[Congressional Record Volume 151, Number 11 (Monday, February 7, 2005)]
[Senate]
[Pages S1056-S1058]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Ms. SNOWE (for herself, Mr. Frist, Mr. Gregg, Mr. Kennedy, Mr. 
        Enzi, Mr. Jeffords, Mr. Dodd, Mr. Harkin, Ms. Collins, Mr. 
        Talent, Mr. Bingaman, Mr. Hatch, Ms. Mikulski, Mrs. Murray, and 
        Mrs. Clinton):
  S. 306. 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. SNOW. Mr. President, I rise today to introduce the Genetic 
Information Nondiscrimination Act of 2005 and I am joined in doing so 
by a number of my colleagues including, Majority Leader Frist, Senator 
Jeffords, Senator Gregg as well as the chairman and ranking member of 
the Senate HELP Committee, Senators Enzi and Kennedy. The bill we are 
introducing today is the result of a collaborative effort spanning more 
than 8 years and I know I speak for my colleagues when I say that it is 
my hope that this bill will again receive the unanimous support of the 
Senate this year and that this will allow the House of Representatives 
to act swiftly in considering this bill this session.
  This day has been a long time coming and, over the years, we have not 
only retraced our steps in some respects but--most importantly--forged 
ahead on new ground.
  Since April of 1996, when I introduced for the first time the Genetic 
Information Nondiscrimination in Health Insurance Act, science has 
continued to hurtle 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. That 
1996 bill recognized that with progress in the field of genetics 
accelerating at a breathtaking pace, we needed to ensure that with the 
scientific advances to come, we would advance the treatment and 
prevention of disease--without advancing a new basis for 
discrimination.
  The following year, with the commitment of Senators Frist and 
Jeffords to addressing this issue, I introduced a bill to ensure we 
would effectively address the need for protections against 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, respark the 
debate--which helped lay the foundation for our subsequent efforts.
  Indeed, in March 2002, I was again joined by Senators Frist and 
Jeffords in introducing an updated version of our bill with the new 
support of Senators Gregg and 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.
  I think back to when Representative Louise Slaughter and I had first 
introduced our bills in the 103rd Congress, and the completion of the 
Genome still seemed years away. Yet it was only four years later when 
everything changed with the unveiling of the first working draft of our 
entire genetic code. As we had known--and as with so many other 
scientific breakthroughs in history--the completion of the Genome not 
only brought about

[[Page S1057]]

the prospect of medical advances, such as improved detection and 
earlier intervention, but also the potential for harm and abuse. Every 
day since--absent enactment of a law such as the bill we are 
introducing--has been a day the American people have been left 
unprotected from this type of discrimination. Every day since we have 
left the full potential of the Genome untapped.
  The very real fear of repercussions from one's genetic makeup was 
brought home to me through 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. What good is scientific 
progress if it cannot be applied to those who would most benefit?
  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.
  The bill we are introducing again today addresses both these issues 
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 about the request or receipt of genetic tests, from 
being used by the insurer against the patient.
  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 ways to 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 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.
  It has been more than 3 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 more than 16 months 
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 each of the Members here today to 
work together to come to a successful end and for that I am grateful.
  I urge my colleagues to support this bill as they have in the past 
and that its broad support will be seen as a clarion call by the House 
of Representatives that it is time for us to do our part 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 join Senator Snowe, 
Senator Prist, Senator Gregg, and Senator Enzi in introducing the 
Genetic Information Non-Discrimination Act. Today we take another step 
in our national journey to a fairer and more just America.
  I particularly commend our colleague from Maine, Senator Snowe, for 
her dedication to this vital issue. Senator Snowe first proposed 
legislation on genetic discrimination in 1996. Hopefully, the 
bipartisan momentum we have built up in recent years will produce a 
consensus bill we can enact into law this year.
  Two years ago, we celebrated an accomplishment that once seemed 
unimaginable--deciphering the entire sequence of the human DNA code. 
This amazing accomplishment will affect the 21st century as profoundly 
as the invention of the computer or the splitting of the atom affected 
the 20th century. But the extraordinary promise of science to improve 
health and relieve suffering is in jeopardy if our laws fail to provide 
adequate protections against misuse of genetic information.
  Our bipartisan legislation prohibits health insurers from using 
genetic information to deny health coverage or raise premiums. It bars 
employers from using genetic information to make employment decisions.
  Few kinds of information are more personal or more information than a 
person's genetic makeup. This information should not be shared by 
insurers or employers or be used in decisions about health coverage or 
a job. It should only be used by patients and their doctors to help 
them make the best possible decisions on diagnosis and treatment.
  Breakthroughs in genetic science are bringing remarkable new 
opportunities for improving health care. But it also carries the danger 
that genetic information will be used as a basis for discrimination. I 
hope we can all agree that discrimination on the basis of a person's 
genetic traits is as unacceptable as discrimination on the basis of 
race or religion. No American should be denied health insurance or 
fired from a job because of a genetic test.
  The vast potential of genetic knowledge to improve health care may go 
unfulfilled, if patients fear that information about their genetic 
characteristics will be used against them. Congress has a 
responsibility to guarantee

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that genetic information remains private and is not used for improper 
purposes.
  Experts in genetics are united in calling for strong protections to 
prevent this misuse and abuse of science. The HHS advisory panel on 
genetic testing--with experts in law, science, medicine, and business--
recommended unambiguously that Federal legislation is needed to 
prohibit discrimination in employment or health insurance based on 
genetic information. Last fall, witnesses testified about their first 
hand accounts of genetic discrimination. Heidi Williams' children were 
denied health insurance because they were carriers for a genetic 
disorder. Phil Hardt's children feared discrimination so much that they 
sought genetic tests in secret, paying out of their own pockets and not 
using their real names.
  Francis Collins, the leader of the NIH project to sequence the human 
genome, said, ``Genetic information and genetic technology can be used 
in ways that are fundamentally unjust. Already, people have lost their 
jobs, lost their health insurance, and lost their economic well-being 
because of the misuse of genetic information.''
  Genetic tests are becoming 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.
  When Congress enacts clear protections against genetic discrimination 
in employment 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 used against them. If Congress fails to see 
that genetic information is used only for legitimate purposes, we will 
squander the vast potential of genetic research to improve the Nation's 
health.
  Effective enforcement will be essential. It makes no sense to enact 
legislation giving the American people the promise of protection 
against this form of discrimination and then deny them the reality of 
that protection.
  President Bush recognizes the seriousness of this problem, and 
supports a ban on genetic discrimination. In his words, ``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.'' I commend the President for his support, and 
I look forward to working with the administration to see that a strong 
bill on genetic discrimination is signed into law this year.
  It is time for Congress to act, and I urge the Senate to do so 
without delay.
                                 ______