[Congressional Record Volume 153, Number 12 (Monday, January 22, 2007)]
[Senate]
[Pages S845-S847]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Ms. SNOWE (for herself, Mr. Kennedy, Mr. Enzi, Mr. Dodd, Mr. 
        Gregg, Mr. Harkin, Ms. Murkowski, Ms. Mikulski, Mr.

[[Page S846]]

        Hatch, Mr. Bingaman, Mr. Allard, Mrs. Murray, Mr. Reed, Mrs. 
        Clinton, Mr. Obama, Mr. Sanders, Mr. Brown, Mr. Biden, Mr. 
        Lautenberg, Mr. Nelson of Florida, Mr. Salazar, Mr. Cardin, and 
        Ms. Collins):
  S. 358. 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. Mr. President, I rise today to introduce the Genetic 
Information Nondiscrimination Act of 2007 and I am joined in doing so 
by a number of my colleagues including the Chairman and Ranking Member 
of the Senate HELP Committee, Senators Kennedy and Enzi. The bill we 
are introducing today represents a triumph of bipartisan 
collaboration--true consensus-building which is so vital to achieving 
substantive action for our constituents. Such efforts are certainly not 
always easy--as so many here today know--I have worked with many of you 
for more than 10 years on this issue.
  Today we are on the threshold of a new era, as for the first time, we 
act to prevent discrimination before it has taken firm hold. Indeed, 
Senator Gregg described this legislation so well when he said it is, 
truly, ``the first civil rights act of the 21st Century.''
  And that is what makes this legislation so unique. For in the past 
Congress has had to act to address existing discrimination. But today 
we are acting proactively to address genetic bias, before 
discrimination becomes entrenched.
  This type of discrimination is so different than other forms. Because 
most discrimination is a response to an obvious trait, such as one's 
gender or the color of your skin. But discrimination based on one's 
genetic makeup involves actively looking for information on which to 
discriminate. Because it is so deliberate, one cannot even argue it 
was--on any level--subconscious or unintentional.
  It used to be difficult to find such information on which to 
discriminate. You might be asked if you had a family history of a 
disorder. But today things have changed dramatically.
  We have long known about a small number of genes which play a role in 
some diseases--such as Huntington's Disease, and early onset 
Alzheimer's. Yet the progress of discovery and study was so slow and 
tedious. But the Human Genome Project changed all that. Today, with new 
technology we are seeing an explosive increase in our understanding of 
genetics and human health.
  That growing genetic knowledge offers the potential of disease cures 
and even customized therapies. Even more promising, genetic advances 
will enable us to actually prevent the development of disease. But this 
potential . . . and the billions spent in discovering genetic 
relationships and developing treatments and preventive agents . . . 
will certainly be in vain if Americans do not avail themselves of these 
advances.
  To do so, Americans will need to take genetic tests. But would you do 
so if you knew that the information about your genetic makeup would be 
used against you--to deny you employment or health coverage?
  Some say that kind of discrimination is but a future possibility--
that we can afford to wait until genetic discrimination begins to take 
a toll. But it already has done so. I learned from the real life 
experience of one of my constituents, Bonnie Lee Tucker. In 1997, 
Bonnie Lee wrote me about her fear of having the BRCA test for breast 
cancer, even though she 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, because she worried it 
will ruin her daughter's ability to obtain insurance in the future. And 
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. Mr. 
President, what good is scientific progress if it cannot be applied to 
those who would most benefit?
  And we have seen cases where some attempted to mandate genetic 
testing. Even when this is done to improve the delivery of health care, 
it must be recognized that once that information is disclosed . . . and 
is unprotected . . . a future employer or insurer may not necessarily 
use that information in such a benign way. Yet we recognize that if an 
individual can avail themselves of a genetic test, they may be able to 
take action as a result which prevents disease or premature death, and 
reduces the burden of high health costs. And wouldn't everyone want to 
see that?
