I
104TH CONGRESS
1ST SESSION
H. R. 1010
To provide surveillance, research, and services aimed at prevention of birth
defects, and for other purposes.
IN THE HOUSE OF REPRESENTATIVES
FEBRUARY 22, 1995
Mr. ORTIZ (for himself, Mr. BONILLA, Mr. BRYANT of Texas, Mr. FIELDS of
Texas, Mrs. MORELLA, Mr. TOWNS, and Mr. UPTON) introduced the fol-
lowing bill; which was referred to the Committee on Commerce
A BILL
To provide surveillance, research, and services aimed at
prevention of birth defects, and for other purposes.
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 1995’’.
(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 ane-
mia.
(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 317D the following new section:
‘‘(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 of 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;
‘‘(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-