II 

Calendar No. 369

108TH CONGRESS 

1ST SESSION S. 286

[Report No. 108–188] 

To revise and extend the Birth Defects Prevention Act of 1998. 

IN THE SENATE OF THE UNITED STATES 

FEBRUARY 4, 2003

Mr. BOND (for himself, Mr. DODD, Mr. FRIST, Mr. KENNEDY, Mr. DEWINE, 

Ms. LANDRIEU, and Mr. SMITH) introduced the following bill; which was 

read twice and referred to the Committee on Health, Education, Labor, 

and Pensions 

NOVEMBER 6, 2003

Reported by Mr. GREGG, with an amendment 

[Strike out all after the enacting clause and insert the part printed in italic] 

A BILL

To revise and extend the Birth Defects Prevention Act of 

1998.

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled,

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Birth Defects and De5 velopmental Disabilities Prevention Act of 2003’’. 
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1 SEC. 2. NATIONAL CENTER ON BIRTH DEFECTS AND DE2 VELOPMENTAL DISABILITIES. 

3 Section 317C of the Public Health Service Act (42 

4 U.S.C. 247b–4) is amended—

5 (1) in subsection (a)(2)—

6 (A) in subparagraph (A)—

7 (i) by striking ‘‘and developmental 

8 disabilities’’ and inserting ‘‘, developmental 

9 disabilities, and disabilities and health’’; 

10 and 

11 (ii) by striking ‘‘subsection (d)(2)’’ 

12 and inserting ‘‘subsection (c)(2)’’; 

13 (B) in subparagraph (B), by striking 

14 ‘‘and’’ at the end; 

15 (C) in subparagraph (C), by striking the 

16 period and inserting a semicolon; and 

17 (D) by adding at the end the following: 

18 ‘‘(D) to conduct research on and to pro19 mote the prevention of such defects and disabil20 ities, and secondary health conditions among in21 dividuals with disabilities; and 

22 ‘‘(E) to support a National Spina Bifida 

23 Program to prevent and reduce suffering from 

24 the Nation’s most common permanently dis25 abling birth defect.’’; 

26 (2) by striking subsection (b); 
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1 (3) in subsection (d)—

2 (A) by striking paragraph (1) and insert3 ing the following: 

4 ‘‘(1) contains information regarding the inci5 dence and prevalence of birth defects, developmental 

6 disabilities, and the health status of individuals with 

7 disabilities and the extent to which these conditions 

8 have contributed to the incidence and prevalence of 

9 infant mortality and affected quality of life;’’; 

10 (B) in paragraph (3), by inserting ‘‘, devel11 opmental disabilities, and secondary health con12 ditions among individuals with disabilities’’ 

13 after ‘‘defects’’; 

14 (C) in paragraph (4), by striking ‘‘and’’ at 

15 the end; 

16 (D) by redesignating paragraph (5) as 

17 paragraph (7); and 

18 (E) by inserting after paragraph (4) the 

19 following: 

20 ‘‘(5) contains information on the incidence and 

21 prevalence of individuals living with birth defects 

22 and disabilities or developmental disabilities, infor23 mation on the health status of individuals with dis24 abilities, information on any health disparities expe25 rienced by such individuals, and recommendations 
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1 for improving the health and wellness and quality of 

2 life of such individuals; 

3 ‘‘(6) contains a summary of recommendations 

4 from all birth defects research conferences sponsored 

5 by the Centers for Disease Control and Prevention, 

6 including conferences related to spina bifida; and’’; 

7 (4) in subsection (e)—

8 (A) by inserting ‘‘, including section 444 of 

9 the General Education Provisions Act,’’ after 

10 ‘‘privacy of information’’; and 

11 (B) by inserting before the period the fol12 lowing: ‘‘, except that the Centers for Disease 

13 Control and Prevention shall have access to in14 formation under section 444(b)(1)(F) of such 

15 Act solely for purposes of carrying out sub16 section (a)(2) of this section and shall otherwise 

17 comply with all other requirements of such sec18 tion 444’’; 

19 (5) by redesignating subsections (c), (d), and 

20 (e) as subsections (b), (c), and (d), respectively; 

21 (6) by inserting after subsection (d) (as so re22 designated), the following: 

23 ‘‘(e) ADVISORY COMMITTEE.—Notwithstanding any 

24 other provision of law, the members of the advisory com25 mittee appointed by the Director of the National Center 
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1 for Environmental Health that have expertise in birth de2 fects, developmental disabilities, and disabilities and 

3 health shall be transferred to and shall advise the National 

4 Center on Birth Defects and Developmental Disabilities 

5 effective on the date of enactment of the Birth Defects 

6 and Developmental Disabilities Prevention Act of 2003.’’; 

7 and 

8 (7) in subsection (f), by striking ‘‘$30,000,000’’ 

9 and all that follows and inserting ‘‘such sums as 

10 may be necessary for each of fiscal years 2003 

11 through 2007.’’. 

