Newborn Screening Saves Lives Reauthorization Act of 2021
Read twice and referred to the Committee on Health, Education, Labor, and Pensions.
Congressional Research Service
Official summary
Version 00 · Introduced in Senate · Feb 22, 2021
Newborn Screening Saves Lives Reauthorization Act of 2021
This bill reauthorizes through FY2026 and revises several programs and activities relating to newborn screening for certain conditions and genetic, endocrine, and metabolic diseases.
Among its changes, the bill reauthorizes and makes mandatory
the Hunter Kelly Research Program at the National Institutes of Health, and
national surveillance activities conducted by the Centers for Disease Control and Prevention.
The bill also aligns statutory requirements for research on non-identified newborn blood spots with federal regulations governing research on human subjects. These blood spots are collected as part of newborn screening programs, and some states make them available for biomedical and public health research. Under current regulations, research on non-identified bio-specimens such as blood spots is not considered to be research on human subjects, to which additional protections apply.
Source last updated: Dec 5, 2025. Consult Congress.gov for the current record.
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