Urgent: Please Intervene on Autism Study Methodology by HHS

To: Sen. Budd, Sen. Tillis, Rep. Foxx

From: A constituent in Greensboro, NC

April 23

I am writing to you today to ask you urgently to intervene immediately on the HHS plan to track people with autism for Robert F. Kennedy Jr.’s autism study. CBS News published quotes from staff planning to complete these studies on people with autism. Two quotes in are particularly worrying: “Medication records from pharmacy chains, lab testing and genomics data from patients treated by the Department of Veterans Affairs and Indian Health Service, claims from private insurers and data from smartwatches and fitness trackers will all be linked together, he said.” This will violate HIPAA and medical privacy of thousands, if not millions of Americans. This is a test case; if the researchers are allowed to compile this medical data into one list, it will be used for other diseases and conditions. Maybe the next thing tracked will be heart conditions, diabetes, cancer, depression, or substance abuse. Do YOU want your medical conditions and treatment tracked by the government? “In addition, a new disease registry is being launched to track Americans with autism, which will be integrated into the data.” Autism is not a disease. Beyond that, creating a registry of individuals with a specific medical condition is never a good idea. This administration has shown repeatedly that it lacks the ability to properly firewall and protect sensitive data. This list will be leaked and eventually published for public viewing. If publicly available, then employers could use it to illegally screen applicants for autism or could make illegal employment decisions against their workers. It could be used by healthcare insurers to illegally decline coverage, or perhaps legally decline coverage if the PPACA is weakened on preexisting condition coverage. This is not a partisan request. It is urgent that you contact RFK Jr. and HHS and tell them to cease this methodology of data collection immediately. Our medical records should remain private and decentralized. The future of American medical privacy relies on your action NOW.

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