Good data are necessary for good policy, but data collection often involves privacy concerns. In North Dakota, The Jamestown Sun reports:
A bill under consideration in the North Dakota Legislature is prompting concern among some parents of children with autistic spectrum disorders. The bill, Senate Bill 2193, creates a database of information about autistic people and establishes the position of a state autism coordinator.
“I have minor concerns about it all but what is extremely upsetting is the mandated database,” said Amanda Lausch, mother of 5-year-old Ariella who has an autism spectrum disorder. “Whoever diagnoses them is required to report it to the state. It requires a physical exam and the state can collect any other information it deems appropriate.”
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The current wording of the bill as passed by the Senate, includes a clause that requires the department of health to keep confidential all records of the database that could be used to identify an individual. The same clause exempts transfers of information to other state agencies from the confidentiality requirement. It does require the receiving state agencies to treat the information as confidential.
[State Senator Joan] Heckaman said the privacy of the medical records is also covered by federal law.
The Health Insurance Portability and Accountability Act, more commonly known as HIPAA, requires all medical information to be treated as confidential, she said.
