Birth Defects Prevention Act of 1998

Summary: Birth Defects Prevention Act of 1997 - Amends the Public Health Service Act to direct the Secretary of Health and Human Services (HHS), acting through the Director of the Centers for Disease Control and Prevention, to carry out programs to:  (1) collect and analyze, and make available data on birth defects in a manner that facilitates compliance with this Act, including data on the causes of such defects and on the incidence and prevalence of such defects; (2) operate regional centers for the conduct of applied epidemiological research on the prevention of such defects; and (3) provide information and education to the public on the prevention of such defects.    Requires the Secretary, in collecting, analyzing, and making available data on birth defects, to:  (1) collect and analyze data by gender and by racial and ethnic group; (2) collect such data from birth and death certificates, hospital records, and such other sources as the Secretary determines to be appropriate; and (3) encourage States to establish or improve programs for the collection and analysis of epidemiological data on birth defects and to make the data available. Directs the Secretary to establish a National Information Clearinghouse on Birth Defects to collect and disseminate to health professionals and the public information on birth defects, including the prevention of such defects. Authorizes the Secretary, in carrying out programs regarding birth defects, to make grants to and enter into contracts with public and nonprofit private entities.  Authorizes the Secretary, upon the request of a recipient of an award of a grant or contract, to provide supplies, equipment, and services for the purpose of aiding the recipient in carrying out the purposes for which the award is made and, for such purposes, to detail to the recipient any HHS officer or employee. Authorizes the Secretary to make an award of a grant or contract only if an application for the award is submitted to the Secretary and the application is in such form, is made in such manner, and contains such agreements, assurances, and information as the Secretary determines to be necessary to carry out the purposes for which the award is to be made. Requires the Secretary to report biennially to the House Committee on Commerce and the Senate Committee on Labor and Human Resources regarding birth defects. Subjects the provisions of this Act to requirements of the Privacy Act.  Applies all Federal laws relating to the privacy of information to data and information collected under this Act. Authorizes appropriations.

SECTION 1. SHORT TITLE; FINDINGS.

    (a) Short Title.--This Act may be cited as the ``Birth Defects 
Prevention Act of 1998''.
    (b) Findings.--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.
        (5) Public awareness strategies, such as programs using folic 
    acid vitamin supplements to prevent spina bifida and alcohol 
    avoidance programs to prevent Fetal Alcohol Syndrome, are essential 
    to prevent the heartache and costs associated with birth defects.

SEC. 2. PROGRAMS REGARDING BIRTH DEFECTS.

    Section 317C of the Public Health Service Act (42 U.S.C. 247b-4) is 
amended to read as follows:


                    ``programs regarding birth defects

    ``Sec. 317C. (a) In General.--The Secretary, acting through the 
Director of the Centers for Disease Control and Prevention, shall carry 
out programs--
        ``(1) to collect, analyze, and make available data on birth 
    defects (in a manner that facilitates compliance with subsection 
    (d)(2)), including data on the causes of such defects and on the 
    incidence and prevalence of such defects;
        ``(2) to operate regional centers for the conduct of applied 
    epidemiological research on the prevention of such defects; and
        ``(3) to provide information and education to the public on the 
    prevention of such defects.
    ``(b) Additional Provisions Regarding Collection of Data.--
        ``(1) In general.--In carrying out subsection (a)(1), the 
    Secretary--
            ``(A) shall collect and analyze data by gender and by 
        racial and ethnic group, including Hispanics, non-Hispanic 
        whites, Blacks, Native Americans, Asian Americans, and Pacific 
        Islanders;
            ``(B) shall collect data under subparagraph (A) from birth 
        certificates, death certificates, hospital records, and such 
        other sources as the Secretary determines to be appropriate; 
        and
            ``(C) shall encourage States to establish or improve 
        programs for the collection and analysis of epidemiological 
        data on birth defects, and to make the data available.
        ``(2) National clearinghouse.--In carrying out subsection 
    (a)(1), the Secretary shall establish and maintain a National 
    Information Clearinghouse on Birth Defects to collect and 
    disseminate to health professionals and the general public 
    information on birth defects, including the prevention of such 
    defects.
    ``(c) Grants and Contracts.--
        ``(1) In general.--In carrying out subsection (a), the 
    Secretary may make grants to and enter into contracts with public 
    and nonprofit private entities.
        ``(2) Supplies and services in lieu of award funds.--
            ``(A) Upon the request of a recipient of an award of a 
        grant or contract under paragraph (1), the Secretary may, 
        subject to subparagraph (B), provide supplies, equipment, and 
        services for the purpose of aiding the recipient in carrying 
        out the purposes for which the award is made and, for such 
        purposes, may detail to the recipient any officer or employee 
        of the Department of Health and Human Services.
            ``(B) With respect to a request described in subparagraph 
        (A), the Secretary shall reduce the amount of payments under 
        the award involved by an amount equal to the costs of detailing 
        personnel and the fair market value of any supplies, equipment, 
        or services provided by the Secretary. The Secretary shall, for 
        the payment of expenses incurred in complying with such 
        request, expend the amounts withheld.
        ``(3) Application for award.--The Secretary may make an award 
    of a grant or contract under paragraph (1) only if an application 
    for the award is submitted to the Secretary and the application is 
    in such form, is made in such manner, and contains such agreements, 
    assurances, and information as the Secretary determines to be 
    necessary to carry out the purposes for which the award is to be 
    made.
    ``(d) Biennial Report.--Not later than February 1 of fiscal year 
1999 and of every second such year thereafter, the Secretary shall 
submit to the Committee on Commerce of the House of Representatives, 
and the Committee on Labor and Human Resources of the Senate, a report 
that, with respect to the preceding 2 fiscal years--
        ``(1) contains information regarding the incidence and 
    prevalence of birth defects and the extent to which birth defects 
    have contributed to the incidence and prevalence of infant 
    mortality;
        ``(2) contains information under paragraph (1) that is specific 
    to various racial and ethnic groups (including Hispanics, non-
    Hispanic whites, Blacks, Native Americans, and Asian Americans);
        ``(3) contains an assessment of the extent to which various 
    approaches of preventing birth defects have been effective;
        ``(4) describes the activities carried out under this section; 
    and
        ``(5) contains any recommendations of the Secretary regarding 
    this section.
    ``(e) 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.
    ``(f) Authorization of Appropriations.--For the purpose of carrying 
out this section, there are authorized to be appropriated $30,000,000 
for fiscal year 1999, $40,000,000 for fiscal year 2000, and such sums 
as may be necessary for each of the fiscal years 2001 and 2002.''.

                               Speaker of the House of Representatives.

                            Vice President of the United States and    
                                               President of the Senate.