[Congressional Record Volume 148, Number 23 (Wednesday, March 6, 2002)]
[Senate]
[Pages S1613-S1614]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Ms. SNOWE (for herself, Mr. Frist, Mr. Jeffords, Mr. Enzi, Ms. 
        Collins, Mr. Hagel, Mr. DeWine, and Mr. Gregg):
  S. 1995. A bill to prohibit discrimination on the basis of genetic 
information with respect to health insurance and employment; to the 
Committee on Health, Education, Labor, and Pensions.
  Ms. SNOWE. Madam President, I rise today to introduce the Genetic 
Information Non-Discrimination in Health Insurance and Employment Act 
of 2002. I am joined in introducing this bill by Senators Frist, 
Jeffords, Enzi, Collins, Hagel, DeWine, and Gregg.
  The legislation I am introducing today is the culmination of several 
months work, though it is, in fact, the second part of an effort that 
started several years ago. Specifically, in April 1996, I introduced 
the Genetic Information Nondiscrimination in Health Insurance Act, 
legislation that was designed to protect people's genetic information 
and results of genetic testing, or requests for genetic testing, from 
being used against them by their health insurers. Back then, time was 
on our side as the completion of the Genome was years off.
  However, four years later, in June 2000, everything changed with the 
announcement that the first working draft of the Human Genome was 
completed. And since that time, science has continued to hurry forward, 
further opening the door to early detection and medical intervention 
through the discovery and identification of specific genes linked to 
diseases like breast cancer, Huntington's Disease, glaucoma, colon 
cancer and cystic fibrosis.
  Unfortunately, like so many other scientific breakthroughs in 
history, the completion of the Genome not only brought about the 
prospect for medical advances, such as improved detection and 
intervention, but also potential harm and abuse, as the knowledge of 
individual genetic information could be used against the very same 
person it is invented to help.
  Accordingly, the need for protections against genetic discrimination 
by both health insurers and employers is becoming more urgent everyday. 
If, because of concerns about the way the information could be used, 
people are unwilling to use the potential unlocked by the Genome 
project to take proactive steps to protect their health and that of 
their loved ones, then we will never reap the true benefits of this 
discovery.
  While we cannot yet prevent diseases such as breast cancer, genetic 
testing makes it possible for carriers of these diseases to take extra 
precautions. In fact, early detection is the best weapon we have to 
combat many of these diseases we can now identify, and for breast 
cancer it is a critical component when one considers that almost 
192,000 women were struck by the disease last year. Technological 
advances in screenings coupled with the ability to identify who carries 
the gene linked to breast cancer can help us in our efforts to reduce 
this number. The possibilities for this discovery are limited only by 
the willingness, or unwillingness, of people to use this knowledge.
  In 1997, a woman from Maine brought the reality of this dilemma home 
for me when she wrote of her very real fear of the repercussions 
associated with genetic testing. Bonnie Lee Tucker has nine women in 
her immediate family who were diagnosed with breast cancer, and she 
herself is a survivor. She wrote to me about her fear of having the 
BRCA test for breast cancer, because she worries it will ruin her 
daughter's ability to obtain insurance in the future.

  Bonnie Lee isn't the only one who has this fear. When the National 
Institutes of Health offered women genetic testing, nearly 32 percent 
of those who were offered a test for breast cancer risk declined to 
take it citing concerns about health insurance discrimination. What 
good is scientific progress if it cannot be applied to those who would 
most benefit?
  Dr. Francis Collins, the Director of the National Human Genome 
Research Institute, has testified before Congress about the next step 
for those involved in the Genome project. He explained that the 
project's scientists were engaged in a major endeavor to ``uncover the 
connections between particular genes and particular diseases,'' to 
apply the knowledge they just unlocked. In order to do this, Dr. 
Collins said, ``we need a vigorous research enterprise with the 
involvement of large numbers of individuals, so that we can draw more 
precise connections between a particular spelling of a gene and a 
particular outcome.'' However, this effort cannot be successful if 
people are afraid of possible repercussions of their participation in 
genetic testing.
  The bottom line is that, given the advances in science, there are two 
separate issues at hand. The first is to restrict discrimination by 
health insurers and the second to prevent employment discrimination, 
based upon genetic information.

