42 USC 300 - Improved newborn and child screening for heritable disorders

View all text of Part A [§ 300b - § 300b-17]

§ 300b–8. Improved newborn and child screening for heritable disorders

(a) Authorization of grant programFrom amounts appropriated under section 300b–16 of this title, the Secretary, acting through the Administrator of the Health Resources and Services Administration (referred to in this section as the “Administrator”) and taking into consideration the expertise of the Advisory Committee on Heritable Disorders in Newborns and Children (referred to in this section as the “Advisory Committee”), shall award grants to eligible entities to enable such entities—

(1) to enhance, improve or expand the ability of State and local public health agencies to provide screening, counseling, or health care services to newborns and children having or at risk for heritable disorders;

(2) to assist in providing health care professionals and newborn screening laboratory personnel with education in newborn screening, counseling, and training in—

(A) relevant and new technologies in newborn screening and congenital, genetic, and metabolic disorders;

(B) the importance of the timeliness of collection, delivery, receipt, and screening of specimens; and

(3) to develop and deliver educational programs (at appropriate literacy levels) about newborn screening counseling, testing, follow-up, treatment, and specialty services to parents, families, and patient advocacy and support groups;

(4) to establish, maintain, and operate a system to assess and coordinate followup and treatment relating to congenital, genetic, and metabolic disorders; and

(5) to improve the timeliness of—

(A) the collection, delivery, receipt, and screening of specimens; and

(B) the diagnosis of heritable disorders in newborns.

(b) Eligible entityIn this section, the term “eligible entity” means—

(1) a State or a political subdivision of a State;

(2) a consortium of 2 or more States or political subdivisions of States;

(3) a territory;

(4) a health facility or program operated by or pursuant to a contract with or grant from the Indian Health Service; or

(5) any other entity with appropriate expertise in newborn screening, as determined by the Secretary.

(d) Coordination

(e) LimitationAn eligible entity may not use amounts received under this section to—

(1) provide cash payments to or on behalf of affected individuals;

(2) provide inpatient services;

(3) purchase land or make capital improvements to property; or

(4) provide for proprietary research or training.

(f) Voluntary participation

(g) Supplement not supplant

(h) Publication

(1) In general

(2) Comments

(i) Technical assistance

(July 1, 1944, ch. 373, title XI, § 1109, as added Pub. L. 106–310, div. A, title XXVI, § 2601, Oct. 17, 2000, 114 Stat. 1164; amended Pub. L. 110–204, § 2, Apr. 24, 2008, 122 Stat. 705; Pub. L. 110–237, § 1(a)(1), May 27, 2008, 122 Stat. 1556; Pub. L. 113–240, § 2, Dec. 18, 2014, 128 Stat. 2851.)