SEC. 2. FINDINGS. 
Congress finds the following: 
(1) Each year more than 4,000,000 babies born 
in the United States are screened by State and pri-
vate laboratories to detect some conditions that may 
threaten their long-term health. 
(2) However, there is a lack of uniformity in 
the number of conditions for which newborns are 
screened throughout the United States. While a new-
born may be screened and treated for a debilitating 
condition in one State, in another State, the condi-
tion may go undetected and result in permanent dis-
ability or even death. 
(3) Approximately 4,000 infants born each year 
are diagnosed with these detectable and treatable 
disorders. If diagnosed early, these conditions can be 
successfully managed or treated to prevent severe 
and often lifelong health consequences. 
(4) In 2004, the American College of Medical 
Genetics (ACMG) completed a report commissioned 
by the Department of Health and Human Services 
which recommended that every baby born in the 
United States be screened for 29 specific disorders, 
including certain metabolic conditions and hearing 
deficiencies. 
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(5) Currently only 11 States and the District of 
Columbia require infants to be screened for all 29 of 
these recommended disorders. 
(6) Continuity, especially during a public health 
emergency, plays a critical role in the screening, di-
agnosis, referral, and treatment of these disorders. 
Currently there is no national contingency plan for 
maintaining continuity of newborn screening systems 
following a public health emergency. 
SEC. 3. AMENDMENT TO TITLE III OF THE PUBLIC HEALTH 
SERVICE ACT. 
Part Q of title III of the Public Health Service Act 
(42 U.S.C. 280h et seq.) is amended by adding at the end 
the following: 
‘‘SEC. 399Z–1. NEWBORN SCREENING. 
‘‘(a) AUTHORIZATION OF GRANT PROGRAMS.—From 
funds appropriated under subsection (h), the Secretary, 
acting through the Administrator of the Health Resources 
and Services Administration (referred to in this section 
as the ‘Administrator’) and in consultation with the Advi-
sory Committee on Heritable Disorders in Newborns and 
Children (referred to in this section as the ‘Advisory Com-
mittee’), shall award grants to eligible entities to enable 
such entities to assist in providing health care profes-
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sionals and newborn screening laboratory personnel 
with— 
‘‘(1) education in newborn screening; and 
‘‘(2) training in— 
‘‘(A) relevant and new technologies in new-
born screening; and 
‘‘(B) congenital, genetic, and metabolic 
disorders. 
‘‘(b) APPLICATION.—An eligible entity that desires to 
receive a grant under this section shall submit an applica-
tion to the Secretary at such time, in such manner, and 
accompanied by such information as the Secretary may 
require. 
‘‘(c) SELECTION OF GRANT RECIPIENTS.— 
‘‘(1) IN GENERAL.—Not later than 120 days 
after receiving an application under subsection (b), 
the Secretary, after considering the approval factors 
under paragraph (2), shall determine whether to 
award the eligible entity a grant under this section. 
‘‘(2) APPROVAL FACTORS.— 
‘‘(A) REQUIREMENTS FOR APPROVAL.—An 
application submitted under subsection (b) may 
not be approved by the Secretary unless the ap-
plication contains assurances that the eligible 
entity— 
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‘‘(i) will use grant funds only for the 
purposes specified in the approved applica-
tion and in accordance with the require-
ments of this section; and 
‘‘(ii) will establish such fiscal control 
and fund accounting procedures as may be 
necessary to assure proper disbursement 
and accounting of Federal funds paid to 
the eligible entity under the grant. 
‘‘(B) 
EXISTING
PROGRAMS.—Prior 
to 
awarding a grant under this section, the Sec-
retary shall— 
‘‘(i) conduct an assessment of existing 
educational resources and training pro-
grams with respect to newborn screening; 
and 
‘‘(ii) take all necessary steps to mini-
mize the duplication of the resources and 
programs described in clause (i) and en-
sure that funding under this section will 
supplement, not supplant, existing funding 
for such activities. 
