1. United States
2. N.Y.
3. Letter

The revelation that the National Institutes of Health (NIH) plans to create a database using Medicare and Medicaid information to study autism raises significant privacy concerns. Although the stated goal is to uncover the root causes of autism, compiling sensitive health data from millions of Americans without proper safeguards is deeply troubling. Medical records contain highly personal details that, if mishandled or misused, could lead to discrimination, stigma, and violations of civil liberties. Previous administrations have granted certain federal employees permission to identify individuals based on limited data points, setting a dangerous precedent. The autistic community and privacy advocates rightly fear this database could be abused despite assurances of privacy protections. Government agencies must prioritize robust data security measures and iron-clad policies preventing any unauthorized access or disclosure of private medical information. Americans should not have to sacrifice their privacy and peace of mind in the name of scientific research, no matter how well-intentioned. Upholding strict privacy standards is essential to maintaining public trust in our institutions and healthcare system. I urge you to exercise utmost vigilance in overseeing the implementation of this autism database initiative. Concrete steps must be taken to enshrine and enforce privacy rights, with clear mechanisms for accountability and redress if violations occur. The creation of this database warrants significant scrutiny to guarantee the protection of Americans' most sensitive personal data. Please act swiftly to address these legitimate concerns.