What Conditions are Screened For in Washington?
Amino Acid Disorders
Fatty Acid Oxidation Disorders
Carnitine Uptake Defect (CUD)
Organic Acid Conditions
About Newborn Screening in Washington
All babies born in Washington State are tested for a number of rare but treatable disorders. Infants with these conditions usually appear normal at birth and, without screening, these disorders are not likely to be detected and treated in time to prevent death or severe disability. Our testing and follow-up services allow early diagnosis and treatment, both of which will increase your child’s quality of life. Newborn screening via dried blood spot specimen is mandated by State law to be collected by the birth facility (or birth attendant if born at home) when the infant is 18 to 48 hours of age. Although not required, a routine second newborn screen is recommended for all infants between 7 and 14 days of age as a standard of medical practice to optimize disease detection including later-onset and milder forms of the disorders. It is critical that collection and submission of this specimen is not delayed since several disorders can be life threatening within the baby’s first week of life.
How is Newborn Screening Paid for in Washington?
The cost of the screening tests is $84.20, with an additional $8.40 fee going to help support the special clinics that provide services for families who have a child who tests positive for a condition. The cost is charged through the birth facility.
Policies and Resources
State law specifies that you may refuse the test only if your religious beliefs and practices do not allow them. If you refuse to have the tests done, you must sign the back of the Newborn Screening Card which states that you refused to have your baby tested. You have the right to ask your doctor or midwife to discuss the screening process and to provide the screening result to you.
Support for families:
One of the concerns families have when learning their child has a condition detected through newborn screening is increased cost of health care. Fortunately, Washington has laws and regulations meant to help families make care affordable.
Health related insurance policies sold to Washington residents must provide coverage for the special diet products necessary to treat children with Phenylketonuria (PKU).
There are also various specialty clinics in the state, which treat specific conditions detected through newborn screening. For example, the Biochemical Genetics Program at Seattle Children’s provides tailored care for those children with metabolic disorders. Many of the specialty clinics receive some support through the $8.40 fee collected along with the newborn screening fee.
Storage and Use of Dried Blood Spots:
After the newborn testing on your baby’s dried blood spots has been completed, there remains some dried blood left which is called a residual dried blood spot. This residual dried blood spot is the property of the state and will be held by Washington until your child is 21 years old. The residual dried blood spots will be stored in a secure facility to maintain the confidentiality of the newborns. Access to the residual dried blood spots is greatly limited. Researchers will only have access to the residual dried blood spots once the Department of Health’s Institutional Review Board approves their project. For a researcher to have access to your child’s residual dried blood spot and accompanying identifying information while it’s being stored by the state, you will first have to sign an informed consent agreement. Anonymous samples, those without any identifying information, may be released by the state if the Department of Health first determines that the intended confidential research will have a significant health benefit to the entire community and the entire project is approved by the Institutional Review Board.
If a parent does not want their newborn’s residual dried blood spots stored and used for public health research, they may request that the department destroy the specimen after all newborn screening tests have been performed and had negative results.
Please contact the Washington’s Department of Health (see contact information at the top) with further questions regarding the storage and use of your child’s residual dried blood spots.