Nov 12 2009

IACC Statement on Autism Research

Politics is partly about setting priorities and agendas, and therefore it is impossible to keep politics out of science. Politicians are also in control of the public’s purse strings, and so funding science also cannot be free from politics.

But ideally we should have an atmosphere in which politicians and funding agencies set broad agendas, and then let scientists decide the details of which research should be funded based upon the science. It is, in fact, an important trust that public money that is spent on scientific research be utilized optimally, and not to promote someone’s narrow ideological agenda. Examples of abuses are legion; my favorite example is the National Center for Complementary and Alternative Medicine (NCCAM), Senator Tom Harkin’s pet project in which the usual standards of medical research have been subverted to promote sectarian medicine.

We want scientists to follow their noses – to research those questions they think are most fruitful. But scientists are often forced to follow the funding, and this distorts the direction of research. Industry funding distorts research in ways that are advantageous to industry – a real problem that is being examined and there are at least attempts to deal with it. Government funding should be neutral, and provide a counterbalance to industry funding, but is often subverted to ideology. Even well-meaning patient-groups can distort funding if they try to dictate what scientists should be researching in exchange for their fund-raising, with detrimental effects.

Not surprisingly, the area of autism research has also become overly politicized, where ideological agendas threaten to distort the allocation of funding, and therefore the direction of research. The Interagency Autism Coordinating Committee (IACC) is tasked with reviewing the strategic plan for government funded autism research on an annual basis. This is part of the Combating Autism Act passed by Congress. Recently the IACC has been meeting to determine the strategic plan for the next year, and decided to include research into possible links between vaccines and autism:

The new language, approved unanimously, calls for studies to determine if there are sub-populations that are more susceptible to environmental exposures such as immune challenges related to naturally occurring infections, vaccines or underlying immune problems.

This decision represents, in my opinion, the infiltration into the autism community of anti-vaccinationists – who have an agenda other than researching autism. In fact, the anti-vaccine movement has been unfortunately successful in branding themselves as autism activists and experts. This decision by the IACC represents the fruits of that infiltration – a distortion of funding for autism research to suit their anti-vaccine agenda. In fact, two members of the IACC – Lyn Redwood and Lee Grossman, were added specifically to represent the anti-vaccine movement in the (probably misguided) hope of placating that group.

I am not suggesting that there are not those who are sincerely concerned about autism research and curing autism, and who honestly think that researching a potential link to vaccines or some other environment trigger is a legitimate avenue of research. Rather, I am saying that this view largely stems from and anti-vaccine ideology and is not supported by existing research.

It also stems from a distrust of the scientific and medical community, which creates a fatal conflict that renders this research agenda practically useless. Of course, if a previously undetected link to vaccines or an environment trigger is discovered by this research, I have no doubt the scientific community will respond in a way that is proportional to the evidence. However, given existing research, it seems unlikely that a significant link will be discovered (although it is probable that minor environmental triggers are out there).

On the flip side, if rigorous research continues to show no link between vaccine and autism, the very people who are pushing for this research are unlikely to be moved, if history is to be any guide. The anti-vaccine movement has a well-documented history of moving the goalpost (it’s MMR, no it’s thimerosal, no it’s other toxins – wait, we have to test every vaccine and every ingredient for every possible side effect). They also dismiss research showing no link as flawed or compromised, regardless of the reality. Even when they are involved in the research up front – all they care about are results, not methods.

Like the NCCAM, it is pointless to do scientific research to please those with an anti-scientific agenda. When the NCCAM failed to validate any CAM methods, Tom Harkin whined that they were not fulfilling their mandate – as if their mandate were not to conduct rigorous science, but to validate his ideology.

But the anti-vaccine movement has made themselves the squeaky wheel in autism research, and politicians have bowed to their pressure. There is always insufficient pressure from those who simply want unsullied science.

For example:

In enacting the Combating Autism Act (CAA), Congress intended that the federal government examine potential links between vaccines and autism. During the Senate debate over the CAA, Mike Enzi, Chairman of the Senate Health, Education, Labor & Pensions Committee, instructed that “no research avenue should be eliminated, including biomedical research examining potential links between vaccines, vaccine components, and autism spectrum disorder.” 152 Cong. Rec. S8772

This is clear pandering. It also contains a significant misconception – the idea of eliminating research avenues. This is the wrong way to look at research. There is always limited funding and resources to research potentially limitless questions and avenues. The question, therefore, is not which avenues to eliminate, but which avenues to pursue. Deciding to pursue genetic causes of autism, because that’s where the evidence is leading, is not the same thing as “eliminating” other avenues. Each research question, in order to garner funding, should justify itself based upon evidence, plausibility, and potential for benefit. That is the standard that is generally applied – unless political pressure is brought to bear to distort the process.

Why should a Senator busy himself with making statements about the details of research? That is an inappropriate level of meddling. It derives from convincing politicians that the scientific process is already distorted, which itself stems from distrust of the scientific and medical communities. Which brings us back to the inherent problem of letting those who distrust the scientific process set the agenda for scientific research. No good can come of this.

I am, however, always a little conflicted on these issue (such as researching autism and vaccines and the NCCAM). I like having more research to inform raging public debates. If this research provides more evidence against a link between vaccines and autism, I will be happy to have it. If it shows, with rigorous science, that there is some connection we have missed, I will be happy to update my opinion on the matter, and glad that new interventions may be possible. But the same can be said about any research – even research into highly dubious questions. If ESP research shows that ESP is a real phenomenon, I will be happy to accept it. But at the same time, I think ESP is highly unlikely to the point that it does not deserve limited public funding.

In other words, we have to also consider – what discoveries will not be made because limited autism funding is being shunted away from more promising research in order to placate the anti-vaccinationists (especially considering that they can never be placated)? We will likely never know.

The IACC strategic plan is a squeaky-wheel, politically motivated agenda, not the optimal allocation of limited public research funds based upon an objective assessment of the state of the science. It is the result of constant bullying from the anti-vaccine movement. We will see what fruit it bears.

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