‘‘BIRTH DEFECTS PREVENTION AND RESEARCH
PROGRAMS
‘‘SEC. 317G. (a) NATIONAL BIRTH DEFECTS SUR-
VEILLANCE PROGRAM.—The Secretary, acting through
the Director of the Centers for Disease Control, may
award grants to, enter into cooperative agreements with,
or provide direct technical assistance in lieu of cash to
States, State health authorities, or health agencies of po-
litical subdivisions of a State for collection, analysis, and
reporting of birth defects statistics from birth certificates,
infant death certificates, hospital records, or other sources
and to collect and disaggregate such statistics by gender
and racial and ethnic group.
‘‘(b) CENTERS OF BIRTH DEFECTS PREVENTION RE-
SEARCH.—
‘‘(1) IN GENERAL.—The Secretary shall estab-
lish at least five regional birth defects monitoring
and research programs for the purpose of collecting
and analyzing information on the number, incidence,
correlates, and causes of birth defects, to include in-
formation regarding gender and different racial and
ethnic groups, including Hispanics, non-Hispanic
whites, African Americans, Native Americans, and
Asian Americans.
‘‘(2) AUTHORITY FOR AWARDS.—For purposes
of paragraph (1), the Secretary, acting through the
Director of the Centers for Disease Control, may
award grants or enter into cooperative agreements
with State departments of health, universities, or
other private, nonprofit entities engaged in research
to enable such entities to serve as Centers of Excel-
lence for Birth Defects Prevention Research.
‘‘(3) APPLICATION.—To be eligible for grants
or cooperative agreements under paragraph (2), the
entity shall prepare and submit to the Secretary an
application at such time, in such manner and con-
taining such information as the Secretary may pre-
scribe, including assurances that—
‘‘(A) the program will collect, analyze, and
report birth defects data according to guidelines
prescribed by the Director of the Centers for
Disease Control;
‘‘(B) the program will coordinate States
birth defects surveillance and prevention efforts
within a region;
‘‘(C) education, training, and clinical skills
improvement for health professionals aimed at
the prevention and control of birth defects will
be included in the program activities;
‘‘(D) development and evaluation of birth
defects prevention strategies will be included in
the program activities, as appropriate; and
‘‘(E) the program funds will not be used to
supplant or duplicate State efforts.
‘‘(4) CENTERS TO FOCUS ON RACIAL AND ETH-
NIC DISPARITIES IN BIRTH DEFECTS.—One of the
Centers of Excellence shall focus on birth defects
among ethnic minorities, and shall be located in a
standard metropolitan statistical area that has over
a 60 percent ethnic minority population, is federally
designated as a health professional shortage area,
and has an incidence of one or more birth defects
more than four times the national average.
‘‘(c) CLEARINGHOUSE.—The Centers for Disease
Control shall serve as the coordinating agency for birth
defects prevention activities through establishment of a
clearinghouse for the collection and storage of data and
generated from birth defects monitoring programs devel-
oped under subsections (a) and (b). Functions of such
clearinghouse shall include facilitating the coordination of
research and policy development to prevent birth defects.
The clearinghouse shall disaggregate data by gender and
by racial and ethnic groups, the major Hispanic sub-
groups, non-Hispanic whites, African Americans, Native
Americans, and Asian Americans.
‘‘(d) PREVENTION STRATEGIES.—
‘‘(1) IN
GENERAL.—The Secretary, acting
through the Director of the Centers for Disease
Control, shall award grants to or enter into coopera-
tive agreements with State departments of health,
universities, or other private, or nonprofit entities to
enable such entities to develop, evaluate and imple-
ment prevention strategies designed to reduce the in-
cidence and effects or birth defects including—
‘‘(A) demonstration projects for the pre-
vention of birth defects, including—
‘‘(i) at least one project aimed at en-
hancing prevention services in a ‘high-risk
area’ that has a proportion of birth to mi-
nority women above the national average,
is federally designated as a health profes-
sional shortage area, and has a high inci-
dence of one or more birth defects; and
‘‘(ii) at least one outcome research
project to study the effectiveness of infant
interventions aimed at amelioration of
birth defects; and
‘‘(B) public information and education pro-
grams for the prevention of birth defects, in-
cluding but not limited to programs aimed at
educating women on the need to consume the
daily 
amount 
of 
folic 
acid 
(pteroylmon
oglutomic acid) as recommended by the Public
Health Service and preventing alcohol and illicit
drug use during pregnancy in a manner which
is sensitive to the cultural and linguistic context
of a given community.
