Autistic advocates fear that Health and Human Services Secretary Robert F. Kennedy Jr.’s proposal to gather health information in his effort to find the root causes of autism will risk their security and infringe on their rights.
“I mean, are they having our children’s data without our permission?” Tracey Thompson, who lives in Brevard County, Florida and who has two high-support needs autistic sons who are in and 22, told The Independent. “It seems something I should be able to sign up for, and that’s something that they just take.”
Her comments come after National Institutes of Health Director Jay Bhattacharya said Monday that the agency would gather health information of people diagnosed with autism spectrum disorder, CBS News first reported. The proposal includes taking health information from both public and private groups for its study. It follows Kennedy’s push to identify a cause of autism and recent quotes about people with the condition.
Kennedy has repeatedly said Americans used to not regularly see autistic people who required around-the-clock care or who had higher support needs, which Thompson disputes.
“He was a very privileged, rich person in boarding school,” she said. “He did not see kids like mine. He did not have that experience.”
Autistic advocates fear that a data-gathering project by Health and Human Services Secretary Robert F. Kennedy Jr. could lead to improper use of their health information. (AP)
President Donald Trump tasked the secretary with finding the cause of an know what has caused the increase in diagnoses of autism, which Kennedy calls an “epidemic,” but has largely been due to improved screening of nonwhite and lower-income children.
“This new initiative will leverage large scale existing data resources, as well as resources, data resources that are available throughout the rest of the federal government, as well as in the private sector,” Bhattacharya said on Monday. “It’ll include electronic health record data, and from the private sector, and it’ll include other other claims claims records.”
The Trump administration has said in the past that it hopes to have the information by September. But Autism advocates fear that this could lead to improper use of their data.
Samantha Crane, who served two terms on the federal government’s Interagency Autism Coordinating Committee, told The Independent that the government is able to do this because the Health Insurance Portability and Accountability Act. The law that protects the confidentiality of medical records, has a major exception for public health monitoring and research.
“And unfortunately, I think you’d probably be able to establish that there’s still protections to ensure that those records are used in a way that protects confidentiality,” Crane, who is autistic, said.
Bhattacharya said in his presentation that he wanted to “integrate diverse data, enabling researchers to examine complex factors.” But Crane said that comes with real risks.
“Obviously you you can’t link those databases together without at least at some stage having all of that personally identifiable information,” she said. “If you have so much information about someone, even if you don’t have their name or Social Security tied to it, it becomes possible, theoretically, to figure out who each individual is.”
The Trump administration has said in the past that it hopes to have the information by September. But Autism advocates fear that this could lead to improper use of their data. (Getty Images for Netflix)
Kennedy has long espoused the idea that the measles, mumps and rubella vaccine can trigger autism, a claim that has repeatedly been debunked. Last week, he delivered a press conference where he said environmental factors likely play a role. He said the American government needed to examine the causes.
“These are kids who will never pay taxes. They’ll never hold a job. They’ll never play baseball. They’ll never write a poem. They’ll never go out on a date,” Kennedy said, in comments that drew quick condemnation. “Many of them will never use a toilet unassisted. And we have to recognize we are doing this to our children, and we need to put an end to it.”
The Trump administration also has had a history of mishandling data. The Department of Government Efficiency, led by Elon Musk has come under scrutiny for his attempts to comb through sensitive data in agencies like the Social Security Administration.
“We’ve definitely got our eye on that. We want answers about, like the specifics of what consent, if any measures are going to be used, and how much personally identifying information will be collected from the administration,” Zoe Quinn, director of advocacy at the Autistic Self Advocacy Network, told The Independent.
The lack of privacy concerns has already made some autistic advocates taking preventative measures. Sarah Hovit Kanna, who is autistic and has two autistic sons, runs the Positivity Spectrum and is running a free legal clinic to help families of autistic people push back.
“It’s going to keep families from wanting to disclose or get access to services for their kids, because they’re not going to want to end up on some register,” she said. “I think there’s a real fear right now in the autism community that what RFK is trying to do is somewhere along the line of eugenics, that we’re going to figure out what causes autism, and then we’re going to try to not have autistic children be born.”
Kovit Hanna said she recognized that some autistic people require more support and may have co-occuring conditions, what some parent advocates call “profound autism,” while others might not need as much support.
“I don’t think that that actually addresses what the autism community needs in its entirety, but we definitely do need to give answers to parents, but we also need to be conscientious that that money could better be served,” she said.
