text: 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.''.
target: Birth Defects Prevention Act of 1993 - Amends the Public Health Service Act to establish birth defects prevention and research programs. 
  Authorizes the Secretary of Health and Human Services, acting through the Director of the Centers for Disease Control (CDC), to provide 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. 
  Directs the Secretary to establish at least five regional birth defects monitoring and research programs to collect and analyze information on the number, incidence, correlation, and causes of birth defects.  Authorizes the Secretary, acting through the Director of CDC, to award grants or enter into cooperative agreements with specified entities to serve as Centers of Excellence for Birth Defects Prevention Research. Requires one of the Centers to focus on birth defects among ethnic minorities. 
  Requires the CDC to establish a clearinghouse for the collection and storage of data generated from birth defects monitoring programs developed under this Act. 
  Directs the Secretary, acting through the Director of the CDC, to provide for the evaluation, and implementation of prevention strategies designed to reduce the incidence and effects of birth defects. 
  Directs the Secretary to establish an Advisory Committee for Birth Defects Prevention. 
  Requires the Secretary to report biennially to the House Committee on Energy and Commerce and the Senate Committee on Labor and Human Resources regarding birth defects. 
  Authorizes appropriations.
feat_title: Birth Defects Prevention Act of 1993