S T A T E   O F   N E W   Y O R K
 ________________________________________________________________________
 
                                   1463
 
                        2017-2018 Regular Sessions
 
                           I N  A S S E M B L Y
 
                             January 12, 2017
                                ___________
 
 Introduced by M. of A. CAHILL -- Multi-Sponsored by -- M. of A. CYMBROW-
   ITZ, JAFFEE -- 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:

   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-
 rary  president  of  the  senate,  the  speaker of the assembly, and the
 
  EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                       [ ] is old law to be omitted.
              

                                                            LBD01391-01-7

 A. 1463                             2
 
 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,  2019,  and  a  final
 report on or before December 1, 2019.
   § 2. This act shall take effect immediately.