Page:United States Statutes at Large Volume 119.djvu/2576

 119 STAT. 2558

Records. Confidentiality.

Minorities.

VerDate 14-DEC-2004

07:21 Oct 30, 2006

PUBLIC LAW 109–129—DEC. 20, 2005

‘‘(f) BONE MARROW CRITERIA, STANDARDS, AND PROCEDURES.— The Secretary shall enforce, for participating entities, including the Program, 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 for the system for patient advocacy operated under subsection (h), including standards requiring the provision of appropriate information (at the start of the search process and throughout the process) to patients and their families and physicians; ‘‘(5) standards that— ‘‘(A) require the establishment of a system of strict confidentiality of records relating to the identity, address, HLA type, and managing marrow donor center for marrow donors and potential marrow donors; and ‘‘(B) prescribe the purposes for which the records described in subparagraph (A) may be disclosed, and the circumstances and extent of the disclosure; and ‘‘(6) in the case of a marrow donor center or marrow donor registry participating in the program, procedures to ensure the establishment of a method for integrating donor files, searches, and general procedures of the center or registry with the Program. ‘‘(g) CORD BLOOD RECRUITMENT; PRIORITIES; INFORMATION AND EDUCATION.— ‘‘(1) RECRUITMENT; PRIORITIES.—The Program shall support activities, in cooperation with qualified cord blood banks, for the recruitment of cord blood donors. Such recruitment program shall identify populations that are underrepresented among cord blood donors. In the case of populations that are identified under the preceding sentence: ‘‘(A) The Program shall give priority to supporting activities under this part to increase representation for such populations in order to enable a member of such a population, to the extent practicable, to have a probability of finding a suitable cord blood unit that is comparable to the probability that an individual who is not a member of an underrepresented population would have. ‘‘(B) The Program shall consider racial and ethnic minority groups (including persons of mixed ancestry) to be populations that have been identified for purposes of this paragraph, and shall support activities under subparagraph (A) with respect to such populations. ‘‘(2) INFORMATION AND EDUCATION REGARDING RECRUITMENT; TESTING AND DONATION.— ‘‘(A) IN GENERAL.—In carrying out the recruitment program under paragraph (1), the Program shall support informational and educational activities in coordination

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