[Congressional Record Volume 147, Number 22 (Thursday, February 15, 2001)]
[Senate]
[Pages S1524-S1525]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Ms. SNOWE (for herself, Mr. Frist, Mr. Jeffords, Ms. Collins, 
        Mr. DeWine, and Mr. Enzi):
  S. 382. A bill to prohibit discrimination on the basis of genetic 
information with respect to health insurance; to the Committee on 
Health, Education, Labor, and Pensions.
  Ms. SNOWE. Mr. President, I rise today to introduce the Genetic 
Information Nondiscrimination in Health Insurance Act. I am delighted 
to be joined by Senators Frist, Jeffords, Collins, DeWine, and Enzi as 
original cosponsors of this bill, which provides strong protection to 
all Americans against the unfair and improper use of genetic 
information for insurance purposes.
  Similar language passed the Senate in the last Congress as part of 
the Patients' Bill of Rights, and as an amendment to the FY2001 Labor-
HHS-Education appropriations bill by a vote of 58 to 40. The only 
substantive difference between this year's legislation and last year's 
is the inclusion of a safe harbor provision to prevent conflict with 
the new HHS medical confidentiality regulations.
  This bill ensures that people cannot be denied insurance coverage on 
the basis of genetic information, cannot be dropped from coverage on 
the basis of genetic information, cannot be charged exorbitant premiums 
based on genetic information, and cannot be discriminated against for 
requesting or receiving genetic services.
  The bill also ensures that insurance companies cannot release a 
person's genetic information without their prior consent, and cannot 
carve out covered services because of an inherited genetic disorder. 
Finally, we included safe harbor language to prevent conflict with the 
new privacy regulations published in December by the Department of 
Health and Human Services.
  Scientists are finding genetic links to a whole host of diseases such 
as breast cancer and Huntington's disease--in fact, there are now tests 
for over 450 disorders including Alzheimer's, cystic fibrosis, 
Parkinson's, glaucoma, and kidney and colon cancer. Last June America 
learned that scientists have completed their mapping of the human gene. 
This was a remarkable and historic event that opens the door to new 
scientific breakthroughs that may well help lead us one day to the 
cause and cure for many of these diseases.
  Unfortunately, this remarkable news has the potential to become a 
dangerous tool. As the old adage goes, ``knowledge is power'' and an 
insurance company could use genetic information to deny insurance to an 
individual because they know that the person is predisposed to a 
particular disease or health problem.
  Today in America, we know that an estimated 15 million people are 
affected by over 4,000 currently known genetic disorders. And while we 
cannot yet prevent the diseases that genetic testing can help us find, 
we can give carriers of these mutated genes the information they need 
to take extra precautions to protect their health and that of their 
loved ones.
  It is important to remember that while genetic testing is helpful as 
an informational tool, it still remains an inexact science. Prediction 
does not mean certainty--in the case of the Alzheimer's gene, for 
example, there is less than a 35 percent chance that a patient who 
tests positive for the mutated gene will actually develop the disease. 
And yet, that person should not have to worry about their health 
insurance coverage?
  For instance, when it comes to breast cancer, we know that early 
detection can often mean the difference between life and death. We also 
know that women who inherit mutated forms of either of two genes 
related to breast cancer--BRCA1 or BRCA2 have an 85 percent risk of 
developing the disease. So, should a woman test positive, she is more 
likely to take measures such as regular mammograms and self-
examinations that can detect cancer early--thereby giving herself a 
fighting chance.
  But at the end of the day, all of this means nothing if people are 
afraid to take advantage of genetic testing. And people are afraid that 
the trade-off for gaining an edge in the battle against disease could 
be losing health insurance--or higher premiums. That's just plain 
wrong. We need every advantage we can get when it comes to breast 
cancer and other diseases, and that's why we need this bill.
  The bill we are offering will address these concerns and will allow 
our health care system to catch up to the tremendous health care 
advances of the past few years. It makes no sense to be on the cutting 
edge of medicine but remain in the dark ages when it comes to genetic 
discrimination.
  Anyone who has heard me speak on this issue before has heard me tell 
of the story of Bonnie Lee Tucker, a constituent whose situation is so 
compelling that it bears repeating. Indeed, Bonnie Lee puts a face and 
a name to the very problem I am trying to address here with this bill.
  Nine women in Bonnie Lee's immediate family have been diagnosed with 
breast cancer. And Bonnie Lee herself is a breast cancer survivor. So 
you can imagine that Bonnie Lee is very worried about her daughter, and 
would like more than anything to have the BRCA test for breast cancer. 
But she hasn't because she is frightened that having this test could 
ruin her daughter's chances of ever obtaining insurance in the future.
  Bonnie Lee Tucker is not alone. Across this country there are mothers 
and fathers who are caught in a grip of fear for their children--fear 
that they may have passed along a disease that, without early detection 
and treatment could kill their child and fear that if a genetic test 
detects a mutated gene they will have ruined their children's chance of 
obtaining insurance further down the line.
