Bill Text: NY S01133 | 2009-2010 | General Assembly | Introduced


Bill Title: DELETE Creates the New York Stem Cell Research Institute; provides for the appointment of the New York state stem cell board, to be composed of nineteen members, to run the institute; establishes the powers, duties, procedures, and functions of the institute.

Spectrum: Partisan Bill (Democrat 6-0)

Status: (Introduced - Dead) 2010-05-11 - NOTICE OF COMMITTEE CONSIDERATION - WITHDRAWN [S01133 Detail]

Download: New_York-2009-S01133-Introduced.html
                           S T A T E   O F   N E W   Y O R K
       ________________________________________________________________________
                                         1133
                              2009-2010 Regular Sessions
                                   I N  S E N A T E
                                   January 26, 2009
                                      ___________
       Introduced  by  Sens.  PERKINS,  DUANE,  C. JOHNSON,  ONORATO, STAVISKY,
         THOMPSON -- read twice and ordered printed, and  when  printed  to  be
         committed to the Committee on Health
       AN ACT creating the New York Stem Cell Research Institute
         THE  PEOPLE OF THE STATE OF NEW YORK, REPRESENTED IN SENATE AND ASSEM-
       BLY, DO ENACT AS FOLLOWS:
    1    Section 1. Short title. This act may be cited as the  "New  York  Stem
    2  Cell Research Institute act".
    3    S  2.  Legislative intent. Millions of children and adults suffer from
    4  devastating diseases or injuries that are currently incurable, including
    5  cancer, diabetes, heart disease, Parkinson's disease, spinal cord  inju-
    6  ries,  blindness,  Lou  Gehrig's disease, HIV/AIDS, mental health disor-
    7  ders, multiple sclerosis, Huntington's disease, and  more  than  seventy
    8  other diseases and injuries.
    9    Recently,  medical  science has discovered a new way to attack chronic
   10  diseases and injuries. The cure and  treatment  of  these  diseases  can
   11  potentially  be accomplished through the use of new regenerative medical
   12  therapies including a special type of human cells,  called  stem  cells.
   13  These  life-saving  medical  breakthroughs  can  only happen if adequate
   14  funding is made available to advance stem cell research, develop  thera-
   15  pies, and conduct clinical trials.
   16    Unfortunately,  the  federal  government is not providing the adequate
   17  funding necessary for the  urgent  research  and  facilities  needed  to
   18  develop stem cell therapies to treat and cure diseases and serious inju-
   19  ries. This critical funding gap currently prevents the rapid advancement
   20  of research that could benefit millions of New Yorkers.
   21    S 3. New York Stem Cell Research Institute. a. There is hereby created
   22  an  institute  to be known as the New York Stem Cell Research Institute,
   23  which shall have the following purposes:
   24    (1) To make grants and loans for  stem  cell  research,  for  research
   25  facilities, and for other vital research opportunities to realize thera-
   26  pies,  protocols,  and/or  medical  procedures  that  will result in, as
   27  speedily as possible, the cure for, and/or  substantial  mitigation  of,
   28  major diseases, injuries, and orphan diseases.
        EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                             [ ] is old law to be omitted.
                                                                  LBD05470-01-9
       S. 1133                             2
    1    (2)  To  support  all  stages of the process of developing cures, from
    2  laboratory research through successful clinical trials.
    3    (3) To establish appropriate regulatory standards and oversight bodies
    4  for research and facilities development.
    5    b.  No  fund authorized for, or made available to, the institute shall
    6  be used for research involving human reproductive cloning.
    7    c. Funds authorized for, or made available to, the institute shall  be
    8  continuously  appropriated  without  regard to fiscal year, be available
    9  and used only for the purposes provided in this article, and  shall  not
   10  be subject to appropriation or transfer by the legislature or the gover-
   11  nor for any other purpose.
   12    S  4.  There  shall  be  established within the institute the New York
   13  state stem cell board, hereinafter, the board, which  shall  govern  the
   14  institute and is hereby vested with full power, authority, and jurisdic-
   15  tion over the institute.
