As part of U.S. Health Secretary Robert F. Kennedy Jr.’s proposed plan to find the cause of autism, the National Institutes of Health has announced its plan to collect troves of private medical information from federal and commercial databases. Kennedy announced his hope to discover the supposed environmental cause for the disorder by creating a real-time monitoring system for those with autism and other chronic diseases. This would be accomplished by compiling information from federal and private databases — including private insurance claims, pharmacy medication records, genomic data from the Department of Veterans Affairs and Indian Health Service and even data from your smartwatch or fitness tracker. In reality, the health secretary is amassing an unprecedentedly centralized hoard of medical data, leaving millions of Americans open to their private information being exploited by a consistently untrustworthy administration committed to its own agenda.
While originally hoping to find a cause by September, more conservative estimates have since emerged, hoping to distribute research grants for 10-20 research groups by the end of the summer. To assuage privacy concerns, NIH Director Jay Bhattacharya announced that researchers won’t be able to look at individual patients, merely statistical aggregates of the data.
Even if this plan goes off without a hitch, there’s an inherent problem: Autistic people don’t need or deserve to be actively tracked by the U.S. government. Kennedy’s fervor for this pet project is guided by his belief that autism poses an existential threat to family life and productivity, and that the “epidemic” of cases can be traced back to specific environmental toxins that cause the disorder.
On the contrary, the perceived increase in autism diagnoses over the last 20 years has clearly been a result of wider testing and broad social acceptance of the disorder. States with the highest rates of autism are also the ones with the most resources dedicated to early testing for autism. Despite the fact that scientists agree that the range of factors that may lead to autism are complicated and multilayered, Kennedy still unfoundedly believes that the rise in autism diagnoses is a catastrophic problem that demands solving. While there’s no problem with trying to scientifically find the cause of a condition, there’s a major problem with promoting pseudoscientific and prejudicial misunderstandings of autism in order to push a cost-cutting, consolidatory agenda of government power expansion.
Another broad concern with this plan is the idea of the federal government putting its foot in the door and creating precedent for “real-time monitoring” of its citizens, using the autism research justification as merely a smokescreen to mask the dangerous potential of this project. The possibility of abuse of such an extensive database of private medical information is frightening. Genetic discrimination is a very real possibility, only limited by technology and our willingness to exploit it. Right now, the Genetic Information Nondiscrimination Act prevents insurance companies and other large employers from discriminating based on available genetic information, but it does not prevent private corporations like 23andMe from using and transferring your volunteered data. It also doesn’t protect against those with federal insurance, small-time business workers or life, disability and long-term care insurance. This administration has made bolder deregulatory moves before — it’s only a matter of whether they feel like keeping this law in place or not at this point.
This kind of centralization of medical information is undoubtedly a major privacy concern. It’s especially surprising that Kennedy — the formerly independent, anti-big government candidate who believes the federal government is responsible for his uncle’s death and planting CIA operatives in liberal media — is so intent on creating a mass archive of medical information for the government to use as they see fit. Whether it involves attempting to genetically predict criminal behavior, utilizing genetics in personal injury litigation or simply using genetic data as a profiling tool in any capacity, unchecked control over such a large repository of medical information is a dangerous reality. This plan comes under an administration known for misrepresenting its intentions and accomplishments, all while irresponsibly disregarding operational security regarding sensitive data. If the approach to this registry is as hamfisted as their approach to bombing Houthis or cutting government costs, we have good reason to fear for the security of our medical data.
Autistic people aren’t threats to society, incapable of assimilating with so-called normal people — they don’t need to be actively tracked on a registry as if they were sex offenders. Kennedy’s proposed autism study is a pseudoscientific justification for a mass data collection project — one that wouldn’t help the autistic people he claims to be doing this for. As autism awareness and advocacy groups have pointed out, autistic people and families don’t need to be tracked and cured; what they could use are support programs that accommodate special needs to give autistic people the same opportunities as anyone else. Accepting and integrating the growing range of neurodiversity in the world, rather than trying to stamp it out entirely like it were a disease, is the best course forward for autistic people and the world at large.
WSN’s Opinion section strives to publish ideas worth discussing. The views presented in the Opinion section are solely the views of the writer.
Contact Noah Zaldivar at [email protected].
