On May 6, Governor Dayton signed the newborn screening restoration bill into law with the full support of the Minnesota Chapter of the American Academy of Pediatrics (MNAAP) and other medical organizations. The new law, which went into effect August 1, positions Minnesota to save as many lives as possible while upholding parents’ rights to refuse testing, request destruction of blood spots/test results, or both.
Q&A with Mark McCann,
Program Manager, Newborn Screening
What changes went into effect on August 1, 2014?
The new legislation passed earlier this year authorizes MDH to store blood spots and test results. Under this new law, the Minnesota Department of Health (MDH) can keep blood spots and test results indefinitely unless parents request the destruction of the blood spot and/or test results.
Additionally, the new legislation explicitly states that MDH should promote materials describing the newborn screening program and encourage medical providers and medical education programs to thoroughly discuss newborn screening with expectant parents and parents of newborns.
What about babies born before August 1, 2014?
Blood spots collected before August 1 are subject to the old practice of retaining blood spots for 71 days and test results for 2 years. Blood spots collected on or after August 1 will be retained by MDH indefinitely unless parents request destruction of the blood spot and/or test results.
How is MDH educating expectant parents about newborn screening?
The legislation makes it clear that MDH is to provide information to health care providers, including pediatricians, about benefits associated with blood spot storage and test results.
We’ve been educating expectant parents for a number of years. But because of the new legislation, we’re taking additional steps to educate both parents and medical providers about newborn screening. We are planning to survey 8,000 parents of babies born over a 6-week period to understand what they learned prenatally about newborn screening and what they wish they would’ve known. We also have a mailing going out to over 1,600 prenatal providers and clinics that includes new and improved prenatal education materials. Additionally, we’ll be conducting a survey of prenatal care providers to better understand how they can be more successful in having a discussion with parents on newborn screening. MDH continues to make education materials and forms available to childbirth education programs.
If parents do not want their spots saved, what is the process for destruction?
Parents should fill out the proper forms on the MDH website. Within 30 days of receiving their request, MDH will destroy the blood spots. MDH is required by CLIA to maintain test results for 2 years.
If parents are interested in having their child’s blood spot specimens returned to them, they should contact the Minnesota Department of Health Newborn Screening Program at 651-201-3548.
The new legislation clearly sets out the parameters of what things MDH can do as part of program operations. Parents may revoke approval for storage and use of samples and results at any time. Under this new law, MDH can keep all indefinitely unless a parent fills out a request form to order their destruction.
Anything else pediatricians should know about?
With new legislation, our ability to operate as a nationally recognized program has clearly been strengthened. The program now has more clarity about how and when blood spots can be used. We really look forward to continuing our work with Minnesota physicians toward giving all Minnesota babies a healthy start.
I would encourage all pediatricians to make sure they ask for newborn screening reports from the patient’s birth hospital and review them with parents at the first well child visit.
For more information, including parental option forms, visit
www.health.state.mn.us/divs/phl/newborn/index.html
