Newborn Screening Saves Lives Reauthorization Act of 2019 (HR 2507, 116th Congress)

Policy Details

Policy Details

Originating Entity
Last Action
Referred to Committee
Date of Last Action
May 2 2019
Congressional Session
116th Congress
Date Introduced
May 2 2019
Publication Date
May 13 2019

SciPol Summary

The Newborn Screening Saves Lives Reauthorization Act of 2019 (HR 2507, 116th Congress) would bolster education around and practices relating to genetic screening of newborns and children for certain heritable disorders. As such, the Act would, among other provisions:

  • Generate programs to promote education of newborn genetic testing and healthcare services (e.g., counseling, testing, treatment, and long-term care);
  • Produce a website for a general audience relating to the Advisory Committee on Heritable Disorders in Newborns and Children, including the nomination process for this committee, and re-authorize the committee to 2024;
  • Bolster oversight and surveillance of screening and diagnosis procedures through the Centers for Disease Control and Prevention, in conjunction with the Advisory Committee;
  • Re-commit and solidify the role of the Hunter Kelly Research Program, including new measures related to funding;
  • Authorize appropriations of $31 million annually for fiscal years 2020 through 2024 for some programs, and $8 million annually for fiscal years 2020 through 2024 for ensuring laboratory quality and surveillance; and
  • Commission a study from the National Academy of Medicine to understand provisions of the uniform screening panel, including any barriers to receiving them, the process by which new conditions are added to the uniform screening panel, technological or scientific advancements pertaining to screening for new disorders or to make current screening more effective and less expensive, and recommendations for legislative or administrative actions relating to the uniform screening panel.
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