   16    S  5.  The  New  York  state  stem  cell  board. a. The board shall be
   17  composed of nineteen members, who shall be appointed  in  the  following
   18  manner:  five  shall  be  appointed  by  the  governor;  three  shall be
   19  appointed by the temporary president of the senate; two by the  minority
   20  leader  of  the  senate;  three shall be appointed by the speaker of the
   21  assembly; two by the minority leader of the assembly; two by  the  state
   22  comptroller;  and two by the attorney general.  The members of the board
   23  shall be representative  of  the  public,  not-for-profit  academic  and
   24  research  institutions,  life  science  commercial entities, and disease
   25  advocacy groups.
   26    b. All appointments shall be made within forty days of  the  effective
   27  date  of  this  act.  In  the event that any of the appointments are not
   28  completed within the permitted time frame, the board  shall  proceed  to
   29  operate  with the appointments that are in place, provided that at least
   30  sixty percent of the appointments have been made.
   31    c. Board members shall serve six-year terms.  Members  shall  serve  a
   32  maximum  of two terms. If a vacancy occurs within a term, the appointing
   33  authority shall serve a maximum of two terms. If a vacancy occurs within
   34  a term, the appointing authority  shall  appoint  a  replacement  member
   35  within  thirty  days  to  serve  the  remainder of the term. When a term
   36  expires, the appointing authority shall appoint a member  within  thirty
   37  days. The board members shall continue to serve until their replacements
   38  are appointed.
   39    S  6.  The  board  shall  have the following powers and duties: a. The
   40  board shall elect a chairperson and vice chairperson within  forty  days
   41  of  the  effective  date  of this act. Each constitutional officer shall
   42  nominate a candidate for chairperson  and  another  candidate  for  vice
   43  chairperson.  The chairperson and vice chairperson shall each be elected
   44  for  a  term  of  six years. The chairperson and vice chairperson of the
   45  board shall be full or part time employees of the  institute  and  shall
   46  meet the following criteria:
   47    (1) have a documented history in successful stem cell research advoca-
   48  cy;
   49    (2)  have experience with state and federal legislative processes that
   50  must include some experience with medical legislative approvals of stan-
   51  dards and/or funding;
   52    (3) are not concurrently employed by or on leave from any  prospective
   53  grant or loan recipient institutions in New York;
   54    (4) have experience with governmental agencies or institutions, either
   55  executive or board position;
       S. 1133                             3
    1    (5)  have  experience  with  the  process of establishing governmental
    2  standards and procedures;
    3    (6) have legal experience with the legal review of proper governmental
    4  authority  for  the exercise of government agency or government institu-
    5  tional powers;
    6    (7) have direct knowledge and experience in bond financing.
    7    b. Actions of the board may be taken only by  a  majority  vote  of  a
    8  quorum of the board.
    9    c. The board shall oversee the operations of the institute.
   10    d. The board shall develop annual and long-term strategic research and
   11  financial plans for the institute.
   12    e.  The  board  shall  make  final decisions on research standards and
   13  grant awards in New York.
   14    f. Ensure the completion of an annual financial audit  of  the  insti-
   15  tute's operations.
   16    g. Issue public reports on the activities of the institute.
   17    h.  Establish  policies regarding intellectual property rights arising
   18  from research funded by the institute.
   19    i. Establish rules and guidelines for the operation of the  board  and
   20  its working groups.
   21    j.  Perform all other acts necessary or appropriate in the exercise of
   22  its power, authority, and jurisdiction over the institute.
   23    k. Adopt, amend, and rescind rules and regulations to  carry  out  the
   24  purposes and provisions of this chapter, and to govern the procedures of
   25  the  board.  These  rules and regulations shall be adopted in accordance
   26  with the state administrative procedure act.
   27    S 7. Public and financial accountability standards. a.  Annual  public
   28  report.  The institute shall issue an annual report to the public, which
   29  sets forth its activities, grants awarded, grants in progress,  research
   30  accomplishments,  and  future  program  directions.   Each annual report
   31  shall include, but not be limited to, the following:
   32    (1) the number and dollar amounts of research and facilities grants;
   33    (2) the grantees for the prior year;
   34    (3) the institute's administrative expenses;
   35    (4) an assessment  of  the  availability  of  funding  for  stem  cell
   36  research from sources other than the institute;
   37    (5)  a  summary of research findings, including promising new research
   38  areas;
   39    (6) an assessment of the relationship between the  institute's  grants
   40  and the overall strategy of its research program;
   41    (7)  a  report  of  the  institute's  strategic research and financial
   42  plans.
