[Congressional Bills 105th Congress]
[From the U.S. Government Publishing Office]
[S. 419 Introduced in Senate (IS)]







105th CONGRESS
  1st Session
                                 S. 419

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


_______________________________________________________________________


                   IN THE SENATE OF THE UNITED STATES

                             March 11, 1997

  Mr. Bond (for himself, Mr. Lott, Mr. Hollings, Mr. Hutchinson, Mr. 
 Cochran, Mr. Kohl, Mr. Inouye, Mr. Moynihan, Mr. Chafee, Mr. Daschle, 
   Mr. Breaux, Mr. Helms, Mr. Wyden, Mr. Kerrey, Mr. Faircloth, Ms. 
 Moseley-Braun, Mr. Bingaman, and Mr. Dorgan) 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 1997''.
    (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 150,000 infants born with a serious 
        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 317F the following:

            ``birth defects prevention and research programs

    ``Sec. 317G. (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 of 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 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 Birth Defects Prevention 
        Research 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.--
            ``(1) In general.--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--
                    ``(A) demonstration projects for the prevention of 
                birth defects, including--
                            ``(i) 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
                            ``(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 programs for 
                the prevention of birth defects, including 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 programs under this 
        subsection, the Secretary, acting through the Centers for 
        Disease Control and Prevention, shall consult with State and 
        local governmental agencies, managed care organizations, 
        nonprofit organizations, physicians, and other health 
        professionals 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 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 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 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 
        necessary for each of the fiscal years 2000 and 2001.
            ``(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 1998 through 2001.''.
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