Protect medical privacy from autism research database risks

To: Sen. Merkley, Rep. Bonamici, Sen. Wyden

From: A constituent in Portland, OR

April 23

The National Institutes of Health is compiling confidential medical data from numerous federal and commercial sources into a centralized platform for studying autism. This includes medication records from pharmacies, test results from government healthcare systems, private insurance claims, and data from wearable devices - all linked together with broad coverage of the U.S. population. While measures are promised to protect privacy, consolidating such a vast trove of personal health information raises significant concerns over potential misuse or breaches of this sensitive data. The sheer scale and scope of this database amplifies the risks to patient confidentiality. Are there adequate legal safeguards in place governing how this data can be accessed and ensuring informed consent from individuals whose private health information is being collected?

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