IACC & Vaccines; Scientists & the Public

This Wednesday, the Interagency Autism Coordinating Committee---a federal committee that coordinates "all efforts" in the Department of Health and Human Services (HHS) concerning autism---is meeting in Washington, D.C. The agenda for this meeting:

- a joint meeting of the IACC and the National Vaccine Advisory Committee (NVAC) Vaccine Safety Working Group to discuss vaccine safety and autism - presentations on the NIH Autism Centers of Excellence and the National Database for Autism Research (NDAR)
- discussion of services-related activities
- analysis of the autism research portfolio

As evinced by the response to my most recent post on vaccines and autism, the first agenda item will most likely absorb a lot of attention and energy. The specific topic under discussion is to be "Feasibility and Design Issues Regarding Epidemiological Studies of Vaccinated, Unvaccinated and Alternatively Vaccinated Populations"---the sort of study that proponents of the notion that vaccines or something in vaccines might be "linked" to autism as a cause have long been calling for.

It's notable that the focus on this discussion item is "feasibility and design issues." There's been numerous calls by anti-vaccine/pro-vaccine safety advocates for such a study. Such advocates have asked, "What's so hard about doing such a study? Find a population of unvaccinated children, a population of vaccinated children, and compare the rates of autism---what's so hard about that?"

I'm not a scientist and, as noted, my educational background is in the humanities. So on the one hand, I very much see where the anti-vaccine/pro-vaccine safety advocates are coming from.

On the other hand, from what I've learned about designing and undertaking research studies, it's one thing to have an idea for a study, and another thing to execute it. What's under discussion is an epidemiological study that would involve studying the medical records of many, many children and a very large sample size of medical records at that. According to a 2008 survey from the Center for Disease Control and Prevention, most parents in the US have their children vaccinated, "with at least 90 percent coverage for all but one of the individual vaccines in the recommended series for young children." It's most likely that there'll be more children who have (1) been vaccinated and (2) have been diagnosed with autism, because there are more child who have been vaccinated than there are children who have not been.

But anyways. I'm glad that the IACC and the NVAC are discussing such a study, if only to put some of these variables out for consideration. Whatever the design or results of such a study, should the findings be further proof that there is no link between vaccines and autism (because there is no link), it's likely we'll see protests that something was done wrong, that the researchers had some kind of "bias," or some "moving of the goalposts" (as Orac at Respectful Insolence puts it), and further calls for "studies" and disputes about "the science."

The topic of vaccines and autism typifies the gap between scientists and public opinion noted in a report released last week by the Pew Research Center.

This report on science and public opinion found that, while "American like science," only 17% of the public thinks that the U.S.'s scientific achievements rate as the best in the world, in contrast to 49% of scientists thinking that they are. Further, scientists are critical about the public's knowledge of science:

Fully 85% see the public’s lack of scientific knowledge as a major problem for science, and nearly half (49%) fault the public for having unrealistic expectations about the speed of scientific achievements.

Scientists are particularly displeased with the media's coverage of science:

About three-quarters (76%) say a major problem for science is that news reports fail to distinguish between findings that are well-founded and those that are not. And 48% say media oversimplification of scientific findings is a major problem. The scientists are particularly critical of television news coverage of science. Just 15% of scientists rate TV coverage as excellent or good, while 83% say it is only fair or poor. Newspaper coverage of science is rated somewhat better; still, barely a third (36%) of the scientists say it is excellent or good, while 63% rate it as only fair or poor.

For the Pew report, some 2,500 scientists were surveyed and about 2,000 members of the public.

Considering that most people get their news about science from the media, rather than from reading the actual studies published in scientific journals or from speaking to scientists and hearing presentations by them, one might point the finger at the media for the gap between scientists and the public. The topic of vaccines and autism particularly highlights this divide, with the subject of vaccines and environmental causes of autism receiving a disproportionate amount of attention in the media, and with popular media outlets regularly producing news stories in which vaccines are said to be "possibly" linked to autism (because one can't outrule anything 100%).

While it takes years and years to conceive of, plan, execute, write up, and publish a scientific study, it's not uncommon to find the media reporting about a study in progress or a presentation at a conference as if it were a "new discovery." The media are also constantly putting out stories in which parents report a child's "amazing progress" from this or that supplement, device (such as portable HBOT chambers), detoxifying regimen, etc., etc.. These sorts of treatments receive further media attention when promoted by celebrities.

This situation, and the Pew study, are further reminders about why we need to evaluate science not celebrity. But I also hope that the study sends a call out to scientists that they the reasons for the gap are not only the media's or the public's doing, or the public's simple "ignorance." Scientists must work on their communication too and keep in mind that the public, and parents in particular, need to know they are truly being listened to, and their fears, worries, and uncertainties addressed. More than "more studies," this can assist in preventing miscommunication and distrust between the public and scientists---certainly there's been way too much of these around the topic of vaccines and autism.

See Framing Science for more discussion about the study from the perspective of a member of a panel of experts who was asked "to contribute input and ideas on the survey earlier this year."