‘‘(d) COORDINATION.—The Secretary shall take all 
necessary steps to coordinate programs funded with 
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grants received under this section and to coordinate with 
existing newborn screening activities. 
‘‘(e) USE OF GRANT FUNDS.—An eligible entity that 
receives a grant under subsection (a)(1) may use the grant 
funds to work with appropriate medical schools, nursing 
schools, schools of public health, schools of genetic coun-
seling, internal education programs in State agencies, non-
governmental organizations, and professional organiza-
tions and societies to develop and deliver education and 
training programs that include— 
‘‘(1) continuing medical education programs for 
health care professionals and newborn screening lab-
oratory personnel in newborn screening; 
‘‘(2) education, technical assistance, and train-
ing on new discoveries in newborn screening and the 
use of any related technology; 
‘‘(3) models to evaluate the prevalence of, and 
assess and communicate the risks of, congenital con-
ditions, including the prevalence and risk of some of 
these conditions based on family history; 
‘‘(4) models to communicate effectively with 
parents and families about— 
‘‘(A) the process and benefits of newborn 
screening and the meaning of screening results, 
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including the possibility of false positive find-
ings; 
‘‘(B) how to use information gathered from 
newborn screening; 
‘‘(C) the right of refusal of newborn 
screening, if applicable; and 
‘‘(D) the potential need for followup care 
after newborns are screened; 
‘‘(5) information and resources on coordinated 
systems of followup care after newborns are 
screened; 
‘‘(6) information on the disorders for which 
States require and offer newborn screening and op-
tions for newborn screening relating to conditions in 
addition to such disorders; 
‘‘(7) information on additional newborn screen-
ing that may not be required by the State, but that 
may be available from other sources; and 
‘‘(8) other items to carry out the purpose de-
scribed in subsection (a)(1) as determined appro-
priate by the Secretary. 
‘‘(f) REPORTS TO CONGRESS.— 
‘‘(1) IN GENERAL.—Subject to paragraph (2), 
the Secretary shall submit to the relevant commit-
tees of Congress reports— 
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‘‘(A) evaluating the effectiveness and the 
impact of the grants awarded under this sec-
tion— 
‘‘(i) in promoting newborn screening 
education, resources, and training for 
health care professionals; 
‘‘(ii) on the successful diagnosis and 
treatment of congenital, genetic, and meta-
bolic disorders; and 
‘‘(iii) on the continued development of 
coordinated systems of followup care after 
newborns are screened; 
‘‘(B) describing and evaluating the effec-
tiveness of the activities carried out with grant 
funds received under this section; and 
‘‘(C) that include recommendations for 
Federal, State, and local actions to support— 
‘‘(i) education and training in new-
born screening; and 
‘‘(ii) followup care after newborns are 
screened. 
‘‘(2) TIMING OF REPORTS.—The Secretary shall 
submit— 
‘‘(A) an interim report that includes the 
information described in paragraph (1), not 
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later than 30 months after the date on which 
the first grant funds are awarded under this 
section; and 
‘‘(B) a subsequent report that includes the 
information described in paragraph (1), not 
later than 60 months after the date on which 
the first grant funds are awarded under this 
section. 
‘‘(g) DEFINITION OF ELIGIBLE ENTITY.—In this sec-
tion, the term ‘eligible entity’ means— 
‘‘(1) a State or a political subdivision of a 
State; 
‘‘(2) a consortium of 2 or more States or polit-
ical subdivisions of States; 
‘‘(3) a territory; 
‘‘(4) an Indian tribe or a hospital or outpatient 
health care facility of the Indian Health Service; or 
‘‘(5) other entities with appropriate expertise in 
newborn screening, as determined by the Secretary. 
‘‘(h) AUTHORIZATION OF APPROPRIATIONS.—There 
are authorized to be appropriated to carry out this sec-
tion— 
‘‘(1) $5,000,000 for fiscal year 2008; and 
‘‘(2) such sums as may be necessary for each 
of fiscal years 2009 through 2012.’’. 
