[Congressional Bills 104th Congress]
[From the U.S. Government Publishing Office]
[S. 459 Introduced in Senate (IS)]

  1st Session
                                 S. 459

To provide surveillance, research, and services aimed at prevention of 
                 birth defects, and for other purposes.


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                           February 22, 1995

   Mr. Bond 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, and for other purposes.

    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 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 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 317D the following new 
section:

            ``birth defects prevention and research programs

    ``Sec. 317E. (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) Applicability of Privacy Laws.--The provisions 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 section.
    ``(h) 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 1996, $20,000,000 for fiscal year 1997, and 
        such sums as may be necessary for each of the fiscal years 1998 
        and 1999.
            ``(2) For the purpose of carrying out subsection (d), there 
        are authorized to be appropriated $15,000,000 for fiscal year 
        1996, $20,000,000 for fiscal year 1997, and such sums as may be 
        necessary for each of the fiscal years 1998 and 1999.
            ``(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 1996 through 1999.''.
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