[Congressional Bills 103th Congress]
[From the U.S. Government Publishing Office]
[S. 917 Introduced in Senate (IS)]
103d CONGRESS
1st Session
S. 917
To provide surveillance, research, and services aimed at prevention of
birth defects.
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
May 6 (legislative day, April 19), 1993
Mr. Bond (for himself and Mr. Dodd) introduced the following bill;
which was read twice and referred to the Committee on Labor and Human
Resources
_______________________________________________________________________
A BILL
To provide surveillance, research, and services aimed at prevention of
birth defects.
Be it enacted by the Senate and House of Representatives 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 disability 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
infants 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 PROGRAM.
Part B of title III of the Public Health Service Act (42 U.S.C. 243
et seq.) is amended by inserting after section 317A the following new
section:
``birth defects prevention and research programs
``Sec. 317B. (a) National Birth Defects Surveillance 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 political 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 Defects Prevention
Research.--
``(1) In general.--The Secretary shall establish 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 information 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 Excellence 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 containing such information as the
Secretary may prescribe, 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 ethnic 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 developed
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, Native
Americans, and Asian Americans.
``(d) Prevention Strategies.--The Secretary, acting through the
Director of the Centers for Disease Control, shall award grants to or
enter into cooperative agreements 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 defects
including--
``(1) demonstration projects for the prevention of birth
defects, including--
``(A) at least one project aimed at enhancing
prevention services in a `high-risk area' that has a
proportion of birth to minority women above the
national average, is federally designated 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
community.
``(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 amelioration of birth defects to the Secretary
and the Director of the Centers for Disease Control.
``(2) Functions.--With respect to birth defects prevention,
the Committee shall--
``(A) make recommendations regarding prevention
research and intervention priorities;
``(B) study and recommend ways to prevent 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 addressing birth defects
disparities among the major Hispanic subgroups, non-
Hispanic whites, African 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 Secretary, including--
``(A) four health professionals, who are not
employees of the United States, who have expertise in
issues related to prevention of or care for children
with birth defects;
``(B) two representatives from health professional
associations;
``(C) four representatives from voluntary health
agencies concerned with conditions leading 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 defects; and
``(E) representatives of the Public Health Service
agencies involved in birth defects research and
prevention programs and representatives of other
appropriate Federal agencies, including 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 Committee
regarding Federal agency policies and practices;
``(4) Structure.--
``(A) Term of office.--Appointed members 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
Secretary.
``(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 employees of the Federal Government shall be
compensated at a rate not to exceed the daily
equivalent of the rate in effect for grade GS-18.
``(f) Report.--The Secretary shall prepare and submit 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 regarding the incidence of birth defects, the contribution of
birth defects to infant mortality, the outcome of implementation of
prevention strategies, and identified needs for research and policy
development to include information regarding 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 subsections (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
necessary for each of the fiscal years 1996 and 1997.
``(3) For the purpose of carrying out subsections (e) and
(f), there are authorized to be appropriated $2,000,000 for
each of the fiscal years 1994 through 1997.''.
<all>