[Congressional Record Volume 147, Number 20 (Tuesday, February 13, 2001)]
[Senate]
[Pages S1340-S1344]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. DASCHLE (for himself, Mr. Harkin, Mr. Dodd, Mr. Kennedy, 
        Mr. Biden, Mr. Bingaman, Mrs. Clinton, Mr. Durbin, Mr. Inouye, 
        Mr. Kerry, Mr. Leahy, Ms. Mikulski, Mrs. Murray, Mr. 
        Rockefeller, Mr. Sarbanes, Mr. Schumer, and Mr. Corzine):
  S. 318. 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.
  Mr. DASCHLE. Mr. President, yesterday we read the first news accounts 
of the first analysis ever of the human genetic code--what some have 
called ``the blueprint of human life'' itself. Today, Senators Kennedy, 
Harkin, Dodd, and I are introducing a bill to make sure this stunning 
new knowledge is used to help Americans, not hurt them. Our bill is 
called the ``Genetic Nondiscrimination in Health Insurance and 
Employment Act.'' It says simply that genetic information may not be 
used to discriminate against Americans in health insurance or 
employment. An identical measure will be introduced tomorrow in the 
House by more than 150 Republican and Democratic co-sponsors.
  The genetic revolution has the potential to dramatically improve 
health care. Genetic technology can greatly improve our ability to 
treat and even cure now-incurable illnesses. Genetic tests can tell 
whether a person is at risk of developing certain diseases years before 
symptoms appear, giving her either peace of mind--or critical time to 
reduce her risks. But the scientific and commercial value of the human 
genome project will be seriously undermined if people refuse to take 
genetic tests because they fear the results may be used against them.
  That is not just our opinion. That warning has been sounded 
repeatedly by the two men who understand genetic testing better than 
anyone in the world--the scientists in charge of the two teams that 
mapped the human genome. Dr. Craig Venter and Dr. Francis Collins. At a 
White House ceremony last June where Doctors Venter and Collins 
unveiled the sequencing of the human genome, they warned that our laws 
were not keeping pace with science and urged Congress to pass strong 
federal protections against genetic discrimination. As Dr. Collins put 
it: ``If we needed a wake-up call, isn't today the wake-up call?''
  The question now is: Are we going to heed that warning? Or, are we 
going to turn a deaf ear? This bill is the test. It has four major 
components. First, it forbids employers from using genetic information 
to decide who to hire or fire, and other terms and conditions of 
employment. Second, it forbids insurers from using genetic information 
to deny or restrict coverage, or raise premiums. Third, it prevents 
disclosure of identifiable genetic information to health insurers, 
health insurance data banks, employers--and anyone else who has no 
legitimate need for the information. Finally, if these basic rights are 
violated, our bill gives victims of genetic discrimination the right to 
hold the violator accountable in court.

[[Page S1341]]

  It's been nearly three years since we first introduced this bill. 
Back then, some people said there was no need for these protections 
because there was no proof that genetic discrimination ever actually 
occurs. We got another wake-up call last Friday, when the Equal 
Employment Opportunity Commission went to court to challenge genetic 
testing by an employer. The EEOC has asked the court to order the 
Burlington Northern Santa Fe Railroad to end its alleged policy of 
requiring employees who claim work-related injuries related to carpel 
tunnel syndrome to undergo genetic testing--or lose their jobs.

  The Burlington Northern case marks the first time the EEOC has ever 
brought a genetic discrimination in court. But it is not the first case 
of genetic discrimination we've heard about in this Senate. Last July, 
the Senate Health, Education, Labor, and Pensions Committee held a 
hearing specifically on genetic discrimination in employment and what, 
if anything, the Senate should do about it. I testified at that hearing 
about a social worker who made the mistake of telling her co-workers 
that she had been the primary care-giver for her mother, who had died 
of Huntington's disease. Despite her own good health and her long 
history of outstanding performance reviews, she was fired. Why? Because 
there is a chance she might one day develop the same disease that 
killed her mother.
