A01153 Summary:

BILL NO    A01153 

SAME AS    No same as 

SPONSOR    Cahill (MS)

COSPNSR    Markey, Cymbrowitz, Jaffee

MLTSPNSR   Brennan, Gabryszak



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, 2015 and a final report by December 1, 2015 on
issues relating to genetic counseling, genetic testing and public education.
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A01153 Actions:

BILL NO    A01153 

01/09/2013 referred to governmental operations
01/08/2014 referred to governmental operations
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A01153 Text:

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

                                         1153

                              2013-2014 Regular Sessions

                                 I N  A S S E M B L Y

                                      (PREFILED)

                                    January 9, 2013
                                      ___________

       Introduced by M. of A. CAHILL, MARKEY, CYMBROWITZ, JAFFEE -- Multi-Spon-
         sored  by -- M. of A.  BRENNAN, GABRYSZAK -- read once and referred to
         the Committee on Governmental Operations

       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
   17  nominated by the temporary president of the senate and  the  speaker  of
   18  the  assembly;  no  fewer  than one shall be associated with an advocacy
   19  group for persons suffering from or genetically predisposed to a  genet-
   20  ically  influenced disease; and no fewer than one representative from an
   21  insurance company shall be an expert on the topic of the use of  genetic
   22  testing  by  insurers.  Membership  on  the  advisory  council  shall be
   23  geographically representative of the  state.  The  members  shall  serve
   24  three  year terms, except that of the first three nominees of the tempo-

        EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                             [ ] is old law to be omitted.
                                                                  LBD03755-01-3
       A. 1153                             2

    1  rary president of the senate, the  speaker  of  the  assembly,  and  the
    2  commissioner of health, in each case, one shall serve for four years and
    3  one  shall  serve  for  two  years. The chairperson shall be selected by
    4  majority  vote  of the members of the council. The council shall meet at
    5  the call of the commissioner of health, but no less than three times per
    6  year. Seven members shall constitute a quorum.
    7    2. The members of the council shall receive no compensation for  their
    8  services  as  members  of the council, but each of them shall be allowed
    9  the necessary and actual expenses which he or she  shall  incur  in  the
   10  performance  of  his or her duties under this section. The department of
   11  health shall provide staff and support necessary for the advisory  coun-
   12  cil to carry out its duties and responsibilities.
   13    3.  The genetics advisory council shall study and make recommendations
   14  to the governor and the legislature with respect to:
   15    (a) the need for legislation to register,  certify  or  license  those
   16  persons  providing  the  services  of  genetic counseling, including any
   17  continuing professional education necessary to ensure  the  currency  of
   18  their knowledge of the rapidly developing field of genetics;
   19    (b)  ensuring  the availability of adequate professional genetic coun-
   20  seling to individuals found to have a genetic risk with potential conse-
   21  quences to their health;
   22    (c) creating an environment in which there is equitable access to  the
   23  benefits  of genetic tests to all citizens regardless of race, ethnicity
   24  or economic status;
   25    (d) the use of any genetic test by insurers, employers or  educational
   26  institutions,  including  the  potential for compromising the individual
   27  liberties and civil rights of  individuals  or  causing  individuals  to
   28  suffer unfair discrimination;
   29    (e)  identify  those genetic tests which predict with very high proba-
   30  bility life-threatening diseases or severe disability and  to  recommend
   31  genetic  counseling by designated professionals as a necessary component
   32  of informed consent to undergo such tests;
   33    (f) criteria by which primary care and other physicians should  recog-
   34  nize the need to refer patients for genetic counseling; and
   35    (g)  make recommendations regarding available public education includ-
   36  ing technology and biotechnology related initiatives, and to make recom-
   37  mendations regarding genetic professional training requirements.
   38    4. The advisory council shall  submit  a  preliminary  report  to  the
   39  governor  and  the  legislature  on or before March 1, 2015, and a final
   40  report on or before December 1, 2015.
   41    S 2. This act shall take effect immediately.
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