By Dr. Mary Catherine DeSoto
This is in the context of broad disapproval and frustration within the autism community over NIH funding priorities. The general level of concern was documented by a 2008 letter signed by eleven major autism organizations (including Autism Speaks, Autism Research Institute, Safeminds, Autism Society of America, Generation Rescue, National Autism Association). The letter stated, "Research on the environment, gene-environment interaction and treatment are underrepresented...." There seems to be great frustration among these groups and others that regardless of acts of Congress, directives or calls for serious investigation into how the environment triggers persons predisposed to autism, there is too much research focused on genetics to the detriment of studies of environmental triggers.
The Inter-Agency Autism Committee (IACC) developed a plan that included serious research spending on investigating autism's environmental causes. Their strategic plan was published. In 2009 there was a program to increase federal spending (the "ARRA" funds related to the need to stimulate the economy out of recession and into recovery) and NIH announced a multitude of new funding opportunities as a result. There was a long "Research Funding Announcement" (RFA) which is a call for scientists to submit proposals to spend available grant money on their research interests.
Persons who get their PhDs in a scientific field learn how to get grants to support their research interests. One thing that is often done is to send an initial, short letter of inquiry, to get some feedback on how to pitch a full application for grant monies. Full applications are big long documents, sometimes 100 pages or more.
Like many researchers employed at a university, I receive emails from my university's grant office calling my attention to new funding opportunities that might be a good match, and I was encouraged to consider the ARRA grant opportunities from NIH. I noted there were a lot of RFA's (the full document was 181 pages!). I searched for calls with the word Autism in the announcement: there were ten. Eight clearly did not match the environmental intent of the strategic plan; they were about developing registries or comparing treatments. One was about gene and environment interactions but mentioned determining specific genetic variations and seemed to require genotyping. Only one mentioned the Interagency Autism Coordinating Committee (IACC) Strategic Plan and measuring biomarkers. This one looked good.
It was the only RFA on the NIH website posted (out of 181 pages of short postings) that mentioned the IACC strategic plan or seemed to be a fit for measures of Autism's environmental triggers or exposures. The NIH document included available grant opportunities for all branches of NIH (including NIEH, NIMH etc). I then looked up the IACC strategic plan and read it carefully. It seemed like a great fit. The RFA I inquired about read:
04-MH-101* Autism: Addressing the challenge. Target research gap areas identified by the Inter-Agency Autism Coordinating Committee (IACC) Strategic Plan for Autism Spectrum Disorder Research, including biomarkers, novel interventions, and new tools for screening, among other topics. Contact: Dr. Ann E. Wagner, 301-443-5944, email@example.com [Note: Ann E Wagner is currently a branch chief at NIMH, the part of NIH directly that houses the IACC]
My plan was to measure toxic levels in the environment, and then directly measure the levels in children with autism and controls (biomarkers of), and correlate levels to symptoms. In this way, I could establish norms for measured biomarkers based on measured environmental exposures among typical children, and then compare those with ASD to the norms. Possibly (this is what I hoped to check), if levels were higher than expected based on similar exposure in autistic children, this would point towards vulnerability to exposure and efforts could be made to limit toxic exposures in vulnerable children. It was a good match to the strategic intent of the IACC plan because I planned to measure biomarkers of exposure, which could lead to a novel intervention. I took the time to look at the IACC strategic plan (since it was directly mentioned in the funding announcement I was interested in pursuing). I located it and read it carefully to see if my aims were congruent. They were. To wit, the IACC website strategic plan on USA's Health and Human Services website (HHS.gov) included these key statements:
Initiate studies on at least five environmental factors identified in the recommendations from the 2007 IOM report.
Identify and standardize at least three measures for identifying markers of environmental exposures.
Determine the effect of at least five environmental factors on risk for subtypes of ASD.
From my read, out of the 181 page NIH document and hundreds of their RFA's, this was quite clearly the only possible match for what I wanted to do, which was to measure environmental exposure both environmentally and via biomarkers, among children with and without autism, and compare to symptom expression which could suggest strategies for intervention. However, I also had a specific methodological question about the possibility of including initial testing of a brand new technology being developed by some physicists to measure toxins. This prompted me to send a short inquiry via email. This is what I wrote.
> -----Original Message-----
> From: Cathy DeSoto [mailto:firstname.lastname@example.org]
> Sent: Thursday, March 19, 2009 5:25 PM
> To: Wagner, Ann (NIH/NIMH) [E]; Rob Hitlan
> Subject: 04-MH-101 Autism: Addressing the challenge
> We are interested in applying for the grant referred to below and will
> be submitting an application in early April. I have read the Interagency
> autism committee strategic plan and believe our aims would be a good match.
> The overall goal will be to investigate environmental risk factors,
> primarily via sources of pollution/toxic emissions from the perspective
> of genetic susceptibility for toxins having neurological effects,
> although we do not intend to measure genotype in anyway. We intend to
> propose direct measures of toxins among those with an ASD and controls
> (blood, hair or both) as well as measures of toxins in the environment
> relating to prevalence patterns, all of which will be elaborated upon in
> the actual proposal, of course.
> My reason for writing is to inquire if it would be appropriate to
> include a relatively small portion of the budget for testing of new
> spectroscopy instrumentation for the purpose of quantifying
> environmental toxins. Because we will already be proposing measures of
> toxins (for example soil samples via a grid layout in pockets of high
> prevalence) and because the new spectroscopy technique would be expected
> to allow easier and more highly accurate measures than is currently
> available (which would be explained in the full proposal), it would be a
> cost effective way to validate the method. Once validates, it is
> possible the new technique would be highly useful in relating toxins to
> health outcomes such as autism.