Scientists create autism panel, citing RFK Jr.'s politicization of research - The Boston Globe

A group of prominent scientists launched an independent autism advisory panel Tuesday over fears that Health Secretary Robert F. Kennedy Jr. has politicized the key federal autism advisory board he oversees.

The shadow committee** will focus on developing a coordinated scientific agenda for autism research and will function as a counterweight to the advisory board Kennedy reshaped in January by appointing new members. Many of those members have echoed his controversial views, including promoting debunked claims linking vaccines to autism **and advocating for unproven treatments.

The new independent group will do more than speak out against misinformation, Alison Singer, president of the Autism Science Foundation and member of the group, said in a statement Tuesday. The group will create a research agenda that reflects the progress and promise of autism science and report annually on key research advances, including basic research on genes and cells, environmental causes, early detection, therapeutics and services.

The new panel, to be called the Independent Autism Coordinating Committee, includes experienced scientists and advocates who have funded and conducted autism research for many decades, including** two past directors of the National Institute of Mental Health, Joshua Gordon and Tom Insel. Also on the panel is **Helen Tager-Flusberg, director of Boston University’s Center for Autism Research Excellence and a founder of a coalition of autism scientists

FEATURED VIDEO

The group is set to hold its first meeting on March 19, the same day as the federal panel.

The federal panel remade by Kennedy — the Interagency Autism Coordinating Committee — was established in 2000 to develop strategic plans for autism research and services. It was also tasked with coordinating** **collaboration among advocates, people with autism, families, scientists, and federal agencies.

Kennedy appointed a new slate of members,** **which Singer said was an “unprecedented overhaul” with a “striking absence of scientific expertise.”

The new members of the federal panel do not represent the breadth of the autism community, “but rather represent a tiny subset of people who, despite all evidence to the contrary, still insist that vaccines cause autism,” Singer said.

In a news release announcing the new members, the Department of Health and Human Services said the “appointments reflect the commitment of Secretary Robert F. Kennedy Jr. to support breakthrough innovations in autism research, diagnosis, treatment, and prevention by bringing the nation’s understanding of and policies concerning autism into alignment with gold-standard science.”

Advertisement

HHS** **spokesman Andrew Nixon said in a statement Tuesday that the Kennedy-appointed panel “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.”

The average American has most probably never heard of the federal autism advisory committee. “But that’s what makes it dangerous,” Singer said. If a government committee announces that the United States should study whether vaccines cause autism, “as if we never have, that will strike fear in people, most of whom are unaware of the dozens and dozens of studies we’ve done over the past 20 years that exonerate vaccines as a cause of autism.”

That may scare new mothers and lead them to withhold lifesaving vaccines from children, Singer said.

Some HHS officials have raised questions that the new committee creates the appearance of rivalry and could cause confusion for the public.

The new autism panel is the latest example of the deepening rift in the nation’s public health infrastructure. Medical and** **public health experts are increasingly setting up shadow structures as they lose confidence in federal panels reshaped under Kennedy’s leadership.

What were once respected scientific groups that guided vaccine policy, for example, are now being supplemented - and, in some cases, bypassed - by alternative groups, such as regional state organizations that say they are no longer following some federal vaccine policies and instead are relying on recommendations from medical and professional societies, such as the American Academy of Pediatrics.

In June, Kennedy replaced the entire membership of an independent committee of experts that advises the Centers for Disease Control and Prevention on how and when to vaccinate Americans. Kennedy accused them of being too closely aligned with vaccine manufacturers. He selected new members, some of whom had histories of criticizing vaccine guidance.

Advertisement

In response, the Vaccine Integrity Project at the University of Minnesota’s Center for Infectious Disease Research and Policy was launched last year as an independent, science-based initiative. It has conducted systematic literature reviews and publicly presented data on the safety and effectiveness of vaccines for influenza, covid-19 and RSV, or respiratory syncytial virus.

The American Medical Association and the VIP are also teaming up to create a system to review vaccine safety and effectiveness, mirroring a role long played by the CDC. The groups, which will operate independently from the federal government, say their work is needed because the CDC’s vaccine review process has “effectively collapsed.”

The 12-member independent autism group includes many scientists who previously served on the federal advisory committee. In addition to Tager-Flusberg, Singer, Gordon, and Insel, members include:

• Joseph Joyce, president and chief executive of the Autism Society of America, the nation’s largest and oldest grassroots autism organization, and parent of an autistic son
• Zachary Williams, an autistic autism researcher and resident physician in psychiatry at UCLA and past chair of the International Society for Autism Research Autistic Researchers Committee
• Amy S.F. Lutz, a historian of medicine at the University of Pennsylvania, vice president of the National Council on Severe Autism and parent of a profoundly autistic son
• John Walkup, a professor of child and adolescent psychiatry at Northwestern University’s Feinberg School of Medicine and president of the American Academy of Child and Adolescent Psychiatry
• Kristin Sohl, a pediatrician and member of the American Academy of Pediatrics Council on Children with Disabilities