The US Department of Health and Human Services has initiated a pilot program for the National Institutes of Health to investigate the causes of autism using Medicare and Medicaid data. This effort will include data from insurance claims and wearable technology. Advocacy groups expressed strong concerns over potential privacy issues, prompting HHS to assure that data sharing will prioritize security. The initiative is part of HHS Secretary Robert F. Kennedy Jr.'s objective to uncover autism causes by September, although community fears remain significant regarding data access and usage.
Ever since the registry was first announced, there was an enormous sense of fear in the autism community, and they have concerns: Who's going to have access to data? How are those data going to be used?
HHS nodded to those concerns in its announcement Wednesday. It said NIH and Centers for Medicare & Medicaid Services will start with a data use agreement focused on Medicare and Medicaid enrollees diagnosed with autism spectrum disorder.
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