Tom Insel and the Interagency Autism Coordinating Committee

Dr. Tom Insel left the National Institute of Mental Health after 13 years of being its Director.  He was the longest serving Director since Dr. Robert H. Felix, the agency’s founder. Despite controversies Dr. Insel’s appointment spanned over 3 presidencies.  He has now left for Google Life Sciences where he will lead attempts at developing technologies for the early detection of health conditions.  Dr. Bruce Cuthbert was appointed as Acting Director and now the position has been permanently taken over by Dr. Joshua Gordon.

I think it is now fitting to review some of Dr. Insel’s achievements. My views are biased as I served at the NIMH (well before Dr. Insel’s tenure) and remained in contact with many officials at the organization. It should come as no surprise that anybody who receives a political appointment at an organization is usually not well received by its members.  The initial uncertainties and mistrusts to an outsider are usually replaced as the members work together towards fulfilling common goals. Unfortunately, this was not the case with Dr. Insel as the initial comments of his Branch Chiefs at different meetings were, “When is he going to leave? I heard he was looking for a job at an academic institution but nobody seems to want him.”

It is true that Dr. Insel took over the NIMH during a somewhat tumultuous transition, but most of it was of his own making. Dr. Insel belonged to an old boy’s network where he seemingly protected and advanced the causes of his personal friends. One of the major scandals during his tenure was how he provided a recommendation and maintained the grantsmanship standing within the NIMH of a researcher who had repeatedly broken academic and publishing norms (http://bit.ly/2ec5C8J). Dr. Insel’s conduct was enough for Senator Grassley to get involved and request all of the relevant information concerning the relationship between the involved parties.

It is unfortunate that Dr. Insel’s directorship didn’t involve consensus building but rather went with his own way of thinking in a rather undiplomatic manner.  He gained the scorn of many members within the psychiatric profession by undermining the diagnostic criteria of the profession when many of these had been propelled by members of his own Institute. Although his claims bore some truth, he tried to implement a new diagnostic venture based on biological markers for which he had illusory hopes but no concrete proofs.  Funding for clinical trials during his tenure plummeted and grant applications were less likely to be funded unless they included key words such as “biomarkers” and “individualized medicine”. It is unsurprising to hear the reverberations of the research community that, “Staking all your money on one bet, as the institute did under Dr. Insel, has consequences” (http://nyti.ms/2f1N8XA). Indeed, instead of moving science forwards, his point of views created stagnation.

My own particular regret of Dr. Insel’s tenure came from my own research and personal interest in autism.  The Interagency Autism Coordinating Committee (IACC) was established in 2000 as part of the Children’s Health Act. It was reauthorized and chartered as a federal advisory committee in 2006, 2011, and 2014.  This was the opportunity to dictate policy and provide some needed direction into ongoing research priorities. Within the NIMH there were many individuals with ample knowledge on autism, including some who had directed the field trials by which the Diagnostic and Statistical Manual classified autism. Instead of appointing a knowledgeable individual, Dr. Insel decided to throw the public spotlight upon himself.  In essence, with his decision we had a glorified animal psychiatrist with benchtop laboratory experience taking over the reign of a committee dictating research policy on a human condition for which he had little or no experience.  Dr. Insel’s lack of knowledge was proven in the initial directives drafted by IACC. The same proved that there was an egregious lack of representation and knowledge (e.g., confusing imaging with neuropathology) from many research perspectives important to autism.  In the end NIMH’s budget became dangerously tilted towards funding research on genetic and animal models all of which had no possibility of making a difference in patients’ lives.

Dr. Insel’s legacy within the NIMH has been one where, for the longest period of time, there has been little relevant research adding to our basic knowledge of autism. All genetic research articles seemingly end with the same conclusion that autism is not a Mendelian trait but rather a multifactorial or complex condition where an interplay of both genetics and environmental factors are apparently at play.  Similarly, a recent article indicates that most studies on animal models are underpowered and statistically flawed. For the VPA animal model of autism about 91% of them have reported invalid findings (see: Stanley E Lazic and Laurent Essioux: Improving basic and translational science by accounting for litter-to-litter variation in animal models. BMC Neuroscience 2013, 14:37 or the following link http://www.biomedcentral.com/1471-2202/14/37/abstract )

I hope that the new Director and members IACC can redirect the course of the ship and try to make a difference in patients’ lives through research. I know John Robison, one of its members, is presently trying to make his voice and this point of view heard. We can’t wait another 13 years of inaction and waste hundreds of million of dollars in order to obtain nothing,- our children and patients deserve better, they need our help now.

9 responses to “Tom Insel and the Interagency Autism Coordinating Committee

  1. “In the end NIMH’s budget became dangerously tilted towards funding research on genetic and animal models all of which had no possibility of making a difference in patients’ lives.”

    But did have possibility of giving rationale for profitable drug treatments?

    I will take seriously the “animal models” of autism once I see animals doing echolalia and failing the Sally-Ann test relative to controls.

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  2. you forgot to mention that Insel also approved studies involving chelation, in spite of the lack of evidence of autism being the result of heavy metal toxicity or vaccines. He was also either a neurodiversity lover or someone who appointed anti-cure people who did not believe that autism was a pathology to the IACC including John Elder Robison.

