NY A01977

Requires Medicaid to cover rapid whole genome sequencing for patients under 21 years old who have a complex or acute illness of unknown cause and are receiving care in an intensive care unit or high acuity hospital unit

Defines rapid whole genome sequencing as testing that returns preliminary positive results within 7 days and final results within 15 days, including patient-only, duo, or trio sequencing with biological parents

Establishes specific medical eligibility criteria including congenital anomalies, metabolic disorders, refractory seizures, abnormal cardiac testing, and family genetic history related to the patient's condition

Protects genetic data under HIPAA and requires express consent from patients or legal guardians before data can be used in scientific research, with the right to revoke consent and have data expunged at any time

Takes effect one year after enactment, subject to federal Centers for Medicare and Medicaid Services approval, and requires the commissioner to submit necessary waivers or state plan amendments