Programs and Policy Dried Blood Spot Storage and Usage
When newborn screening is performed, a nurse collects a few drops of blood from the baby’s heel on filter paper. After the sample dries and is sent to the state-approved laboratory, multiple “punches” of varying sizes are taken from the blood spots so they can be tested for the conditions included in the state’s newborn screening panel. After newborn screening is complete, a small amount of dried blood remains on the filter paper. Some families may have questions about what happens to the leftover dried blood specimen (also called dried blood spots).
What uses do residual dried blood spots have?
Each state handles the use and storage of these blood spots slightly differently. Some states store the cards for a limited amount of time and then destroy them, while others may keep them stored indefinitely. These residual samples are kept by some state labs because of their continued value to the family, to laboratories' quality control and assurance monitoring, and to public health and biomedical research.
Dried blood spots 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 newborn screening need to be diagnosed as quickly as possible. In addition, the dried blood spot can 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.
How do residual dried blood spots help state public health programs and biomedical research?
Residual dried blood spots can be 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 newborn screening tests that can be made available to improve the health outcomes of our nation's newborns. Our current newborn screening system is built upon such research.
In addition, public health programs utilize dried blood spots for population-based research. For example, in the early 1990's, dried blood spots were used to discover how many newborns had been exposed to HIV. Furthermore, dried blood spots 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.
How do states protect the privacy of personally identifiable information?
In all states, the primary concern of the dried blood spot storage program is security. In most states, once newborn screening is completed, the filter paper containing the residual dried blood spot is separated from the newborn screening card that contains the newborn's identifying information. The residual dried blood spot sample is assigned a code and is stored in a locked on-site facitily accessible only by employees with extensive data privacy training. When the dried blood spot 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 newborn screening card with identifying information. Additionally, all requests for use of residual dried blood spots 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 typicial for those implemented in all states and territories practicing dried blood spot storage.
To date, there have been no published reports on the misuse of residual dried blood spots. Privacy protections and patient confidentiality 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 dried blood spots 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.
To find out more about the policies and procedures in your state, please visit the Conditions Screened by State section and find out more about your state's newborn screening program. In addition, parents, family members, and health care professionals are encouraged to contact their state’s newborn screening program with any questions or concerns regarding residual blood spot storage and use.
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