Newborn screening (NBS) is a highly successful public health program that touches nearly all babies born in the United States. This simple blood test can identify babies at risk for a number of health conditions, many of them rare, that if caught early can benefit from early intervention. A phlebotomist collects five drops of blood from the baby’s heel on a filter paper card within 24-48 hours of birth. After the sample dries, the dried blood spot (DBS) is sent to a state-approved laboratory where it is tested for anywhere from 29 to 57 health conditions, depending upon the state in which the baby was born.

After NBS is complete, a small amount of dried blood remains on the filter paper card. Many labs keep and store these “residual samples” because of their continued value to the family, laboratories’ quality control and assurance monitoring, and public health and biomedical research.

The storage and use of DBS from newborn screening provide the public health, research, and healthcare communities with an invaluable resource. DBS have distinct benefits for families and children and can facilitate improvements in newborn screening tests and procedures. They also allow states to understand the health issues impacting their populations better. Genetic Alliance is engaging the health community in an open, proactive dialogue on policy developments for DBS storage and use that builds on the successes of the NBS system and centers on communication and education of diverse stakeholders.

FAQs about Residual Dried Blood Spots

Genetic Alliance’s Recent Activities in Residual Dried Blood Spots

On September 23, 2009, Genetic Alliance co-convened a free Public/Professional Forum on Blood Spots, Genetic Research, and Privacy with the American College of Medical Genetics and the American College of Medical Genetics Foundation. This two-hour meeting set the stage for multistakeholder dialogue and collaboration for addressing key issues related to the storage and use of residual DBS. Access meeting material.

On June 25, 2010, Genetic Alliance submitted comments on the Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) briefing paper titled “Considerations and Recommendations for National Guidance Regarding the Retention and Use of Residual Dried Blood Spot Specimens after Newborn Screening.” The report reviews the challenges state newborn screening programs face in collecting and using DBS and underscores the importance of national guidance for states to navigate these complex issues. Read Genetic Alliance’s comments.