  I recall the testimony before Congress of Dr. Francis Collins, the 
Director of the National Human Genome Research Institute, without whom 
we wouldn't have reached this day. In speaking of 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.'' Well, 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. The second is to prevent employment discrimination 
based simply upon an individual's genetic information.
  Some of us saw this danger 10 years ago and the threat it could pose 
to millions of Americans. I think back to when Representative Louise 
Slaughter and I first introduced our bills to ban genetic 
discrimination in health insurance back in the l04th Congress. At that 
time the completion of the human genome seemed far away. But the 
science has certainly out-paced Congressional action.
  The following year, with the commitment of Senators Frist and 
Jeffords to address this issue, I introduced a bill to ensure we would 
effectively provide the needed protections to prevent genetic 
discrimination in the health insurance industry. In turn, that bill was 
the basis for an amendment offered by Senator Jeffords, to the Fiscal 
Year 2001 Departments of Labor, Health and Human Services 
Appropriations bill which passed the Senate by a vote of 58-40.

  While that victory was a notable step forward, unfortunately, it was 
not followed by the enactment of our bill. It did, however, re-spark 
the debate--which helped lay the foundation for our subsequent efforts.
  Indeed, in March of 2002, I was again joined by Senators Frist and 
Jeffords in introducing an updated version of our bill with the added 
support of Senator Gregg and Senator Enzi. That bill not only addressed 
what had become the real threat of employment discrimination but also 
captured the changing world of science as this was the first bill to 
include what we had learned with the completion of the Genome Project.
  In June of 2003, after sixteen months of bipartisan negotiation, we 
achieved a unified, bipartisan agreement to address genetic 
discrimination. Today we again introduce the legislation encompassing 
that agreement, which the Senate has twice passed . . . unanimously.
  The bill we are introducing again today addresses genetic 
discrimination in both employment and health insurance based on the 
firm foundation of current law. 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. 
Indeed, as Congress considered what is now the Health Insurance 
Portability and Accountability Act of 1996, we also addressed the 
issues of privacy of medical information.
  Moreover, any legislation that seeks to fully address these issues 
must consider the interaction of the new protections with the privacy 
rule which was mandated by HIPAA--and our legislation does just that. 
Specifically, we clarify the protections of genetic information as well 
as information on the request or receipt of genetic tests, from being 
used by the insurer against the patient.

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  Because the fact of the matter is, genetic information only detects 
the potential for a genetically linked disease or disorder--and 
potential does not equal a diagnosis of disease. At the same time, it 
is critical that this information be available to doctors and other 
health care professionals when necessary to diagnose, or treat, an 
illness. This is a distinction that begs our acknowledgment, as we 
discuss protect patients from potential discriminatory practices by 
insurers.
  On the subject of employment discrimination, unlike our legislative 
history on debating health privacy matters, the issues surrounding 
protecting genetic information from workplace discrimination is not as 
extensive. To that end, our bipartisan bill creates these protections 
in the workplace--and there should be no question of this need.
  As demonstrated by the Burlington Northern case, the threat of 
employment discrimination is very real, and therefore it is essential 
that we take this information off the table, so to speak, before the 
use of this information becomes more 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.
  Indeed, 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 and clarifies the remedies available to victims 
of discrimination. Ensuring that regardless of whether a person is 
discriminated against because of their religion, their race or their 
DNA, these people will all receive the same strong protections under 
the law.
  Indeed, I believe those who have questioned the need for this 
legislation will see that if we can provide these protections, then 
individuals can avail themselves of medical knowledge which will not 
only improve their health, but will reduce health care costs. For 
employers attempting to address the escalating cost of coverage, isn't 
it essential to utilize our investment in advancing medical knowledge 
to prevent disease and disability? Isn't that just the sort of action 
we need to encourage to reduce health costs and make our businesses, 
large and small, more competitive?
  Indeed we have seen the business community recognizing the critical 
importance of putting our medical investment to work to reduce health 
costs . . . not discouraging employees from undergoing tests that could 
prevent disease or death. To that end, I noted during the last Congress 
that IBM pledged to not use genetic information in its hiring practices 
or in deciding eligibility for health insurance coverage. This 
demonstrates an admirable understanding of how such discrimination can 
harm both individuals and business.
