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Newborn Screening in California

See how California's newborn screening program compares to federal recommendations.

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  • 37

    How many rare diseases California screens for

  • 3

    Rare diseases missing: Krabbe, MLD, Duchenne

  • Indefinite

    How long results are stored

  • $226

    Required screening fees (see statute below)

  • 401,515

    Annual births

  • 1,338

    Estimated Diagnoses

Screening in California

Does the state have a NBS Advisory Council?
No

How is screening funded?
Screen Fees, Genetic Disease Testing Fund

Where are the laboratory facilities?
CA Laboratories

Where can I learn more?
More about California’s Newborn Screening Program

Take Action in California

Dried Blood Spot Storage Explained

In California, dried blood spots collected for newborn screening are stored indefinitely, unless a parent requests that their child’s specimen be destroyed. Currently, the state biobank has stored specimens from 1982.

Screen Fees Explained

The screening fees are deposited into the Genetic Disease Testing Fund (GDTF). The GDTF pays the expenses of program operations, including the cost of supplies, educational materials, laboratory analysis, and follow-up services.

Statutes & Regulations

Statutes & Regulations Explained

Statutes and regulations are the collection rules that govern all newborn screening program components. This includes diseases found on the state screening panel, reporting of test results, newborn screening program guidelines, state committee guidelines, and fees. Statutes and regulations are both enforced under full authority of the law.

Statutes are laws enacted by the state legislative body and signed into law by the governor. They are broadly enforced across the entire state. Regulations are created by state agencies, under authority from statute, to oversee the specific area of the state. For example, a statute will authorize the ability to create a newborn screening fee and the regulation will determine the amount of the fee.

Previous Legislation Explained

In 2016, the Foundation assisted with the passage of SB 1095 in California. Authored by Senator Dr. Richard Pan, the legislation ensures that California provides newborn screening for a condition within two years of addition to the federal RUSP.

California advocates following their successful testimony with California State Senator, Dr. Richard Pan

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