[[Page S1614]]

  With regard to health insurance, the issues are clear and familiar, 
and something the Senate has debated before, in the context of the 
consideration of larger privacy issues. As Congress debated what is now 
the Health Insurance Portability and Accountability Act of 1996, we 
also addressed the issues of privacy of medical information. And any 
legislation that seeks to fully address these issues must consider the 
interaction of the new protections with the newly promulgated privacy 
rule which was mandated by HIPAA, and our legislation does just that.
  Now we must ensure that we protect genetic information, genetic 
tests, as well as information regarding a request for genetic testing, 
from being used by the insurer against the patient. Genetic information 
only detects the potential for a genetically linked disease or 
disorder, and potential does not equal a diagnosis of disease. However, 
it is critical that this information be available to doctors and other 
health care professionals when necessary to diagnose, or treat, an 
illness. It is the difference that we must recognize as we discuss 
legislation to protect patients from potential discriminatory practices 
by insurers.
  Unlike our legislative history on debating health privacy matters, 
the issues surrounding protecting genetic information from workplace 
discrimination is new. And to that end, the legislation I introduce 
today creates these protections in the workplace. As demonstrated by 
the Burlington Northern case, the threat of employment discrimination 
is real and therefore it is essential that we take this information off 
the table, so to speak, before the use of this information becomes 
widespread. While Congress has not yet debated this specific type of 
employment discrimination, we have a great deal of employment case law 
and legislative history on which to build.
  As we considered the need for this type of protection, we agreed that 
we must extend current law discrimination protections to genetic 
information. We reviewed current employment discrimination law and 
considered what sort of remedies people would have for instances of 
genetic discrimination and if these remedies would be different from 
those available to people under current law, for instance under the ADA 
or the EEOC.
  The bill we introduce today creates new protections by paralleling 
current law. In addition it addresses changes in the law that have 
occurred since the original introduction of my bill and the other bills 
on this subject. The momentum to address this issue has finally reached 
a critical mass. Clearly this is an issue whose time has come.
  It has been more than eighteen months since the completion of the 
working draft of the Human Genome. Like a book which is never opened, 
the wonders of the Human Genome are useless unless people are willing 
to take advantage of it.
  It's my sincere hope that the bi-partisan legislation I introduce 
today is the beginning of the end of the debate in our effort to ensure 
that every one of us is just as protected from discrimination because 
of what is in our genes as we are from our heritages, our genders and 
our impairments.
  Mr. FRIST. Madam President, I rise once again today to speak on the 
critical issue of genetic discrimination and to proudly join my 
colleagues, Senators Snowe, Jeffords, Collins, Enzi, DeWine, Hagel, and 
Gregg in introducing the Genetic Information Nondiscrimination Act of 
2002.
  The threat of genetic discrimination, both in the workplace and with 
respect to health insurance coverage, is one of the most troublesome 
Congress faces. As our scientific knowledge has improved, the threat of 
discrimination has increased. As a physician, as a medical researcher, 
and ranking member of the Subcommittee on Public Health, I have a long 
and deep interest in this issue, and I believe we have a unique 
responsibility to ensure that medical and scientific progress does not 
result in individual harm.
  For example, I am deeply troubled by reports of women declining 
genetic testing out of fear that they may lose their health insurance, 
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. 
When I first joined Senator Snowe to introduce legislation banning 
genetic discrimination in health insurance in 1998, almost one-third of 
women offered a test for breast cancer risk at the National Institutes 
of Health declined, citing concerns about health insurance 
discrimination. If unchecked and unregulated, this fear of 
discrimination clearly has the potential to prevent individuals from 
participating in research studies or taking advantages of new genetic 
technologies to improve their medical care.
  Scientific advances hold the promise of higher quality medical care, 
yet there is a pressing need for federal legislation to reassure the 
public that learning this information will not result in a loss of 
health insurance coverage or in the loss of a job. I am committed to a 
bipartisan legislative solution, and have worked extensively towards 
this goal with Senator Snowe, Jeffords, and a number of the members of 
this Committee over the past several years. I believe that, together, 
we have made an important step in addressing this through the Genetic 
Information Nondiscrimination in Health Insurance Act, which has been 
passed by the Senate on three separate occasions.
  Today, we are building on that work, and on the solid foundations 
established in law by the Civil Rights Act, Americans with Disabilities 
Act, and Health Insurance Portability and Accountability Act. The 
Genetic Information Nondiscrimination Act of 2002 builds upon our 
progress in the health insurance area and expands our previous 
legislation to address the threat of employment discrimination and 
health insurance based on genetic information. Moreover, the bill 
incorporates the most recent scientific understandings in the field of 
genetics research in establishing protections and defining relevant 
terms.
  I believe that it is incumbent upon us to pass legislation this year 
that is comprehensive, consistent, reasonable and fair. I am troubled 
by some legislative approaches that would place these new protections 
outside of the established framework of our time-tested civil rights 
laws and that would establish separate protections against genetic 
discrimination than exist for other types of discrimination. The bill 
today meets that standard of providing strong protections that are 
consistent with the current state of scientific knowledge, as well as 
current law.
  I commend my colleagues for their commitment to this issue. I also 
commend President Bush for his commitment to ensuring strong 
protections against genetic discrimination and for calling attention to 
this critical matter. Through this important legislation, we have the 
opportunity to dispel the threat of discrimination based on an 
individual's genetic heritage, and I look forward to working with my 
colleagues to enact this legislation this year.

                          ____________________