The current Secretary of Health and Human Services, Robert F. Kennedy Jr., has introduced a far-reaching plan. His plan to create a national autism registry would collect Americans’ private medical records. The initiative aims to expand data collection beyond traditional sources. That’s why it brings together pharmacy chains, lab tests and smartwatches to develop a better understanding of autism and its impact on families. Kennedy’s announcement came during a press conference on April 16.
Kennedy’s announcement follows his decades-long support for autism research, despite his past inflammatory statements connecting vaccines to the disorder. The new national registry will track individuals who have been diagnosed with autism—creating a rich, national dataset for researchers from all around the United States. That’s where Dr. Jay Bhattacharya will be hugely important, helping get valuable data from federal and commercial databases. This data will include electronic medical records, genomics data from patients served by the Department of Veterans Affairs and the Indian Health Service, and claims data from private payers.
In his remarks, Kennedy emphasized the profound challenges faced by families dealing with autism, stating, “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. Many of them will never use a toilet unassisted.” His remarks set off a firestorm of criticism from many autism advocates. They claim that pronouncements such as these devalue the skills and contributions of members of the autistic community.
Alison Singer, president of the Autism Science Foundation, expressed her concerns regarding Kennedy’s remarks, noting that they “made it sound like these were people whose lives were worthless, when that couldn’t be further from the case.” Her remarks are on point and reflect what many advocates are hearing. They fundamentally understand that people with autism should be celebrated and acknowledged as important and constructive members of our communities.
As for the registry, it is prepared to fund 10-20 independent research teams. These researchers will then have access to the records that are collected. These researchers will be awarded grant funding to carry out innovative and impactful studies designed to improve our understanding of autism. Kennedy claims that this program will give researchers unprecedented access to detailed data about the entire U.S. population. It’s the first time this broad coverage has been offered.
Dr. Jay Bhattacharya supported the initiative, stating, “What we’re proposing is a transformative real-world data initiative, which aims to provide a robust and secure computational data platform for chronic disease and autism research.” This ambitious project aims to improve the understanding of autism through in-depth patient data.