S T A T E   O F   N E W   Y O R K
________________________________________________________________________

                                  1249

                       2013-2014 Regular Sessions

                            I N  S E N A T E

                               (PREFILED)

                             January 9, 2013
                               ___________

Introduced  by  Sens.  PERKINS, HASSELL-THOMPSON, STAVISKY -- 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:

  Section  1.  Short  title. This act shall be known and may be cited as
the "New York Stem Cell Research Institute act".
  S 2. Legislative intent. Millions of children and adults  suffer  from
devastating diseases or injuries that are currently incurable, including
cancer,  diabetes, heart disease, Parkinson's disease, spinal cord inju-
ries, blindness, Lou Gehrig's disease, HIV/AIDS,  mental  health  disor-
ders,  multiple  sclerosis,  Huntington's disease, and more than seventy
other diseases and injuries.
  Recently, medical science has discovered a new way to  attack  chronic
diseases  and  injuries.  The  cure  and treatment of these diseases can
potentially be accomplished through the use of new regenerative  medical
therapies  including  a  special type of human cells, called stem cells.
These life-saving medical breakthroughs  can  only  happen  if  adequate
funding  is made available to advance stem cell research, develop thera-
pies, and conduct clinical trials.
  Unfortunately, the federal government is not  providing  the  adequate
funding  necessary  for  the  urgent  research  and facilities needed to
develop stem cell therapies to treat and cure diseases and serious inju-
ries. This critical funding gap currently prevents the rapid advancement
of research that could benefit millions of New Yorkers.
  S 3. New York Stem Cell Research Institute. a. There is hereby created
an institute to be known as the New York Stem Cell  Research  Institute,
which shall have the following purposes:

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD03578-01-3
              

S. 1249                             2

  (1)  To  make  grants  and  loans for stem cell research, for research
facilities, and for other vital research opportunities to realize thera-
pies, protocols, and/or medical  procedures  that  will  result  in,  as
speedily  as  possible,  the cure for, and/or substantial mitigation of,
major diseases, injuries, and orphan diseases.
  (2)  To  support  all  stages of the process of developing cures, from
laboratory research through successful clinical trials.
  (3) To establish appropriate regulatory standards and oversight bodies
for research and facilities development.
  b. No fund authorized for, or made available to, the  institute  shall
be used for research involving human reproductive cloning.
  c.  Funds authorized for, or made available to, the institute shall be
continuously appropriated without regard to fiscal  year,  be  available
and  used  only  for the purposes provided in this act, and shall not be
subject to appropriation or transfer by the legislature or the  governor
for any other purpose.
  S  4.  There  shall  be  established within the institute the New York
state stem cell board, hereinafter, the board, which  shall  govern  the
institute and is hereby vested with full power, authority, and jurisdic-
tion over the institute.
  S  5.  The  New  York  state  stem  cell  board. a. The board shall be
composed of nineteen members, who shall be appointed  in  the  following
manner:  five  shall  be  appointed  by  the  governor;  three  shall be
appointed by the temporary president of the senate; two by the  minority
leader  of  the  senate;  three shall be appointed by the speaker of the
assembly; two by the minority leader of the assembly; two by  the  state
comptroller;  and two by the attorney general.  The members of the board
shall be representative  of  the  public,  not-for-profit  academic  and
research  institutions,  life  science  commercial entities, and disease
advocacy groups.
  b. All appointments shall be made within forty days of  the  effective
date  of  this  act.  In  the event that any of the appointments are not
completed within the permitted time frame, the board  shall  proceed  to
operate  with the appointments that are in place, provided that at least
sixty percent of the appointments have been made.
  c. Board members shall serve six-year terms.  Members  shall  serve  a
maximum  of two terms. If a vacancy occurs within a term, the appointing
authority shall serve a maximum of two terms. If a vacancy occurs within
a term, the appointing authority  shall  appoint  a  replacement  member
within  thirty  days  to  serve  the  remainder of the term. When a term
expires, the appointing authority shall appoint a member  within  thirty
days. The board members shall continue to serve until their replacements
are appointed.
  S  6.  The  board  shall  have the following powers and duties: a. The
board shall elect a chairperson and vice chairperson within  forty  days
of  the  effective  date  of this act. Each constitutional officer shall
nominate a candidate for chairperson  and  another  candidate  for  vice
chairperson.  The chairperson and vice chairperson shall each be elected
for  a  term  of  six years. The chairperson and vice chairperson of the
board shall be full or part time employees of the  institute  and  shall
meet the following criteria:
  (1) have a documented history in successful stem cell research advoca-
cy;
  (2)  have experience with state and federal legislative processes that
must include some experience with medical legislative approvals of stan-
dards and/or funding;