  I also testified about a 40-year-old mother of two young children who 
agreed to participate in a genetic research study. She tested positive 
for BRAC1, the gene implicated in breast and ovarian cancer. After 
undergoing preventive surgery to remove her breast and ovaries to 
minimize the risk of cancer, she lost the insurance she received from 
her job. Then she lost her job. She, too, had a history of good work 
evaluations. Now she says she will never again participate in any 
health studies, and she will not allow her children to be tested.
  While genetic discrimination may be relatively rare now, experts say 
that's only because genetic tests are still relatively rare. As testing 
becomes more affordable, and more common, experts tell us, the 
incidence of discrimination is likely to increase dramatically.
  How many more times do we need to hear about lives that have been 
shattered by someone's misuse of genetic information before we say 
clearly: ``In America, you cannot discriminate against people because 
of their genetic makeup. Period.''
  This is a matter that effects every one of us. We all have flaws in 
our genes.
  With rare exceptions, genetic tests can't confirm if we will ever 
develop a particular disease. All they can tell us is that we might 
some day develop the disease. Or we might not. Is it fair for employers 
to use genetic information in deciding who to hire and who to fire?
  More than 10 years ago, we passed the Americans with Disabilities 
Act. We agreed then that, in this country, you can't discriminate 
against someone because of a disability. Can we really believe now that 
employers and insurers ought to be allowed to discriminate against 
someone because he or she might someday develop a disability illness?
  Last week, three insurance companies in England admitted for the 
first time that they test for Huntington's disease, a progressive and 
incurable neurological disorder. One insurer also admitted it uses 
experimental tests for breast and ovarian cancer and Alzheimer's 
disease.
  Do we have to wait until insurers in this country start using genetic 
screening routinely before we set some reasonable legal guidelines for 
genetic tests? How many more wake-up calls do we need?
  Last summer, shortly after he and Francis and Collins unveiled the 
sequencing of the human genome, Craig Venter wrote me a letter. In it, 
he warned that genetic discrimination ``is not a theoretical concern. 
Today, people who know they may be at risk for a genetic disease are 
foregoing diagnostic tests for fear they will lose their job or their 
health insurance.'' As a result, he said, ``the incentives for new 
discoveries and treatments based on our newly acquired genomic 
information are diminished, and the promising new era in medicine is 
delayed.''
  There are some who say strong federal protections are not needed 
because a number of states have already passed bills to prevent genetic 
discrimination. They're right about one thing: many states have passed 
laws. I'm proud to report that South Dakota became the latest last 
Friday when it adopted legislation to curb the collection of a person's 
genetic information without informed consent. In all, 37 states have 
passed bills regarding genetic discrimination in health insurance, and 
22 states have laws regarding genetic discrimination in the workplace.
  Those laws represent progress. And they offer some protection. The 
problem with the current patchwork of state laws is that it contains 
major loopholes. For example: some states protect only DNA and RNA. 
Other states extend protection to family history data and other medical 
information that could offer some genetic clues. In addition, because 
of federal exemptions, state laws offer no protections to the one-in-
three Americans who get their health insurance through their employer.
  Others say this bill is not needed because the Americans with 
Disabilities Act already prohibits discrimination based on disability. 
The problem with that theory is: it's never been tested. The Burlington 
Northern case represents that first time a genetic discrimination suit 
has been brought specifically on the grounds that it violates the ADA. 
Maybe the court will decide that the ADA does cover genetic 
discrimination. Maybe it will decide that it doesn't. Either way, a 
definitive answer could take years. What is the harm of us acting now 
to say clearly that genetic discrimination will not be tolerated in 
America? What is the worst thing that could happen? That we end up with 
two laws, each protecting the same fundamental principle?
  Last year, then-President Clinton signed an executive order banning 
genetic discrimination in federal employment. Our bill seeks merely to 
extend the same protections to private workplaces and insurers. The 
principles in our bill are supported by both Dr. Craig Venter and Dr. 
