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

  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
  
105th CONGRESS
  1st Session
                                 S. 419

_______________________________________________________________________

                                 AN ACT


 
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.--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 
1998 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 1998, $40,000,000 for fiscal year 1999, and such sums 
as may be necessary for each of the fiscal years 2000 and 2001.''.

            Passed the Senate June 12, 1997.

            Attest:

                                                             Secretary.
105th CONGRESS

  1st Session

                                 S. 419

_______________________________________________________________________

                                 AN ACT

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