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"Robert F. Kennedy Jr." by Gage Skidmore via Wikimedia Commons licensed under CC by SA 3.0
Autism researchers and advocates are pushing back against the creation of an autism database – meant to track the health of autistic people in a major research study – and pointing to the ways such databases could be misused.
While the US Department of Health and Human Services (HHS) denies it’s a registry, the agency did confirm a sweeping database of autistic people will power a $50m study on autism. The health secretary, Robert F Kennedy Jr, said last week that he plans to announce results from the study within months.
A petition against the registry gained thousands of signatures in a single day, jumping from 2,500 to nearly 35,000 signatures within 24 hours.
“I’m a quiet person who likes to just be in the background,” said first-time petition creator Ryan Smith, a parent of two neurodiverse children living in Idaho. He also didn’t want to make himself a target.
“But I feel really, really, really strongly about this, and I have to...