California Biobank Program

Forms and Information For Parents and Individuals

Infants in California are screened for a wide variety of genetic disorders at birth, most of which, if found early and treated, can prevent intellectual disability, severe neurological problems, irreversible comas, and even death.

Approximately 1 in 600 births is diagnosed with one of the disorders screened for by the Genetic Disease Screening Program (GDSP). GDSP provides important follow-up services for infants who are identified through this public health screening program. This follow-up ensures timely medical care which has been documented to dramatically improve the health of children with one of these disorders.

The California Biobank stores the specimens left over after testing is completed. There are several reasons why the newborn specimen card is stored by GDSP:

To have a large number of de-identified (anonymous) specimens to use to develop tests for new disorders. It can take up to 100,000 “practice” samples for GDSP to develop a new screening test for a new disorder.
Using specimens that come from California is very important. The use of these samples has allowed GDSP to develop new tests and to improve the screening program. Using the information (race/ethnicity) of California babies enables GDSP to improve the accuracy of the test.
The baby’s screening test can be repeated if needed without getting another blood sample from the baby.
The baby’s sample is properly stored and available to parents for other health-related testing (for example, in the case of unexplained deaths such as Sudden Infant Death Syndrome (SIDS), or if the specimen is required to check for a rare disorder).

Parents should be provided information about the storage of the left-over specimens and how to opt-out of blood storage three different times:

During the third trimester, prenatal providers are mandated to give the pregnant individual a copy of the Important Information for Parents about the Newborn Screening Test brochure (PDF). Information about storage and opting out is included in the brochure.
The pregnant person receives this brochure a second time from the maternity hospital while there to give birth. The brochure provides information about the storage of blood spots and the opt-out option.
Once the newborn screening (NBS) specimen is collected, there is a tear-out copy of the form given to the parents prior to discharge from the hospital. It includes a copy of the Test Requisition Form (containing the baby’s personal information) that was submitted along with the blood specimen, the Notification of Information and Privacy Practices and a section titled “Information about the Storage of Newborn Screening Blood spots,” which contains information about opting out of storage.

If you’d like to request the destruction of a specimen, please complete and submit the Parent Request to Have a Newborn Blood Specimen Card Destroyed (PDF). Or, if you are an adult who would like to have your specimen destroyed, please submit the Adult request for destruction form.