Page:United States Statutes at Large Volume 104 Part 4.djvu/964

 104 STAT. 3280 PUBLIC LAW 101-616—NOV. 16, 1990 section. The Registry shall be under the general supervision of the Secretary, and under the direction of a board of directors that shall include representatives of marrow donor centers, marrow transplant centers, persons with expertise in the social science, and the general public. "(b) FUNCTIONS. —The Registry shall— "(1) establish a system for finding marrow donors suitably matched to unrelated recipients for bone marrow transplantation; "(2) establish a system for patient advocacy, separate from mechanisms for donor advocacy, that directly assists patients, their families, and their physicians in the search for an unrelated marrow donor; "(3) increase the representation of individuals from racial and ethnic minority groups in the pool of potential donors for the Registry in order to enable an individual in a minority group, to the extent practicable, to have a comparable chance of finding a suitable unrelated donor as would an individual not in a minority group; "(4) provide information to physicians, other health care professionals, and the public regarding bone marrow transplantation; "(5) recruit potential bone marrow donors; "(6) collect, analyze, and publish data concerning bone marrow donation and transplantation; and "(7) support studies and demonstration projects for the purpose of increasing the number of individuals, especially minorities, who are willing to be marrow donors. "(c) CRITERIA, STANDARDS, AND PROCEDURES. — Not later than 180 days after the date of enactment of this part, the Secretary shall establish and enforce, for entities participating in the program, including the Registry, individual marrow donor centers, marrow donor registries, marrow collection centers, and marrow transplant centers— "(1) quality standards and standards for tissue typing, obtaining the informed consent of donors, and providing patient advocacy; "(2) donor selection criteria, based on established medical criteria, to protect both the donor and the recipient and to prevent the transmission of potentially harmful infectious diseases such as the viruses that cause hepatitis and the etiologic agent for Acquired Immune Deficiency Syndrome; "(3) procedures to ensure the proper collection and transportation of the marrow; "(4) standards that require the provision of information to patients, their families, and their physicians at the start of the search process concerning— ' (A) the resources available through the Registry; "(B) all other marrow donor registries meeting the standards described in this paragraph; and "(C) in the case of the Registry— "(i) the comparative costs of all charges by marrow transplant centers incurred by patients prior to transplantation; and "(ii) the success rates of individual marrow transplant centers; "(5) standards that—

