When Robert F Kennedy Jr took over as head of the US Department of Health and Human Services (HHS) earlier this year, it was clear that identifying causes of autism would be one of his top priorities. Before becoming the country鈥檚 highest-ranking public health official, Kennedy spent much of his career peddling debunked claims that vaccines were behind rising autism rates. Now, he has declared autism an epidemic 鈥� and is launching a $50 million initiative to address it.
This raised alarm among autism advocates, with some citing potential security problems with the collection of personally identifiable data. During a meeting of the National Institutes of Health (NIH), director announced the agency would create what he called an 鈥渁utism registry鈥�, a national health database to monitor people with autism. Yet the HHS, which oversees the NIH, appears to have reversed course, with an official telling 快猫短视频 that no such registry would be created.
But there are still plans to move forward with an integrated health data platform combining vast amounts of information. This would integrate data from across government agencies, private insurance companies, pharmacies and even smart watches and fitness trackers.
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At face value, broad databases that connect disparate pieces of health data could dramatically accelerate research into 鈥渁utism and other chronic health conditions鈥�, which is what HHS says the effort is designed to investigate. But with so few details available 鈥� and Kennedy鈥檚 controversial background 鈥� the concerns that such a database would infringe on people鈥檚 privacy and further stigmatise the autism community are widespread.
鈥淚 think the proposal itself is not unreasonable. It could produce something that鈥檚 really groundbreaking,鈥� says autism researcher at Stanford University in California. 鈥淏ut I think there are a lot of potential challenges.鈥�
Many European countries, including the UK and Denmark, already have large-scale national health registries that have facilitated monumental research into dementia, ageing, covid-19 and other health concerns. at Rutgers University in New Jersey says a similar database in the US could prove invaluable for advancing public health, including research on autism.
For instance, it could improve our understanding of autism in girls, who are much less likely to be diagnosed with the condition than boys. As a result, most autism research skews towards autistic boys, leaving many unknowns about autistic girls. A nationwide health database could help fill those gaps, says Torres, who previously led the New Jersey Autism Center of Excellence. The initiative could also uncover new risk factors for autism and track the effectiveness of specific interventions, helping us better understand how to support the autism community, says Fung.
However, for such an initiative to improve outcomes for autism, it must include input from the autism community, he says. HHS didn鈥檛 respond to questions on whether it was seeking such input.
鈥淕iven not only this administration鈥檚 deplorable, eugenic rhetoric about autism, but its demonstrated disregard for basic standards of scientific evidence, there is every reason to believe that this data will be misused in troubling and dangerous ways,鈥� the Autistic Self Advocacy Network said in a on 23 April.
The power of data
Bhattacharya argues that integrating available health data into one large-scale database could have benefits, such as saving money. 鈥淭he existing data resources are fragmented and difficult to obtain,鈥� he said at the NIH meeting on 21 April. 鈥淭he NIH itself will often pay multiple times for the same data resource, even data resources within the federal government.鈥� However, HHS didn鈥檛 respond to questions about how much money could be saved with the new platform.
鈥淭his kind of idea of getting lots of data together to make strong inferences is not a new idea,鈥� says at Yale University, who leads an effort to identify autism biomarkers. 鈥淚 think people are concerned, perhaps, because of the lack of detail.鈥�
One major unknown is how the government can ensure people鈥檚 privacy while merging so much data. 鈥淭he more powerful the data and the more varied the data, the greater the risks of re-identification of individuals,鈥� says at the University of Utah, an expert in privacy law. Bhattacharya said 鈥渢here are state-of-the-art protections to make sure that although linkages across the dataset will be permitted inside the platform, these linkages do not, in any way, threaten the confidentiality of patients鈥�. However, HHS wouldn鈥檛 provide further details on how the agency would protect privacy.
There are also questions about the legality of combining all of this data into one platform. Unlike in European countries, privacy laws in the US vary significantly across sectors, says Francis. Some of the databases HHS would like to tap may have different restrictions, making it difficult to integrate them in one place.
For instance, data collected by health insurers is protected under the Health Insurance Portability and Accountability Act (HIPAA). People must consent to having this data shared with other entities. But the cases where this applies are limited, and opting in isn鈥檛 always required if the data is being shared with the government for public health purposes.
For other organisations that might hold health data 鈥� life insurers, employers, schools 鈥� other laws prevent sharing this information in certain instances, but they are a patchwork. Integrating such varied data in a way that is cohesive and scientifically useful would also be challenging, given it was probably collected through different means and with different standards, says Fung.
Perhaps the biggest worry, though, is whether this data will be used in a way that further stigmatises, rather than helps, autistic individuals. Kennedy has recently made a series of false claims about autistic people. He stated that 鈥渁utism destroys families鈥� and that autistic kids will never pay taxes, hold jobs, play baseball, write poetry or go on dates. But there have been autistic poets. There are autistic baseball players. Autistic people fall in love. Plenty of autistic people hold jobs and pay taxes.
鈥淪ome people on the autism spectrum very much embrace their identity as an autistic individual,鈥� says Fung. 鈥淭hey can be very successful in what they are doing because of their detail orientation, because of their persistence 鈥� and that is all part of their autism profile.鈥�
While a database to gather information about the causes of and potential interventions for autism may seem useful, one started with such a misconception of autism risks doing more harm than good.
