1dec 
[DOCID: f:h2096ih.txt]






107th CONGRESS
  1st Session
                                H. R. 2096

  To provide for a National Stem Cell Donor Bank regarding qualifying 
  human stem cells, and for the conduct and support of research using 
                              such cells.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                              June 7, 2001

  Mr. Smith of New Jersey (for himself, Mr. Aderholt, Mr. Bachus, Mr. 
 Baker, Mr. Barcia, Mr. Blunt, Mr. Bryant, Mr. Camp, Mr. Costello, Mr. 
DeMint, Mr. Doolittle, Mr. Green of Wisconsin, Ms. Hart, Mr. Hoekstra, 
   Mr. Holden, Mr. Langevin, Mr. Largent, Mr. Lewis of Kentucky, Mr. 
Lipinski, Mr. Pence, Mr. Phelps, Mr. Pickering, Mr. Pitts, Mr. Rahall, 
  Mr. Rohrabacher, Mr. Ryun of Kansas, Mr. Schrock, Mr. Shadegg, Mr. 
 Shimkus, Mr. Shows, Mr. Souder, Mr. Stump, Mr. Tancredo, Mr. Tiahrt, 
   Mr. Vitter, Mr. Wicker, Mr. Thune, Mrs. Myrick, and Mr. Stearns) 
 introduced the following bill; which was referred to the Committee on 
                          Energy and Commerce

_______________________________________________________________________

                                 A BILL


 
  To provide for a National Stem Cell Donor Bank regarding qualifying 
  human stem cells, and for the conduct and support of research using 
                              such cells.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Responsible Stem Cell Research Act 
of 2001''.

SEC. 2. FINDINGS.

    The Congress finds as follows:
            (1) Past investments in biomedical research have resulted 
        in better health, an improved quality of life for all 
        Americans, and a reduction in national health care 
        expenditures.
            (2) The Nation's commitment to biomedical research has 
        expanded the base of scientific knowledge about health and 
        disease and revolutionized the practice of medicine.
            (3) Research sponsored by the National Institutes of Health 
        is responsible for the identification of genetic mutations 
        relating to nearly 100 diseases, including Alzheimer's disease, 
        cystic fibrosis, Huntington's disease, osteoporosis, many forms 
        of cancer, and immune deficiency disorders.
            (4) Many Americans still face serious and life-threatening 
        health problems, both acute and chronic.
            (5) Neurodegenerative diseases of the elderly, such as 
        Alzheimer's and Parkinson's disease, threaten to destroy the 
        lives of millions of Americans.
            (6) Cancer remains a comprehensive threat to any tissue or 
        organ of the body at any age, and remains a leading cause of 
        morbidity and mortality.
            (7) The extent of psychiatric and neurological diseases 
        poses considerable challenges in understanding the workings of 
        the brain and nervous system.
            (8) Diabetes, both insulin and noninsulin forms, afflicts 
        16 million Americans and places them at risk for acute and 
        chronic complications, including blindness, kidney failure, 
        atherosclerosis, and nerve degeneration.
            (9) Recent scientific developments show that human stem 
        cell research based on ethically responsible stem cell sources 
        may lead to exponential improvements in the treatment of many 
        terminal and debilitating conditions, from cancer to 
        Parkinson's to Alzheimer's to diabetes to heart disease.
            (10) To take full advantage of the tremendous potential for 
        finding a cure or effective treatment for many debilitating 
        diseases, the Federal investment in ethical stem cell research 
        must be expanded.

SEC. 3. NATIONAL STEM CELL DONOR BANK.

    (a) In General.--The Secretary of Health and Human Services shall 
by contract establish and maintain a National Stem Cell Donor Bank (in 
this section referred to as the ``Donor Bank''). The purpose of the 
Donor Bank shall be to seek and preserve donations of qualifying human 
stem cells and to make such donated cells available for biomedical 
research and for therapeutic purposes.
    (b) Qualifying Human Stem Cells.--For purposes of this Act, the 
term ``qualifying human stem cells'' means human stem cells obtained 
from human placentas, umbilical cord blood, organs or tissues of a 
living or deceased human being who has been born, or organs or tissues 
of unborn human offspring who died of natural causes (such as 
spontaneous abortion).
    (c) Administration of Donor Bank.--The Donor Bank shall be under 
the general supervision of the Secretary, and under the direction of a 
board of directors meeting such criteria as the Secretary may 
establish.
    (d) Patient Registry.--The Donor Bank shall with respect to 
qualifying human stem cells--
            (1) operate a registry of patients who are transplant 
        candidates;
            (2) establish a system for finding donors who are unrelated 
        to the candidate patients and are suitably matched to the 
        patients; and
            (3) carry out informational and educational activities.
    (e) Criteria.--The Secretary shall establish criteria for the Donor 
Bank and other entities that participate in the program under this 
section, including--
            (1) quality standards and standards for tissue typing and 
        obtaining the informed consent of donors, or the parents or 
        legal representatives of donors as appropriate;
            (2) donor selection criteria, based on established medical 
        criteria, to protect both donors and transplant recipients and 
        to prevent the transmission of potentially harmful infectious 
        diseases;
            (3) procedures to ensure the proper collection and 
        transportation of qualifying human stem cells; and
            (4) standards that--
                    (A) require the establishment of a system of strict 
                confidentiality of records relating to the identity and 
                address of and medical information on patients and 
                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.
    (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 the fiscal years 2002 through 2006.

SEC. 4. USE OF QUALIFYING HUMAN STEM CELLS IN RESEARCH CONDUCTED OR 
              SUPPORTED BY NATIONAL INSTITUTES OF HEALTH.

    (a) In General.--The Secretary, acting through the Director of the 
National Institutes of Health, may conduct and support research that 
uses qualifying human stem cells.
    (b) Authorization of Appropriations.--For the purpose of carrying 
out subsection (a), there are authorized to be appropriated $30,000,000 
for fiscal year 2002, and such sums as may be necessary for each of the 
fiscal years 2003 through 2006.

SEC. 5. DEFINITIONS.

    For purposes of this Act:
            (1) The term ``qualifying human stem cells'' has the 
        meaning given such term in section 3.
            (2) The term ``Secretary'' means the Secretary of Health 
        and Human Services.
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