Newborn Screening Information for Providers:
The newborn screening system relies on healthcare providers to educate parents about newborn screening and its benefits. Parent awareness about the newborn screening process plays an important role in alleviating anxiety about positive, borderline, or unsatisfactory newborn screening results. We have developed a variety of education materials to help guide discussions with parents.
Minnesota Statutes 144.125-144.128 and 144.966 require birth hospitals and healthcare providers to inform parents about the benefits and risks of newborn screening, as well as the specific benefits and risks associated with choosing to opt-out of any part of newborn screening. The law also requires providers to document in the infant's medical record that the parents received information about newborn screening and had an opportunity to ask questions.
We recommend the following to meet the legal requirements:
- Provide and review the Newborn Screening Fact Sheet.This fact sheet is automatically sent out with every newborn screening card.
- Inform parents that their infant's newborn screening blood spots and hearing screening results will be sent to the Minnesota Department of Health, and that all test results and any remaining dried blood will be retained by the department as mandated by law. Visit our Retention Practices page for more information.
- Inform parents that, in addition to screening for the disorders on the newborn screening panel, blood spots are used for the following purposes:
- Continuous quality improvement of newborn screening
- Evaluation and comparison of new testing methods
- Inform parents that they have the option to authorize MDH to store and use their infant's blood spots and test results beyond the mandated retention period. Parents who wish to authorize extended storage must sign a consent form, available to download from the Education Materials and Forms page. Consented blood spots and test results may be used for the following purposes:
- Screening and public health research on anonymous specimens to help develop newborn screening tests and better understand diseases for the benefit of Minnesota infants and the general public
- Health-related studies for specific patients or families
- The identification of missing or deceased children
- Inform parents that they may decline to have their infant screened. Parents who decline screening must sign the Parental Refusal of Newborn Screening form, available to download from the Education Materials and Forms page. It is important to review the following points with parents who choose to decline screening:
- Infants affected by the disorders screened for often appear healthy at birth and have no family history of the disorder.
- Infants affected by the disorders screened for can die or become developmentally delayed if not identified early by newborn screening.
- Hearing loss may not be readily apparent in newborns without screening.
- By the time symptoms appear, damage can be irreversible. An affected infant who is not screened may not receive treatment in time to prevent serious developmental delay, illness, or death.
- Explain to parents that if they decline screening for their infant, their decision will be recorded and documented in their infant's medical record and with the Newborn Screening Program.
- Inform parents who would like their infant to undergo blood spot screening but prefer testing be performed outside of MDH, that they can arrange for testing to be done by a private laboratory. Ideally these arrangements are made prior to birth. Parents and providers should know that:
- Private testing must be arranged by the parent through a primary care provider and the specific private laboratory.
- The specific disorders screened for by private laboratories may vary from those screened for by MDH.
- There is currently one private laboratory in the United States that provides newborn screening equivalent to the Minnesota Newborn Screening Program.
- Testing performed by a private laboratory is more expensive and could take longer to receive results, and follow-up will not be tailored to Minnesota's medical system.
- The birth facility must provide documentation to MDH that the parents refused to have their newborn screened by MDH.