42 U.S.C. § 300b–8 — Improved newborn and child screening for heritable disorders

(a) Authorization of grant program: Using money set aside under section 300b–16, the Secretary — acting through the Administrator of the Health Resources and Services Administration — must give grants to eligible groups. The Secretary must consider advice from the Advisory Committee on Heritable Disorders in Newborns and Children. The grants let these groups do five things: (1) improve state and local public health agencies' ability to screen, counsel, and treat newborns and children who have or might have heritable disorders; (2) train health care workers and lab staff on new screening technology, on getting specimens collected and tested quickly, and on sharing medical information with families and providers; (3) create education programs, written at the right reading level, that teach parents, families, and support groups about screening, counseling, testing, follow-up, treatment, and specialty care; (4) build a system to track and coordinate follow-up care and treatment for these disorders; and (5) speed up how fast specimens are collected, delivered, and screened, and how fast newborns are diagnosed. (b) Eligible entity: An "eligible entity" that can get this grant is a state, a part of a state government, a group of two or more states working together, a U.S. territory, a health facility connected to the Indian Health Service, or any other group the Secretary decides has the right expertise in newborn screening. (c) Approval factors: The Secretary can only approve a grant application if the entity promises to follow — or is already following, or will use the grant money to start following — the Advisory Committee's guidelines that the Secretary has adopted. This includes screening every newborn for the disorders the Advisory Committee recommends and the Secretary adopts. (d) Coordination: The Secretary must coordinate the programs funded by these grants with each other and with existing newborn screening work. (e) Limitation: Grant money cannot be used for four things: giving cash payments to affected people, paying for inpatient hospital care, buying land or making capital improvements to property, or funding private (proprietary) research or training. (f) Voluntary participation: Nobody can be forced to take part in a program funded by this section. Refusing to take part cannot cost a person eligibility for any other federal or state service. (g) Supplement not supplant: Grant money must add to existing federal, state, and local funding for this kind of work — it cannot replace money that would otherwise be spent. (h) Publication: A state's grant application must be made public in a way that lets anyone comment on it, including through hearings. Any comments the state gets after publishing the application must be addressed in the application itself. (i) Technical assistance: The Secretary must give grant recipients whatever technical help is needed to keep the programs' quality up.