[105th Congress Public Law 168]
[From the U.S. Government Printing Office]

[DOCID: f:publ168.105]

[[Page 112 STAT. 43]]

Public Law 105-168
105th Congress

                                 An Act

 To provide surveillance, research, and services aimed at prevention of 
  birth defects, and for other purposes. <<NOTE: Apr. 21, 1998 -  [S. 

    Be it enacted by the Senate and House of Representatives of the 
United States of America in <<NOTE: Birth Defects Prevention Act of 
1998.>>  Congress assembled,


    (a) Short Title.--This <<NOTE: 42 USC 201 note.>>  Act may be cited 
as the ``Birth Defects Prevention Act of 1998''.

    (b) Findings.--Congress <<NOTE: 42 USC 247b-4 note.>>  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 
            (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.


    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

[[Page 112 STAT. 44]]

        (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 <<NOTE: Public information.>>  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 
                    ``(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 <<NOTE: Establishment.>>  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

[[Page 112 STAT. 45]]

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 
    ``(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.''.

    Approved April 21, 1998.


                                                        Vol. 143 (1997):
                                    June 12, considered and passed 
                                                        Vol. 144 (1998):
                                    Mar. 10, considered and passed 
            Apr. 21, Presidential remarks.