12 SEC. 3. TECHNICAL CORRECTIONS FOR STATE COUNCILS 

13 ON DEVELOPMENTAL DISABILITIES. 

14 Section 122(a) of the Developmental Disabilities As15 sistance and Bill of Rights Act of 2000 (42 U.S.C. 

16 15022(a)) is amended—

17 (1) in paragraph (3)(A)(ii), by inserting before 

18 the period the following: ‘‘, the amount received by 

19 the State for the previous year, or the amount of 

20 Federal appropriations received in fiscal year 2000, 

21 2001, or 2002, whichever is greater’’; and 

22 (2) in paragraph (4)(A)(ii), by inserting before 

23 the period the following: ‘‘, the amount received by 

24 the State for the previous year, or the amount of 
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1 Federal appropriations received in fiscal year 2000, 

2 2001, or 2002, whichever is greater’’.

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Birth Defects and Devel5 opmental Disabilities Prevention Act of 2003’’. 

6 SEC. 2. NATIONAL CENTER ON BIRTH DEFECTS AND DEVEL7 OPMENTAL DISABILITIES. 

8 Section 317C of the Public Health Service Act (42 

9 U.S.C. 247b–4) is amended—

10 (1) in subsection (a)(2)—

11 (A) in subparagraph (A)—

12 (i) by striking ‘‘and developmental dis13 abilities’’ and inserting ‘‘, developmental 

14 disabilities, and disabilities and health’’; 

15 and 

16 (ii) by striking ‘‘subsection (d)(2)’’ and 

17 inserting ‘‘subsection (c)(2)’’; 

18 (B) in subparagraph (B), by striking ‘‘and’’ 

19 at the end; 

20 (C) in subparagraph (C), by striking the 

21 period and inserting a semicolon; and 

22 (D) by adding at the end the following: 

23 ‘‘(D) to conduct research on and to promote 

24 the prevention of such defects and disabilities,
7

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1 and secondary health conditions among individ2 uals with disabilities; and 

3 ‘‘(E) to support a National Spina Bifida 

4 Program to prevent and reduce suffering from 

5 the Nation’s most common permanently dis6 abling birth defect.’’; 

7 (2) by striking subsection (b); 

8 (3) in subsection (d)—

9 (A) by striking paragraph (1) and inserting 

10 the following: 

11 ‘‘(1) contains information regarding the inci12 dence and prevalence of birth defects, developmental 

13 disabilities, and the health status of individuals with 

14 disabilities and the extent to which these conditions 

15 have contributed to the incidence and prevalence of 

16 infant mortality and affected quality of life;’’; 

17 (B) in paragraph (3), by inserting ‘‘, devel18 opmental disabilities, and secondary health con19 ditions among individuals with disabilities’’ 

20 after ‘‘defects’’; 

21 (C) in paragraph (4), by striking ‘‘and’’ at 

22 the end; 

23 (D) by redesignating paragraph (5) as 

24 paragraph (7); and 
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1 (E) by inserting after paragraph (4) the fol2 lowing: 

3 ‘‘(5) contains information on the incidence and 

4 prevalence of individuals living with birth defects and 

5 disabilities or developmental disabilities, information 

6 on the health status of individuals with disabilities, 

7 information on any health disparities experienced by 

8 such individuals, and recommendations for improving 

9 the health and wellness and quality of life of such in10 dividuals; 

11 ‘‘(6) contains a summary of recommendations 

12 from all birth defects research conferences sponsored 

13 by the Centers for Disease Control and Prevention, 

14 including conferences related to spina bifida; and’’; 

15 (4) by redesignating subsections (c), (d), and (e) 

16 as subsections (b), (c), and (d), respectively; 

17 (5) by inserting after subsection (d) (as so redes18 ignated), the following: 

19 ‘‘(e) ADVISORY COMMITTEE.—Notwithstanding any 

20 other provision of law, the members of the advisory com21 mittee appointed by the Director of the National Center for 

22 Environmental Health that have expertise in birth defects, 

23 developmental disabilities, and disabilities and health shall 

24 be transferred to and shall advise the National Center on 

25 Birth Defects and Developmental Disabilities effective on 
9

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1 the date of enactment of the Birth Defects and Develop2 mental Disabilities Prevention Act of 2003.’’; and 

3 (6) in subsection (f), by striking ‘‘$30,000,000’’ 

4 and all that follows and inserting ‘‘such sums as may 

5 be necessary for each of fiscal years 2003 through 

6 2007.’’. 

