Newborn Screening - Adding OTC Deficiency, GAMT Deficiency, and ARG1-D

Summary

The Washington State Department of Health (Department) tests all babies born in Washington State for rare but treatable health issues through a process called “newborn screening.” This is done using a small blood sample collected from a baby’s heel. State law requires the State Board of Health (Board) to establish rules for newborn screening. This includes the list of conditions that all babies are tested for after birth. In November 2025, the Board added OTCD, GAMT Deficiency, and ARG1-D to the newborn screening panel. The updated rules take effect January 1, 2026, and the Department will begin screening for these conditions on that date.

For More Information

Statutory Authority: RCW 70.83.050
Board Contact: Molly Dinardo, molly.dinardo@sboh.wa.gov
Department of Health Contact: Megan McCrillis, megan.mcrillis@doh.wa.gov

To receive future updates on these rules, including email notices about next steps and public involvement opportunities, please complete the newborn screening rulemaking interest form online here: https://airtable.com/appInSCDg3PQGljEz/pagbfxJg9B2dCn04R/form

Additional Background

Newborn Screening is a program within the Department that tests all babies for rare but treatable conditions using a dried blood sample. Under RCW 70.83.050, the Board is responsible for establishing rules for the program. This is outlined in chapter 246-650 WAC and includes the list of conditions that all newborns must be screened for.

The Washington State Board of Health (Board) has adopted amendments to chapter 246-650 WAC to add three new conditions to the Washington State mandatory newborn screening panel. These conditions are:

The Board adopted these changes during the rules hearing on November 19, 2025. The Department of Health (Department) will begin testing for these conditions on January 1, 2026.

The Board voted to add OTCD, GAMT deficiency, and ARG1-D, as early detection of these conditions is critical for saving lives and preventing irreversible harm. Prompt identification through newborn screening allows for effective interventions, including specialized diets, supplements, and nitrogen-scavenging medications, that prevent neurological damage and support normal development. Expanding screening for these conditions will improve survival, reduce long-term disability, and enhance quality of life for affected families.

The adopted rule is unchanged from the version published in the Washington State Register (WSR 25-20-091, CR-102). The concise explanatory statement summarizes the public comments received and the Board’s responses.

On February 4, 2022, the Board announced the project to add OTCD. You can find the announcement under WSR-22-05-012 (CR-101).

On November 28, 2023, the Board announced the project to add GAMT Deficiency and ARG1-D. You can find the announcement under WSR 23-24-016 (CR-101).

The draft proposed rules and rules hearing were announced on September 30, 2025, and are listed under WSR 25-20-091 (CR-102).

The final adopted rules were announced on December 1, 2025. They are listed under WSR 25-24-060 (CR-103)

Related Links

November 19, 2025, Board Meeting

October 8, 2025, Board Meeting

October 9, 2023, Board Meeting

September 8, 2023, Newborn Screening Technical Advisory Committee (TAC) Meeting

April 12, 2023, Public Meeting