Appendix A3 Birth Defects Prevention Act of 1998

Appendix A3 Birth Defects Prevention Act of 1998.pdf

Qualitative Assessment of Mothers' Attitudes Toward Collecting Biological Specimens to Study Risk Factors for Birth Defects and Preterm Delivery in the National Birth Defects Prevention Study

Appendix A3 Birth Defects Prevention Act of 1998

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PUBLIC LAW 105–168—APR. 21, 1998

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.

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 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

Apr. 21, 1998
[S. 419]
Birth Defects
Prevention Act of
1998.
42 USC 201 note.
42 USC 247b–4
note.

112 STAT. 44

Public
information.

Establishment.

PUBLIC LAW 105–168—APR. 21, 1998
(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

PUBLIC LAW 105–168—APR. 21, 1998
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.’’.
Approved April 21, 1998.

LEGISLATIVE HISTORY—S. 419:
CONGRESSIONAL RECORD:
Vol. 143 (1997): June 12, considered and passed Senate.
Vol. 144 (1998): Mar. 10, considered and passed House.
WEEKLY COMPILATION OF PRESIDENTIAL DOCUMENTS, Vol. 34 (1998):
Apr. 21, Presidential remarks.

Æ

112 STAT. 45


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