42 U.S.C. § 247b–4: National Center on Birth…

Summary

Create a National Center on Birth Defects and Developmental Disabilities inside the Centers for Disease Control and Prevention, led by a director the CDC Director appoints. The Department of Health and Human Services must run programs that gather and share data about birth defects, developmental disabilities, and health in people with disabilities (including causes and how often they happen), operate regional centers for practical research to prevent these conditions, give public information and education, do research and promote prevention of these conditions and related health problems, and support a National Spina Bifida Program. The Secretary must carry out section 247b–11 through this Center. Programs that dealt with birth defects and related topics at the National Center for Environmental Health as of October 16, 2000 were moved to the new Center after the 180-day period starting October 17, 2000, and the staff and funds for those programs moved too without changing how the money can be used. The Secretary may make grants and contracts with public and nonprofit groups, and can provide supplies, equipment, services, or staff instead of money if the award amount is reduced by the cost of those items. Award applications are required. Not later than February 1 of fiscal year 1999 and every two years after that, the Secretary must send a report to the Committee on Commerce of the House and the Committee on Labor and Human Resources of the Senate covering the prior two fiscal years with data on how common these conditions are, impacts on infant death and quality of life, information by racial and ethnic groups (including Hispanics, non-Hispanic whites, Blacks, Native Americans, and Asian Americans), how well prevention methods work, activities done, health status and disparities for people living with these conditions, summaries of CDC birth defects research conference recommendations (including spina bifida), and any Secretary recommendations. All federal privacy laws apply, including section 552a of title 5. Members of the advisory committee with relevant expertise were moved to advise the new Center effective December 3, 2003. Funds “such sums as may be necessary” are authorized for fiscal years 2003 through 2007.

Title 42, §247b–4

The Public Health and Welfare, Source: USLM XML via OLRC

(a)In general

(1)National Center

There is established within the Centers for Disease Control and Prevention a center to be known as the National Center on Birth Defects and Developmental Disabilities (referred to in this section as the “Center”), which shall be headed by a director appointed by the Director of the Centers for Disease Control and Prevention.

(2)General duties

The Secretary shall carry out programs—

(A)to collect, analyze, and make available data on birth defects, developmental disabilities, and disabilities and health (in a manner that facilitates compliance with subsection (c)(2)), including data on the causes of such defects and disabilities and on the incidence and prevalence of such defects and disabilities;

(B)to operate regional centers for the conduct of applied epidemiological research on the prevention of such defects and disabilities;

(C)to provide information and education to the public on the prevention of such defects and disabilities;

(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.

(3)Folic acid

The Secretary shall carry out section 247b–11 of this title through the Center.

(4)Certain programs

(A)Transfers

All programs and functions described in subparagraph (B) are transferred to the Center, effective upon the expiration of the 180-day period beginning on October 17, 2000.

(B)Relevant programs

The programs and functions described in this subparagraph are all programs and functions that—

(i)relate to birth defects; folic acid; cerebral palsy; intellectual disabilities; child development; newborn screening; autism; fragile X syndrome; fetal alcohol syndrome; pediatric genetic disorders; disability prevention; or other relevant diseases, disorders, or conditions as determined the Secretary; and

(ii)were carried out through the National Center for Environmental Health as of the day before October 17, 2000.

(C)Related transfers

Personnel employed in connection with the programs and functions specified in subparagraph (B), and amounts available for carrying out the programs and functions, are transferred to the Center, effective upon the expiration of the 180-day period beginning on October 17, 2000. Such transfer of amounts does not affect the period of availability of the amounts, or the availability of the amounts with respect to the purposes for which the amounts may be expended.

(b)Grants and contracts

(1)In general

In carrying out subsection (a), the Secretary may make grants to and enter into contracts with public and nonprofit private entities.

(2)Supplies and services in lieu of award funds

(A)Upon the request of a recipient of an award of a grant or contract under paragraph (1), the Secretary may, subject to subparagraph (B), provide supplies, equipment, and services for the purpose of aiding the recipient in carrying out the purposes for which the award is made and, for such purposes, may detail to the recipient any officer or employee of the Department of Health and Human Services.

(B)With respect to a request described in subparagraph (A), the Secretary shall reduce the amount of payments under the award involved by an amount equal to the costs of detailing personnel and the fair market value of any supplies, equipment, or services provided by the Secretary. The Secretary shall, for the payment of expenses incurred in complying with such request, expend the amounts withheld.

(3)Application for award

The Secretary may make an award of a grant or contract under paragraph (1) only if an application for the award is submitted to the Secretary and the application is in such form, is made in such manner, and contains such agreements, assurances, and information as the Secretary determines to be necessary to carry out the purposes for which the award is to be made.

(c)Biennial report

Not later than February 1 of fiscal year 1999 and of every second such year thereafter, the Secretary shall submit to the Committee on Commerce of the House of Representatives, and the Committee on Labor and Human Resources of the Senate, a report that, with respect to the preceding 2 fiscal years—

(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;

(2)contains information under paragraph (1) that is specific to various racial and ethnic groups (including Hispanics, non-Hispanic whites, Blacks, Native Americans, and Asian Americans);

(3)contains an assessment of the extent to which various approaches of preventing birth defects, developmental disabilities, and secondary health conditions among individuals with disabilities have been effective;

(4)describes the activities carried out under this section;

(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

(7)contains any recommendations of the Secretary regarding this section.

