[Congressional Record Volume 143, Number 111 (Thursday, July 31, 1997)]
[Senate]
[Pages S8619-S8620]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                         GENETIC DISCRIMINATION

 Mr. FRIST. Mr. President, I rise today to address a critical 
issue that we, as a nation, must face--the fear of discrimination in 
health insurance practices based on our increasing ability to gather 
genetic information about ourselves and our families.
  The tremendous advances in genetics research spawned by the Human 
Genome project are opening the door to a greater understanding of the 
underlying causes of human disease. The revolution in genetics is 
giving hope to millions of Americans that we will see eventual 
treatments, and ultimately cures, for some of the most devastating 
genetic diseases. Yet, our ability to predict what diseases individuals 
may be at risk for in the future has caused great concern that this 
powerful information--the information we all carry in our genes--may be 
used against us.
  I am deeply troubled when I hear from the Tennessee Breast Cancer 
Coalition that genetic counselors are facing women every day who are 
afraid of the consequences of genetic testing. Women are avoiding 
genetic testing due to concerns about loss of health insurance coverage 
for themselves or their families--even though a genetic test might 
reveal that a woman is not at high risk and therefore allow her to make 
more informed health care choices.
  As a physician and researcher, I am particularly concerned that the 
fear of discrimination will prevent individuals from participating in 
research studies or taking advantage of new genetic technologies to 
improve their medical care.
  Scientific advances hold the promise of higher quality medical care, 
yet only Federal legislation can reassure the public that learning this 
information is safe. I was encouraged by President Clinton's recent 
press conference on genetic discrimination, July 14, 1997 which 
assisted in elevating this issue to the public's attention. While I am 
currently not a cosponsor of any specific legislative proposal, I am 
committed to developing a bipartisan legislative solution. I look 
forward to working with Senator Jeffords and my fellow colleagues on 
the Senate Labor and Human Resources Committee--as well as Senators 
Mack, Snowe, Domenici, and the many other Members who have been 
dedicated to this issue.
  In my role as chairman of the Subcommittee on Public Health and 
Safety, I strongly support the intent of legislation which would 
prohibit discrimination in health insurance against healthy individuals 
and their families based on their genetic information. We all carry 
genetic mutations that may place us at risk for future disease--
therefore we are all at risk for discrimination. If I receive a genetic 
test which shows I am at risk for cancer, diabetes, or heart disease, 
should this

[[Page S8620]]

predictive information be used against me or my family? Particularly 
when I am currently healthy and, in fact, may never develop the 
illness? I think the American public has answered quite clearly, 
``no.''
  As a physician I believe in preventive medicine to avert illness for 
patients. Similarly, as a policymaker, I believe in ``preventive 
legislation'' in this case--to avert widespread discrimination by 
stepping in now--before genetic information is used in certain health 
insurance practices and before genetic technologies are used in routine 
medical practice.
  Finally, I believe that, in order to fully address genetic 
discrimination, we must tackle comprehensive legislation on the 
confidentiality of medical records--legislation that encompasses all of 
our health information. We must examine who should have access to 
sensitive health information and to whom it should be disclosed. As 
this important debate continues in the 105th Congress, I am committed 
to ensuring that we craft legislation that protects patient 
confidentiality, fosters medical research, and maintains a dynamic 
health care system.
  Only with these measures can we ensure that knowledge about our 
genetic heritage will be used to improve our health--and not force us 
to hide in fear that this information will cause us harm.
  I encourage my Senate colleagues to join me in examining these issues 
and moving forward in the coming months on these critical pieces of 
legislation.

                          ____________________