Newborn Screening Legislation

Newborn Screening Saves Lives Act

The Screening for Heritable Disorders Legislation was created to enhance, improve, and expand the ability of state and local public health agencies to provide screening, counseling, and health care services to newborns and children who have, or are at risk for, heritable disorders. This legislation established the Heritable Disorders Program and created the Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC).

In 2008, The Newborn Screening Saves Lives Act (H.R. 3825, S. 1858) was enacted to amend the Heritable Disorders Program legislation. This added several programs and further defined the activities for SACHDNC.

Specifically, this Act:

• Established grant programs to provide education in congenital, genetic, and metabolic disorders;
• Established grant programs for training in newborn screening technologies;
• Established grant programs to coordinate follow-up care;
• Created an increase of consumer awareness and knowledge of family support services, research, and other resources in newborn screening;
• Improved laboratory quality standards;
• Developed a national contingency plan if a public health situation arises; and
• Established a central online clearinghouse.

Secretary’s Advisory Committee on Heritable Disorders in Newborns and Children

Secretary's Advisory Committee on Heritable Disorders in Newborns and Children (SACHDNC) was chartered in February 2003 to advise the Secretary of Health and Human Services regarding the most appropriate application of universal newborn screening tests, technologies, policies, guidelines, and standards for effectively reducing morbidity and mortality in newborns and children who have, or are at risk for, heritable disorders.

SACHDNC assists the Secretary of Health and Human Services specifically by providing:

• advice and recommendations concerning the grants and projects authorized under the Heritable Disorders Program; 
• technical information to develop policies and priorities for this program that will enhance the ability of the state and local health agencies to provide screening, counseling, and other health care services for newborns and children who have, or are at risk for, heritable disorders; and
• recommendations, advice, or information that may be necessary to enhance, expand, or improve upon the ability of the Secretary to reduce the mortality and morbidity in newborns and children from heritable disorders.