On April 11, United States Secretary of Health and Human Services, Robert F. Kennedy Jr., announced a mass testing and research effort, with $50 million in funding, to find the cause of autism. Autism, also known as Autism Spectrum Disorder (ASD), is a broad range of neurological conditions that affect communication and behavior, which can range from mild to severe socialization problems. While Kennedy has put forward that the goal of the effort will be reached by September, many have disagreed with him, such as Dr. Peter Marks, who was forced to resign from the Trump administration, who claimed that Kennedy was giving people false hope because the timeline of September is far too short. There have also been other arguments against Kennedy’s plan as well, due to the idea of an ‘’autism registry’’ and Kennedy’s past with conspiracy theories on autism.
National Institute of Health director Jay Bhattacharya said the plan would involve getting medication records, private insurance claims, lab tests, and even smartwatch data of autistic people. This triggered an outcry from the autistic community about the idea of an “autism registry,” especially due to historical similarities with other places that have created registries of disabled people, such as Nazi Germany. These fears of a registry were exacerbated even further when the administration announced they would also use data from the Centers for Medicare and Medicaid services, with these fears leading to many health providers reporting an uptick in requests to remove personal information from charts. The Department of Health and Human Services attempted damage control of the NIH director’s words by emphasizing how this wouldn’t be a registry of people, but rather simply just a private data platform for medical studies and research. This did very little to soothe the detractors, especially with the ambiguity of if people had a choice on their data being in the system.
Another large reason people are against Kennedy’s plan of an autism registry is his overall beliefs on the matter, which are outright conspiracy theories. He has long been a peddler of the myth that vaccines cause autism and is now saying other “environmental toxins” could be a cause of autism as well. Both of these claims are unproven and false information, with most research suggesting that genetic factors are most likely to increase the likelihood of autism occurring. These beliefs that Kennedy hold have contributed to the condemnation against his idea, with many, such as the Autism Self Advocacy Network, believing that his access to such a large amount of data would allow him to cherry pick evidence to support his beliefs while ignoring evidence against his ideas as he has done in the past.
While it may seem helpful to have a data registry, many are still against it. Most do not support his plan, from his personal beliefs to how his plan has been communicated to the general public. Unless the government does more damage control and tries to make its plan more appealing to the public, it is still very likely to face negativity and hurt public support of the current administration further than it already is.
