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 and Newborn Screening Infographic with parents. Both of these parent handouts are automatically sent to facilities and midwife practices with every newborn screening card. To view these handouts, visit our Education Materials and Forms page.
- Inform parents that they have options after screening regarding the safe storage of their baby's blood spots and test results. These options are explained on the Newborn Screening Infographic. Visit our Retention Practices page for more information.
- Allow parents the opportunity to ask questions. Have forms available for parents who choose to refuse screening, give permission for research, or request destruction of blood spots and test results. All forms are available on our Education Materials and Forms page.
- Document in the newborn's medical record that the parents were given this information and that they had the opportunity to ask questions.
If a parent is considering refusing newborn screening, it is important to review the following points:
- Newborns with the health problems we screen for often appear healthy at birth and have no family history of the disorder.
- Newborns with these health problems can die or become developmentally delayed if not identified early by newborn screening.
- By the time symptoms appear, damage can be irreversible. A baby who is not screened may not receive treatment in time to prevent serious developmental delay, illness, or death.
- Hearing loss is often not identified until 1 or 2 years of age without newborn screening. About 9 out of every 10 babies with hearing loss have hearing parents.
- If a parent chooses to refuse screening, the parent must sign a refusal form. The parent's decision will be documented in the baby's medical record and sent to the Newborn Screening Program.
- If a parent chooses to arrange for screening by a private laboratory, it is important to know that results may be delayed and follow-up will not be tailored to Minnesota's medical system. The health problems screened for by private laboratories may vary from those screened for by the Department of Health. Screening by a private laboratory should be arranged in advance.