2012 US Code
Title 42 - The Public Health and Welfare
Chapter 6A - PUBLIC HEALTH SERVICE (§§ 201 - 300mm-61)
Subchapter IX - GENETIC DISEASES, HEMOPHILIA PROGRAMS, AND SUDDEN INFANT DEATH SYNDROME (§§ 300b - 300c-22)
Part A - Genetic Diseases (§§ 300b - 300b-15)
Section 300b-1 - Research project grants and contracts
Publication Title | United States Code, 2012 Edition, Title 42 - THE PUBLIC HEALTH AND WELFARE |
Category | Bills and Statutes |
Collection | United States Code |
SuDoc Class Number | Y 1.2/5: |
Contained Within | Title 42 - THE PUBLIC HEALTH AND WELFARE CHAPTER 6A - PUBLIC HEALTH SERVICE SUBCHAPTER IX - GENETIC DISEASES, HEMOPHILIA PROGRAMS, AND SUDDEN INFANT DEATH SYNDROME Part A - Genetic Diseases Sec. 300b-1 - Research project grants and contracts |
Contains | section 300b-1 |
Date | 2012 |
Laws in Effect as of Date | January 15, 2013 |
Positive Law | No |
Disposition | standard |
Short Titles | National Sickle Cell Anemia, Cooley's Anemia, Tay-Sachs, and Genetic Diseases Act, see section 401 of Pub. L. 94-278, set out as a note under section 201 of this title.</p> |
Source Credit | July 1, 1944, ch. 373, title XI, §1102, as added Pub. L. 94-278, title IV, §403(a), Apr. 22, 1976, 90 Stat. 408. |
Statutes at Large References | 86 Stat. 138 90 Stat. 408, 407, 410 92 Stat. 3583 118 Stat. 1559 124 Stat. 2644 |
Public Law References | Public Law 92-294, Public Law 94-278, Public Law 95-626, Public Law 108-357, Public Law 111-256 |
Download PDF
In carrying out section 241 of this title, the Secretary may make grants to public and nonprofit private entities, and may enter into contracts with public and private entities and individuals, for projects for (1) basic or applied research leading to the understanding, diagnosis, treatment, and control of genetic diseases, (2) planning, establishing, demonstrating, and developing special programs for the training of genetic counselors, social and behavioral scientists, and other health professionals, (3) the development of programs to educate practicing physicians, other health professionals, and the public regarding the nature of genetic processes, the inheritance patterns of genetic diseases, and the means, methods, and facilities available to diagnose, control, counsel, and treat genetic diseases, and (4) the development of counseling and testing programs and other programs for the diagnosis, control, and treatment of genetic diseases. In making grants and entering into contracts for projects described in clause (1) of the preceding sentence, the Secretary shall give priority to applications for such grants or contracts which are submitted for research on sickle cell anemia and for research on Cooley's anemia.
(July 1, 1944, ch. 373, title XI, §1102, as added Pub. L. 94–278, title IV, §403(a), Apr. 22, 1976, 90 Stat. 408.)
Prior ProvisionsA prior section 300b–1, act July 1, 1944, ch. 373, title XI, §1102, as added May 16, 1972, Pub. L. 92–294, §3(c), 86 Stat. 138, authorized Secretary to make grants and enter contracts with public and private entities and individuals for projects concerned with research, research training in diagnosis, treatment and control of sickle cell anemia, informational and educational programs with respect to sickle cell anemia and development of counseling and testing programs, prior to repeal by Pub. L. 94–278, title IV, §403(a), Apr. 22, 1976, 90 Stat. 407.
Effective DatePub. L. 94–278, title IV, §403(c), Apr. 22, 1976, 90 Stat. 410, provided that: “The amendments made by subsections (a) and (b) [see section 401 of Pub. L. 94–278, set out as a Short Title of 1976 Amendment note under section 201 of this title] shall take effect July 1, 1976.”
Short Title of 1976 AmendmentFor short title of title IV of Pub. L. 94–278, which enacted this part, omitted former part B of this subchapter, redesignated former parts C and D of this subchapter as parts B and C of this subchapter, respectively, as the “National Sickle Cell Anemia, Cooley's Anemia, Tay-Sachs, and Genetic Diseases Act”, see section 401 of Pub. L. 94–278, set out as a note under section 201 of this title.
