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. Since 2021, the Board has approved adding three new conditions to the required screening panel: OTC Deficiency, GAMT Deficiency, and ARG1-D. The Department anticipates starting testing for these new conditions by early 2026.
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.
Since 2021, the Board has approved adding three conditions to the mandatory screening panel:
- Ornithine transcarbamylase deficiency (OTCD)
- Guanidinoacetate methyltransferase (GAMT) deficiency
- Arginase 1 deficiency (ARG1-D)
A Technical Advisory Committee (TAC) recommended and evaluated these additions using the Board’s established process and criteria.
The Board filed two CR-101s (Proposed Statements of Inquiry) in February 2022 and November 2023. The filing notified the public of its intent to add these conditions to chapter 246-650 WAC.
Before the Board can add new conditions and screening begins, the Department must secure legislative approval to increase the newborn screening fee. This fee funds new tests, staff time, follow-up for positive results, and related administrative costs. The Health Care Authority (HCA) covers more than 40% of births in the state. Therefore, it must also seek approval to adjust Medicaid managed care rates to cover the increased fee.
During the 2025 legislative session, the Department and HCA secured funding to include the three new conditions. Testing is expected to begin in early 2026.
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).
Related Links
October 9, 2023, Board Meeting
- Cover Memo
- State Board of Health Presentation – Approval of GAMT and ARG1-D