   43    b. Independent financial audit for review by  state  comptroller.  The
   44  institute  shall  annually  commission an independent financial audit of
   45  its activities from a certified public accounting firm, which  shall  be
   46  provided  to the state comptroller, who shall review the audit and annu-
   47  ally issue a public report of that review.
   48    c. Citizen's financial accountability oversight committee. There shall
   49  be a citizen's financial accountability oversight committee  chaired  by
   50  the  state comptroller. This committee shall review the annual financial
   51  audit, the state comptroller's report and evaluation of that audit,  and
   52  the  financial  practices  of  the institute. The state comptroller, the
   53  state treasurer, the president pro tempore of the senate, the speaker of
   54  the assembly, and the chairperson of the  board  shall  each  appoint  a
   55  public  member  of  the  committee. Committee members shall have medical
   56  backgrounds and knowledge of relevant financial matters.  The  committee
       S. 1133                             4
    1  shall  provide recommendations on the institute's financial practice and
    2  performance.  The state comptroller shall  provide  staff  support.  The
    3  committee shall hold a public meeting, with appropriate notice, and with
    4  a  formal  public  comment  period.  The committee shall evaluate public
    5  comments and include appropriate summaries in  its  annual  report.  The
    6  board  shall  provide  funds  for the per diem expenses of the committee
    7  members and for publication of the annual report.
    8    S 8. Conflicts of interest. a. No member  of  the  board  shall  make,
    9  participate  in making, or in any way attempt to use his or her official
   10  position to influence a decision to approve or award a grant,  loan,  or
   11  contract to his or her employer, but a member may participate in a deci-
   12  sion to approve or award a grant, loan, or contract to a nonprofit enti-
   13  ty in the same field as his or her employer.
   14    b.  A  member of the board may participate in a decision to approve or
   15  award a grant, loan, or  contract  to  an  entity  for  the  purpose  of
   16  research involving a disease from which a member or his or her immediate
   17  family  suffers  or  in  which the member has an interest as a represen-
   18  tative of a disease advocacy organization.
   19    c. The adoption of  standards  is  not  a  decision  subject  to  this
   20  section.
   21    d.  Service  as  a  member  of the board by a member of the faculty or
   22  administration of any system of  the  state  university  shall  not,  by
   23  itself, be deemed to be inconsistent, incompatible, in conflict with, or
   24  inimical to the duties of the board member as a member of the faculty or
   25  administration  of  any  system  of  the  state university and shall not
   26  result in the automatic vacation of either such office.
   27    e. Service as a member of the board by a representative or employee of
   28  a disease advocacy  organization,  a  nonprofit  academic  and  research
   29  institution,  or a life science commercial entity shall not be deemed to
   30  be inconsistent, incompatible, in conflict  with,  or  inimical  to  the
   31  duties  of  the  board  member  as  a representative or employee of that
   32  organization, institution, or entity.
   33    S 9. Patent royalties and license revenues. The board shall  establish
   34  standards  that  require  that  all grants and loan awards be subject to
   35  intellectual property agreements that balance  the  opportunity  of  the
   36  state  of  New York to benefit from the patents, royalties, and licenses
   37  that result from  basic  research,  therapy  development,  and  clinical
   38  trials  with  the  need to assure that essential medical research is not
   39  unreasonably hindered by the intellectual property agreements.
   40    S 10. Preference for New York suppliers.  The  board  shall  establish
   41  standards  to  ensure that grantees purchase goods and services from New
   42  York suppliers to the extent reasonably possible, in a good faith effort
   43  to achieve a goal of more than fifty percent of such purchases from  New
   44  York suppliers.
   45    S  11.  This act shall take effect only in the event that a chapter of
   46  the laws of 2009 entitled "AN ACT authorizing the creation of state debt
   47  to the amount of one billion dollars; creating the New  York  stem  cell
   48  research  bond act of 2009, to provide moneys for the development of the
   49  New York Stem Cell Research Institute, and providing for the  submission
   50  to  the people of a proposition or question therefor to be voted upon at
   51  the general election in November 2009", is approved by the people at the
   52  general election to be held in November, 2009.  Upon such approval, this
   53  act shall take effect immediately.  Effective immediately, the addition,
   54  amendment, and/or repeal of any rule or  regulation  necessary  for  the
   55  implementation  of the foregoing sections of this act are authorized and
   56  directed to be made and completed on or before such effective date.
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