Demonstration Program for the Development and Establishment of Systemic Mechanisms for the Prevention and Treatment of Sickle Cell DiseasePub. L. 108–357, title VII, §712(c), Oct. 22, 2004, 118 Stat. 1559, provided that:
“(1)
“(A)
“(i) the coordination of service delivery for individuals with Sickle Cell Disease;
“(ii) genetic counseling and testing;
“(iii) bundling of technical services related to the prevention and treatment of Sickle Cell Disease;
“(iv) training of health professionals; and
“(v) identifying and establishing other efforts related to the expansion and coordination of education, treatment, and continuity of care programs for individuals with Sickle Cell Disease.
“(B)
“(i)
“(ii)
“(I) Federally-qualified health centers that have a partnership or other arrangement with a comprehensive Sickle Cell Disease treatment center that does not receive funds from the National Institutes of Health; or
“(II) Federally-qualified health centers that intend to develop a partnership or other arrangement with a comprehensive Sickle Cell Disease treatment center that does not receive funds from the National Institutes of Health.
“(2)
“(A) To facilitate and coordinate the delivery of education, treatment, and continuity of care for individuals with Sickle Cell Disease under—
“(i) the entity's collaborative agreement with a community-based Sickle Cell Disease organization or a nonprofit entity that works with individuals who have Sickle Cell Disease;
“(ii) the Sickle Cell Disease newborn screening program for the State in which the entity is located; and
“(iii) the maternal and child health program under title V of the Social Security Act (42 U.S.C. 701 et seq.) for the State in which the entity is located.
“(B) To train nursing and other health staff who provide care for individuals with Sickle Cell Disease.
“(C) To enter into a partnership with adult or pediatric hematologists in the region and other regional experts in Sickle Cell Disease at tertiary and academic health centers and State and county health offices.
“(D) To identify and secure resources for ensuring reimbursement under the medicaid program, State children's health insurance program, and other health programs for the prevention and treatment of Sickle Cell Disease.
“(3)
“(A)
“(B)
“(i) collect, coordinate, monitor, and distribute data, best practices, and findings regarding the activities funded under grants made to eligible entities under the demonstration program;
“(ii) develop a model protocol for eligible entities with respect to the prevention and treatment of Sickle Cell Disease;
“(iii) develop educational materials regarding the prevention and treatment of Sickle Cell Disease; and
“(iv) prepare and submit to Congress a final report that includes recommendations regarding the effectiveness of the demonstration program conducted under this subsection and such direct outcome measures as—
“(I) the number and type of health care resources utilized (such as emergency room visits, hospital visits, length of stay, and physician visits for individuals with Sickle Cell Disease); and
“(II) the number of individuals that were tested and subsequently received genetic counseling for the sickle cell trait.
“(4)
“(5)
“(A)
“(B)
“(i) has a collaborative agreement with a community-based Sickle Cell Disease organization or a nonprofit entity with experience in working with individuals who have Sickle Cell Disease; and
“(ii) demonstrates to the Administrator that either the Federally-qualified health center, the nonprofit hospital or clinic, the university health center, the organization or entity described in clause (i), or the experts described in paragraph (2)(C), has at least 5 years of experience in working with individuals who have Sickle Cell Disease.
“(C)
“(6)
Pub. L. 94–278, title IV, §402, Apr. 22, 1976, 90 Stat. 407, as amended by Pub. L. 95–626, title II, §205(a), Nov. 10, 1978, 92 Stat. 3583; Pub. L. 111–256, §2(i), Oct. 5, 2010, 124 Stat. 2644, provided that: “In order to preserve and protect the health and welfare of all citizens, it is the purpose of this title [see section 401 of Pub. L. 94–278, set out as a Short Title of 1976 Amendment note under section 201 of this title] to establish a national program to provide for basic and applied research, research training, testing, counseling, and information and education programs with respect to genetic diseases, and genetic conditions, such as Sickle Cell anemia, Cooley's Anemia, Tay–Sachs disease, cystic fibrosis, dysautonomia, hemophilia, retinitis pigmentosa, Huntington's chorea, muscular dystrophy, and genetic conditions leading to intellectual disabilities or genetically caused mental disorders.”
[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.]
Disclaimer: These codes may not be the most recent version. The United States Government Printing Office may have more current or accurate information. We make no warranties or guarantees about the accuracy, completeness, or adequacy of the information contained on this site or the information linked to on the US site. Please check official sources.