The National Society of Genetic Counselors (NSGC) strongly supports newborn screening for the Recommended Uniform Screening Panel (RUSP) as approved by the Secretary of the Department of Health and Human Services, as well as state-mandated newborn screening systems for the universal protection of newborns.
The RUSP and/or state-specific screening panels should only include conditions that have undergone thorough evidence review by an advisory committee. At a minimum, conditions should meet the inclusion criteria for a mandated screening panel as specified by the Advisory Committee on Heritable Disorders in Newborns and Children. NSGC also encourages states to consider screening methodology performance and the accessibility of follow-up services and treatment, as some technologies have disparate performance in underrepresented ancestry groups who may also be less able to access necessary confirmatory testing and treatment. To mitigate this impact, NSGC recommends consideration of additional tiered screening.
To ensure ongoing trust and transparency in newborn screening programs, NSGC strongly recommends that parents receive information and resources about the newborn screening process and options around screening from qualified healthcare providers during the prenatal and immediate postnatal periods. Information provided to parents should also indicate that conditions included on newborn screening panels have significant health risks, that early detection and treatment of such conditions lead to better health outcomes, that screening for some conditions may identify carrier status and/or conditions with variable ages of onset, and that follow-up diagnostic testing is necessary to confirm the presence of the condition. In addition, the NSGC encourages education and awareness activities targeting the general population with the goal of increasing understanding amongst all NBS stakeholders. (Adopted 2012; revised 2017 and 2022)
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