Bill would limit agency use of autism data and genetic material

Public agencies and their contractors and grantees could collect autism-related information only for listed purposes and share it only for listed reasons. The rules cover personally identifying information showing that someone has, or is suspected of having, autism. They apply to state agencies, local governments, and their contractors and grantees. Collection would be allowed when needed for benefit programs, care or services, education oversight, or compliance with state or federal law. Sharing would require informed written consent, a court order or subpoena, a need to provide services or supports, or a legal requirement. It would use only the information needed, and omit a person's name if de-identified information would serve the purpose. If effective, these rules would apply to autism-related information held on or after the section's effective date, even if collected earlier.

People and organizations would generally need informed consent to sell or transfer someone's DNA sample or genetic information, or to obtain, keep, disclose, or test it in specified circumstances. A DNA sample includes a human specimen from which DNA can be taken and DNA already taken from it. The rules cover genetic information and DNA samples from any person. Exceptions allow some actions for legal investigations and proceedings, court orders, certain identity or parentage checks, and specified medical or public health purposes; which exceptions apply depends on the action. A person could ask for a sample or information to be destroyed, subject to exceptions for legal, medical, and investigative needs. Study samples or information generally would have to be destroyed when the study ends or the person withdraws, unless the person agreed to keep them. If effective, these rules would apply to genetic information and DNA samples in existence on or after October 1, 2025, even if obtained earlier.

Certain unauthorized sales or transfers, disclosures, and genetic tests would be felonies, and an injured person could sue over certain violations. These rules concern a person's DNA sample, genetic information, and identity as someone who had a genetic test. Unauthorized sale or transfer would be a category D felony. Certain unauthorized disclosures and tests would be category E felonies. A person injured by a violation of the disclosure and testing rules could sue for actual damages, including legal fees. If effective, these provisions would take effect October 1, 2025.