parents, the statement fueled public fears and prompted all sorts of questions.”

To Halsey, one of the most respected figures in the vaccine world, simply ignoring the FDA’s findings was not an option. He hoped the rapid response would demonstrate the government’s “commitment to provide the safest vaccines possible”. But it was too late for reassurances. Several months later, Medical Hypotheses–an unconventional journal that welcomes “even probably untrue papers”–received and later published a purely speculative article called “Autism: a novel form of mercury poisoning”. Two of the authors, Sallie Bernard, a marketing consultant, and Lyn Redwood, a nurse, had just launched the parents’ advocacy group SafeMinds to promote their thimerosal hypothesis. Although their now debunked theory appeared in a journal that openly eschews peer review and evidence-based observations, several parent advocacy groups still cite it as evidence that mercury in vaccines causes autism.

Imagine you’re someone charged with keeping a product regulated by the FDA safe. Substance X is in that product (and is in it for a good reason, although possibly its function could be accomplished with a different ingredient or a different mode of using the product). The possibility is raised that X might cause harm. Of course, it might not. Before the matter has been studied (either exhaustively, or preliminarily), how should you regard the potential for harm?

My impulse would be, if the product did not need X, to go without it. But this doesn’t consider the potential impact the removal of X might have on the attitudes of people using the product. In the case of the removal of thimerosal from vaccines, members of the public responded to a move that was intended to err on the side of caution by asking:

  • Why are you removing it?
  • Why didn’t we know it was in there in the first place?
  • What else is in there that we didn’t know about (and what harm could it cause)?
  • Could that stuff you’re taking out be what harmed my kid?
  • Could something else that’s in there that we don’t know about (because you haven’t told us) be what harmed my kid?
  • Can you prove to me that the stuff you took out didn’t harm my kid (or other kids)?
  • If it wasn’t that stuff you’re taking out, what did hurt my kid?
  • What do you mean you don’t know?

There may well be more underlying this mistrust. The FDA is a government agency, and suspicion about the government (whether of secret plots or mere incompetence) is a national pass time. As well, non-scientists seem to have some issues with the medical and research communities.

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Author: Leslie Carol Botha

Author, publisher, radio talk show host and internationally recognized expert on women's hormone cycles. Social/political activist on Gardasil the HPV vaccine for adolescent girls. Co-author of "Understanding Your Mood, Mind and Hormone Cycle." Honorary advisory board member for the Foundation for the Study of Cycles and member of the Society for Menstrual Cycle Research.