What uses do residual dried blood spots (DBS) have for a family?
DBS can be used in the event that a baby requires re-testing, providing a fast alternative to bringing the parents and infant back to the hospital for a new blood draw. This is critical, as many of the conditions screened for by NBS need to be diagnosed as quickly as possible.

The DBS can also be made available to the parents for further health-related tests for their newborn, and can be used for identification purposes in the case of a missing or deceased child. While the DNA in the DBS is never sequenced for research, the DBS can be used to provide a DNA match to help identify the child.

How do residual DBS help state public health programs and biomedical research?
Residual DBS are used in quality assurance and quality control procedures to ensure a laboratory’s equipment is working properly. The samples also aid in the development of new NBS tests that can be made available to improve the health outcomes of our nation’s newborns. Our current NBS system is built upon such research.

Public health programs utilize DBS for population-based research.For example, in the early 1990s, DBS were used to discover how many newborns had been exposed to HIV. Furthermore, DBS provide states with an unbiased, complete sample that allows states to better understand factors that contribute to the health of their residents, and to better address public health issues.

Where are residual DBS stored?
Typically, the same laboratory that conducted the NBS testing also manages the storage of DBS. Storage facilities are located either at state public health laboratories, university and medical center laboratories, or private laboratories contracted by the state.

How do states protect the privacy of personally identifiable information?
In all states, the primary concern of the DBS storage program is security.In most states, once newborn screening is completed, the filter paper containing the residual DBS is separated from the NBS card that contains the newborn’s identifying information. The residual DBS sample is assigned a code and is stored in a locked on-site facility accessible only by employees with extensive data privacy training. When the DBS sample is used for research purposes, the sample is assigned yet another code or tracking number, ensuring that the research team is many steps removed from the number assigned to the NBS card with identifying information.Additionally, all requests for use of residual DBS for research must be approved – at minimum – by an Institutional Review Board before the de-identified spots can be released for research.Exact procedures vary state-by-state, but such practices are typical of those implemented in all states and territories practicing DBS storage.

How long do states retain DBS?
Depending upon the state, DBS can be retained anywhere from one month to indefinitely. Most states store residual DBS for over one year.

Have residual DBS ever been misused?
To date, there have been no published reports on the misuse of residual DBS. Privacy protections and patient confidently rules ensure that blood spots cannot be accessed by a third party, including insurers and law enforcement. Protecting the interests of the infants from whom the DBS are obtained is of the utmost importance to state public health programs, and states continue to work to develop guidelines for the continued and expanded use of residual samples.

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