Kennedy Promises Studies Using Private Health Data to Identify Factors That May Cause Autism
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Kennedy promises exhaustive studies to identify any environmental factors that may cause autismKennedy promises exhaustive studies to identify any environmental factors that may cause autism:
NIH autism study will pull from private medical recordsHealth secretary Robert F. Kennedy Jr. warned that children in the U.S. are being diagnosed with autism at an "alarming rate," promising on Wednesday to conduct exhaustive studies to identify any environmental factors that may cause the developmental disorder.
His call comes the day after the Centers for Disease Control and Prevention released a report that found an estimated 1 in 31 U.S. children have autism, a marked increase from 2020.
Autism experts applaud efforts to further understand the condition, but say the number of reported cases began to balloon as the definition of the condition expanded to include mild cases.
"Autism destroys families," Kennedy said. "More importantly, it destroys our greatest resource, which is our children. These are children who should not be suffering like this."
Kennedy described autism as a "preventable disease," although researchers and scientists have identified genetic factors that are associated with it. Autism is not considered a disease, but a complex disorder that affects the brain. Cases range widely in severity, with symptoms that can include delays in language, learning, and social or emotional skills. Some autistic traits can go unnoticed well into adulthood.
Those who have spent decades researching autism have found no single cause. Besides genetics, scientists have identified various possible factors, including the age of a child's father, the mother's weight, and whether she had diabetes or was exposed to certain chemicals.
[...] The Autism Science Foundation said Kennedy's emphasis on environmental factors contradicted the findings in the CDC's report.
"This report is the most convincing evidence yet that changes in factors like access to services and de-stigmatization of (autism spectrum disorders) are leading to the increases in prevalence," said Autism Science Foundation Chief Science Officer Dr. Alycia Halladay.
NIH autism study will pull from private medical records:
The National Institutes of Health will begin collecting Americans' private health records as part of Health and Human Services Secretary Robert F. Kennedy Jr.'s controversial plan to discover a cause and a cure for autism. NIH Director Jay Bhattacharya told a panel of experts about the plan this week.
The NIH plans to gather information from a wide range of private sources, including pharmacy chains, hospitals and wearable devices with health sensors, like smartwatches.
"The idea of the platform is that the existing data resources are often fragmented and difficult to obtain. The NIH itself will often pay multiple times for the same data resource," Bhattacharya told the panel, according to The Guardian. "Even data resources that are within the federal government are difficult to obtain."
[...] Sara Geoghegan, senior counsel at the Electronic Privacy Information Center, said the decision to gather private medical data in this way was a shocking departure from the norm and questioned how NIH planned to protect the information it gained.
"I am almost mind blown here," Geoghegan said.
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