  It has been more than six years 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. This bill is the product of over a year of 
bipartisan negotiations and is a shining example of what we can 
accomplish if we set aside partisan differences in order to address the 
challenges facing the American people. Certainly this bill was only 
possible due to the commitment of members working together--setting 
aside partisanship--and for that I am grateful.
  I know I speak for my colleagues when I say that it is my hope that 
we shall see this bill again receive the unanimous support of the 
Senate and that this will allow the House of Representatives to act 
swiftly to pass this legislation so that the President can sign this 
bill into law and finally ensure the American public is protected from 
this newest form of discrimination.
  Mr. KENNEDY. Mr. President, it is a privilege to introduce the 
Genetic Information Nondiscrimination Act of 2007. It is an honor to 
join Senator Snowe, Senator Enzi, Senator Dodd, Senator Harkin, Senator 
Gregg, and other members of our committee in support of this needed 
legislation.
  I especially commend Senator Snowe for her leadership in this effort 
to establish protections for the public against genetic discrimination. 
It is now over a decade since Senator Snowe first introduced 
legislation on the issue. It passed the Senate 98-0 in the last 
Congress, and I am very hopeful we can work with our colleagues in the 
House and enact it into law, so that our people will finally have the 
protections they need against the misuse of genetic information.
  In this century of the life sciences, much of what we learn through 
biomedical research is being translated into new treatments and cures, 
and nowhere is the explosion of scientific progress more apparent than 
in the field of genetics. Four years after the remarkable achievement 
of discovering the sequence of the human genome, clinical testing is 
now possible for over a thousand genetic diseases. It has led to rapid 
growth in the field of personalized medicine, in which patients' 
treatment and care is individualized according to their genetic makeup.
  In the absence of federal protections, however, patients fear that 
undergoing genetic tests may lead to disqualification from future 
insurance coverage, or that an employer will fire them or deny a 
promotion based on the results of a genetic test. The consequence is 
that many Americans are choosing not to be tested, and are declining to 
participate in clinical trials so important for the development of new 
treatments.
  Discrimination based on genetics is just as wrong as discrimination 
based on race or gender. Our bill provides specific protections for 
citizens against genetic discrimination. It prohibits health insurers 
from picking and choosing their customers based on genetics. Employers 
cannot fire or refuse to hire persons because of their genetic 
characteristics. It enables Americans to benefit from better health 
care through the use of genetic information, without the fear that it 
will be misused against them.
  It is difficult to imagine information more personal or more private 
than a person's genetic makeup. It should not be shared by insurers or 
employers, or be used in making decisions about health coverage or a 
job. It should only be used by patients and their doctors to make the 
best diagnostic and treatment decisions they can.
  In the near future, genetic tests will become even cheaper and more 
widely available. If we don't ban discrimination now, it may soon be 
routine for employers to use genetic tests to deny jobs to employees, 
based on their risk for disease.
  If Congress enacts clear protections against genetic discrimination 
in employment and health insurance, all Americans will be able to enjoy 
the benefits of genetic research, free from the fear that their 
personal genetic information will be misused. If Congress fails to make 
sure that genetic information is used only for legitimate purposes, we 
may well squander the vast potential of genetic research to improve the 
nation's health.
  The bill that we are considering today has been unanimously approved 
by the full Senate in the past two Congresses. We passed it 95-0 in the 
108th Congress, and 98-0 in the 109th Congress. It had over 240 
cosponsors in the House in both Congresses, but the leadership refused 
to bring it to a vote.
  As President Bush himself has said, ``Genetic information should be 
an opportunity to prevent and treat disease, not an excuse for 
discrimination. Just as our nation addressed discrimination based on 
race, we must now prevent discrimination based on genetic 
information.''
  We are closer than ever to enactment. I urge the Senate to approve 
the bill, and this time, I think we will finally see it become law.
                                 ______