Francis Collins. They are also supported by the federal Advisory 
Committee on Genetic Testing, the Equal Employment Opportunity 
Commission and the departments of Labor, Justice, and Health and Human 
Services. More important, they are supported by a strong majority of 
the America people.
  At the beginning of our nation's history, Thomas Jefferson wrote, 
``laws and discoveries must go hand in hand with the progress of the 
human mind. As . . . new discoveries are made . . . institutions must 
advance also to keep pace with the times.''
  Our new knowledge about the genetic blueprint has the potential to 
dramatically improve our health and the quality of our lives. However, 
if we don't respond to the wake-up call now, this new knowledge also 
has the potential to destroy lives. We simply cannot afford to take one 
step forward in science, while taking two steps backwards in civil 
rights!
  The legislation we offer today will enable us to move forward in a 
way that will benefit--and protect--all Americans. I thank my 
colleagues--Senators Kennedy, Dodd, and Harkin--for all their help in 
this endeavor. I also thank our colleagues in the House--particularly 
Congresswoman Louise Slaughter, for her tireless effort to move our 
companion bill to the floor in that chamber. And I urge my colleagues 
to join us in answering the wake-up call now so that we can make sure 
the genetic revolution--which has been largely financed with American 
tax dollars--helps people--instead of hurting them.
  Mr. HARKIN. Mr. President, I am pleased to introduce the ``Genetic 
Non-discrimination in Health Insurance and Employment Act'' with 
Senator Daschle, Senator Dodd, Senator Kennedy, and other colleagues. 
This bill would bring our nondiscrimination policies into the 21st 
century.
  Genetic discrimination is a terribly important issue and one that I 
have been following for quite some time now. My interest started in the 
late 1980s when I was first involved in the effort to fund the Human 
Genome Project at NIH. Looking back over the past ten years, this was 
one of the best investments our country has ever made. The advances in 
the study of the human gene are mind-boggling. Last

[[Page S1342]]

year, the Human Genome Project and Celera Genomics announced that 
scientists had mapped the entire human genome. Just yesterday, these 
same scientists reported the probable number of human genes at 30,000 
to 40,000 (only twice as many genes as your run-of-the-mill roundworm).
  The impact of these discoveries will go far beyond the laboratory. 
The mapping of the human genome will mean enormous gains in science and 
the provision of health care. The identification of a number of 
disease-related genes has already provided scientists with important 
new tools for understanding the underlying mechanisms for many 
illnesses. And genomic technologies have the potential to lead to 
better diagnosis and treatment, and, ultimately, the prevention and 
cure of many diseases and disabilities.
  However, without genetic discrimination protections, people will be 
deterred from using genetic technologies that detect and prevent the 
onset of life-threatening diseases.
  Discrimination in health insurance and employment, and the fear of 
potential discrimination, threaten our ability to conduct the very 
research we need to understand, treat, and prevent genetic disease. 
Moreover, discrimination--and the fear of discrimination--threaten our 
ability to use new genetic technologies to improve human health. As a 
result, our rapid, scientific progress could be rendered meaningless 
for the every day American.
  Let me give you just a few examples:
  In the early 1970's some insurance companies denied coverage and some 
employers denied jobs to African-Americans who were identified as 
carriers for sickle-cell anemia, even though they were healthy and 
would never develop the disease.
  More recently, in a survey of people in families with genetic 
disorders, 22 percent indicated that they, or a member of their family, 
had been refused health insurance on the basis of their genetic 
information.
  And a number of researchers have been unable to get individuals to 
participate in cancer genetics research. Fear of discrimination is 
cited as the reason why.
  But this is more than just about numbers and anonymous individuals, 
it's about real people--including my own family. As many of you know, 
both my sisters died from breast cancer. And other members of my family 
might be at risk. Should I counsel them to get tested for the BRCA1 and 
BRCA2 mutations? Should I counsel them to disclose our family history 
to their health care providers?