  This bill will put an end to discriminatory insurance practices based 
on genetic testing and allow patients the freedom to access vital 
information about their health--and I hope my colleagues will join us 
in supporting it.
  Mr. FRIST. Mr. President, I rise today to speak on the critical issue 
of genetic discrimination and to once again proudly join my colleagues, 
Senators Snowe, Jeffords, Collins, and DeWine, in introducing the 
Genetic Information Nondiscrimination in Health Insurance Act of 2001. 
This progressive, forward-looking legislation, which we have developed 
and pushed over the past several years, will provide patients with real 
protections against the threat of genetic discrimination in health 
insurance.
  This week, researchers will, for the first time, publish the complete 
human genome map and sequence. As a physician and researcher, I applaud 
the completion of this work, and recognize that, although much has been 
done, much more remains before we may have a complete understanding of 
the human gene and its role in many diseases.
  Over the past several years, I have closely followed the progress of 
the research into the human gene, aware of the prospect that it has to 
radically alter the practice of medicine, but also concerned by its 
potential for harm. The past generation has witnessed dramatic progress 
in this area--and I am aware of the great differences in medicine 
between the time when my father was visiting patients' homes with his 
black doctor's bag and my own experiences in heart and lung 
transplantation. But our increasing knowledge of the human genome 
represents an opportunity for revolutionary advances in medical 
diagnoses and treatment. Having access to these secrets of the human 
gene may open doors to an entirely new way of practicing medicine over 
the coming decades, by producing drugs designed for specific genes and 
genetically engineered organs for use in organ transplants, as well as 
enhancing the ability of preventive care based in large part on genetic 
testing.
  We have already identified genes that are associated with an 
increased risk of diseases such as breast cancer, colon cancer and 
Alzheimer's dementia. In the past several weeks, in fact, researchers 
announced the discovery of a gene linked with type 1, or juvenile, 
diabetes, noting that, although the gene

[[Page S1525]]

may not be the sole cause of the disease, targeting the gene, may help 
prevent its onset. As science moves forward, researchers will continue 
to learn more about links between genes and the risk of future disease. 
And, as more is learned in these fields, physicians will be able to 
better treat their patients against the risk of future diseases by 
prescribing preventive measures based on an individual's genetic tests.
  However, as important as these advances are, there exists a threat to 
our ability to realize their full potential. If, as has been found to 
be the case, patients fear retribution for carrying ``bad'' genes and 
refuse to be tested, then much of the fruits of these labors will have 
been in vain. As more individuals fear discrimination in health 
insurance through denial of coverage or costly premiums, they will be 
more likely to refuse genetic testing. For example, as I noted when we 
first introduced this legislation two years ago, 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.
  Often here in the United States Senate, we are asked to pass 
legislation in response to past or ongoing problems. But the 
legislation we are introducing today gives us a great opportunity to 
avoid this, to pass forward-thinking legislation that will prevent a 
problem, rather than be forced to revisit this issue in a few years to 
attempt to remedy a problem.
  Particularly in the fields of biomedical research, where scientific 
progress moves at a rate much quicker than public policy debate and 
legislation, we are often forced to confront issues after the fact. But 
although we know that the fear of health insurance discrimination based 
upon one's genetic test results is already present in society, we have 
an opportunity through this legislation to calm that fear and to 
prevent such discrimination from ever taking place. But let no one 
misunderstand me. While this legislation is a chance to prevent what 
might happen, our window of opportunity is rapidly shortening. The 
every-escalating speed of genetic discovery demands that Congress move 
to prohibit discrimination against healthy individuals who may have a 
genetic predisposition to disease.
  The bill that I introduce today with Senators Snowe and Jeffords does 
just that. The Genetic Information Nondiscrimination in Health 
Insurance Act of 2001 prohibits group health plans or health insurance 
issuers from adjusting premiums based on predictive genetic information 
regarding an individual. It prohibits issuers in the individual 
insurance market from using predictive genetic information to deny 
coverage or set premium rates. It prohibits insurers from even asking 
an individual for predictive genetic information or requiring that 
person to undergo genetic testing. And it makes certain that insurers 
establish and maintain appropriate safeguards for the confidentiality 
of predictive genetic information as well as provide patients a 
description of those procedures in place to safeguard their predictive 
genetic information.
  Over the past several years, Congress has invested great amounts in 
biomedical research, through the push to double the budget of the 
National Institutes of Health and other initiatives. The underlying 
goal in these endeavors has been to see patients benefit from our 
investments and fully utilize these medical advancements to improve 
their health. The deciphering of the human genome presents an 
unparalleled opportunity to more towards this goal of improving 
patients' health, but this will not be possible unless individuals are 
willing to be tested. Patients must feel safe from repercussions based 
on their genetic profile. The prohibition of genetic discrimination in 
insurance will remove the greatest barrier to testing and thus further 
accelerate our scientific progress.
  Patients must not forgo genetic testing because they fear they may be 
discriminated against in insurance. We have the opportunity--we have 
the duty--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.
                                 ______