Autism experts and advocates at the Department of Health and Human Services said Wednesday that it intends to create a database of Medicare and Medicaid patients recruited to support a study designed to identify the “root cause” of autism.
Robert F. Kennedy Jr.
Kennedy said in a press release that the agency “with complete transparency and accountability to withdraw the curtains to provide honest answers, families have waited too long.”
A HHS spokesman declined requests to allow agency officials to discuss the project, including how the project is implemented, how autism is defined and how the data will be able to identify its causes.
The agency said in a press release that researchers will focus on autism diagnostic trends, outcomes of medical and behavioral therapy, demographic and geography access to care and differences, and health care costs.
Scientists have identified various risk factors (most of which exist before birth) related to the development of autism traits, including more than 100 genes, believed to play a role in 60 to 80% of cases.
Experts who have spent decades studying the disease say they are concerned about patient privacy under the new plan.
"It's a "lack of clear" about how data is collected, how it is shared, how it is maintained and how we know it will be accurate."
Singh said her team was flooded with phone calls and emails from people in the autistic community, fearing that federal health officials lack transparency on how to obtain and manage their private health data.
this Experts say the database project does not include input from the autism community, but ignores good genetic links to the disease.
"We have 20 years of expert scientists who have studied this problem," Singh said. "If there is an environmental toxin, I think we'll find it."
According to HHS, the program will focus on autism diagnosis trends, over time, health outcomes of “specific medical and behavioral interventions”, access to care and financial burdens.
"Wearable devices can provide continuous reality data on sleep patterns, physical activity, stress marking, environmental exposure, etc., all of which can help researchers identify early life factors associated with autism spectrum disorders," a HHS spokesperson said in a statement.
A spokesperson did not answer questions about how wearable devices detect environmental exposures or will use them.
Using wearables to understand the idea of autism is generally a "stunning idea" according to Michael Snyder, professor of genetics and director of the Stanford Center for Medical Genome and Personalized Medicine.
The challenge, he said, is to use wearable devices to reach the causes of autism, ideally, participants must wear them before diagnosis, and also require a large sample size.
Snyder conducted a small pilot study through the wearable device invented by his team that measures environmental exposure as well as sleep and activity levels to see if there is a connection to autism.
Currently, wearable devices are only used to remind teachers and caregivers when autistic people are overwhelmed and overstimulated and require rest, Singh said.
“In the deep autistic community, we are using wearables to issue early warnings to avoid crashes or possible self-injury,” she said. “This allows someone to intervene.”
Autism and its possible causes have been Kennedy’s obsession for decades, from his false claims to link measles, mumps and rubella (MMR) vaccines to disease, a link that has been widely debunked by research in multiple countries. Experts predict Kennedy will revisit his mission as health secretary - last month he announced a study to be achieved when identifying the root cause in September.
Kennedy said in April the Centers for Disease Control and Prevention released a report that found an increase in autism rates in children in the United States, which Kennedy said will study “environmental exposures” including molds, food additives, pesticides and drugs.
Recently, federal health officials have been forced to back off to develop a national registry for people with autism following a rebound in the autism community.
The Autism Science Foundation said the registry will include data from private medical records, autism advocacy group warned that the data could invade people’s privacy and cause people with autism to avoid or deny medical services “because of concerns that their data is allowed without permission.”
It is unclear how new programs will also rely on medical records.
"None of us consulted about this. In the case of previous administrations (Democrats and Republicans), we have more connections with HHS and are more involved in major projects involving autism," said Zoe Gross, director of advocacy for Autism.
"If we can give an opinion on this, we will come up with more clarity and different research aids," Gross said.