NY A09324

Requires the New York Department of Social Services to authorize Medicaid payment for rapid whole genome sequencing (results within 7-15 days) for beneficiaries under 21 years old with complex or acute illness of unknown etiology who are hospitalized in intensive care or high acuity units, effective one year after enactment.

Establishes medical necessity criteria including: patient symptoms suggesting broad differential diagnosis, healthcare provider determination that molecular diagnosis is necessary for clinical decision-making, and presence of specific conditions (congenital anomalies, organ malformations, abnormal labs, refractory seizures, cardiac abnormalities, family genetic history, or similar conditions).

Designates genetic data as protected health information under HIPAA with primary use for diagnosis and treatment; allows use in scientific research only with express written consent from the patient or legal guardian, with rights to rescind consent and require data expungement.

Authorizes the commissioner to add additional conditions for coverage based on new medical evidence and to expand coverage to other next-generation sequencing tests beyond rapid whole genome sequencing.

Requires the commissioner to promulgate regulations and submit necessary waiver applications or Medicaid state plan amendments to the Centers for Medicare and Medicaid Services to secure federal funding participation.