Bill S1249-2013

Creates the New York Stem Cell Research Institute

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.

Details

Actions

  • Jan 8, 2014: REFERRED TO HEALTH
  • Jan 9, 2013: REFERRED TO HEALTH

Memo

BILL NUMBER:S1249

TITLE OF BILL: An act creating the New York Stem Cell Research Institute

PURPOSE: This bill establishes the New York Stem Cell Research Institute, sets forth procedures for the appointments of the New York state stem cell board, and establishes guidelines for the distribution of grants for the advancement of stem cell research.

SUMMARY OF SPECIFIC PROVISIONS: Sections 1 through 3 set forth the legislative intent and establishes the New York Stem Cell Research Institute. The institute shall have the following purposes:

- Make grants and loans for stem cell research, for facilities, and for other vital research opportunities to realize therapies, protocols, and/or medical procedures that will result in the cure for, or substantial mitigation of, major diseases, injuries and orphan diseases.

- Support all stages of the process of developing cures, from laboratory research through successful clinical trials.

- Establish appropriate regulatory standards and oversight bodies for research and facilities development.

- Ban the use of any funds from the institute to be used for research involving human reproductive cloning.

Sections 4 through 6 establishes the New York stem cell board. This board shall consist of nineteen appointed members: five from the Governor, 3 from the temporary president of the senate, three from the speaker of the assembly, two each from the minority leaders in each house, and two from the state comptroller and two from the attorney general. Board members terms shall be for six years.

The board shall elect a chairperson and vice chair. Such individuals shall meet the following criteria:

- a documented history in successful stem cell research advocacy;

- experience with state and federal legislative process;

- not currently employed by a prospective grant recipient;

- experience in establishing governmental standards; and

- direct knowledge and experience in bond financing.

Section 7 sets forth public and financial accountability standards, including an independent financial audit for review by the state comptroller.

Section 8 establishes guidelines for conflicts of interest.

Section 9 establishes standards for patent royalties and license revenues.

Section 10 gives preference to New York suppliers.

Section 11 is the effective date.

EXISTING LAW: None.

JUSTIFICATION: 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 injuries, blindness, Lou Gehrig's disease, HIV/AIDS, mental health disorders, multiple sclerosis, Huntington's disease, and more than seventy other diseases and injuries.

Recently, medical science has discovered a new way to attack chronic disease and injures. The cure and treatment of these diseases can potentially be accomplished throughout the use of new regenerative medical therapies including a special type of human cells, called stem cells. These lifesaving medical breakthroughs can only happen if adequate funding is made available to advance stem cell research, develop therapies, and conduct clinical trials.

Unfortunately, the federal government is not providing adequate funding necessary for the urgent research and facilities needed to develop stem cell therapies to treat and cure disease and serious injuries. This critical funding gap currently prevents the rapid advancement of research that could benefit millions of New Yorkers.

This legislation would establish the New York Stem Cell Institute, to make grants for opportunities in the area of stem cell research.

LEGISLATIVE HISTORY: 2011-12: S.2784 - Referred to Health 2009-10: S.1133 - Referred to Health 2007-08: S.2923 - Referred to Health 2005-06: S.5932 - Referred to Health

FISCAL IMPLICATIONS: None.

LOCAL FISCAL IMPLICATIONS: None.

EFFECTIVE DATE: Immediately.


Text

STATE OF NEW YORK ________________________________________________________________________ 1249 2013-2014 Regular Sessions IN SENATE (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:
(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;
(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
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.

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