Privacy: genetic testing: newborn screening.

Existing law, the Genetic Information Privacy Act, requires a direct-to-consumer genetic testing company, as defined, to provide a consumer with certain information regarding the company's policies and procedures for the collection, use, maintenance, and disclosure, as applicable, of genetic data, and to obtain a consumer's express consent for collection, use, or disclosure of the consumer's genetic data, as specified. Existing law also requires a direct-to-consumer genetic testing company to implement and maintain reasonable security procedures and practices to protect a consumer's genetic data against unauthorized access, destruction, use, modification, or disclosure, and to develop procedures and practices to enable a consumer to access their genetic data and to delete their account and genetic data, as specified. Existing law excludes from its provisions the California Newborn Screening Program, among other activities subject to specified state and federal laws. This bill would apply the requirements of the Genetic Information Privacy Act to the California Newborn Screening Program beginning on January 1, 2025. Existing law imposes certain requirements for contracts between a direct-to-consumer genetic testing company and a service provider, as defined, including that the contract prohibits the service provider from retaining, using, or disclosing the biological sample, extracted genetic material, genetic data, or any information regarding the identity of the consumer, for any purpose other than for the specific purpose of performing the services specified in the contract for the business. This bill would, for contracts entered into before January 1, 2025, apply the requirements of the act to the contract when altered, modified, renewed, or extended on or after January 1, 2025. Existing law requires actions for relief pursuant to the Genetic Information Privacy Act to be prosecuted exclusively by the Attorney General, a district attorney, county counsel, city attorney, or city prosecutor, as specified, in the name of the people of the State of California upon their own complaint or upon the complaint of a board, officer, person, corporation, or association or upon a complaint by a person who has suffered injury in fact and has lost money or property as a result of the violation of the act. Because the bill would require local officials to perform additional duties, the bill would impose a state-mandated local program. The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement. This bill would provide that, if the Commission on State Mandates determines that the bill contains costs mandated by the state, reimbursement for those costs shall be made pursuant to the statutory provisions noted above. The California Constitution requires the state to reimburse local agencies and school districts for certain costs mandated by the state. Statutory provisions establish procedures for making that reimbursement. This bill would provide that, if the Commission on State Mandates determines that the bill contains costs mandated by the state, reimbursement for those costs shall be made pursuant to the statutory provisions noted above.