S. 286 

One Hundred Eighth Congress 

of the 

United States of America 

AT THE FIRST SESSION 

Begun and held at the City of Washington on Tuesday, 

the seventh day of January, two thousand and three 

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 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 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 


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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. 

Speaker of the House of Representatives. 

Vice President of the United States and

President of the Senate. 


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