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Concerns Raised About Overlapping Autism Research

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Most federally-funded autism research is “potentially duplicative,” according to a new government report that finds coordination and oversight lacking.

No less than 12 federal agencies allocated $1.4 billion for autism research, awareness projects, trainings and other related activities between 2008 and 2012. In many cases, however, the efforts of these agencies may have overlapped.

In a report released this week, the U.S. Government Accountability Office found that 84 percent of autism research projects during the four-year period had the potential to be redundant.

The finding was based on a review of how projects aligned with goals identified in a strategic plan outlining priorities for federal autism research. The plan is produced annually by the Interagency Autism Coordinating Committee, or IACC, a federal advisory panel comprised of government officials and members of the autism community.

In one case, the GAO found that five agencies funded 20 projects all focusing on improving dissemination and implementation of interventions and services in diverse community settings. Collectively, the projects cost over $15 million.

Separately, investigators said that four agencies funded projects to develop interventions to improve the quality of life or health outcomes of adults on the spectrum.

While acknowledging that seemingly-overlapping studies can be beneficial and appropriate in some cases, the GAO warned in its 94-page report that “in some instances, funding similar research may lead to unnecessary duplication.”

At the same time, the investigative arm of Congress also found that there’s little oversight to ensure that waste does not occur. The Combatting Autism Act tasks the IACC with monitoring all federal autism activities, but such efforts from the committee were “limited,” the GAO report said.

Only three government agencies regularly used the IACC’s strategic plan. And, the GAO found that outside of participation in the IACC, agencies rarely coordinated their work.

The GAO recommended in its report that agencies enhance their coordination efforts and make other improvements.

Most agencies agreed that they could do more to work together, but disputed that any unreasonable duplication is occurring.

“The IACC objectives are broad and projects classified under them cannot be fairly judged ‘potentially duplicative’ without more substantial exposition,” wrote Michael Yudin from the U.S. Department of Education in response to the GAO. “Research projects with similar descriptors or titles may have different subject populations, sample sizes, methodologies and outcome measures and may explore different mechanisms or hypotheses.”

Sharing similar sentiments, a response submitted by Jim Esquea at the U.S. Department of Health and Human Services indicated that “it is important to recognize the difference between appropriately addressing complex problems using multiple strategies and funding redundant or duplicative projects.”

“We do not believe that research is necessarily duplicative if two agencies fund the same broad objective in the IACC strategic plan,” Esquea wrote.

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Comments (9 Responses)

  1. Sandra Barwick says:

    How unscientific science is! It would be good if a democratic element was introduced – a site where ASDs and parents of ASDs could nominate areas which they feel are important for research.
    They urgently need to work out the different sub-groups by signs and symptoms. Without that their results can confuse rather than elucidate.
    And I don’t think any research has yet examined iron levels in ASDs alongside markers for inflammation, for example – a very basic piece of work, not that expensive to do, surely? If there is heightened incidence of anemia of inflammation in a sub-section of ASDs then that would explain a lot about behaviour.
    So far an awful lot of scientists have had their mortgages paid for years with no discernible improvement for the children and adults they are supposed to be serving.

  2. Sarah says:

    We don’t need anymore eye gazing studies. We do need more studies on the link between microglial dysfunction, environmental toxins and impacts to synaptic pruning. We need more studies on mitochondrial dysfunction and autism and the role of the immune system in autism. We also need more studies on why some children regressed after getting vaccines- to my knowledge the CDC has never done any follow up studies on those children who the HHS agreed suffered severe adverse reaction to vaccines leading to encephalopathy- what caused the reaction in these children?? Immune hypersensitivity?

  3. Anne McElroy Dachel says:

    This is a report card on IACC. I’m still waiting for the committee charged with coordinating autism efforts in the U.S. to do anything that adds to our understanding of autism or improves the life of a single autistic child. In truth, IACC was created to conduct autism busywork. They pretend to care about autism while wasting time and money.

    “12 federal agencies allocated $1.4 billion for autism research. . . ” Seriously? And not one dime for a simple vaccinated/unvaccinated study that could settle the most heated controversy in pediatric medicine: Do vaccines cause autism?
    Anne Dachel, Media editor: Age of Autism

  4. ChemE says:

    Somebody needs to check the impact of the government pulsing 750,000 watts (enough to power 400 homes) of low frequency radiation through the atmosphere and through biology 24/7 with government and military Doppler radars, many of which overlap. I cannot find one long term study on this. I have been plotting algae blooms and fish kills in Florida for 10 months and it appears >80% are clustered within 50 miles of dual pol Doppler radar towers. If this is due to an increase in ionizing radiation from the atmosphere around the towers it is no wonder the bats, bees, frogs fish, starfish are disappearing and some mutations/autism is increasing. South Korea has the highest concentration of Dopplers and the highest autism rate (1/38).

  5. Whitney says:

    Research smart most of these projects I agree with. I think the redundancy occurs when 5 agencies are doing the same research with different teams and get the same result. I seen some wasteful research projects when basic common sense states when children reach the teenager stage they become rebellious that even basic parent manuals. That the other thing research should improve people lives and not fleece the tax payer and governments . Studies on Transitional Programs to have Autistics be productive would be nice. It is reason I am against curing Autism to much emphasize on that not enough how to live with autism. That is what the children really need is Transitional programs not the cure which 30 years in the future.

  6. brian says:

    Actually, autism researchers have made enormous progress. Just this week, two papers (one from UCLA, the other from UC San Francisco) published in Cell show that genes linked to the development of autism “have unique expression patterns in different brain regions,” “are active near the midpoint in fetal development,” and “affect specific functions, such as the connections between brain regions that are essential to many human-specific behaviors, like speech and language.” This adds to the already-overwhelming evidence that obviates any need for your proposed and problematic vaccinated-unvaccinated study, Anne: the people who study autism moved on long ago, since the evidence doesn’t support the views that you formed by reading the internet years ago.

  7. VMGillen says:

    Let’s see, if 1:88, then how many post-grad students are related to a person w/ASD? And anyone with a pulse in academe knows a proposal with just the term ASD in the title is near-guaranteed funding and swift IRB approval.

    Yeah, someone needs to seriously take a look at this. There’s a lot of plain old garbage, and duplicative garbage at that, floating around.

  8. Rayne says:

    Warning, this comment is purely sarcastic.

    Well lets just invest in a caucus, investigational hearing and ask people who really don’t listen to the parents to act in the best interests of no one.

  9. Cinder McDonald says:

    This is a prime example of where inclusion could have made a huge difference. Hiring self-advocates would have gone a long way towards helping to eliminate duplication. A number of us already track many of those studies on our own time, and communicate with each other via social networks.

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