Establishes a genetics advisory council

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.