There was much discussion (and there remains much discussion!) about comments that Dr. Bernadine Healy made in her interviews with Sharyl Attkisson (autismvox, denialism, LeftBrainRightBrain, to name a few) .  Dr. Healy suggested that the Institute of Medicine’s report on vaccines and autism is flawed becuase, in her assertion (a) the IOM (and others) are actively avoiding any search for a “susceptibility group” and because of this (b) the IOM has “turned it’s back” on the hypothesis.  Below is a quote from that interview:

Healy said: “There is a completely expressed concern that they don’t want to pursue a hypothesis because that hypothesis could be damaging to the public health community at large by scaring people. “First of all,” Healy said, “I think the public’s smarter than that. The public values vaccines. But more importantly, I don’t think you should ever turn your back on any scientific hypothesis because you’re afraid of what it might show.”

This statement bothered me.  The IOM is part of the National Academies.  I know people who are members of National Academies (although not the Institute of Medicine), and Dr. Healy’s assertion is completely at odds with how they act.  There is often a call for “independent” research or analyses from groups within the autism community.  Well, that’s the National Academies.  They are the independent voice that the government can call on to analyze research and report back.

They give a description of their purpose on the National Academies website:

The National Academies perform an unparalleled public service by bringing together committees of experts in all areas of scientific and technological endeavor. These experts serve pro bono to address critical national issues and give advice to the federal government and the public.

Another good place to look for a description of the National Academies is here.

Given my concerns, I went to the source: the National Academies. I emailed them links to some news stories and expressed some concerns that this image of the IOM was damaging, not only to them, but to the autism community as well. Below is the response I received (reproduced with permission):

Thank you for your recent and very thoughtful message. As you know, the IOM’s Immunization Safety Review Committee most certainly did not suggest that scientific inquiry into the role of vaccines in autism should cease because the results could affect public perception of the value of childhood vaccinations. The public deserves better than that.

The committee’s 2004 report, Vaccines and Autism, states:

“Determining causality with population-based methods such as epidemiological analyses requires either a well-defined at-risk population or a large effect in the general population. Absent biomarkers, well-defined risk factors, or large effect sizes, the committee cannot rule out, based on the epidemiological evidence, the possibility that vaccines contribute to autism in some small subset or very unusual circumstances. However, there is currently no evidence to support this hypothesis either.”

After a paragraph in which the report follows that sentence with a discussion of the sparse literature regarding subsets of autism and the theoretical possibility of a vaccine-susceptible subpopulation, the report states:

“While the committee strongly supports targeted research that focuses on better understanding the disease of autism, from a public health perspective the committee does not consider a significant investment in studies of the theoretical vaccine-autism connection to be useful at this time. The nature of the debate about vaccine safety now includes a theory that genetic susceptibility makes vaccinations risky for some people, which calls into question the appropriateness of a public health, or universal, vaccination strategy. However the benefits of vaccination are proven and the hypothesis of susceptible populations is presently speculative. Using an unsubstantiated hypothesis to question the safety of vaccination and the ethical behavior of those governmental agencies and scientists who advocate for vaccination could lead to widespread rejection of vaccines and inevitable increases in incidence of serious infectious diseases like measles, whooping cough, and Hib bacterial meningitis.

The committee urges that research on autism focus more broadly on the disorder’s causes and treatments for it. Thus, the committee recommends a public health response that fully supports an array of vaccine safety activities. In addition the committee recommends that available funding for autism research be channeled to the most promising areas.”

Some readers have apparently failed to appreciate the full meaning and intent of the committee’s carefully written text. The report, as supported by the above-quoted paragraphs, clearly acknowledges the possibility that new information in support of hypotheses about susceptible subpopulations could emerge, at which time significant new research efforts might be appropriate. Whether the recent information about mitochondrial dysfunction will be the foundation for a major new research direction remains to be seen. The committee’s comment on the untoward consequences of discouraging vaccination was offered as an elaboration of their concerns about the unsubstantiated vaccine-autism hypothesis and not as support for their recommendations about an appropriate research agenda for understanding autism.

The scientists and clinicians on this committee evaluated the then-available scientific data in an unbiased manner. They reached their conclusions based on where the evidence led them. This principle—making recommendations only if supported by the evidence—guides all studies that IOM undertakes. I reiterate that the committee most certainly did not urge caution about pursuing the vaccine-autism connection in order to avoid frightening the public away from immunizations. The IOM stands ready to re-examine this issue should sufficient and relevant evidence emerge.

I don’t believe that Dr. Healy’s statements are consistent with the way the IOM works in general or as described above. This isn’t just a statement that I disagree with her, I really don’t see how they are consistent, so I am sending her a link to this blog post and asking if she can elaborate.

This is vitally important. Dr. Healy’s statements, in my view, undermine the integrity of the IOM process, not just the 2004 report on autism and vaccines. They add to the growing mistrust of any group, be it academic, governmental or, in the case of the National Academies, independent, who research or analyze research on autism. The fact that they have been left for so long unchallenged and, in my opinion, unsupported, is very damaging to the autism community.