‘‘(2) CONSULTATION.—In carrying out pro-
grams under this subsection, the Secretary, acting
through the Centers for Disease Control and Preven-
tion, shall consult with State and local governmental
agencies, managed care organizations, nonprofit or-
ganizations, physicians, and other health profes-
sionals and organizations.
‘‘(e) ADVISORY COMMITTEE.—
‘‘(1) ESTABLISHMENT
OF
COMMITTEE.—The
Secretary shall establish an Advisory Committee for
Birth Defects Prevention (in this subsection referred
to as the ‘Committee’). The Committee shall provide
advice and recommendations on prevention and ame-
lioration of birth defects to the Secretary and the
Director of the Centers for Disease Control.
‘‘(2) FUNCTIONS.—With respect to birth de-
fects prevention, the Committee shall—
‘‘(A) make recommendations regarding
prevention research and intervention priorities;
‘‘(B) study and recommend ways to pre-
vent birth defects, with emphasis on emerging
technologies;
‘‘(C) identify annually the important areas
of government and nongovernment cooperation
needed to implement prevention strategies;
‘‘(D) identify research and prevention
strategies which would be successful in address-
ing birth defects disparities among the major
Hispanic subgroups, non-Hispanic whites, Afri-
can Americans, Native Americans, and Asian
Americans; and
‘‘(E) review and recommend policies and
guidance related to birth defects research and
prevention.
‘‘(3) COMPOSITION.—The Committee shall be
composed of 15 members appointed by the Sec-
retary, including—
‘‘(A) four health professionals, who are not
employees of the United States, who have ex-
pertise in issues related to prevention of or care
for children with birth defects;
‘‘(B) two representatives from health pro-
fessional associations;
‘‘(C) four representatives from voluntary
health agencies concerned with conditions lead-
ing to birth defects or childhood disability;
‘‘(D) five members of the general public, of
whom at least three shall be parents of children
with birth defects or persons having birth de-
fects; and
‘‘(E) representatives of the Public Health
Service agencies involved in birth defects re-
search and prevention programs and represent-
atives of other appropriate Federal agencies, in-
cluding but not limited to the Department of
Education and the Environmental Protection
Agency, shall be appointed as ex officio, liaison
members for purposes of informing the Com-
mittee regarding Federal agency policies and
practices;
‘‘(4) STRUCTURE.—
‘‘(A) TERM OF OFFICE.—Appointed mem-
bers of the Committee shall be appointed for a
term of office of 3 years, except that of the
members first appointed, 5 shall be appointed
for a term of 1 year, 5 shall be appointed for
a term of 2 years, and 5 shall be appointed for
a term of 3 years, as determined by the Sec-
retary.
‘‘(B) MEETINGS.—The Committee shall
meet not less than three times per year and at
the call of the chair.
‘‘(C) COMPENSATION.—Members of the
Committee who are employees of the Federal
Government shall serve without compensation.
Members of the Committee who are not employ-
ees of the Federal Government shall be com-
pensated at a rate not to exceed the daily equiv-
alent of the rate in effect for grade GS–18.
‘‘(f) REPORT.—The Secretary shall prepare and sub-
mit to the Committee on Commerce of the House of Rep-
resentatives and the Committee on Labor and Human Re-
sources of the Senate a biennial report regarding the inci-
dence of birth defects, the contribution of birth defects to
infant mortality, the outcome of implementation of preven-
tion strategies, and identified needs for research and pol-
icy development to include information regarding the var-
ious racial and ethnic groups, including Hispanic, non-
Hispanic whites, African Americans, Native Americans,
and Asian Americans.
‘‘(g) APPLICABILITY OF PRIVACY LAWS.—The provi-
sions of this section shall be subject to the requirements
of section 552a of title 5, United States Code. All Federal
laws relating to the privacy of information shall apply to
the data and information that is collected under this sec-
tion.
‘‘(h) AUTHORIZATION OF APPROPRIATIONS.—
‘‘(1) For the purpose of carrying out sub-
sections (a), (b), and (c), there are authorized to be
appropriated $15,000,000 for fiscal year 1998,
$20,000,000 for fiscal year 1999, and such sums as
may be necessary for each of the fiscal years 2000
and 2001.
‘‘(2) For the purpose of carrying out subsection
(d), there are authorized to be appropriated
$15,000,000 for fiscal year 1998, $20,000,000 for
fiscal year 1999, and such sums as may be nec-
essary for each of the fiscal years 2000 and 2001.
‘‘(3) For the purpose of carrying out sub-
sections (e) and (f), there are authorized to be ap-
propriated $2,000,000 for each of the fiscal years
1998 through 2001.’’.
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