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SEC. 4. IMPROVED NEWBORN AND CHILD SCREENING FOR 
HERITABLE DISORDERS. 
Section 1109 of the Public Health Service Act (42 
U.S.C. 300b–8) is amended— 
(1) in subsection (c)(2)— 
(A) in subparagraph (E), by striking 
‘‘and’’ after the semicolon; 
(B) by redesignating subparagraph (F) as 
subparagraph (G); and 
(C) by inserting after subparagraph (E) 
the following: 
‘‘(F) an assurance that the entity has 
adopted and implemented, is in the process of 
adopting and implementing, or will use grant 
amounts received under this section to adopt 
and implement the guidelines and recommenda-
tions of the Advisory Committee on Heritable 
Disorders in Newborns and Children established 
under section 1111 (referred to in this section 
as the ‘Advisory Committee’) that are adopted 
by the Secretary and in effect at the time the 
grant is awarded or renewed under this section, 
which shall include the screening of each new-
born for the heritable disorders recommended 
by the Advisory Committee and adopted by the 
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Secretary and the reporting of results; and’’; 
and 
(2) in subsection (i), by striking ‘‘such sums’’ 
and all that follows through the period at the end 
and inserting ‘‘$15,000,000 for fiscal year 2008 and 
such sums as may be necessary for each of the fiscal 
years 2009 through 2012.’’. 
SEC. 5. EVALUATING THE EFFECTIVENESS OF NEWBORN- 
AND CHILD-SCREENING PROGRAMS. 
Section 1110 of the Public Health Service Act (42 
U.S.C. 300b–9) is amended by adding at the end the fol-
lowing: 
‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—There 
are authorized to be appropriated to carry out this section 
$5,000,000 for fiscal year 2008 and such sums as may 
be necessary for each of the fiscal years 2009 through 
2012.’’. 
SEC. 6. ADVISORY COMMITTEE ON HERITABLE DISORDERS 
IN NEWBORNS AND CHILDREN. 
Section 1111 of the Public Health Service Act (42 
U.S.C. 300b–10) is amended— 
(1) in subsection (b)— 
(A) in paragraph (1), by inserting ‘‘and 
grants awarded under section 399Z–1’’ before 
the semicolon; 
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(B) by redesignating paragraph (3) as 
paragraph (6); 
(C) in paragraph (2), by striking ‘‘and’’ 
after the semicolon; 
(D) by inserting after paragraph (2) the 
following: 
‘‘(3) make systematic evidence-based and peer- 
reviewed recommendations that include the heritable 
disorders for which all newborns should be screened, 
including secondary conditions that may be identi-
fied as a result of the laboratory methods used for 
screening; 
‘‘(4) develop a model decision-matrix for new-
born screening program expansion, and periodically 
update the recommended uniform screening panel, 
as appropriate, based on such decision-matrix; 
‘‘(5) consider ways to ensure that States attain 
the capacity to screen for the conditions described in 
paragraph (3), and include in such consideration the 
results of grant funding under section 1109; and’’; 
(E) in paragraph (6) (as so redesignated 
by subparagraph (A)), by striking the period at 
the end and inserting ‘‘, which may include rec-
ommendations, advice, or information dealing 
with— 
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‘‘(A) followup activities, including those 
necessary to achieve rapid diagnosis in the 
short term, and those that ascertain long-term 
case management outcomes and appropriate ac-
cess to related services; 
‘‘(B) 
implementation, 
monitoring, 
and 
evaluation of newborn screening activities, in-
cluding diagnosis, screening, follow-up, and 
treatment activities; 
‘‘(C) diagnostic and other technology used 
in screening; 
‘‘(D) the availability and reporting of test-
ing for conditions for which there is no existing 
treatment; 
‘‘(E) conditions not included in the rec-
ommended uniform screening panel that are 
treatable with Food and Drug Administration- 
