NY State Senate Bill 2009-S3731

Archive: Last Bill Status - In Senate Committee Health Committee

Introduced
- In Committee Assembly
- In Committee Senate
- On Floor Calendar Assembly
- On Floor Calendar Senate
- Passed Assembly
- Passed Senate
Delivered to Governor
Signed By Governor

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Date of Action	Assembly Actions - Lowercase Senate Actions - UPPERCASE
Jan 06, 2010	referred to health
Mar 30, 2009	referred to health

2009-S3731 (ACTIVE) - Details

Current Committee:: Senate Health
Law Section:: Health

2009-S3731 (ACTIVE) - Summary

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.

2009-S3731 (ACTIVE) - Sponsor Memo

                                 BILL NUMBER:  S3731

 TITLE OF BILL :

An act in relation to establishing a genetics advisory council


 PURPOSE :

This bill would establish in statute a genetics advisory council. The
council would make recommendations to the Governor and the Legislature
regarding a broad array of services related to genetic tests, access
to information, privacy and counseling.

 SUMMARY OF PROVISIONS :

Section 1 establishes the advisory council, which will consist of
eleven members, appointed by the Governor. Three shall be nominees of
the Speaker of the Assembly, three shall be nominees of the Senate
Majority Leader, three shall be nominees of the Commissioner of
Health, one shall be a nominee of the minority leader of the Senate
and one shall be a nominee of the minority leader of the Assembly.
The bill establishes professional criteria for the members, and
requires that one member be associated with an advocacy group for
persons with genetically influenced diseases and contain one
representative from an insurance company experienced in the use of

genetic testing by insurers.

Section 2 provides that members of the council not receive any
compensation but that they can be reimbursed for expenses.

Section 3 provides a list of specific charges for the council. These
include but are not limited to:

* The need for legislation to register, certify or license persons
providing genetic counseling, including necessary continuing
professional education requirements.

* Ensuring the availability of genetic counseling to those individuals
determined to be at risk.

* Ensuring equity with regard to access to genetic counseling.

* The use of genetic testing and genetic testing results by insurers,
employers and educational institutions particularly regarding
individual liberties and civil rights.

* Identifying those genetic tests with the highest success rate in
predicting potentially debilitating disease.

* Criteria for physician referral for genetic counseling.

* Recommendations regarding technology and biotechnology related
initiatives and professional training requirements.

Section 4 requires that the council submit a preliminary report on or
before March 1, 2010 and a final report on or before December 1, 2010,
to both the Governor and the Legislature.

 JUSTIFICATION :

With continued advancements in biomedical technology, our ability to
test and manipulate our genetic patterns will also continue to
develop. While these advancements in our understanding have the
ability to improve medical treatment significantly, there are also

many questions and concerns regarding the use of genetic information
and its various applications.

The issue of genetic information is complex. Basic definitions are
difficult to develop, access to such information touches a variety of
privacy issues, counseling is a recognized need, but exactly who is
qualified to provide it remains an open question. Although state law
requires informed consent prior to taking a genetic test, it does not
mandate such counseling. Clearly, however, to be fully informed,
professional counseling is needed.

This advisory counsel is necessary in order to allow the full
exploration and examination of these and related issues regarding the
use of genetic tests and genetic information. They can provide much
needed information about current applications, but can also study
future implications as well.

 LEGISLATIVE HISTORY :

2001-2002, S.6684; 2003-04, S.337; 2005-06, S.1092-C; 2007-08, S.1633.

 FISCAL IMPLICATIONS :

Minimal.

 EFFECTIVE DATE :
Immediately.

2009-S3731 (ACTIVE) - Bill Text download pdf

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

                                  3731

                       2009-2010 Regular Sessions

                            I N  S E N A T E

                             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:

  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 nomi-
nated  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 genetically
influenced disease; and no fewer than one representative from an  insur-
ance company shall be an expert on the topic of the use of genetic test-
ing  by  insurers. Membership on the advisory council shall be geograph-
ically representative of the state. The members shall serve  three  year
terms,  except  that of the first three nominees of the temporary presi-
dent 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

 EXPLANATION--Matter in ITALICS (underscored) is new; matter in brackets
                      [ ] is old law to be omitted.
                                                           LBD00624-01-9

S. 3731                             2

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,  2010,  and  a  final
report on or before December 1, 2010.
  S 2. This act shall take effect immediately.

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Senate Bill S3731

Sponsored By

Archive: Last Bill Status - In Senate Committee Health Committee

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2009-S3731 (ACTIVE) - Details

2009-S3731 (ACTIVE) - Summary

2009-S3731 (ACTIVE) - Sponsor Memo

2009-S3731 (ACTIVE) - Bill Text download pdf

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Sponsored By

Kenneth P. LaValle

Archive: Last Bill Status - In Senate Committee Health Committee

Actions

2009-S3731 (ACTIVE) - Details

2009-S3731 (ACTIVE) - Summary

2009-S3731 (ACTIVE) - Sponsor Memo

2009-S3731 (ACTIVE) - Bill Text download pdf

Comments