Bill > H1197

This bill requires the Executive Office of Health and Human Service, in conjunction with the Office of MassHealth, to ensure the provision of rapid whole genome sequencing for Medicaid beneficiaries 21 years of age or younger who have a complex or acute illness of unknown etiology. Rapid whole genome sequencing is defined as an investigation of the entire human genome, including coding and non-coding regions and mitochondrial DNA, to identify disease-causing genetic changes, with preliminary positive results within 5 days and final results within 14 days. The bill also outlines specific clinical criteria for coverage, including the need for timely identification of a molecular diagnosis to guide clinical decision-making and treatment. The bill further requires the protection of genetic data generated from the rapid whole genome sequencing under the Health Information Portability and Accountability Act (HIPAA) and related regulations.