[Congressional Record Volume 143, Number 1 (Tuesday, January 7, 1997)]
[Extensions of Remarks]
[Pages E12-E13]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




         PREVENTING GENETIC DISCRIMINATION IN HEALTH INSURANCE

                                 ______
                                 

                     HON. LOUISE McINTOSH SLAUGHTER

                              of new york

                    in the house of representatives

                        Tuesday, January 7, 1997

  Ms. SLAUGHTER. Mr. Speaker, I rise today to announce the introduction 
of comprehensive legislation to prevent genetic discrimination in 
health insurance, an issue vital to the health of all Americans.
  Scientists are making astounding advances almost daily in decoding 
the secrets of our genes, especially through the contributions of the 
Human Genome Project. Genes have already been identified for cystic 
fibrosis, prostate cancer, multiple sclerosis, Huntington's disease, 
and many other conditions. As chair of the Women's Health Task Force of 
the

[[Page E13]]

Congressional Caucus on Women's Issues, I closely followed reports last 
year that increased funding for breast cancer research had resulted in 
the discovery of the BRCA1 gene linked to breast cancer. This knowledge 
has tremendous potential for improving the ways we identify, treat, and 
hopefully cure disorders. At the same time, there is also the very real 
possibility that this information could be used to discriminate against 
individuals.
  No American should have to worry that their genes--which they did not 
choose, and over which they have no control--will be used against them. 
My legislation would prohibit health insurers from using genetic 
information to deny, refuse to renew, cancel, or change the terms and 
conditions of coverage. It would prevent insurance companies from 
requesting or requiring genetic tests, and would require written 
informed consent before an insurer may disclose genetic information to 
a third party.
  These protections are absolutely critical, because genetic 
discrimination is already occurring. Numerous individual cases have 
been reported in the press. In addition, polls and studies demonstrate 
clearly how much the American people fear genetic discrimination by 
health insurers. This anxiety is so strong that many people are 
foregoing genetic testing--even when they have a clear family history 
of genetic illness and a positive test could lead them to take 
advantage of effective preventive medicine.
  This is a human tragedy Congress can and must prevent. In the 104th 
congress, I introduced similar legislation which garnered 76 cosponsors 
and was endorsed by a wide range of health and consumer groups, 
including: Alzheimer's Association, American Academy of Pediatrics, 
American Cancer Society, American Heart Association, American Medical 
Women's Association, American Nursing Association, American Public 
Health Association, Center for Patient Advocacy, Council for 
Responsible Genetics, Foundation on Economic Trends, and March of 
Dimes.
  Leadership Conference of National Jewish Women's Organizations, which 
includes: American Jewish Congress, Amit Women, B'nai B'rith, Emunah 
Women of America, Hadassah, Jewish Labor Committee, Jewish War 
Veterans, Jewish Women International, Na'amat USA, National Council of 
Jewish Women, Inc., National Jewish Community Relations Advisory 
Council, Union of American Hebrew Congregations, Women's American ORT, 
United Synagogue of Conservative Judaism; and National Association of 
Black Women Attorneys, National Breast Cancer Coalition, National 
Osteoporosis Foundation, National Ovarian Cancer Coalition, National 
Women's Health Network, National Women's Law Center, Women's Bar 
Association, and Women's Legal Defense Fund.
  I am hopeful that the 105th Congress will build upon the foundation 
established by the Kassebaum-Kennedy health reform bill. With this new 
legislation, it is my goal to ensure that no American woman will have 
to worry that if she takes a genetic test for the BRCA1 or BRCA2 breast 
cancer gene, she will lose her insurance coverage; or, that if she 
develops breast cancer, she will be denied coverage for treatment 
because her genetic predisposition will be considered a ``pre-existing 
condition.'' Congress has the power to protect all Americans from 
genetic discrimination in health insurance. We should do so quickly and 
decisively by passing the Genetic Information Nondiscrimination in 
Health Insurance Act.

                          ____________________