[Congressional Record Volume 142, Number 117 (Friday, August 2, 1996)]
[Extensions of Remarks]
[Pages E1468-E1469]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




   GENETIC INFORMATION HEALTH INSURANCE NONDISCRIMINATION ACT OF 1996

                                 ______
                                 

                        HON. GERALD B.H. SOLOMON

                              of new york

                    in the house of representatives

                         Friday, August 2, 1996

  Mr. SOLOMON. Mr. Speaker, the rapid advancement of gene discovery and 
molecular medicine are leading scientists and doctors to a future where 
information about genetic diseases will be readily available and easily 
assessable. Unfortunately, as knowledge in this area grows so does the 
potential for discrimination in health coverage for a number of 
Americans.
  That is why I am introducing a bill today which will protect 
Americans from discrimination by health insurers based on their genetic 
makeup.
  My bill was crafted to prevent health insurers from denying, 
limiting, refusing to renew, or canceling insurance coverage on the 
basis of genetic information or because the individual or family member 
has requested or received genetic testing information.
  In addition, this legislation would prohibit insurers from varying 
the premiums, terms or conditions of coverage on the basis of genetic 
information.
  Mr. Speaker, currently there are insufficient laws to protect not 
only the disclosure of genetic information but also its use, and we are 
beginning to hear frightening stories about discrimination against 
people who are perceived to be at risk in the future for certain 
diseases.
  Certainly, it is a miracle of modern medicine that doctors and 
scientists can now screen for hundreds of genetic conditions including 
cystic fibrosis, sickle cell anemia, and muscular dystrophy and can 
save lives through early detection. It is not a miracle, however, for 
those who are subsequently denied coverage based on the detection of 
one of these genes, especially because we know that carrying a certain 
gene does not mean that a disease will ultimately become manifest.
  At this time, 13 States have already enacted or are currently 
considering legislation to address the problem of genetic 
discrimination. However, Federal law is needed because employers that 
self-insure are exempt from State mandates due to ERISA preemption--
which counts for 50 percent of all insured Americans.
  Mr. Speaker, I would like to share a few stories with you which 
really illustrate the need for legislation. A pregnant woman whose 
fetus tested positive for cystic fibrosis was told that her HMO would 
be willing to cover the cost of abortion but would not cover the infant 
if she elected to carry it to term. In another instance, a healthy 5-
month-old boy was denied health insurance because he had a gene that 
predisposed him to a heart attack, even though

[[Page E1469]]

the child was taking medication that eliminated the risk of cardiac 
problems.
  Mr. Speaker, there are countless stories surfacing with equally 
horrific consequences. Yet, while genetic information may provide clues 
to future health risks, it is not the only factor in determining risk. 
No doubt there are countless stories of people overcoming these odds 
and leading perfectly healthy lives. Why should they have to function 
with a handicap which is completely out of their control when they are 
otherwise perfectly healthy? It is time for Congress to show our 
commitment to protecting the American people from this kind of 
discrimination.

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