S03731 Summary:

SAME ASNo same as
Establishes an eleven member genetics advisory council; provides for its powers, functions and duties; provides for a preliminary report to the governor and legislature before March 1, 2010 and a final report by December 1, 2010 on issues relating to genetic counseling, genetic testing and public education.
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S03731 Actions:

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S03731 Text:

                STATE OF NEW YORK
                               2009-2010 Regular Sessions
                    IN SENATE
                                     March 30, 2009
        Introduced  by  Sen. LAVALLE -- read twice and ordered printed, and when
          printed to be committed to the Committee on Health
        AN ACT in relation to establishing a genetics advisory council
          The People of the State of New York, represented in Senate and  Assem-
        bly, do enact as follows:

     1    Section  1.  Genetics advisory council. 1. The New York state genetics
     2  advisory council is hereby  established.  It  shall  consist  of  eleven
     3  members  appointed  by  the governor, three of whom shall be nominees of
     4  the temporary president of the senate, three of whom shall  be  nominees
     5  of  the  speaker of the assembly, three of whom shall be nominees of the
     6  commissioner of health, one of whom shall be a nominee of  the  minority
     7  leader of the senate, and one of whom shall be a nominee of the minority
     8  leader  of  the  assembly.    Of the eleven members, no fewer than three
     9  shall be practicing genetic counselors with at least five years' profes-
    10  sional experience in the state of New York, one nominated  each  by  the
    11  department  of  health,  the  temporary  president of the senate and the
    12  speaker of the assembly; no fewer than two  shall  be  clinical  geneti-

    13  cists,  medical geneticists or genetic laboratory specialists (molecular
    14  biologists with a genetics specialization) both nominated by the depart-
    15  ment of health; two shall be bio-ethicists associated  with  a  research
    16  institute in bio-medical ethics located in New York state one each nomi-
    17  nated  by  the  temporary president of the senate and the speaker of the
    18  assembly; no fewer than one shall be associated with an  advocacy  group
    19  for  persons  suffering from or genetically predisposed to a genetically
    20  influenced disease; and no fewer than one representative from an  insur-
    21  ance company shall be an expert on the topic of the use of genetic test-
    22  ing  by  insurers. Membership on the advisory council shall be geograph-
    23  ically representative of the state. The members shall serve  three  year
    24  terms,  except  that of the first three nominees of the temporary presi-

    25  dent of the senate, the speaker of the assembly, and the commissioner of
    26  health, in each case, one shall serve for four years and one shall serve
         EXPLANATION--Matter in italics (underscored) is new; matter in brackets
                              [ ] is old law to be omitted.

        S. 3731                             2
     1  for two years. The chairperson shall be selected by majority vote of the
     2  members of the council. The council  shall  meet  at  the  call  of  the
     3  commissioner  of  health,  but  no less than three times per year. Seven
     4  members shall constitute a quorum.
     5    2.  The members of the council shall receive no compensation for their
     6  services as members of the council, but each of them  shall  be  allowed

     7  the  necessary  and  actual  expenses which he or she shall incur in the
     8  performance of his or her duties under this section. The  department  of
     9  health  shall provide staff and support necessary for the advisory coun-
    10  cil to carry out its duties and responsibilities.
    11    3. The genetics advisory council shall study and make  recommendations
    12  to the governor and the legislature with respect to:
    13    (a)  the  need  for  legislation to register, certify or license those
    14  persons providing the services  of  genetic  counseling,  including  any
    15  continuing  professional  education  necessary to ensure the currency of
    16  their knowledge of the rapidly developing field of genetics;
    17    (b) ensuring the availability of adequate professional  genetic  coun-
    18  seling to individuals found to have a genetic risk with potential conse-
    19  quences to their health;

    20    (c)  creating an environment in which there is equitable access to the
    21  benefits of genetic tests to all citizens regardless of race,  ethnicity
    22  or economic status;
    23    (d)  the use of any genetic test by insurers, employers or educational
    24  institutions, including the potential for  compromising  the  individual
    25  liberties  and  civil  rights  of  individuals or causing individuals to
    26  suffer unfair discrimination;
    27    (e) identify those genetic tests which predict with very  high  proba-
    28  bility  life-threatening  diseases or severe disability and to recommend
    29  genetic counseling by designated professionals as a necessary  component
    30  of informed consent to undergo such tests;
    31    (f)  criteria by which primary care and other physicians should recog-
    32  nize the need to refer patients for genetic counseling; and
    33    (g) make recommendations regarding available public education  includ-

    34  ing technology and biotechnology related initiatives, and to make recom-
    35  mendations regarding genetic professional training requirements.
    36    4.  The  advisory  council  shall  submit  a preliminary report to the
    37  governor and the legislature on or before March 1,  2010,  and  a  final
    38  report on or before December 1, 2010.
    39    § 2. This act shall take effect immediately.
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