Medical Privacy • Dec 1969 • Patient Privacy

Birth Defects Prevention Act

[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. 419]>>
 
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,
 
SECTION 1. SHORT TITLE; FINDINGS.
 
(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 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:
 
``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 <<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
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 <<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
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.
 
LAW SPECIFICS:
 
42 U.S.C.247b-4
Public Law 105-168
Amends Section 317c of the Public Health Services Act
S. 419 (Senator Bond)
Introduced 3/17/97
Passed 4/21/98
 
SUMMARY (From Library of Congress):
 
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 incarrying 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.
 
 
SENATE CO-SPONSORS AND DATE OF SIGN-ON
 
Sen Lott - 03/11/97
Sen Hollings - 03/11/97
Sen Hutchinson - 03/11/97
Sen Cochran - 03/11/97
Sen Kohl - 03/11/97
Sen Inouye - 03/11/97
Sen Moynihan - 03/11/97
Sen Chafee - 03/11/97
Sen Daschle - 03/11/97
Sen Breaux - 03/11/97
Sen Helms - 03/11/97
Sen Wyden - 03/11/97
Sen Kerrey - 03/11/97
Sen Faircloth - 03/11/97
Sen Moseley-Braun - 03/11/97
Sen Bingaman - 03/11/97
Sen Dorgan - 03/11/97
Sen Durbin - 03/13/97
Sen Lugar - 03/13/97
Sen Baucus - 03/17/97
Sen Kerry - 03/17/97
Sen Conrad - 03/17/97
Sen Ford - 04/07/97
Sen Landrieu - 04/08/97
Sen Glenn - 04/17/97
Sen Murray - 04/22/97
Sen Murkowski - 05/05/97
Sen Levin - 05/15/97
Sen Rockefeller - 05/21/97
Sen Abraham - 06/10/97
Sen Dodd - 06/10/97
Sen Kennedy - 06/11/97
Sen Craig - 06/12/97
Sen Hutchison - 06/12/97