Robert F Kennedy Jr has launched a project to trawl federal databases to try to identify why there has been an increase in diagnoses of autism, but there are deep concerns about the project's credibility.
The Health and Human Services (HHS) Secretary, who has claimed in the past that there is a link between vaccinations and autism, despite decades of evidence to the contrary, is putting $50 million behind a project that he has claimed will deliver answers within a few months.
A petition has been running for some weeks against the initiative, advocating strongly against the creation of a patient 'registry' that could be vulnerable to misuse and discrimination, with signatures overtaking 50,000.
According to HHS – which denies the creation of a registry – the project is a "landmark partnership" between the National Institutes of Health (NIH) and the Centers for Medicare & Medicaid Services (CMS) that will create "a real-world data platform enabling advanced research across claims data, electronic medical records, and consumer wearables."
It claims the data harvesting will be carried out "in a manner consistent with applicable privacy laws to protect Americans' sensitive health information."
Ryan Smith, a parent of two neurodiverse children who started the petition, said yesterday that despite assurances from the HHS that a registry would not be created, "the government is still building a data platform, and many questions remain about consent, oversight, and who will control that information."
Kennedy – who has repeatedly claimed that an investigation was justified by the increasing prevalence of autism diagnoses among American children over the past 25 years – said the objective is to uncover "the root causes of autism and other chronic diseases."
Still, it is clear that the primary focus is on autism spectrum disorder (ASD), which will be the pilot indication for the programme. It will be used to understand "healthcare utilisation, chronic disease aetiology and treatment, and the economic burden of chronic conditions," according to HHS.
Recent figures from the Centers for Disease Control and Prevention (CDC) suggest one out of every 31 children in the US was diagnosed with autism in 2020, compared with one in 150 in 2000, although that increase has been widely attributed to greater awareness, more testing, and broader diagnostic criteria.
Kennedy has argued repeatedly over the years that vaccinations were the cause, including in a Fox News interview in 2023, and there are deep concerns that the aim of seeking an "environmental cause" for ASD is an excuse to force the data to fit a link with childhood immunisations.
The Autism Society of America has acknowledged the withdrawal of the registry plan following public outcry related to ethical, scientific, and privacy concerns, but remains deeply worried by Kennedy's programme.
"The broader research initiative persists, led by individuals like David Geier, whose past misconduct has raised questions about the study's credibility," it said in a statement.
Geier was appointed to lead the project despite having a long track record of anti-vaccine rhetoric and no medical or advanced scientific qualifications. He has also been disciplined in the past for practising medicine without a license.
"Statements from the Administration perpetuating discredited theories linking vaccines and autism, contradict established scientific consensus," said the organisation.
"Additionally, definitive claims to find 'environmental toxins' in an accelerated timeline further conflicts with current science, along with the considerable cuts to autism research and supports that have already taken shape.
https://pharmaphorum.com/news/rfk-jr-launches-database-project-explore-autism-causes
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