29-04-2025
Nurse assistant with autism pens cease-and-desist to RFK Jr. over recent proposals
FARMINGTON, N.Y. (WROC) — A proposed national autism registry by the Department of Health and Human Services sparked opposition nationwide, including nearby in Farmington.
Days ago, the department contradicted that announcement describing different plans to study cases of autism. One certified nursing assistant told News 8 he feels any mass collection of confidential records has the potential to violate disability and privacy acts.
Ethan Payne is a certified nursing assistant who also has autism. He said when he heard nearly $50 million was set to be invested by the Department of Health and Human Services for collecting data to study cases of autism, he immediately was concerned about how it would uphold the Americans with Disabilities Act, as well as HIPPA, and the potential of discriminatory practices.
'We have a feeling that even though they're saying it's consensual in a sense, we have a feeling it's not going to be treated as such, and it's not going to get the proper disclosures and the proper sense,' Payne said.
The Department of Health and Human Services denies an autism registry is being created, despite what its director announced days prior. An official did not clarify to CBS News if the director misspoke, or if the plan was reversed. The Department did say the data platform it will use to study causes of autism will use existing datasets. Payne said no matter what is used, it cannot have a 'quick fix' approach.
'It's a very complex developmental disorder,' Payne said. 'It's a wide spectrum. You can't just say that we're going to find effective treatments in a certain time, this has taken years to even understand.'
The National Institute of Health told CBS News it still plans to explore partnerships with other federal agencies including the Centers for Medicare and Medicaid Services. An official said the dataset will maintain the highest standard of security and patient privacy — similar to the agency's cancer database. Saying, 'these efforts are not about tracking individuals.'
With what Payne calls back and forth at the national level, Payne is writing to United States Secretary of Health and Human Services Robert F. Kennedy Jr. himself with a cease and desist.
'This is an issue that needs to be addressed, essentially,' Payne said. 'They say it's going to be fairly transparent and all that. But we haven't seen that yet from their face.'
The National Institue of Health Director said the anticipated grant funding the autism research should be awarded by September.
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