The Trump regime's plan to revive a failed program for mass surveillance and data scraping of Americans' private medical records is deeply alarming and violates our fundamental right to privacy. This proposal, which the Senate has rightly expressed "serious reservations" about, would allow the National Institutes of Health (NIH) to amass a staggering amount of personal data from sources like phone providers, wearable devices, health insurers, and government agencies without proper oversight or privacy protections in place
A previous iteration of this program intended to track Alzheimer's disease was shut down due to the Government Accountability Office's findings that it risked mismanaging hundreds of millions of dollars and failing to address critical data privacy concerns. Now, under the guise of studying autism, the administration seems intent on resurrecting this unethical and invasive data collection scheme.
Autism researchers themselves have condemned this approach, pointing out that the premise of finding an environmental "cause" of autism is scientifically flawed and offensive to the autism community. Moreover, experts have warned that even if data is allegedly anonymized, it is alarmingly easy to uncover individuals' identities from basic details like birth dates and locations.
Most disturbingly, there is a real risk that this treasure trove of deeply personal medical data could be shared with untrustworthy entities like law enforcement agencies, as the Trump administration has already done with other internal data sources. This is an unacceptable violation of our civil liberties and medical privacy.
I urge Congress to take decisive action to halt this program and ensure robust safeguards are in place to protect Americans' sensitive health information from exploitation by the government or third parties. Our medical records must not be treated as fodder for misguided, unethical initiatives driven by conspiracy theories rather than evidence-based science.
Please use all available means, including withholding funding if necessary, to shut down this alarming overreach and defend our basic rights to medical privacy and data protection. The American people are counting on you.
First sent on August 12 by Coleman
