States Washington

Opt-Out:

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.

To see a copy of the blood spot card used in Washington click here. To see the back of the blood spot card used in Washington click here.