S T A T E O F N E W Y O R K
________________________________________________________________________
1219
2015-2016 Regular Sessions
I N A S S E M B L Y
January 8, 2015
___________
Introduced by M. of A. CAHILL -- Multi-Sponsored by -- M. of A. BRENNAN,
CYMBROWITZ, JAFFEE, MARKEY -- 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.
LBD06176-01-5
A. 1219 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, 2017, and a final
report on or before December 1, 2017.
S 2. This act shall take effect immediately.