S1107

SENATE, No. 1107

STATE OF NEW JERSEY

INTRODUCED MAY 9, 1996

By Senators BUBBA and CAFIERO

An Act establishing the "New Jersey Breast and Ovarian Cancer Response Task Force" and making an appropriation.

Be It Enacted by the Senate and General Assembly of the State of New Jersey:

1. The Legislature finds and declares that:

a. Each year, 205,000 women are diagnosed with either breast or ovarian cancer. New Jersey, with 6,900 new cases of breast cancer a year, is estimated as having the second highest rate of breast cancer incidence of all 50 states. Early detection can dramatically increase the five-year survival rate of some of these women from 16% to 92%;

b. BRCA1 is a large gene found on the 17th chromosome which produces the protein secreted by breast and ovarian cells. The protein acts as a tumor suppressor and the loss of its function may result in tumor development. A new genetic test has been developed which identifies dangerous DNA mutations in BRCA1, mutations which scientists now say can cause inherited breast and ovarian cancer. Those women who carry the mutation have an 85% chance of developing breast cancer by the time they reach the age of 65. The new test can be used by doctors to alert women to their predisposition to these types of cancer;

c. This new discovery has prompted a debate within the scientific and medical communities as to the test's value as a diagnostic tool. Certain experts claim that the test is only predictive and cannot help doctors determine who will become sick and who will not. Critics believe that laboratories responsible for developing the test will sell them directly to doctors, who, according to a survey reported recently in The Journal of the American Medical Association, feel that they are inadequately prepared in the area of human genetics and DNA diagnostics and therefore could not properly interpret results. Furthermore, a legal framework has not been established which could help the medical community deal with the issues of BRCA1 testing procedures and test results, including who should be tested, how test results may be used by insurance carriers, who may deny women health care coverage, or how employers may use the test to screen potential applicants for employment;

d. For other experts, the test's value in diagnosing inherited breast cancer before symptoms appear outweigh the negative societal implications of the commercial availability of the test. Greater awareness of a patient's BRCA1 status could help doctors develop more effective treatment strategies geared at preventing later tumors. The mothers, daughters and sisters of patients can use test results to alert themselves to the fact that they must be monitored more closely for the onset of breast cancer. Additionally, breast cancer patients with BRCA1 mutations also have a higher risk of developing ovarian cancer. Knowledge of that fact could motivate such women to undergo frequent pelvic examinations to try to identify ovarian malignancies at an earlier stage of development;

e. Therefore, it is the duty of the Legislature to study the societal implications of the new testing procedure for BRCA1 and its usefulness as a diagnostic tool in order to help the women of this State and their doctors make informed decisions on who should be tested and how test results should be used.

2. There is established the "New Jersey Breast and Ovarian Cancer Response Task Force." The purpose of the task force is to investigate the societal and medical implications of the new testing procedures for the detection of the BRCA1 gene and to make recommendations to State government and the medical community concerning the commercial availability of the test, the use of the test by the medical community, the dissemination of test results, and the privacy of the women who have tested positive for the gene.

3. a. The task force shall consist of 26 members as follows: the Commissioners of Human Services and Community Affairs and the President of the University of Medicine and Dentistry of New Jersey, or their designees, as exofficio members; 16 public members appointed by the Governor, who include one representative of each of the following organizations: the Medical Society of New Jersey, the New Jersey State Nurses Association, the American Cancer Society-New Jersey Division, the New Jersey Hospital Association, the New Jersey Pharmaceutical Association, the National Council of Jewish Women, the New Jersey Psychiatric Association, Wayne General Hospital, the National Organization for Women of New Jersey and the Concerned Women of America, and three breast or ovarian cancer survivors and three spouses of of wives who have or have had breast or ovarian cancer; four members appointed by the Legislature, two of whom shall be appointed by the President of the Senate and two of whom shall be appointed by the Speaker of the General Assembly; and three members appointed by the President of the University of Medicine and Dentistry of New Jersey who are associated with or employed by the university.

b. Vacancies in the membership of the task force shall be filled in the same manner provided by the original appointments. The members of the task force shall serve without compensation but may be reimbursed for traveling and other miscellaneous expenses necessary to perform their duties, within the limits of funds made available to the task force for its purposes.

4. a. The task force shall be entitled to call upon the services of any State, county, or municipal department, board, commission or agency, as may be available for these purposes, and to incur such traveling and other miscellaneous expenses as it may deem necessary for the proper execution of all its duties and as may be within the limit of funds appropriated or otherwise made available for these purposes. b. The University of Medicine and Dentistry of New Jersey shall provide professional and clerical staff to the task force as necessary to effectuate the purposes of this act.

5. The task force shall report to the Governor and the Legislature on its activities no later than 18 months following the organization of the task force. The task force shall present a report of its findings and recommendations for legislative and regulatory changes as the task force deems appropriate to further the State's understanding of the social and medical implications of the BRCA1 genetic test.

6. There is appropriated $50,000 from the General Fund to the task force to effectuate the purposes of this act.

7. This act shall take effect immediately and shall expire 20 months after the date of enactment.

STATEMENT

This bill establishes the "New Jersey Breast and Ovarian Cancer Response Task Force." The purpose of the 26-member task force is to investigate the societal and medical implications of the new testing procedures for the detection of the BRCA1 gene and to make recommendations to State government and the medical community concerning the commercial availability of the test, use of the test by the medical community, the dissemination of test results, and the privacy of the women who have tested positive for the gene.

Breast and ovarian cancer affect over 200,000 American women each year and the development of a test identifying mutations on the BRCA1 gene, which may help doctors diagnose potential breast cancer victims before the onset of symptoms, is a significant medical breakthrough. It is the duty of the State to study the information being produced by the medical and scientific community on the new test and its usefulness as a diagnostic tool in order to help the women of New Jersey and their doctors make informed decisions on who should be tested and how test results are to be used.

The bill also requires the task force to present a report to the Governor and the Legislature on its findings and recommendations for legislative and regulatory changes no later than 18 months following its organization.

Establishes the "N.J. Breast and Ovarian Cancer Response Task Force;" appropriates $50,000.