S. 1249                             3

  (3) are not concurrently employed by or on leave from any  prospective
grant or loan recipient institutions in New York;
  (4) have experience with governmental agencies or institutions, either
executive or board position;
  (5)  have  experience  with  the  process of establishing governmental
standards and procedures;
  (6) have legal experience with the legal review of proper governmental
authority for the exercise of government agency or  government  institu-
tional powers;
  (7) have direct knowledge and experience in bond financing.
  b.  Actions  of  the  board  may be taken only by a majority vote of a
quorum of the board.
  c. The board shall oversee the operations of the institute.
  d. The board shall develop annual and long-term strategic research and
financial plans for the institute.
  e. The board shall make final  decisions  on  research  standards  and
grant awards in New York.
  f.  Ensure  the  completion of an annual financial audit of the insti-
tute's operations.
  g. Issue public reports on the activities of the institute.
  h. Establish policies regarding intellectual property  rights  arising
from research funded by the institute.
  i.  Establish  rules and guidelines for the operation of the board and
its working groups.
  j. Perform all other acts necessary or appropriate in the exercise  of
its power, authority, and jurisdiction over the institute.
  k.  Adopt,  amend,  and rescind rules and regulations to carry out the
purposes and provisions of this act, and to govern the procedures of the
board. These rules and regulations shall be adopted in  accordance  with
the state administrative procedure act.
  S  7.  Public and financial accountability standards. a. Annual public
report. The institute shall issue an annual report to the public,  which
sets  forth its activities, grants awarded, grants in progress, research
accomplishments, and future program  directions.    Each  annual  report
shall include, but not be limited to, the following:
  (1) the number and dollar amounts of research and facilities grants;
  (2) the grantees for the prior year;
  (3) the institute's administrative expenses;
  (4)  an  assessment  of  the  availability  of  funding  for stem cell
research from sources other than the institute;
  (5) a summary of research findings, including promising  new  research
areas;
  (6)  an  assessment of the relationship between the institute's grants
and the overall strategy of its research program;
  (7) a report of  the  institute's  strategic  research  and  financial
plans.
  b.  Independent  financial  audit for review by state comptroller. The
institute shall annually commission an independent  financial  audit  of
its  activities  from a certified public accounting firm, which shall be
provided to the state comptroller, who shall review the audit and  annu-
ally issue a public report of that review.
  c. Citizen's financial accountability oversight committee. There shall
be  a  citizen's financial accountability oversight committee chaired by
the state comptroller. This committee shall review the annual  financial
audit,  the state comptroller's report and evaluation of that audit, and
the financial practices of the institute.  The  state  comptroller,  the

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state  treasurer,  the temporary president of the senate, the speaker of
the assembly, and the chairperson of the  board  shall  each  appoint  a
public  member  of  the  committee. Committee members shall have medical
backgrounds  and  knowledge of relevant financial matters. The committee
shall provide recommendations on the institute's financial practice  and
performance.    The  state  comptroller shall provide staff support. The
committee shall hold a public meeting, with appropriate notice, and with
a formal public comment period.  The  committee  shall  evaluate  public
comments  and  include  appropriate  summaries in its annual report. The
board shall provide funds for the per diem  expenses  of  the  committee
members and for publication of the annual report.
  S  8.  Conflicts  of  interest.  a. No member of the board shall make,
participate in making, or in any way attempt to use his or her  official
position  to  influence a decision to approve or award a grant, loan, or
contract to his or her employer, but a member may participate in a deci-
sion to approve or award a grant, loan, or contract to a nonprofit enti-
ty in the same field as his or her employer.
  b. A member of the board may participate in a decision to  approve  or
award  a  grant,  loan,  or  contract  to  an  entity for the purpose of
research involving a disease from which a member or his or her immediate
family suffers or in which the member has an  interest  as  a  represen-
tative of a disease advocacy organization.
  c.  The  adoption  of  standards  is  not  a  decision subject to this
section.
  d. Service as a member of the board by a  member  of  the  faculty  or
administration  of  any  system  of  the  state university shall not, by
itself, be deemed to be inconsistent, incompatible, in conflict with, or
inimical to the duties of the board member as a member of the faculty or
administration of any system of  the  state  university  and  shall  not
result in the automatic vacation of either such office.
  e. Service as a member of the board by a representative or employee of
a  disease  advocacy  organization,  a  nonprofit  academic and research
institution, or a life science commercial entity shall not be deemed  to
be  inconsistent,  incompatible,  in  conflict  with, or inimical to the
duties of the board member as  a  representative  or  employee  of  that
organization, institution, or entity.
  S  9. Patent royalties and license revenues. The board shall establish
standards that require that all grants and loan  awards  be  subject  to
intellectual  property  agreements  that  balance the opportunity of the
state of New York to benefit from the patents, royalties,  and  licenses
that  result  from  basic  research,  therapy  development, and clinical
trials with the need to assure that essential medical  research  is  not
unreasonably hindered by the intellectual property agreements.
  S  10.  Preference  for  New York suppliers. The board shall establish
standards to ensure that grantees purchase goods and services  from  New
York suppliers to the extent reasonably possible, in a good faith effort
to  achieve a goal of more than fifty percent of such purchases from New
York suppliers.
  S 11. This act shall take effect immediately.