On May 7, Robert Kennedy’s Department of Health and Human Services (HHS) announced a partnership between the Centers for Medicare & Medicaid Services (CMS) and National Institutes of Health (NIH) to build a “real-world data platform” to study autism. This data-sharing plan would enable research by using data from Medicare and Medicaid enrollees with a diagnosis of ASD, drawing information from claims data, electronic medical records, and consumer wearables (fitness trackers and other devices).
“We’re using this partnership to uncover the root causes of autism and other chronic diseases,” Kennedy said in a statement, though autism is not, in fact, a disease. “We’re pulling back the curtain—with full transparency and accountability—to deliver the honest answers families have waited far too long to hear.” Though the official HHS announcement, NIH Director Jay Bhattacharya, and CMS director Mehmet Oz all emphasized full compliance with privacy and security laws, some remain concerned about how this information will be handled.
The move comes amid contradictory statements from the agencies over the past several weeks on the issue of an “autism registry.” The idea was first brought up during a NIH Council of Councils meeting on April 21. Bhattacharya discussed the NIH’s intention to study autism by gathering private medical records of individuals with autism from federal and commercial data bases, including medication records from pharmacies, lab records from government medical agencies like the Department of Veterans Affairs, claims from private insurers, and data from fitness trackers. The news was met with immediate public outcry from many autism advocacy groups, researchers, autistic individuals and their families, and others. Within three days, however, HHS said there would be no such registry.
Now, HHS says this inter-agency partnership will use available data to focus on autism diagnosis trends over time; health outcomes from specific medical and behavioral interventions; access to care and disparities by demographics and geography; and the economic burden on families and healthcare systems.
While this newly announced partnership does not use the word “registry,” some remain skeptical including David Mandell, a professor of psychiatry at the University of Pennsylvania who studies autism. Speaking to The New York Times, Mandell categorized this announcement as “the registry without the word ‘registry’ in it,” expressing concern that the data — which can legally be shared between government agencies under the CMS’ Research Data Disclosure Program — would be “misused or misappropriated.”
In a statement regarding the formation of an “autism registry” the Autistic Self Advocacy Network (ASAN) also expressed distrust and concerns over privacy.
“Given everything this administration is saying and doing about autism, privacy, and public health, we have every reason to distrust this initiative under current leadership at HHS … This administration has already demonstrated that it is reckless with our data and does not value the privacy of vulnerable communities,” ASAN wrote in a statement. They continued.
“Secretary Kennedy’s research proposals would not help autistic people. Secretary Kennedy’s decision to hire [noted vaccine skeptic] David Geier for this research effort demonstrates that his HHS is willing to disregard their obligations to protect our health and safety. They are less interested in good science than in making sure they produce the answers they want to find.
Kennedy has been criticized for inaccurate and insulting statements about individuals with autism, countering research from the Centers of Disease Control and Prevention (CDC) regarding autism diagnosis. He has repeatedly asserted, contrary to the scientific consensus, that autism is the result of “environmental exposures” and that “somebody made a profit by putting that environmental toxin into our air, our water, our medicines, our food, and it’s their benefit to normalize it … [that autism] has always been here.”
He has also declared agencies under his auspices would determine the cause of autism by September of this year— an extraordinary claim considering autism has been extensively studied for nearly 100 years.
“Secretary Kennedy’s remarks over the past two weeks demonstrate that the administration does not understand us, does not like us, and does not intend to help us,” ASAN wrote. “In that context, when the administration announces new policies affecting our community without consulting us, the natural result will be fear, anger, and confusion. If the administration wants to change that, it owes us clear answers, an apology for all the lies it has spread about autistic people so far, and opportunities for autistic people to advocate for our own needs to the administration.”
