National Institutes of Health to collect Americans' medical records for autism study

The NIH Director Dr. Jay Bhattacharya this week said the institute would gather data from federal and commercial databases to create a registry of Americans with autism, according to a report from CBS News. Bhattacharya said the purpose of the platform is to make data more easily accessible for scientists who will be researching potential causes for autism. Health and Human Services Secretary Robert F. Kennedy Jr. last week pledged to launch studies into the condition. His promise came after a Centers for Disease Control and Prevention report showed that one in 31 American children 8 years of age were diagnosed with autism in 2022. This week Kennedy said the registry was vital to the research, and called autism a preventable disease that may be caused by environmental factors. He has previously suggested a link between childhood vaccines and the disorder.

What have critics said about the effort? A coalition of autism advocacy organizations last week released a joint statement saying Kennedy’s description of the condition as preventable was stigmatizing. The groups agreed that more research and support for those with autism is needed, but called on officials to include members of the community in their efforts. The nonprofit Autism Self Advocacy Network on Wednesday released an additional statement raising concerns that the registry could collect personal data without an individual's consent. Meanwhile, an autism researcher at the University of North Carolina at Chapel Hill told TIME that the Trump administration’s cuts to Department of Education programs directly impacted her studies. Federal funding for other programs has also been cut, according to TIME.

Dig deeper: Listen to Lindsay Mast’s report in The World and Everything in It about moms who are fighting for health autonomy.