California biobank program

California Biobank Program

Due to staffing resource shortages, a temporary moratorium will be placed on all requests for research purposes, effective January 1, 2025. Previously approved requests and requests that have already been processed will continue to be fulfilled. This temporary moratorium does not affect specimen destruction requests. The temporary moratorium is expected to remain in place until the staffing resource shortages are resolved.

We understand that this may cause inconvenience and appreciate your understanding during this challenging time. For any questions or further information, please contact the California Biobank Program at CaliforniaBiobank@cdph.ca.gov.

The California Biobank Program (CBP) is a collection of maternal blood specimens from the California Prenatal Screening Program and dried blood spot card specimens from the California Newborn Screening Program.

The CBP opened in 2014 after the California Department of Public Health was mandated to make specimens available to researchers to:

Identify risk factors for women's and children's diseases
Develop and evaluate screening tests
Develop and evaluate prevention strategies
Develop and evaluate treatments

The California Biobank Program:

Houses prenatal and newborn screening specimens

Follows federal and state privacy and research laws

Is recognized internationally for its large culturally, geographically, and genetically diverse populations

The Program does not store the specimens for the purpose of gathering DNA on pregnant individuals or babies.

Specimens that have personal identifying information are never released to researchers or outside agencies without prior written approval of the parents (for example, in the case of a formal research study, where the parent signs a consent for the researcher to use their baby's specimen).

The Genetic Disease Screening Program (GDSP) takes these confidentiality requirements very seriously and there are severe penalties for the unlawful release of any information that identifies a parent or infant. These penalties include significant fines and other financial penalties, and possible jail time. Since the start of this program, there has never been an instance of a privacy breach.

GDSP adheres to all rules regarding human subjects research as described by state and federal laws.

How research saves lives

California's large and diverse population has allowed researchers to learn more about rare genetic disorders, such as Severe Combined Immune Deficiency (SCID), through the Newborn Screening Program and the collection of blood spots in the Biobank. This research has provided important – and sometimes lifesaving – lessons for public health programs like ours.

For example, Dr. Jennifer Puck created a newborn screening test that uses the collected dried blood spots to detect a rare genetic disorder called SCID, also known as "Bubble Boy" disease. This disease used to be a death sentence because it meant that the baby didn’t have an immune system to fight off infection. Now, because of amazing researchers like Dr. Puck, there are therapies available to support babies born with SCID.