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.
STATE OF NEW YORK
________________________________________________________________________
3731
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.
LBD00624-01-9
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.
