[Congressional Record Volume 142, Number 45 (Thursday, March 28, 1996)]
[Extensions of Remarks]
[Page E476]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




            GENETIC INFORMATION AND HEALTH INSURANCE REFORM

                                 ______


                     HON. LOUISE McINTOSH SLAUGHTER

                              of new york

                    in the house of representatives

                       Wednesday, March 27, 1996

  Ms. SLAUGHTER. Mr. Speaker, health insurance reform is coming to the 
House floor tomorrow. An important piece of that legislation deals with 
genetic information and insurance discrimination. Last December, I 
introduced H.R. 2748, the Genetic Information Nondiscrimination in 
Health Insurance Act--a bill to prevent the potentially devastating 
consequences of discrimination based on genetic information.
  I am very pleased to learn that both the Republican version of health 
insurance reform and the Democratic substitute that will be introduced 
tomorrow contain some of the protections I introduced in my bill last 
fall.
  While the provision in the legislation coming to the floor tomorrow 
is not as comprehensive as those outlined in my bill, it represents a 
very important first step in providing protections for people with 
predisposition to genetic disease.
  Let me tell you a little bit about my bill and why it is so 
important. As chair of the Women's Health Task Force, I closely 
followed the reports last year indicating that increased funding for 
breast cancer research had resulted in the discovery of the BRCAI gene-
link to breast cancer. While the obvious benefits of the discovery 
include potential lifesaving early detection and intervention, the 
inherent dangers of the improper use of genetic information are just 
becoming evident.
  There is increasing concern that based on genetic information, 
individuals will be denied access to health care and insurance 
providers will require genetic screening in order to deny coverage to 
those who would cause a rise in group premiums.
  The lessons we have learned from the past including the disastrous 
results of discriminating against those genetically predisposed to 
sickle-cell anemia. More recently, there are cases of people with a 
family history of breast cancer being afraid of getting tested for fear 
of losing access to insurance. Both these situations point to the need 
for comprehensive Federal regulations.

  The bill I introduced last December would prevent that type of 
catastrophe by prohibiting insurance providers from:
  First, denying or canceling health insurance coverage, or
  Second, varying the terms and conditions of health insurance 
coverage, on the basis of genetic information.
  Third, requesting or requiring an individual to disclose genetic 
information.
  Fourth, disclosing genetic information without prior written consent.
  The provisions in the health insurance reform bills to be considered 
on the floor tomorrow prohibit the use of genetic information as a 
preexisting condition. I applaud the inclusion of that aspect of my 
legislation in the insurance reform. I hope that my colleagues and I 
can continue to work together to apply the prohibitions on genetic 
discrimination across the board to cover all insurance policies and to 
address the important issue of privacy protection.
  As therapies are developed to cure genetic diseases, and potentially 
to save lives, the women and men affected must be assured access to 
genetic testing and therapy without concern that they will be 
discriminated against. As legislators, I believe it is our 
responsibility to ensure that protection against genetic discrimination 
is guaranteed. Tomorrow we will take the first step in that direction. 
I invite my colleagues to join me in making the commitment to ensuring 
comprehensive protections against genetic discrimination.

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