approved products; 
‘‘(F) minimum standards and related poli-
cies and procedures used by State newborn 
screening programs, such as language and ter-
minology used by State newborn screening pro-
grams to include standardization of case defini-
tions and names of disorders for which newborn 
screening tests are performed; 
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‘‘(G) quality assurance, oversight, and 
evaluation of State newborn screening pro-
grams, including ensuring that tests and tech-
nologies used by each State meet established 
standards for detecting and reporting positive 
screening results; 
‘‘(H) public and provider awareness and 
education; 
‘‘(I) the cost and effectiveness of newborn 
screening and medical evaluation systems and 
intervention programs conducted by State-based 
programs; 
‘‘(J) identification of the causes of, and 
risk factors for heritable disorders; and 
‘‘(K) coordination of surveillance activities, 
including standardized data collection and re-
porting, harmonization of laboratory definitions 
for heritable disorders and testing results, and 
confirmatory testing and verification of positive 
results, in order to assess and enhance moni-
toring of newborn diseases.’’; and 
(2) in subsection (c)(2)— 
(A) by redesignating subparagraphs (E), 
(F) and (G) as subparagraphs (F), (H), and 
(I); 
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(B) by inserting after subparagraph (D) 
the following: 
‘‘(E) the Commissioner of the Food and 
Drug Administration;’’; and 
(C) by inserting after subparagraph (F), 
as so redesignated, the following: 
‘‘(G) individuals with expertise in ethics 
who have worked and published material in the 
area of newborn screening;’’; and 
(3) by adding at the end the following: 
‘‘(d) DECISION ON RECOMMENDATIONS.— 
‘‘(1) IN GENERAL.—Not later than 180 days 
after the Advisory Committee issues a recommenda-
tion pursuant to this section, the Secretary shall 
adopt or reject such recommendation. 
‘‘(2) PENDING RECOMMENDATIONS.—The Sec-
retary shall adopt or reject any recommendation 
issued by the Advisory Committee that is pending on 
the date of enactment of the Newborn Screening 
Saves Lives Act of 2007 by not later than 180 days 
after the date of enactment of such Act. 
‘‘(3) DETERMINATIONS TO BE MADE PUBLIC.— 
The Secretary shall publicize any determination on 
adopting or rejecting a recommendation of the Advi-
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sory Committee pursuant to this subsection, includ-
ing the justification for the determination. 
‘‘(e) ANNUAL REPORT.—Not later than 2 years after 
the date of enactment of the Newborn Screening Saves 
Lives Act of 2007, and each fiscal year thereafter, the Ad-
visory Committee shall— 
‘‘(1) publish a report on peer-reviewed newborn 
screening guidelines in the United States; 
‘‘(2) submit such report to the appropriate com-
mittees of Congress, the Secretary, and the State de-
partments of health; and 
‘‘(3) disseminate such report on as wide a basis 
as practicable, including through posting on the 
internet clearinghouse established under section 
1112. 
‘‘(f) CONTINUATION
OF
OPERATION
OF
COM-
MITTEE.—Notwithstanding section 14 of the Federal Ad-
visory Committee Act (5 U.S.C. App.), the Advisory Com-
mittee shall continue to operate during the 5-year period 
beginning on the date of enactment of the Newborn 
Screening Saves Lives Act of 2007. 
‘‘(g) AUTHORIZATION OF APPROPRIATIONS.—There 
are authorized to be appropriated to carry out this sec-
tion— 
‘‘(1) $1,000,000 for fiscal year 2008; and 
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‘‘(2) such sums as may be necessary for each 
of the fiscal years 2009 through 2012.’’. 
SEC. 7. INFORMATION CLEARINGHOUSE. 
Part A of title XI of the Public Health Service Act 
(42 U.S.C. 300b–1 et seq.) is amended by adding at the 
end the following: 
‘‘SEC. 1112. CLEARINGHOUSE OF NEWBORN SCREENING IN-
FORMATION. 
