RFK Jr. causes alarm with use of Medicare and Medicaid patient data for autism "research"

Washington DC - Health Secretary Robert F. Kennedy Jr. said on Wednesday that a new database of autism patients enrolled in Medicare and Medicaid will be used for research.

RFK Jr. will create a database of autism patients enrolled in Medicare and Medicaid and use it for research into the causes of the disorder.
RFK Jr. will create a database of autism patients enrolled in Medicare and Medicaid and use it for research into the causes of the disorder.  © AFP/Alex Wroblewski

The proposed database will act as a platform from which research into the root causes of autism can be conducted and will include data on other associated chronic disorders.

"We're pulling back the curtain, with full transparency and accountability, to deliver the honest answers families have waited far too long to hear," HHS Secretary RFK Jr. said in a statement released by HHS.

RFK Jr's proposal will see the National Institutes of Health (NIH) and the Centers for Medicare and Medicaid Services (CMS) partner up to enable "research across claims data, electronic medical records, and consumer wearables."

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"We’re using this partnership to uncover the root causes of autism and other chronic diseases," he claimed.

RFK Jr. falsely believes that there is a link between vaccinations and autism, while also peddling wild unscientific theories and disparaging views about autistic people.

In April, he triggered outrage by claiming that autism is a "preventable disease" caused by unspecified toxins in the environment.

Use of Medicare/Medicaid data faces support and skepticism

RFK Jr's proposal has faced a backlash from the medical community, many expressing concern over the potential for "misuse" of patient data.
RFK Jr's proposal has faced a backlash from the medical community, many expressing concern over the potential for "misuse" of patient data.  © IMAGO/MediaPunch

The news that the NIH and CMS will pool patient data and use it for research into autism sparked alarm in the community and among scientists.

Dr. Helen Tager-Flusberg, director of the Center for Autism Research Excellence at Boston University, told Reuters that the research areas specified in the HHS statement "have absolutely nothing to do with identifying the root causes of autism."

Tager-Flusberg is referring to HHS' claim that the data would be used to understand "healthcare utilization, chronic disease etiology and treatment, and the economic burden of chronic conditions."

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Speaking to the New York Times, University of Pennsylvania professor and autism researcher David Mandell said that "it's the registry without the word 'registry' in it," and warned that the data could be "misused or misappropriated."

"We are creating a tool, and tools can be used for good and for evil," Dr. Mandell said. "I know a lot of researchers... who have used this kind of tool for good. And I'm really concerned that that's not what happens."

Cover photo: AFP/Alex Wroblewski

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