article: 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.''.
summary: 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.