Safeguard Iowans' medical privacy and autism data protections

Iowa must prioritize safeguarding children's medical privacy and preventing undue data collection and disclosure of confidential health information, especially related to developmental disorders like autism. There are rising concerns about potential federal efforts to create autism registries or databases without adequate legal protections, accountability measures, or respect for individual privacy rights. Such actions could lead to stigma, discrimination, and violations of civil liberties for vulnerable populations. As evidenced by Illinois' recent executive order restricting the mass collection and sharing of autism-related data absent medical necessity or legal compliance, states are taking proactive steps to protect their citizens' sensitive health data. Iowa should follow suit by implementing robust privacy laws and policies that enshrine data minimization principles, limit disclosures to only what is absolutely required, mandate anonymization wherever possible, and hold state agencies, contractors, and partners accountable for any unauthorized data practices. Preserving medical confidentiality, especially for children with disabilities or developmental conditions, is crucial to fostering an inclusive society free from surveillance, prejudice, and unwarranted intrusions into personal lives. Iowa has an opportunity to be a leader in upholding privacy rights and preventing misuse of citizens' most intimate information. Decisive action to safeguard autism and other health data will demonstrate a commitment to protecting the vulnerable and upholding civil liberties.