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Newborn Screening program

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What Happens to My Baby's Blood Spots After the Newborn Screening Test?

Introduction

Congratulations!  The birth of a new baby is an exciting time for a family.  While you were pregnant you should have received the California Newborn Screening (NBS) Program booklet Important Information for Parents about the Newborn Screening Test.  This booklet explains newborn screening. Newborn screening  identifies babies with certain rare disorders so that treatment can be started right away. Early treatment can prevent serious health problems or even save a baby’s life. The booklet also explains what happens to the blood spots after the testing is completed.

Benefits of storage

California, like many other states, stores newborn screening bloodspot cards. The benefits of newborn screening are many and go beyond your own baby’s health.  California, like many of other states, stores leftover newborn screening dried blood spots in the state’s biobank after newborn screening has been completed.  The spots are then used to monitor and improve the NBS Program.  The stored spots are also used to develop new tests. Over the last 25 years, newborn screening in California has gone from testing each baby for three disorders to 80 disorders. 

Leftover blood spots are also used for research approved by the California Department of Public Health.  Research is limited to projects that aim to identify, treat and/or prevent the diseases of women and children. Some of the research done with the spots include studies on autism and childhood cancers. 

The stored newborn screening dried blood spots could also provide useful information to you or your family.  In the future, the blood spots could be used to detect a disorder not included in the newborn screening panel.  You and your baby’s doctor might want to use the leftover dried blood spots for special testing that otherwise could not be done.  

In all situations where a child’s blood spot would be used for other diagnostic purposes, parents need to sign a release form, CDPH 4407: Consent for the Release of Dried Blood Specimen From GDSP (PDF) . This form allows the NBS Program to send the specimen to a doctor or lab.

Protecting Privacy

Protecting your family’s privacy is important. All state and federal privacy laws are strictly followed.  Personal identifying information is not provided when blood spots are used for research.  All requests for use of newborn screening leftover blood spots go through several levels of review and approval. 

Parents May Request that Their Baby’s Blood Spots be Destroyed

If you want the bloodspot card destroyed after the newborn screening test is done, that is your right. Parents may request that their baby’s blood spots not be stored or used in research.  To request that your baby’s or your own newborn screening blood spots be destroyed and therefore not used for research or stored in the California Biobank, complete and submit one of the following forms:

For more information, contact the California Biobank Program Coordinator at CaliforniaBiobank@cdph.ca.gov.

Program Resources

For more detailed information and forms visit the following pages:

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