[United States Statutes at Large, Volume 117, 108th Congress, 1st Session]
[From the U.S. Government Publishing Office, www.gpo.gov]

117 STAT. 1933]]

Public Law 108-154
108th Congress

An Act


 
To revise and extend the [NOTE: Dec. 3, 2003 -  [S. 286]] Birth
Defects Prevention Act of 1998.

Be it enacted by the Senate and House of [NOTE: Birth Defects and
Developmental Disabilities Prevention Act of 2003.] Representatives of
the United States of America in Congress assembled,

SECTION 1. [NOTE: 42 USC 201 note.] SHORT TITLE.

This Act may be cited as the ``Birth Defects and Developmental
Disabilities Prevention Act of 2003''.
SEC. 2. NATIONAL CENTER ON BIRTH DEFECTS AND DEVELOPMENTAL
DISABILITIES.

Section 317C of the Public Health Service Act (42 U.S.C. 247b-4) is
amended--
(1) in subsection (a)(2)--
(A) in subparagraph (A)--
(i) by striking ``and developmental
disabilities'' and inserting ``, developmental
disabilities, and disabilities and health''; and
(ii) by striking ``subsection (d)(2)'' and
inserting ``subsection (c)(2)'';
(B) in subparagraph (B), by striking ``and'' at the
end;
(C) in subparagraph (C), by striking the period and
inserting a semicolon; and
(D) by adding at the end the following:
``(D) to conduct research on and to promote the
prevention of such defects and disabilities, and
secondary health conditions among individuals with
disabilities; and
``(E) to support a National Spina Bifida Program to
prevent and reduce suffering from the Nation's most
common permanently disabling birth defect.'';
(2) by striking subsection (b);
(3) in subsection (d)--
(A) by striking paragraph (1) and inserting the
following:
``(1) contains information regarding the incidence and
prevalence of birth defects, developmental disabilities, and the
health status of individuals with disabilities and the extent to
which these conditions have contributed to the incidence and
prevalence of infant mortality and affected quality of life;'';
(B) in paragraph (3), by inserting ``, developmental
disabilities, and secondary health conditions among
individuals with disabilities'' after ``defects'';
(C) in paragraph (4), by striking ``and'' at the
end;
(D) by redesignating paragraph (5) as paragraph (7);
and

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(E) by inserting after paragraph (4) the following:
``(5) contains information on the incidence and prevalence
of individuals living with birth defects and disabilities or
developmental disabilities, information on the health status of
individuals with disabilities, information on any health
disparities experienced by such individuals, and recommendations
for improving the health and wellness and quality of life of
such individuals;
``(6) contains a summary of recommendations from all birth
defects research conferences sponsored by the Centers for
Disease Control and Prevention, including conferences related to
spina bifida; and'';
(4) by redesignating subsections (c), (d), and (e) as
subsections (b), (c), and (d), respectively;
(5) by inserting after subsection (d) (as so redesignated),
the following:

``(e) Advisory Committee.--Notwithstanding any other provision of
law, the members of the advisory committee appointed by the Director of
the National Center for Environmental Health that have expertise in
birth defects, developmental disabilities, and disabilities and health
shall be transferred to and shall advise the National Center on Birth
Defects and Developmental Disabilities effective on the date of
enactment of the Birth Defects and Developmental Disabilities Prevention
Act of 2003.''; and
(6) in subsection (f), by striking ``$30,000,000'' and all
that follows and inserting ``such sums as may be necessary for
each of fiscal years 2003 through 2007.''.
SEC. 3. TECHNICAL CORRECTIONS FOR STATE COUNCILS ON DEVELOPMENTAL
DISABILITIES.

(a) In General.--Section 122(a) of the Developmental Disabilities
Assistance and Bill of Rights Act of 2000 (42 U.S.C. 15022(a)) is
amended--
(1) in paragraph (3)(A)(ii), by inserting before the period
the following: ``, the amount received by the State for the
previous year, or the amount of Federal appropriations received
in fiscal year 2000, 2001, or 2002, whichever is greater''; and
(2) in paragraph (4)(A)(ii), by inserting before the period
the following: ``, the amount received by the State for the
previous year, or the amount of Federal appropriations received
in fiscal year 2000, 2001, or 2002, whichever is greater''.

(b) Effective [NOTE: Applicability. 42 USC 15022 note.] Date.--The
amendments made by subsection (a) shall take effect on October 1, 2003
and apply to allotments beginning in fiscal year 2004.

SEC. 4. [NOTE: Deadline. 42 USC 247b-4b note.] REPORT ON SURVEILLANCE
ACTIVITIES.

Not later than 18 months after the date of enactment of this Act,
the Secretary of Health and Human Services jointly with the Secretary of
Education shall submit to the Committee on Health, Education, Labor, and
Pensions of the Senate and the Committee on Energy and Commerce and
Committee on Education and the Workforce of the House of Representatives
a report concerning surveillance activities under section 102 of the
Children's Health Act of 2000 (Public Law 106-310), specifically
including--
(1) a description of the current grantees under the National
Autism and Pervasive Developmental Disabilities Surveillance
Program and the Centers of Excellence in Autism and Pervasive
Developmental Disabilities, the data collected, analyzed, and

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reported under such grants, the sources of such data, and
whether such data was obtained with parental consent as required
under the Family Educational Rights and Privacy Act of 1974 (20
U.S.C. 1232g);
(2) a description of current sources of data for the
surveillance of autism and developmental disabilities and the
methods for obtaining such data, including whether such data was
obtained with parental or patient consent for disclosure;
(3) an analysis of research on autism and developmental
disabilities with respect to the methods of collection and
reporting, including whether such research was obtained with
parental or patient consent for disclosure;
(4) an analysis of the need to add education records in the
surveillance of autism and other developmental disabilities,
including the methodological and medical necessity for such
records and the rights of parents and patients in the use of
education records (in accordance with the Family Educational
Rights and Privacy Act of 1974);
(5) a description of the efforts taken by the Centers for
Disease Control and Prevention to utilize education records in
conducting the surveillance program while obtaining parental or
patient consent for such education records, including the
outcomes of such efforts;
(6) a description of the challenges provided to obtaining
education records (in the absence of parental or patient
consent) for the purpose of obtaining additional surveillance
data for autism and other developmental disabilities; and
(7) a description of the manner in which such challenges can
be overcome, including efforts to educate parents, increase
confidence in the privacy of the surveillance program, and
increase the rate of parental or patient consent, and including
specific quantitative and qualitative justifications for any
recommendations for changes to existing statutory authority,
including the Family Educational Rights and Privacy Act of 1974.

Approved December 3, 2003.

LEGISLATIVE HISTORY--S. 286 (H.R. 398):
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HOUSE REPORTS: No. 108-14 accompanying H.R. 398 (Comm. on Energy and
Commerce).
SENATE REPORTS: No. 108-188 (Comm. on Health, Education, Labor, and
Pensions).
CONGRESSIONAL RECORD, Vol. 149 (2003):
Nov. 11, considered and passed Senate.
Nov. 19, 20, considered and passed House.