‘‘(a) IN GENERAL.—The Secretary, acting through 
the Administrator of the Health Resources and Services 
Administration (referred to in this part as the ‘Adminis-
trator’), in consultation with the Director of the Centers 
for Disease Control and Prevention and the Director of 
the National Institutes of Health, shall establish and 
maintain a central clearinghouse of current educational 
and family support and services information, materials, re-
sources, research, and data on newborn screening to— 
‘‘(1) enable parents and family members of 
newborns, health professionals, industry representa-
tives, and other members of the public to increase 
their awareness, knowledge, and understanding of 
newborn screening; 
‘‘(2) increase awareness, knowledge, and under-
standing of newborn diseases and screening services 
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for individuals wanting to have children and expect-
ant families; and 
‘‘(3) develop and maintain current data on 
quality indicators to measure performance of new-
born screening, such as false-positive rates and other 
quality indicators as determined by the Advisory 
Committee under section 1111. 
‘‘(b) INTERNET AVAILABILITY.—The Secretary, act-
ing through the Administrator, shall ensure that the clear-
inghouse described under subsection (a)— 
‘‘(1) is available on the Internet; 
‘‘(2) includes an interactive forum; 
‘‘(3) is updated on a regular basis, but not less 
than quarterly; and 
‘‘(4) provides— 
‘‘(A) links to Government-sponsored, non- 
profit, and other Internet websites of labora-
tories as determined appropriate by the Sec-
retary that have demonstrated expertise in new-
born screening that supply research-based infor-
mation on newborn screening tests currently 
available throughout the United States; 
‘‘(B) information about newborn conditions 
and screening services available in each State 
from laboratories certified under subpart 2 of 
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part F of title III, including information about 
supplemental screening that is available but not 
required, in the State where the infant is born; 
‘‘(C) current research on both treatable 
and not-yet treatable conditions for which new-
born screening tests are available; 
‘‘(D) the availability of Federal funding for 
newborn and child screening for heritable dis-
orders including grants authorized under the 
Newborn Screening Saves Lives Act of 2007; 
and 
‘‘(E) other relevant information as deter-
mined appropriate by the Secretary. 
‘‘(c) NONDUPLICATION.—In developing the clearing-
house under this section, the Secretary shall ensure that 
such clearinghouse minimizes duplication and supple-
ments, not supplants, existing information sharing efforts. 
‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—There 
are authorized to be appropriated to carry out this sec-
tion— 
‘‘(1) $2,500,000 for fiscal year 2008; and 
‘‘(2) such sums as may be necessary for each 
of the fiscal years 2009 through 2012.’’. 
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SEC. 8. LABORATORY QUALITY AND SURVEILLANCE. 
Part A of title XI of the Public Health Service Act 
(42 U.S.C. 300b–1 et seq.), as amended by section 7, is 
further amended by adding at the end the following: 
‘‘SEC. 1113. LABORATORY QUALITY. 
‘‘(a) IN GENERAL.—The Secretary, acting through 
the Director of the Centers for Disease Control and Pre-
vention and in consultation with the Advisory Committee 
on Heritable Disorders in Newborns and Children estab-
lished under section 1111, shall provide for— 
‘‘(1) quality assurance for laboratories involved 
in screening newborns and children for heritable dis-
orders, including quality assurance for newborn- 
screening tests, performance evaluation services, and 
technical assistance and technology transfer to new-
born screening laboratories to ensure analytic valid-
ity and utility of screening tests; and 
‘‘(2) population-based pilot testing for new 
screening tools for evaluating use on a mass scale. 
‘‘(b) AUTHORIZATION OF APPROPRIATIONS.—For the 
purpose of carrying out this section, there are authorized 
to be appropriated $5,000,000 for fiscal year 2008 and 
such sums as may be necessary for each of the fiscal years 
2009 through 2012. 
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‘‘SEC. 1114. SURVEILLANCE PROGRAMS FOR HERITABLE 
DISORDERS SCREENING. 
