Concerns About Overlapping ASD Research Persist

August 5, 2016

Source: disabilityscoop.com

By: Shaun Heasley

Nearly three years after investigators warned that most federally-funded autism research is “potentially duplicative,” a new report finds some improvement but suggests that concerns remain.

The U.S. Government Accountability Office raised alarm bells in 2013 with a report finding that 84 percent of autism research projects funded by the federal government between 2008 and 2012 might be redundant.

At the time, government investigators called for significantly more coordination across the dozen or more agencies that collectively doled out $1.4 billion for autism research, awareness projects, training and other activities over the four-year period.

Now, GAO says that federal agencies have made some progress. In a report released this summer, Congress’ investigative arm noted that U.S. Secretary of Health and Human Services Sylvia Mathews Burwell recently designated an autism coordinator as required under the Autism Collaboration, Accountability, Research, Education and Support, or Autism CARES, Act. One of the coordinator’s duties is to ensure that federal autism activities are not unnecessarily duplicative.

Meanwhile, a forthcoming update to the strategic plan developed by the Interagency Autism Coordinating Committee, or IACC — a federal advisory panel comprised of government officials and members of the autism community — is supposed to include recommendations to prevent overlapping research. And, various federal agencies told GAO investigators that they are working to improve their monitoring of other departments’ research.

Nonetheless, GAO indicated that work remains to ensure that taxpayer dollars allocated for autism are used efficiently.

“We acknowledge the steps taken by the agencies to respond to our November 2013 recommendation, as well as in response to the Autism CARES Act; however, continued action is needed to develop these initial steps into methods for identifying and monitoring federal autism research that are consistently applied,” the latest GAO report states. “While we are not making additional recommendations, we believe that our 2013 recommendations remain valid.”

In written responses to GAO’s findings, both the U.S. Departments of Education and Health and Human Services disputed the notion that duplicate research is a problem.

“Research projects with similar descriptors or titles may have different subject populations, sample sizes, methodologies and outcomes measured and may explore different mechanisms or hypotheses,” wrote Michael Yudin in a response to GAO written before he left his role as the Education Department’s assistant secretary for special education and rehabilitative services.

“We note also that growth of the scientific knowledge base for any subject is dependent upon multiple studies investigating similar research questions,” Yudin indicated.