[Congressional Record Volume 142, Number 53 (Tuesday, April 23, 1996)]
[Senate]
[Page S3954]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Ms. SNOWE:
  S. 1694. A bill to prohibit insurance providers from denying or 
canceling health insurance coverage, or varying the premiums, terms, or 
conditions for health insurance coverage on the basis of genetic 
information or a request for genetic services, and for other purposes; 
to the Committee on Labor and Human Resources.


 The Genetic Information Nondiscrimination in Health Insurance Act of 
                                  1996

 Ms. SNOWE. Mr. President, I introduce the Genetic Information 
Nondiscrimination in Health Insurance Act of 1996. I join 
Representative Louise Slaughter, who introduced this bill in the House, 
in calling for an end to discrimination on the basis of genetic 
information in health insurance.
  Progress in the field of genetics is accelerating at a breathtaking 
pace. Who could have predicted 20 years ago that scientists today could 
accurately identify the genes associated with cystic fibrosis, cancer, 
Alzheimers' and Huntington's disease? Today, scientists can, and as a 
result doctors are increasingly able to identify predispositions to 
certain diseases based on the results of genetic testing, and to 
successfully treat and manage such diseases. These scientific advances 
hold tremendous promise for the approximately 15 million people 
affected by the over 4,000 currently known genetic disorders, and the 
millions more who are carriers of genetic diseases who may pass them on 
to their children.
  But as our knowledge of genetic predisposition to disease has grown, 
so has the potential for discrimination in health insurance.
  As a legislator who has worked for many years on the issue of breast 
cancer, and as a woman with a history of breast cancer in her family, I 
am delighted with the possibilities for further treatment advances 
based on the recent discoveries of two genes related to breast cancer--
BRCA1 and BRCA2. Women who inherit mutated forms of either gene have an 
85-percent risk of developing breast cancer in their lifetime. Although 
there is no known treatment to ensure that women who carry the mutated 
gene do not develop breast cancer, genetic testing makes it possible 
for carriers of these mutated genes to take extra precautions--such as 
mammograms and self-examinations--in order to detect cancer at its 
earliest stages. This discovery is truly a momentous breakthrough.
  However, the tremendous promise of genetic testing is being 
significantly threatened by insurance companies that use the results of 
genetic testing to deny or limit coverage to consumers. Unfortunately, 
this practice is relatively common today. In fact, a recent survey of 
individuals with a known genetic condition in their family revealed 
that 22 percent had been denied health insurance coverage because of 
genetic information.
  In addition to the potentially devastating consequences health 
insurance denials on the basis of genetic information can have on 
American families, the fear of discrimination has equally harmful 
consequences for consumers and for scientific research. For example, 
many women who might take extra precautions if they knew they had the 
breast cancer gene may not seek testing because they fear losing their 
health insurance. Patients may be unwilling to disclose information 
about their genetic status to their physicians out of fear, hindering 
treatment or preventive efforts. And people may be unwilling to 
participate in potentially ground-breaking research trials because they 
do not want to reveal information about their genetic status.
  The bill I am introducing today addresses these serious concerns by 
prohibiting health insurance providers from denying or canceling health 
insurance coverage or varying the terms, premiums, or conditions for 
health insurance for individuals or their family members on the basis 
of genetic information. It also prohibits insurance companies from 
discriminating against individuals who have requested or received 
genetic services.
  My bill also contains important confidentiality provisions which 
prohibit insurance companies from disclosing genetic information about 
an individual without that person's written consent. And it prohibits 
an insurance provider from requesting someone to undergo, and from 
disclosing, genetic information about that person.
  Finally, the bill allows individuals to sue for monetary damages or 
injunctive relief if an insurance company violates, or threatens to 
violate, these nondiscrimination or disclosure provisions.
  I urge my colleagues to end the unfair practice of denying health 
care coverage to individuals on the basis of genetic information by 
supporting the bill I am introducing today.
                                 ______