VERIFY | What we know about RFK Jr.’s ‘autism registry’

CHARLOTTE, N.C. — The number of children diagnosed with autism in the United States is rising, according to a new report from the Centers for Disease Control and Prevention.

This has prompted Health and Human Services Secretary Robert F. Kennedy Jr. to announce a federal initiative to study the disorder and its potential environmental causes.

Kennedy said the National Institutes of Health will support a new round of studies focused on identifying what he called environmental contributors to autism. There are questions surrounding how this data will be collected and stored.

What is the “autism registry” and what personal information could it have?

Kennedy said studies could come in the next couple of weeks to identify environmental factors that cause autism.

“The issue that we know is genes don’t cause epidemics,” Kennedy said in a recent press conference. “You need an environmental toxin. We’re going to look at all the potential culprits. We’re going to look at mold. We’re going to look at food additives. We’re going to look at pesticides. We’re going to look at air and water and medicines. We’re going to look at ultrasound.”

Kennedy’s remarks follow the CDC’s latest findings, which show that 1 in 31 children in the U.S. are diagnosed with autism spectrum disorder by their eighth birthday. However, the report did not pinpoint a definitive cause.

Dr. Zachary Warren, one of the report’s authors, said the science points to a combination of genetic and environmental factors.

“We have data that a certain percentage of some types of autism can be clearly explained by genetic differences,” Warren said. “We have other evidence suggesting that actually it’s the complex interplay of environmental factors.”

Officials from the National Institutes of Health said the agency is building a new national disease registry, which would compile medical data from various databases to support autism research. But a spokesperson for the Department of Health and Human Services said it has no current plans to create a formal “autism registry.”

The lack of clarity has raised concerns among privacy advocates and disability rights organizations. The Autistic Self Advocacy Network released a statement expressing cautious concern over the ambiguity of the registry.

“At present, so little information has been released about this plan that basic questions about how it will work remain unanswered,” the organization said. However, it added that if personally identifiable information is removed, the practice of data sharing for research is standard, and currently, there is no indication the effort would be used to track individuals.

As federal agencies sort out their roles in the new initiative, Kennedy said he plans to direct more resources toward real-time data sharing and investigation into environmental exposures and external influences on autism rates.

Contact Meghan Bragg at mbragg@wcnc.com and follow her on Facebook, X and Instagram.