RFK Jr. launches autism study using private medical data for research
Robert F. Kennedy Jr.'s new autism research initiative will use a vast collection of medical data from federal and private sources to study autism comprehensively, with researchers granted access to critical patient records.
The National Institutes of Health (NIH) has announced a new collaboration with Health and Human Services Secretary Robert F. Kennedy Jr. to launch a comprehensive autism study, making use of a vast array of private and federal medical data.
This initiative aims to create a unified platform that will provide unprecedented access to patient data, enabling a more thorough examination of autism’s causes, variations, and treatments.
RFK Jr's autism research raises alerts
Dr. Jay Bhattacharya, NIH Director, stated that this new study will compile data from many federal and commercial databases of the U.S. population. Medical records from pharmacy chains, lab tests, genomics data, and health information from the Department of Veterans Affairs and Indian Health Services and even technological devices such as fitness trackers and smartwatches.
Health Secretary Robert F. Kennedy Jr. unveils a new nationwide autism study, aiming to harness vast medical data for groundbreaking research. Photo: The New York Times
While researchers claim that this is to study autism in real time, this also means that they will have access to a new disease registry for tracking autism diagnoses in Americans
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Controversy over RFK Jr.'s autism research study goals
Many advocacy groups and experts have also criticized the fact that RFK Jr. is behind this project due to Kennedy's past remarks on autism, particularly him referring to autism as a "preventable disease"; as this kind of language is stigmatizing and very dangerous.
However, Bhattacharya has assured that the study will address autism's wide range of manifestations from a high-functional individual to those with more severe disabilities. According to him, confidentiality would be a top priority, including "state-of-the-art protections" for all personal data.