NY S07929

Requires the commissioner of social services to authorize Medicaid payment for rapid whole genome sequencing for beneficiaries under 21 years of age with complex or acute illness of unknown etiology who are receiving hospital intensive care or high acuity services, effective one year after the bill takes effect and subject to federal Centers for Medicare and Medicaid Services approval.

Defines rapid whole genome sequencing as investigation of the entire human genome that returns preliminary results within seven days and final results within fifteen days, including patient-only sequencing and duo/trio sequencing with biological parents.

Establishes medical necessity criteria requiring the patient's symptoms suggest multiple genetic tests would be needed, the healthcare provider determines timely molecular diagnosis is necessary for treatment decisions, and the patient has one of twelve specified conditions including congenital anomalies, metabolic disorders, refractory seizures, cardiac abnormalities, or relevant family genetic history.

Protects genetic data as health information under HIPAA and state law, with primary use for patient diagnosis and treatment, and allows scientific research use only with express patient or guardian consent, with patients retaining the right to revoke consent and require data expungement.

Authorizes the commissioner to promulgate rules, submit necessary waiver applications and Medicaid state plan amendments to the federal government, and take other administrative actions necessary for implementation.