  Right now, I'm torn. I know that if my family is to have access to 
the best available interventions and preventive care, they should get 
tested, and they should disclose our family's medical history to their 
physicians. But, conversely, if they are to get any health care at all, 
they must have access to health insurance. Without strong protections 
against discrimination, access to health insurance is currently in 
question.
  In 1995, I introduced an amendment during the mark-up of the Health 
Insurance Portability and Accountability Act. My amendment clarified 
that group health plans could not establish eligibility, continuation, 
enrollment, or contribution requirements based on genetic information. 
The amendment became part of the manager's package that went to the 
floor, and it ultimately became law.
  HIPAA is a good first step. We should be proud of that legislation. 
Yet if our goal is to ensure that individuals have access to health 
insurance coverage and to employment opportunities--regardless of their 
genetic makeup--we must ensure that they are protected against 
discrimination on the basis of their genetic makeup.
  Our proposed legislation offers such protections. Let me describe 
them in brief:
  First, this legislation prohibits insurers and employers from 
discriminating on the basis of protected genetic information. It is 
essential to prohibit discrimination both at work and in health 
insurance coverage. If we only prohibit discrimination in the insurance 
context, employers who are worried about future increased medical costs 
or increased sick time will simply not hire individuals who have a 
genetic predisposition to a particular disease.
  Second, under our proposal, health insurance companies are prohibited 
from disclosing genetic information to other insurance companies, 
industry-wide data banks, and employers. If we really want to prevent 
discrimination, we should not let genetic information get into the 
wrong hands in the first place.
  Finally, if protections against genetic discrimination are to have 
teeth, we must include strong penalties and remedies to deter employers 
and insurers from discriminating in the first place.
  This bill will ensure that every American will enjoy the latest 
advances in scientific research and health care delivery, without fear 
of retribution on the basis of their sensitive genetic information. All 
of us should be concerned about this issue, because all of us have 
genetic information that could be used against us. As we move into the 
new millennium, everyone should enjoy the benefits of 21st century 
technologies--and not be harmed by 21st century discrimination.
  I applaud the commitment of my fellow co-sponsors on this important 
issue and look forward to working with my colleagues on both sides of 
the aisle to pass federal legislation that will prohibit genetic 
discrimination in the workplace and in health insurance.
  Mr. DODD. Mr. President, over the past decade the science of 
identifying genetic markers for diseases has evolved at an astonishing 
pace. For an increasing number of Americans, science fiction has become 
reality--their doctors can now scan their unique genetic blueprints and 
predict the likelihood of their developing diseases like cancer, 
Alzheimer's or Parkinson's.
  Armed with this knowledge, individuals and families can make informed 
decisions about their health care including, in some cases, even taking 
steps to prevent the disease or to detect and treat it early. 
Unfortunately, however, phenomenal advances in our knowledge about 
genetics have outpaced the protections currently provided in law. Thus, 
the potential also exists for this information to be used by health 
insurers or employers to deny health coverage or job opportunities.
  And, in fact, recent events have catapulted the issue of genetic 
discrimination from a potential concern to a devastating reality. Just 
this week, the U.S. Equal Employment Opportunity Commission filed a 
lawsuit against an employer for requiring genetic testing of employees 
who file injury claims. Additionally, a recent survey of over 2,000 
companies conducted by the American Management Association showed that 
18.1 percent of companies require genetic or medical family history 
data from employees or job applicants. According to the same survey, 
26.1 percent of the companies that require genetic or family medical 
history tests use the results of those tests in hiring decisions.
  We know that Federal and State laws currently offer only a patchwork 
of protections against the misuse of genetic information. While the 
Health Insurance Portability and Accountability Act of 1996 took 
important first steps toward prohibiting genetic discrimination in 
health insurance, it left large gaps. For example, it does not prohibit 
insurers from requiring genetic testing or from disclosing genetic 
information and offers no protection at all for people who must buy 
their insurance in the individual market. And, while several States, 
including Connecticut, have enacted legislation prohibiting health 
insurance discrimination, these laws can not protect the 51 million 
individuals in employer-sponsored ``self-funded'' health plans. 
