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Newborn Screening program (NBS)

Newborn Screening Specimens Use and Storage

Information on Storage and Use of My Baby’s Leftover Newborn Screening Blood Spots

Congratulations!  The birth of a new baby is an exciting time for a family.  While you were pregnant hopefully you have received the booklet Important Information for Parents about the Newborn Screening Test.  Newborn Screening (NBS) 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. 

Benefits

The benefits of newborn screening are many and go beyond your own baby’s health.  California, like many of other states, stores leftover NBS 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, NBS in California has gone from testing each baby for 3 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 NBS 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 NBS 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, Consent for the Release of Dried Blood Specimen From GDSP (CDPH 4407). 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 NBS leftover blood spots go through several levels of review and approval. 

Parents May Request that Their Baby’s NBS Specimen be Destroyed

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 NBS blood spots be destroyed and therefore not used for research or stored in the California Biobank complete and submit the form: Parent Request to Have Newborn Blood Specimen Card Destroyed (CDPH 4410).  For questions or a copy of the form contact the California Biobank Program Coordinator at CaliforniaBiobank@cdph.ca.gov.

Resources

For more detailed information and forms visit the following pages:

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