7 SEC. 3. TECHNICAL CORRECTIONS FOR STATE COUNCILS 

8 ON DEVELOPMENTAL DISABILITIES. 

9 (a) IN GENERAL.—Section 122(a) of the Develop10 mental Disabilities Assistance and Bill of Rights Act of 

11 2000 (42 U.S.C. 15022(a)) is amended—

12 (1) in paragraph (3)(A)(ii), by inserting before 

13 the period the following: ‘‘, the amount received by the 

14 State for the previous year, or the amount of Federal 

15 appropriations received in fiscal year 2000, 2001, or 

16 2002, whichever is greater’’; and 

17 (2) in paragraph (4)(A)(ii), by inserting before 

18 the period the following: ‘‘, the amount received by the 

19 State for the previous year, or the amount of Federal 

20 appropriations received in fiscal year 2000, 2001, or 

21 2002, whichever is greater’’. 

22 (b) EFFECTIVE DATE.—The amendments made by sub23 section (a) shall take effect on October 1, 2003 and apply 

24 to allotments beginning in fiscal year 2004. 
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1 SEC. 4. REPORT ON SURVEILLANCE ACTIVITIES. 

2 Not later than 18 months after the date of enactment 

3 of this Act, the Secretary of Health and Human Services 

4 jointly with the Secretary of Education shall submit to the 

5 Committee on Health, Education, Labor, and Pensions of 

6 the Senate and the Committee on Energy and Commerce 

7 and Committee on Education and the Workforce of the 

8 House of Representatives a report concerning surveillance 

9 activities under section 102 of the Children’s Health Act 

10 of 2000 (Public Law 106–310), specifically including—

11 (1) a description of the current grantees under 

12 the National Autism and Pervasive Developmental 

13 Disabilities Surveillance Program and the Centers of 

14 Excellence in Autism and Pervasive Developmental 

15 Disabilities the data collected, analyzed, and reported 

16 under such grants, the sources of such data, and 

17 whether such data was obtained with parental consent 

18 as required under the Family Educational Rights 

19 and Privacy Act of 1974 (20 U.S.C. 1232g); 

20 (2) a description of current sources of data for 

21 the surveillance of autism and developmental disabil22 ities and the methods for obtaining such data, includ23 ing whether such data was obtained with parental or 

24 patient consent for disclosure; 

25 (3) an analysis of research on autism and devel26 opmental disabilities with respect to the methods of 
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1 collection and reporting, including whether such re2 search was obtained with parental or patient consent 

3 for disclosure; 

4 (4) an analysis of the need to add education 

5 records in the surveillance of autism and other devel6 opmental disabilities, including the methodological 

7 and medical necessity for such records and the rights 

8 of parents and patients in the use of education 

9 records (in accordance with the Family Educational 

10 Rights and Privacy Act of 1974); 

11 (5) a description of the efforts taken by the Cen12 ters for Disease Control and Prevention to utilize edu13 cation records in conducting the surveillance program 

14 while obtaining parental or patient consent for such 

15 education records, including the outcomes of such ef16 forts; 

17 (6) a description of the challenges provided to ob18 taining education records (in the absence of parental 

19 or patient consent) for the purpose of obtaining addi20 tional surveillance data for autism and other develop21 mental disabilities; and 

22 (7) a description of the manner in which such 

23 challenges can be overcome, including efforts to edu24 cate parents, increase confidence in the privacy of the 

25 surveillance program, and increase the rate of paren-
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1 tal or patient consent, and including specific quan2 titative and qualitative justifications for any rec3 ommendations for changes to existing statutory au4 thority, including the Family Educational Rights 

5 and Privacy Act of 1974.

Calendar No. 369

108TH CONGRESS 

1ST SESSION S. 286

[Report No. 108–188] 

A BILL

To revise and extend the Birth Defects Prevention 

Act of 1998. 

NOVEMBER 6, 2003

Reported with an amendment