(d)Applicability of privacy laws

The provisions of this section shall be subject to the requirements of section 552a of title 5. All Federal laws relating to the privacy of information shall apply to the data and information that is collected under this section.

(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 December 3, 2003.

(f)Authorization of appropriations

For the purpose of carrying out this section, there are authorized to be appropriated such sums as may be necessary for each of fiscal years 2003 through 2007.

Notes & Related Subsidiaries

Editorial Notes

Amendments

2010—Subsec. (a)(4)(B)(i). Pub. L. 111–256 substituted “intellectual disabilities;” for “mental retardation;”. 2003—Subsec. (a)(2)(A). Pub. L. 108–154, § 2(1)(A), substituted “, developmental disabilities, and disabilities and health” for “and developmental disabilities” and “subsection (c)(2)” for “subsection (d)(2)”. Subsec. (a)(2)(D), (E). Pub. L. 108–154, § 2(1)(B)–(D), added subpars. (D) and (E). Subsecs. (b), (c). Pub. L. 108–154, § 2(2),(4), redesignated subsecs. (c) and (d) as (b) and (c), respectively, and struck out former subsec. (b) which related to additional provisions regarding collection of data. Subsec. (d). Pub. L. 108–154, § 2(4), redesignated subsec. (e) as (d). Former subsec. (d) redesignated (c). Subsec. (d)(1). Pub. L. 108–154, § 2(3)(A), added par. (1) and struck out former par. (1) which read as follows: “contains information regarding the incidence and prevalence of birth defects and the extent to which birth defects have contributed to the incidence and prevalence of infant mortality;”. Subsec. (d)(3). Pub. L. 108–154, § 2(3)(B), inserted “, developmental disabilities, and secondary health conditions among individuals with disabilities” after “defects”. Subsec. (d)(5) to (7). Pub. L. 108–154, § 2(3)(C)–(E), added pars. (5) and (6) and redesignated former par. (5) as (7). Subsec. (e). Pub. L. 108–154, § 2(5), added subsec. (e). Former subsec. (e) redesignated (d). Subsec. (f). Pub. L. 108–154, § 2(6) substituted “such sums as may be necessary for each of fiscal years 2003 through 2007.” for “$30,000,000 for fiscal year 1999, $40,000,000 for fiscal year 2000, and such sums as may be necessary for each of the fiscal years 2001 and 2002.” 2000—Pub. L. 106–310, § 611(1), substituted “National Center on Birth Defects and Developmental Disabilities” for “Programs regarding birth defects” in section catchline. Subsec. (a). Pub. L. 106–310, § 611(2), added subsec. (a) and struck out heading and text of former subsec. (a) relating to Secretary’s responsibility, acting through the Centers for Disease Control and Prevention, to carry out programs regarding birth defects. Subsec. (b)(1). Pub. L. 106–310, § 611(3), substituted “subsection (a)(2)(A) of this section” for “subsection (a)(1) of this section” in introductory provisions. 1998—Pub. L. 105–168 amended section generally, substituting present provisions for provisions which directed Secretary to encourage and assist States in collection and analysis of epidemiological data on birth defects and to establish and maintain National Information Clearinghouse on Birth Defects, required report not later than July 1, 1993, and biennially thereafter, and authorized appropriations for fiscal years 1993, 1994, and 1995. 1993—Pub. L. 103–43 made technical amendment to directory language of Pub. L. 102–531, § 306(a), which enacted this section.

Statutory Notes and Related Subsidiaries

Change of Name

Committee on Commerce of House of Representatives changed to Committee on Energy and Commerce of House of Representatives, and jurisdiction over matters relating to securities and exchanges and insurance generally transferred to Committee on Financial Services of House of Representatives by House Resolution No. 5, One Hundred Seventh Congress, Jan. 3, 2001. Committee on Labor and Human Resources of Senate changed to Committee on Health, Education, Labor, and Pensions of Senate by Senate Resolution No. 20, One Hundred Sixth Congress, Jan. 19, 1999. Congressional Findings Pub. L. 105–168, § 1(b), Apr. 21, 1998, 112 Stat. 43, provided that: “Congress makes the following findings: “(1) Birth defects are the leading cause of infant mortality, directly responsible for one out of every five infant deaths. “(2) Thousands of the 150,000 infants born with a serious birth defect annually face a lifetime of chronic disability and illness. “(3) Birth defects threaten the lives of infants of all racial and ethnic backgrounds. However, some conditions pose excess risks for certain populations. For example, compared to all infants born in the United States, Hispanic-American infants are more likely to be born with anencephaly spina bifida and other neural tube defects and African-American infants are more likely to be born with sickle-cell anemia. “(4) Birth defects can be caused by exposure to environmental hazards, adverse health conditions during pregnancy, or genetic mutations. Prevention efforts are slowed by lack of information about the number and causes of birth defects. Outbreaks of birth defects may go undetected because surveillance and research efforts are underdeveloped and poorly coordinated. “(5) Public awareness strategies, such as programs using folic acid vitamin supplements to prevent spina bifida and alcohol avoidance programs to prevent Fetal Alcohol Syndrome, are essential to prevent the heartache and costs associated with birth defects.” Definitions For meaning of references to an intellectual disability and to individuals with intellectual disabilities in provisions amended by section 2 of Pub. L. 111–256, see section 2(k) of Pub. L. 111–256, set out as a note under section 1400 of Title 20, Education.

§247b–4 National Center on Birth Defects and Developmental Disabilities