I
103D CONGRESS
1ST SESSION
H. R. 1296
To provide surveillance, research, and services aimed at prevention of birth
defects.
IN THE HOUSE OF REPRESENTATIVES
MARCH 10, 1993
Mr. ORTIZ (for himself, Mr. SLATTERY, Mr. WILSON, Mr. EVANS, Mr. PAS-
TOR, Mr. GONZALEZ, Mr. TOWNS, Mr. MCDERMOTT, Mr. COLEMAN, Mr.
FILNER, Mr. TEJEDA, Ms. PELOSI, Mr. ROMERO-BARCELO´, Mr. DE LA
GARZA, Mr. GUTIERREZ, Mr. BLACKWELL, Mr. PICKLE, Mr. FROST, Mr.
DIXON, Mr. GENE GREEN of Texas, Mr. LIPINSKI, Mr. KREIDLER, Mr.
TORRES, and Mr. SERRANO) introduced the following bill; which was re-
ferred to the Committee on Energy and Commerce
AUGUST 2, 1993
Additional sponsors: Mr. HALL of Texas, Mrs. THURMAN, Mr. BROWN of
Ohio, Miss COLLINS of Michigan, Mr. GORDON, Mrs. CLAYTON, Mr.
CRAMER, Mr. HALL of Ohio, Mr. ROSE, Mr. HUGHES, Mr. MFUME, Mrs.
SCHROEDER, Mrs. LLOYD, Mrs. MORELLA, Mr. UPTON, Mr. LAUGHLIN,
Mr. BRYANT, Mr. OWENS, Mr. ACKERMAN, Mr. SARPALIUS, Mr. LEVIN,
Mr. EDWARDS of Texas, Mr. DOOLEY, Mr. INSLEE, Ms. EDDIE BERNICE
JOHNSON of Texas, Mr. PRICE of North Carolina, Mr. WYNN, Mr. RICH-
ARDSON, Mr. MENENDEZ, Mr. MARKEY, Mr. WASHINGTON, Mr. ROW-
LAND, and Mr. DELLUMS
A BILL
To provide surveillance, research, and services aimed at
prevention of birth defects.
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE; FINDINGS.
(a) SHORT TITLE.—This Act may be cited as the
‘‘Birth Defects Prevention Act of 1993’’.
(b) FINDINGS.—The Congress makes the following
findings:
(1) Birth defects are the leading cause of infant
mortality, directly responsible for one out of every
five infant deaths.
(2) Thousands of the 250,000 infants born with
a birth defect annually face a lifetime of chronic dis-
ability and illness.
(3) Birth defects threaten the lives of infants of
all racial and ethnic backgrounds. However, some
conditions pose excess risks for certain populations.
For example, compared to all infants born in the
United States, Hispanic-American infants are more
likely to be born with anencephaly spina bifida and
other neural tube defects and African-American in-
fants are more likely to be born with sickle-cell
anemia.
(4) Birth defects can be caused by exposure to
environmental hazards, adverse health conditions
during pregnancy, or genetic mutations. Prevention
efforts are slowed by lack of information about the
number and causes of birth defects. Outbreaks of
birth defects may go undetected because surveillance
and research efforts are underdeveloped and poorly
coordinated.
SEC. 2. BIRTH DEFECTS PREVENTION AND RESEARCH PRO-
GRAM.
Part B of title III of the Public Health Service Act
(42 U.S.C. 243 et seq.) is amended by inserting after sec-
tion 317A the following new section:
‘‘BIRTH DEFECTS PREVENTION AND RESEARCH
PROGRAMS
‘‘SEC. 317B. (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 FOR EXCELLENCE FOR BIRTH DE-
FECTS PREVENTION RESEARCH.—
‘‘(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
subgroups, non-Hispanic whites, African Americans, Na-
tive Americans, and Asian Americans.
‘‘(d) PREVENTION STRATEGIES.—The Secretary, act-
ing through the Director of the Centers for Disease Con-
trol, shall award grants to or enter into cooperative agree-
ments with State departments of health, universities, or
other private, or nonprofit entities to enable such entities
to develop, evaluate and implement prevention strategies
designed to reduce the incidence and effects or birth de-
fects including—
‘‘(1) demonstration projects for the prevention
of birth defects, including—
‘‘(A) at least one project aimed at enhanc-
ing prevention services in a ‘high-risk area’ that
has a proportion of birth to minority women
above the national average, is federally des-
ignated as a health professional shortage area,
and has a high incidence of one or more birth
defects; and
‘‘(B) at least one outcome research project
to study the effectiveness of infant interventions
aimed at amelioration of birth defects; and
‘‘(2) public information and education programs
for the prevention of birth defects, including but not
limited to programs aimed at prevention of alcohol
and illicit drug use during pregnancy and promotion
of use of folic acid vitamin supplements for women
of childbearing age in a manner which is sensitive to
the cultural and linguistic context of a given commu-
nity.
‘‘(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;
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 effects for grade GS–18.
‘‘(f) REPORT.—The Secretary shall prepare and sub-
mit to the Committee on Energy and Commerce of the
House of Representatives and the Committee on Labor
and Human Resources of the Senate a biennial report re-
garding the incidence of birth defects, the contribution of
birth defects to infant mortality, the outcome of implemen-
tation of prevention strategies, and identified needs for re-
search and policy development to include information re-
garding the various racial and ethnic groups, including
Hispanic, non-Hispanic whites, African Americans, Native
Americans, and Asian Americans.
‘‘(g) 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 1994,
$20,000,000 for fiscal year 1995, and such sums as
may be necessary for each of the fiscal years 1996
and 1997.
‘‘(2) For the purpose of carrying out subsection
(d), there are authorized to be appropriated
$15,000,000 for fiscal year 1994, $20,000,000 for
fiscal year 1995, and such sums as may be nec-
essary for each of the fiscal years 1996 and 1997.
‘‘(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
1994 through 1997.’’.
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