Additionally, few States have chosen to address the issues of 
employment discrimination or the separate issue of the privacy of 
genetic records.
  I know from personal experience that this issue is not a partisan 
one. Four years ago, I joined Senator Domenici in introducing one of 
the first bills on this critical topic, addressing both insurance and 
employment discrimination. And two years ago, along with many of my 
Democrat colleagues, I joined Senator Snowe in supporting strong 
legislation protecting patients from genetic discrimination in 
insurance.
  Today I am pleased to join my colleagues, Senator Daschle, Senator 
Harkin and Senator Kennedy in introducing comprehensive legislation to

[[Page S1343]]

safeguard the privacy of genetic information and prohibit health 
insurance or employment discrimination based on genetic information. 
Specifically, this legislation would prohibit health insurers from 
discriminating based on genetic predisposition to an illness or 
condition and would prevent insurers from requiring applicants for 
health insurance to submit to genetic testing. This bill would also 
address concerns about employment discrimination by preventing 
employers from firing or refusing to hire individuals who may be 
susceptible to a genetic condition. Finally, this legislation holds 
employers and insurers accountable by imposing strong penalties those 
who violate these provisions.
  Three years ago, in a visit to Yale University's Genetic Testing 
Center I had the opportunity to glimpse cutting edge uses of that 
technology. I also had the opportunity, however, to hear the fears 
expressed by the patients at the center. On that visit I met with Keith 
Hall, who has been a patient at Yale for several years--since he was 
first diagnosed with Tuberous Sclerosis, a genetic disease that causes 
tumors of the brain, kidney and other organs, and sometimes mental 
retardation. Keith worries about what would happen to his insurance if 
he ever had to switch jobs.
  I also met with Ashley Przybylski, an 11-year-old girl from Oxford, 
CT. Ashley suffers from a genetic nutritional disorder that can cause 
seizures and brain damage. While currently the family's insurance 
covers the exorbitant cost of the medication that keeps her healthy--
$33,000 a year--Ashley faces the prospect of being denied coverage when 
she gets older.
  While we as a Nation welcome these scientific achievements, it is 
critical we ensure that they be applied for the purposes of preventing 
or treating disease, rather than for denying health insurance or 
employment to individuals. This issue is too important to ignore for 
yet another year. Each day that passes more individuals suffer 
discrimination. Each day that we fail to act, more families will be 
forced to make decisions about genetic testing based, not on their 
health care needs, but on fear.
  I pledge my commitment to ensuring that continued progress in science 
is matched by progress in creating protections against discrimination 
and establishing fundamental rights to privacy. I'd like to again thank 
my colleagues, Senator Daschle, Senator Kennedy and Senator Harkin for 
joining me in introducing this legislation.
  Mr. KENNEDY. Mr. President, this week, scientists announced the 
completion of a task that once seemed unimaginable--deciphering the 
entire DNA sequence of the human genetic code. This amazing 
accomplishment is likely to affect the 21st century as profoundly as 
the invention of the computer or the splitting of the atom affected the 
20th century.
  These new discoveries bring remarkable new opportunities for 
improving health care. But they also carry the danger that genetic 
information will be used--not to improve the lives of Americans--but as 
a basis for discrimination. Discrimination on the basis of a person's 
genetic traits--such as those associated with cancer, Huntington's 
disease, or sickle cell anemia--is as unacceptable as discrimination on 
the basis of gender, race, or religion. No American should be denied 
health insurance or fired from a job based on the results of a genetic 
test.
  People need access to genetic testing, in order to seek treatments to 
extend and improve their lives. Yet, the vast potential of genetic 
knowledge to improve health care will go unfulfilled, if patients fear 
that information about their genetic characteristics will be used as 
the basis for discrimination. Congress has a responsibility to 
guarantee that private medical information remains private, and that 
genetic information cannot be used for improper purposes.
