- Mission [1]
- Title XXVI of the Children's Health Act of 2000, "Screening for Heritable Disorders," establishes a program to improve the
ability of States to provide newborn and child screening for heritable disorders. Title XXVI enacts three sections of the
Public Health Service (PHS) Act: sections 1109, 1110, and 1111. On April 24, 2008, this Act was reauthorized and programs
and activities were expanded by the “Newborn Screening Saves Lives Act of 2008” and added Sections 1112, 1113, 1114, 1115
and 1116. Section 1110 establishes a program for evaluating the effectiveness of screening, counseling or health care services
in reducing the morbidity and mortality caused by heritable disorders in newborns and children. Section 1112 establishes a
clearinghouse of newborn screening; Section 1113 establishes a program for laboratory quality; Section 1114 establishes an
Interagency Coordinating Committee on Newborn and Child Screening; Section 1115 establishes a national contingency plan for
newborn screening; and Section 1116 establishes the Hunter Kelly newborn screening research program.The Secretary of Health
and Human Services (HHS) is directed under section 1111 of the PHS Act to establish an Advisory Committee on Heritable Disorders
in Newborns and Children (Committee). The Committee provides technical information to the Secretary for the development of
policies and priorities that will enhance the ability of the State and local health agencies to provide for newborn and child
screening, counseling and health care services for newborns and children having or at risk for heritable disorders. The Committee's
purpose is to provide to the Secretary advice about aspects of newborn and childhood screening and the grant program established
under Section 1109 of the Act. Activities carried out under Sections 1112-1114 and 1116 shall take the Committee’s recommendations
into consideration. Section 1109 of the PHS Act authorizes the Secretary to award grants to States, or a political subdivision
of a State, or a consortium of two or more States, or political subdivisions of States to enhance, improve or expand the ability
of States and local public health agencies to provide screening, counseling or health care services to newborns and children
having or at risk for heritable disorders. The “Newborn Screening Saves Lives Act of 2008” amends section 1109 (a) of the
PHS Act, expanding some activities to: 1) provide health care professionals and newborn screening laboratory personnel with
education in newborn screening and training in relevant and new technologies in newborn screening and congenital, genetic,
and metabolic disorders; 2) provide and deliver educational programs about newborn screening counseling, testing, follow-up,
treatment, and specialty services to parents, families, and patient advocacy and support groups; and 3) establish, maintain,
and operate a system to assess and coordinate treatment relating to congenital, genetic, and metabolic disorders. In addition,
the amendment to Section 1109 provides that an application submitted for a grant must contain assurances that the eligible
entity has adopted and implemented, is in the process of adopting and implementing, or will adopt and implement guidelines
and recommendations of the Committee.
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