Source: YouTube

A sweeping new autism study backed by Health and Human Services Secretary Robert F. Kennedy Jr. is facing growing concern after the National Institutes of Health confirmed it is collecting private medical records from millions of Americans to support the initiative. The data will come from sources including federal health agencies, insurance companies, pharmacy chains, and even wearable fitness devices. NIH Director Dr. Jay Bhattacharya said the effort will create a research platform offering comprehensive patient data for autism studies with “broad population coverage.” Researchers from outside the government, chosen through NIH’s grant process, will receive access to the information, though they will not be allowed to download it. Bhattacharya said the system will use “state-of-the-art protections” to preserve privacy.

However, the scale and timing of the data collection are drawing scrutiny. The autism study has become the centerpiece of Kennedy’s public health agenda. The secretary stated last month that he expects to uncover the root cause of autism by September. Many scientists say such a timeline is unrealistic. Some advocates fear that the framing of autism as a preventable disease could reinforce stigma and harm public understanding of neurodiversity.

Data Pool Raises Questions About Scope and Consent

According to Bhattacharya, the data will include pharmacy records, genetic test results, veterans’ health records, and claims data from the Centers for Medicare and Medicaid Services. Information from private insurers and smartwatches will also be added. A new autism registry will be built into the platform to track individuals nationwide.

The database is expected to support studies ranging from basic science to epidemiology and applied health research. But advocacy groups and civil rights organizations have raised questions about how consent is being handled and whether patients are aware their information may be included.

One privacy advocate said the idea that this level of personal data is being assembled for a politically driven project raises serious concerns. The fact that it is being justified by a promise to solve autism in a few months only adds to the discomfort.

Kennedy’s Comments Draw Reactions from Autism Community

Much of the backlash has focused not on the data itself, but on Kennedy’s recent remarks. In a press conference earlier this month, he described children with autism as unlikely to ever hold jobs, go on dates, or use the bathroom independently. He later clarified that he was referring to those with profound, nonverbal autism, but for many, the damage was already done.

A joint statement from major autism advocacy groups called Kennedy’s language stigmatizing and unsupported by science. The Autistic Self Advocacy Network, the Autism Society of America, and several others emphasized that autism is not a disease to be cured, and that autistic people are fully capable of leading meaningful, independent lives.

Advocates also pushed back on Kennedy’s claim that autism is preventable, a term that many say distorts public understanding and promotes outdated thinking. Special Olympics, founded by Kennedy’s own family, also voiced concern. They urged the public to recognize the talents and contributions of people with developmental disabilities.

Uncertainty Over Timing and Scientific Merit

The NIH says it hopes to begin awarding research grants by September, but no firm start date for the studies has been announced. Bhattacharya acknowledged the scientific process will take time. He stated that it is hard to guarantee when science will make an advance and that nature has its say.

Researchers and autism experts say any serious autism study must account for the full spectrum of presentations, from high-functioning individuals to those requiring extensive support. While Bhattacharya said the new platform would reflect this diversity, the secretary’s earlier promise to pinpoint a cause by fall has already drawn skepticism.

For now, the autism study remains in its early phase. But the controversy surrounding its framing, execution, and ethics is already well underway.

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