  The Genetic Non-Discrimination in Health Insurance and Employment Act 
guarantees these protections. It gives the American people the 
protections they need and deserve against genetic discrimination. It 
prohibits employers from using genetic information to discriminate in 
the workplace in hiring, promotion, pay or other workplace rights and 
privileges. And it gives victims of genetic discrimination the right to 
seek remedies through legal action.
  In too many cases today the promise of genetic research is being 
squandered, because patients rightly fear that information about their 
genes will be used against them in the workplace or in health 
insurance. Study after study reports that the vast majority of 
Americans are concerned about taking a genetic test, for fear that 
employers will have access to the information. The Journal of the 
American Medical Association reported that 57 percent of women at risk 
for breast or ovarian cancer had refused to take a genetic test that 
could have identified their risk for cancer and assisted them in 
receiving medical treatment to prevent the onset of these diseases 
because they feared reprisals for doing so. Tragically, the vast 
potential of genetic knowledge to improve health care will go 
unfulfilled if patients fear that information about their genetic 
characteristics will be used as the basis for job discrimination or 
other prejudices.
  And that fear is clearly well-founded. Genetic discrimination is a 
real and frightening problem, and it is happening right now. Last 
Saturday reports of mandatory genetic testing of employees made 
headline news--and the testing was being conducted by one of the 
largest railroads in this country. One employee was informed by the 
railroad that he would be fired for refusing to submit to the genetic 
testing.
  This is just the tip of the iceberg of what is becoming a routine and 
pervasive employer practice as genetic testing becomes more accessible 
and economical. Today, employers and insurers often require and use 
this information to deny health coverage, refuse a promotion, or reject 
a job applicant--all in the absence of any symptoms of disease. 
According to a 1995 study by Georgetown University, people have been 
required to provide information about genetic diseases, disabilities, 
or family medical history on job applications and have been denied jobs 
or have lost jobs because of a family genetic condition.
  Moreover, a recent survey by the American Management Association of 
over 2,000 companies showed that more than 18 percent of companies 
require genetic tests or data on family medical history from employees 
or job applicants. According to the same survey, more than 26 percent 
of the companies that require this information use it in hiring 
decisions.

  Experts in genetics are virtually unanimous in calling for strong 
protections to prevent this misuse and abuse of science. The Department 
of Health and Human Services' advisory panel on genetic testing--
consisting of experts in law, science, medicine and business--
recommended unambiguously that ``Federal legislation should be enacted 
to prohibit discrimination in employment and health insurance based on 
genetic information.'' Dr. Craig Venter, the president of Celera 
Genomics, who led the privately-financed aspect of the gene sequencing 
research, has spoken of the ``immediate threat . . . [of] genetic 
discrimination. . . . [H]uman rights and civil rights law will have to 
be updated to include this new class of diagnosed person. At this 
stage, one can only imagine the future potential of abuse,'' he said.
  With time, the potential for genetic discrimination will only grow 
stronger and federal legislation to establish minimum protections is 
needed to ensure that advances in research and technology are not used 
to discriminate against workers. Without strong protections 
guaranteeing that private medical information remains private and that 
genetic information can not be used for improper purposes, we will 
squander the unprecedented opportunities presented by these new 
discoveries, and the health and welfare of large numbers of our fellow 
citizens will be put at risk.
  I commend our leader, Senator Daschle, for introducing this important 
legislation that will give the American people the protections against 
genetic discrimination they need and deserve. The Genetic Non- 
Discrimination in Health Insurance and Employment Act will prohibit 
insurers from denying or abridging health care coverage on the basis of 
genetic test results. It will protect employees from discrimination on 
the basis of their unalterable genetic inheritance. The Act safeguards 
Americans' private genetic information from

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unauthorized disclosures to employers, banks, and others who should not 
have access to this most sensitive of personal information. And, 
because a right without a remedy is no right at all, this important 
measure would provide persons who have suffered genetic discrimination 
in either arena with the right to seek redress through legal action. I 
urge my colleagues to join Senator Daschle and me in supporting the 
Genetic Non-Discrimination in Health Insurance and Employment Act.
                                 ______