Pub. L. 94-278, tit. IV, sec. 403

Sec. 403. (a) Title XI is amended by striking out parts A and B and inserting in lieu thereof the following: “Part A— Genetic Diseases “testing and counseling programs and information and education programs “Sec. 1101. (a) (1) The Secretary, through an identifiable administrative unit within the Department of Health, Education, and Welfare, may make grants to public and nonprofit private entities, and may enter into contracts with public and private entities, for projects to establish and operate voluntary genetic testing and counseling programs primarily in conjunction with other existing health programs, including programs assisted under title V of the Social Security Act. “(2) The Secretary shall carry out, through an identifiable administrative unit within the Department of Health, Education, and Welfare, a program to develop information and educational materials90 STAT. 408 relating to genetic diseases and to disseminate such information and materials to persons providing health care, to teachers and students, and to the public generally in order to most rapidly make available the latest advances in the testing, diagnosis, counseling, and treatment of individuals respecting genetic diseases. The Secretary may, under such program, make grants to public and nonprofit private entities and enter into contracts with public and private entities and individuals for the development and dissemination of such materials. “(b) For the purpose of making payments pursuant to grants and contracts under this section, there are authorized to be appropriated $30,000,000 for fiscal year 1076, $30,000,000 for fiscal year 1977, and $30,000,000 for fiscal year 1978. “research project grants and contracts “Sec. 1102. In carrying out section 301, 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. “voluntary participation “Sec. 1103. The participation by any individual in any program or port ion thereof under this part shall lie wholly voluntary and shall not be a prerequisite to eligibility for or receipt of any other service or assistance from, or to participation in, any other program. “applications; administration of grants and contract programs “Sec. 1104. (a) A grant or contract under this part may be made upon application submitted to the Secretary at such time, in such manner, and containing and accompanied by such information, as the Secretary may require. Each applicant shall— “(1) provide that the programs and activities for which assistance under this part is sought will be administered by or under the supervision of the applicant; “(2) provide for strict, confidentiality of all test results, medical records, and other information regarding testing, diagnosis, counseling, or treatment of any person treated, except for (A) such information as the patient (or his guardian) gives informed consent to be released, or (B ) statistical data compiled without reference to the identity of any such patient; 90 STAT. 409 “(3) provide, for community representation where appropriate in the development and operation of voluntary genetic testing or counseling programs funded by a grant or contract under this part; “(4) in the case of an applicant for a grant or contract under section 1101 (a)(1) for the delivery of services, provide assurances satisfactory to the Secretary that (A) the services for community-wide testing and counseling to be provided under the program for which the application is made (i) will take into consideration widely prevalent discuses with a genetic component and high-risk population groups in which certain genetic diseases occur, and (ii) where appropriate will be directed especially but not exclusively to persons who are entering their child-producing years, and (B) appropriate arrangements will be made to provide counseling to persons found to have a genetic disease and to persons found to carry a gene or chromosome which may cause a deleterious effect in their offspring; and “(5) establish fiscal control and fund accounting procedures as may be necessary to assure proper disbursement of and accounting of Federal funds paid to the applicant under this part. “(b) In making any grant or entering into any contract for testing and counseling programs under section 1101, the Secretary shall (1) take into account the number of persons to be served by the program supported by such grant or contract and the extent to which rapid and effective use will be made of funds under the grant or contract; and (2) give priority to programs operating in areas which the Secretary determines have the greatest number of persons who will benefit from and are in need of the services provided under such programs. “(c) In making grants and entering into contracts for any fiscal year under section 301 for projects described in section 1102 or under section 1101 the Secretary shall give special consideration to applications from entities that received grants from, or entered into contracts with, the Secretary for the preceding fiscal year for the conduct of comprehensive sickle cell centers or sickle cell screening and education clinics. “public health service facilities “Sec. 1105. The Secretary shall establish a program within the Service to provide voluntary testing, diagnosis, counseling, and treatment of individuals respecting genetic diseases. Services under such program shall be made available through facilities of the Service to persons requesting such services, and the program shall provide appropriate publicity of the availability and voluntary nature of such services. “reports “Sec. 1106. (a) The Secretary shall prepare and submit to the President for transmittal to the Congress on or before April 1 of each year a comprehensive report on the administration of this part. “(b) The report required by this section shall contain such recommendations for additional legislation as the Secretary deems necessary.”. (b) (1) Section 1121(b)(5) is amended by striking out “ending June 30,” each place it occurs. (2) Parts C and D are redesignated as parts B and C, respectively. (3) The heading of such title is amended to read as follows: 90 STAT. 410 “TITLE XI— GENETIC DISEASES, HEMOPHILIA PROGRAMS, AND SUDDEN INFANT DEATH SYNDROME.” (c) The amendments made by subsections (a) and (b) shall take effect July 1, 1976.