‘‘(a) IN GENERAL.—The Secretary, acting through 
an Interagency Group consisting of the Director of the 
Agency for Healthcare Research and Quality, the Director 
of the Centers for Disease Control and Prevention, the Ad-
ministrator, and the Director of the National Institutes 
of Health, shall build upon existing activities and infra-
structure to carry out programs— 
‘‘(1) to collect, analyze, and make available data 
on the heritable disorders recommended by the Advi-
sory Committee on Heritable Disorders in Newborns 
and Children established under section 1111, includ-
ing data on the incidence and prevalence of, as well 
as poor health outcomes resulting from, such dis-
orders; 
‘‘(2) to operate regional centers for the conduct 
of applied epidemiological research on effective inter-
ventions for such disorders for the prevention of 
poor health outcomes; 
‘‘(3) to provide information and education to 
the public on effective interventions for the preven-
tion of poor health outcomes resulting from such dis-
orders; and 
‘‘(4) to conduct research on and to promote the 
prevention of poor health outcomes resulting from 
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such disorders, and secondary health conditions 
among individuals with such disorders. 
‘‘(b) GRANTS AND CONTRACTS.— 
‘‘(1) IN GENERAL.—In carrying out subsection 
(a), the Secretary may make grants to and enter 
into contracts with public and nonprofit private enti-
ties. 
‘‘(2) SUPPLIES
AND
SERVICES
IN
LIEU
OF 
AWARD FUNDS.— 
‘‘(A) IN GENERAL.—Upon the request of a 
recipient of an award of a grant or contract 
under paragraph (1), the Secretary may, sub-
ject to subparagraph (B), provide supplies, 
equipment, and services for the purpose of aid-
ing the recipient in carrying out the purposes 
for which the award is made and, for such pur-
poses, may detail to the recipient any officer or 
employee of the Department of Health and 
Human Services. 
‘‘(B) REDUCTION.—With respect to a re-
quest described in subparagraph (A), the Sec-
retary shall reduce the amount of payments 
under the award involved by an amount equal 
to the costs of detailing personnel and the fair 
market value of any supplies, equipment, or 
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services provided by the Secretary. The Sec-
retary shall, for the payment of expenses in-
curred in complying with such request, expend 
the amounts withheld. 
‘‘(3) APPLICATION FOR AWARD.—The Secretary 
may make an award of a grant or contract under 
paragraph (1) only if an application for the award 
is submitted to the Secretary and the application is 
in such form, is made in such manner, and contains 
such agreements, assurances, and information as the 
Secretary determines to be necessary to carry out 
the purposes for which the award is to be made. 
‘‘(c) REPORTS TO CONGRESS.— 
‘‘(1) IN GENERAL.—Subject to paragraph (2), 
the Secretary shall submit to the relevant commit-
tees of Congress reports— 
‘‘(A) containing information under para-
graph (1) that is specific to various racial, eth-
nic, and socioeconomic groups; 
‘‘(B) containing an assessment of the ex-
tent to which various approaches of preventing 
heritable disorders and secondary health condi-
tions among individuals with such disorders 
have been effective; 
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‘‘(C) describing the activities carried out 
under this section; 
‘‘(D) containing information on the inci-
dence and prevalence of individuals living with 
heritable disorders, information on the health 
status of individuals with such disorders includ-
ing the extent to which such disorders have con-
tributed to the incidence and prevalence of in-
fant mortality, information on any health dis-
parities experienced by such individuals, and 
recommendations for improving the health and 
wellness and quality of life of such individuals; 
‘‘(E) containing a summary of rec-
ommendations from all heritable disorders re-
search conferences sponsored by the Centers for 
Disease Control and Prevention; and 
‘‘(F) containing any recommendations of 
the Secretary regarding this section. 
‘‘(2) TIMING OF REPORTS.—The Secretary shall 
submit— 
‘‘(A) an interim report that includes the 
information described in paragraph (1), not 
later than 30 months after the date on which 
the first grant funds are awarded under this 
section; and 
VerDate Aug 31 2005 
20:59 Oct 23, 2007
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