S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                    592
 
                        2021-2022 Regular Sessions
 
                           I N  A S S E M B L Y
 
                                (PREFILED)
 
                              January 6, 2021
                                ___________
 
 Introduced by M. of A. CAHILL -- Multi-Sponsored by -- M. of A. CYMBROW-
   ITZ  --  read once and referred to the Committee on Governmental Oper-
   ations
 
 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:
 
   Section  1.  Genetics advisory council. 1. The New York state genetics
 advisory council is hereby  established.  It  shall  consist  of  eleven
 members  appointed  by  the governor, three of whom shall be nominees of
 the temporary president of the senate, three of whom shall  be  nominees
 of  the  speaker of the assembly, three of whom shall be nominees of the
 commissioner of health, one of whom shall be a nominee of  the  minority
 leader of the senate, and one of whom shall be a nominee of the minority
 leader  of  the  assembly.    Of the eleven members, no fewer than three
 shall be practicing genetic counselors with at least five years' profes-
 sional experience in the state of New York, one nominated  each  by  the
 department  of  health,  the  temporary  president of the senate and the
 speaker of the assembly; no fewer than two  shall  be  clinical  geneti-
 cists,  medical geneticists or genetic laboratory specialists (molecular
 biologists with a genetics specialization) both nominated by the depart-
 ment of health; two shall be bio-ethicists associated  with  a  research
 institute  in  bio-medical  ethics  located  in New York state, one each
 nominated by the temporary president of the senate and  the  speaker  of
 the  assembly;  no  fewer  than one shall be associated with an advocacy
 group for persons suffering from or genetically predisposed to a  genet-
 ically  influenced disease; and no fewer than one representative from an
 insurance company shall be an expert on the topic of the use of  genetic
 testing  by  insurers.  Membership  on  the  advisory  council  shall be
 geographically representative of the  state.  The  members  shall  serve
 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.
                                                            LBD01433-01-1

 A. 592                              2
 
 rary president of the senate, the  speaker  of  the  assembly,  and  the
 commissioner of health, in each case, one shall serve for four years and
 one  shall  serve  for  two  years. The chairperson shall be selected by
 majority  vote  of the members of the council. The council shall meet at
 the call of the commissioner of health, but no less than three times per
 year. Seven members shall constitute a quorum.
   2. The members of the council shall receive no compensation for  their
 services  as  members  of the council, but each of them shall be allowed
 the necessary and actual expenses which he or she  shall  incur  in  the
 performance  of  his or her duties under this section. The department of
 health shall provide staff and support necessary for the advisory  coun-
 cil to carry out its duties and responsibilities.
   3.  The genetics advisory council shall study and make recommendations
 to the governor and the legislature with respect to:
   (a) the need for legislation to register,  certify  or  license  those
 persons  providing  the  services  of  genetic counseling, including any
 continuing professional education necessary to ensure  the  currency  of
 their knowledge of the rapidly developing field of genetics;
   (b)  ensuring  the availability of adequate professional genetic coun-
 seling to individuals found to have a genetic risk with potential conse-
 quences to their health;
   (c) creating an environment in which there is equitable access to  the
 benefits  of genetic tests to all citizens regardless of race, ethnicity
 or economic status;
   (d) the use of any genetic test by insurers, employers or  educational
 institutions,  including  the  potential for compromising the individual
 liberties and civil rights of  individuals  or  causing  individuals  to
 suffer unfair discrimination;
   (e)  identify  those genetic tests which predict with very high proba-
 bility life-threatening diseases or severe disability and  to  recommend
 genetic  counseling by designated professionals as a necessary component
 of informed consent to undergo such tests;
   (f) criteria by which primary care and other physicians should  recog-
 nize the need to refer patients for genetic counseling; and
   (g)  make recommendations regarding available public education includ-
 ing technology and biotechnology related initiatives, and to make recom-
 mendations regarding genetic professional training requirements.
   4. The advisory council shall  submit  a  preliminary  report  to  the
 governor  and  the  legislature  on or before March 1, 2023, and a final
 report on or before December 1, 2023.
   § 2. This act shall take effect immediately.