U.S. autism data project sparks uproar over ethics, privacy and intent

The Trump administration has retreated from a controversial plan for a national registry of people with autism just days after announcing it as part of a new health initiative that would link personal medical records to information from pharmacies and smartwatches. Jay Bhattacharya, director of the National Institutes of Health, unveiled the broad, data-driven initiative to a panel of experts Tuesday, saying it would include “national disease registries, including a new one for autism” that would accelerate research into the rapid rise in diagnoses of the condition. The announcement sparked backlash in subsequent days over potential privacy violations, lack of consent and the risk of long-term misuse of sensitive data. The Trump administration still will pursue large-scale data collection, but without the registry that drew the most intense criticism, the Department of Health and Human Services said. Advertisement The NIH did not respond to requests for more details about the proje ... Read full article.