Birth Defects and Developmental Disabilities Prevention Act of 2003
PL 108-154 (S.286), enacted 12/03/2003

117 STAT. 1933
PUBLIC LAW 108–154—DEC. 3, 2003
Public Law 108–154
108th Congress
An Act
To revise and extend the Birth Defects Prevention Act of 1998.
Be it enacted by the Senate and House of Representatives of
the United States of America in Congress assembled,
SECTION 1. 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 DEVELOP-
MENTAL 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 preven-
tion 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 fol-
lowing:
‘‘(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 individ-
uals with disabilities’’ after ‘‘defects’’;
(C) in paragraph (4), by striking ‘‘and’’ at the end;
(D) by redesignating paragraph (5) as paragraph (7);
and
42 USC 201 note.
Birth Defects and
Developmental
Disabilities
Prevention Act of
2003.
Dec. 3, 2003
[S. 286]
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117 STAT. 1934
PUBLIC LAW 108–154—DEC. 3, 2003
(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 recommenda-
tions 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 Dis-
ease Control and Prevention, including conferences related to
spina bifida; and’’;
(4) by redesignating subsections (c), (d), and (e) as sub-
sections (b), (c), and (d), respectively;
(5) by inserting after subsection (d) (as so redesignated),
the following:
‘‘(e) ADVISORY COMMITTEE.—Notwithstanding any other provi-
sion 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 Disabil-
ities 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 Disabil-
ities 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 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. 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
Deadline.
42 USC 247b–4b
note.
Applicability.
42 USC 15022
note.
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117 STAT. 1935
PUBLIC LAW 108–154—DEC. 3, 2003
LEGISLATIVE HISTORY—S. 286 (H.R. 398):
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 Pen-
sions).
CONGRESSIONAL RECORD, Vol. 149 (2003):
Nov. 11, considered and passed Senate.
Nov. 19, 20, considered and passed House.
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 surveil-
lance 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 rec-
ommendations for changes to existing statutory authority,
including the Family Educational Rights and Privacy Act of
1974.
Approved December 3, 2003.
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