A group of autism researchers and advocates announced Tuesday the formation of an independent advisory body that will develop a scientific agenda for the autism community. They hope to act as a bulwark against a federal committee bearing a similar name and its new members who believe that childhood vaccines can cause autism, despite the lack of evidence for such a link.
The Independent Autism Coordinating Committee (I-ACC) will hold its first meeting on March 19 — the same day that the newly-reformed federal body, the Interagency Autism Coordinating Committee (IACC), will meet for its first publicly-announced meeting. The independent body’s leaders see their group and future actions as a direct rebuke of health secretary Robert F. Kennedy Jr. and his decision to refashion the federal body with members who align with his views on autism and vaccines, instead of preeminent researchers and autistic self-advocates.
“We don’t believe that the new federal IACC is going to pursue the kinds of areas and priorities that the mainstream scientific community feels are important at this point,” said Helen Tager-Flusberg, a member of the new group and director of the Center for Autism Research Excellence at Boston University.
The independent group includes many former members of the federal body, such as Joshua Gordon, former National Institute of Mental Health director, and Alison Singer, president of the Autism Science Foundation. The 12 members are mostly researchers, a contrast with the federal body, whose members mostly focus on advocacy.
Tager-Flusberg says the group will not rehash every matter the federal body considers, but they will primarily determine which topics within autism research deserve the most attention, with an eye on informing the decisions of non-governmental funders. The group will continue to meet whenever the federal body meets in an attempt to halt any misinformation that emerges from the meeting. If, for example, IACC plans to discuss vaccines and autism, the researchers will host a meeting and discuss the existing evidence on the topic on the same day.
When asked whether the similar names, meeting dates, and purported goals could sow confusion in the autism community about who to trust, she responded, “Are you going to pay attention to the group that contains not a single reputable scientist, or anyone experienced with conducting research? Or are you going to look at a group of people, which includes the people who have all the credentials that you would expect from the membership of the IACC?”
The Department of Health and Human Services has no plans to change the federal body’s proceedings in response to their independent counterpart. “The federal IACC will continue to fulfill President Trump’s directive to bring autism research to the 21st century and support breakthroughs in autism diagnosis, treatment, and prevention,” said Andrew Nixon, an HHS spokesperson.
This is not the first group of researchers and advocates who have formed their own advisory group as a bid to push back against misinformation from the federal government. The Vaccine Integrity Project launched last year as a means for assessing and disseminating the best available evidence on vaccines.
Source: www.statnews.com
