An Act amending the act of June 13, 1967 (P.L.31, No.21), known as the Human Services Code, in public assistance, providing for coverage of rapid whole genome sequencing.

This bill expands public health insurance coverage in Pennsylvania to include rapid whole genome sequencing for infants under one year old who have complex or acute illnesses of unknown cause. To qualify, the child must be in an intensive care unit and show specific symptoms, such as multiple organ anomalies or severe metabolic issues, that suggest a genetic origin. The testing must be ordered by a doctor who determines that a quick molecular diagnosis is essential for guiding treatment, with results expected within fifteen days. While the genetic data will primarily be used to help doctors treat the patient, the law also allows for its use in scientific research if the parent or guardian gives explicit consent. Additionally, the bill ensures that families can access their test results for use in other medical settings and retain the right to withdraw consent for research at any time.