    As far as the genetic basis of autism, it is unlikely that most autism results from Mendelian inheritance, but rather is a result of many different conditions involving many different genes and causes. A lot of it seems to be caused by multiple de novo mutations based on the research of Jonathan Sebat, Daniel Geschwind and others. I’ll defer to Roger Kulp about knowledge of some metabolic or mitochondrial causes of autism. It would be nice if we could find some easy answers for autism, but until technology succeeds in being able to see things better in a living human brain and other things, I suspect there will be no easy answers

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  3. There are no easy answers.As I have often said,I believe what we diagnose as autism is only a feature of many different disorders,with many different causes.But I do believe,most autism can be divided into two broad categories,either damage from drugs and other toxic chemicals children are exposed to in the womb,or in the first year of life.Epigenetic changes,like Jill Escher writes about would also fit into this category,and countless different genetic and inherited diseases,many of which were not to to exist,or not known to cause neurodevelopmental disease,twenty years ago.As someone who has been following Paul Whiteley’s blog,and social media feeds for years,I am extremely aware of all of the different “new” congenital causes of autism that have been discovered.Likewise,I suspect the list of drugs and chemicals that babies might be exposed to,to cause autism,is much longer than we could possibly imagine.

    I think a big part of the problem is too many parents,and families,are just sitting back waiting for science to find a simple cause for all autism.As Johnathan says,things are not that easy.Parents need to be much more activist in finding the cause of their children’s problems.Grandmothers,and great grandmothers,need to be questioned about everything the put into their bodies while pregnant, what kind of industrial or agricultural chemicals they were exposed to,etc.

    Parents also need to find doctors willing to perform as many metabolic,immune,and genetic tests as possible on their children.Follow the research,show your child’s doctor the latest PubMed abstracts,and journal articles.It may take years of testing to find everything that is going on,but you need to keep at it.The more severe or the more complex cases,like mine,often have multiple causes.Whole exome sequencing,like I had,or even whole genome sequencing,is very important,and can sometimes reveal underlying genetic disorders never seen before,which I suspect is the case with me,but I am still waiting for more tests and validation.

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    • I see your point. If we kept on doing genetic sequencing only for cancer instead of trying to fix it, we would go nowhere. Once we deal with it then we can figure out how to eliminate the predisposition. There should be more research into environmental causes and ways to reverse the disorder instead of looking for this gene and that. Not to say genetic research should cease, but there already are many private projects going on doing that for us, and them sharing all their data is valuable too. Like in a chess game, we should have each piece rather than filling the board with only bishops.

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      • I wish to add, some of these numerous genes they have found aren’t directly the cause of autism but those who carry them yet do not display autism may have heightened anxiety and learning disorders. These are still issues I am puzzled with. Maybe it is a pipe dream but I hope we can someday eliminate the predisposition altogether or more realistically trim it down in the far far future centuries from now, and that goes for all predispositions for any disease ideally.

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      • “some of these numerous genes they have found aren’t directly the cause of autism…”

        Relevant to that is the following paragraph in Chapter 7 of my book (re which you need first to grasp that autism is a syndrome, i.e. an observational fact of tendency of certain characteristics to co-occur in a particular person):

        “A third complication is what we might call “pseudo autism genes” (and again also including the non-coding DNA). As follows. Let us suppose there is a genetic variation which specifically causes increased shyness (or muteness, or mental incapacity), even though it is not an antiinnatia gene and does not tend towards causing the autism syndrome more generally. Nevertheless, the only thing that autism researchers will be able to see is that that genetic difference is associated with their “diagnosis” of autism. And they would not know that that association is only because a person being more shy (or mute or mentally incapacitated) is more likely to be “diagnosed” as autistic as a result of their shyness (/etc.) and hence “diagnosed” as a result of that gene, even though it is not at all associated with increased antiinnatia or causing actual autism (per se rather than “diagnosis” as autistic).”

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  4. They should learn something from alzheimer research. They are committed to understanding the neuropathology and causes and they have made huge strides. They at least have drugs designed to treat the disorder’s symptoms. To think that right now if they hadn’t wasted 13 years, quality of life would have been so much better for autism. Why the obsession with gene sequencing? Why is everyone doing it?

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    • Genetic and molecular biology research commands mega grants worth a lot of money to investigators and universities (indirects paying for inflated overheads). It pains me that Federal government not only has allowed this to occur but also given priase to individuals, like Tom Insel, who have promoted it. Now with the new director of NIMH in the pocket of Precision Medicine, things are likely to get worse.

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      • Indeed as I said in my book (hopefully going public next month):

        “Certain sectors of autism research have as their greatest preoccupation the finding out of “what has gone wrong” to cause the “disorder” which is autism/ASD/ Aspergers. From the perspective of a career-cautious researcher, it makes a lot of sense to try to blame a gene or a virus for “what has gone wrong”, because genes and viruses cannot get angry at you for blaming them and cannot start legal action for libel compensation. By contrast if you blame some product put in peoples’ mouths, then the makers and marketers of that product might indeed get angry at you and start legal action and other bother against you. So there’s a very important principle in medical research that it’s far better if you can blame a gene or virus.

        Indeed it gets much better. If you can blame one or more genes, not only can those genes not sue you but you can then patent everything about them and the tests to detect them and ways to change them and patented drugs to block them, and thereby make a recurring income-stream fortune of trillions of dollars. Not to mention all the research jobs created in the process.”

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