RFK Jr. has some very strange ideas, which are rather concerning, considering his current role in the American government. He has recently been in the news again with his thoughts on autism and those with the condition. Now he is receiving even more backlash because he wanted to obtain access to private medical records and launch an autism registry. Autism is a condition that some people are born with and is not an illness, according to the NHS.
However, RFK Jr. has claimed that it is a preventable disease and claims there is an ‘autism epidemic’. Speaking at a cabinet meeting on the 17th of April, Kennedy stated that they had “launched a massive testing and research effort that’s going to involve hundreds of scientists from around the world. In September, we will know what has caused the autism epidemic, and we’ll be able to eliminate those exposures.“
Gathering Private Records and Launching an Autism Registry
The NIH announced that it would be gathering private medical records from several commercial and federal databases, which would enable researchers to examine ‘comprehensive’ data from patients across the country. According to the director of the NIH, Dr. Jay Bhattacharya, the concept of the platform is that “existing data resources are often fragmented and difficult to obtain. The NIH itself will often pay multiple times for the same data resource.
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Even data resources that are within the federal government are difficult to obtain.” Medication information from pharmacy chains will be included, as will lab testing and genetics data from the Department of Veterans Affairs and Indian Health Service, data from smartwatches and activity trackers, and even claims from private insurers. They are also in talks with Medicaid Services in a bid to broaden access to their databases. According to the NIH director, the researchers will consist of around 10 to 20 outside groups that have been selected through the usual NIH processes.
He further stated that although the teams will have access to private data, they will not be able to download it and will be treated with utmost confidentiality. Alongside this study, the NIH also aims to launch an autism registry to track patients. According to the NIH director, the idea of real-time monitoring is to “provide a robust and secure computational data platform for chronic disease and autism research”. However, this notion has been met with considerable opposition from those with autism as well as their family members.
Uproar on Social Media
Many mothers of children born with autism have already expressed their disapproval of the idea on sites such as Twitter and Facebook. One mother was terrified by the idea, stating that “As a mother of a child with autism, I don’t approve of this. My son’s medical records should stay private. We need more funding for programs that benefit our children, not ‘studies’ that don’t help them.” Yet, Bhattacharya stated that the National Institutes of Health is planning a ‘rapid timeline’ for the study in the hopes of sharing their findings with the public as soon as possible.
Privacy advocates and disability rights organizations have also spoken out against the register, warning that it could give rise to discrimination, stigma, and the exploitation of sensitive health data. Critics contend that portraying autism as a “preventable disease” risks propagating damaging stereotypes and opening the door to policies based on eugenics rather than compassion and inclusion. Several advocacy groups, including the Autistic Self Advocacy Network, have called for the initiative to be suspended immediately. They argue that efforts should be redirected toward improving services, education, and acceptance for neurodivergent people. This would be better than treating autism as some sort of problem to be eradicated.
