    [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

    [[Page 1934]]
    117 STAT. 1934

    (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

    [[Page 1935]]
    117 STAT. 1935

    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):
    ---------------------------------------------------------------------------

    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.