[Congressional Record Volume 145, Number 96 (Thursday, July 1, 1999)]
[Senate]
[Pages S8104-S8108]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. DASCHLE (for himself, Mr. Harkin, Mr. Dodd, and Mr. 
        Kenendy):
  S. 1322. A bill to prohibit health insurance and employment 
discrimination against individuals and their family members on the 
basis of predictive genetic information or genetic services; to the 
Committee on Health, Education, Labor, and Pensions.


THE GENETIC NONDISCRIMINATION IN HEALTH INSURANCE AND EMPLOYMENT ACT OF 
                                  1999

  Mr. DASCHLE. Mr. President, today, with my colleagues Senators 
Kennedy, Harkin, and Dodd, I announce the introduction of the Genetic 
Nondiscrimination in Health Insurance and Employment Act of 1999, a 
piece of legislation designed to stop genetic discrimination. The 
advent of testing for genes that indicate a predisposition to disease 
has presented us with a new series of opportunities and challenges. 
While prior awareness of susceptibility to disease offers millions the 
chance to take preventive measures that will help them live healthier 
and longer lives, there also exists the possibility that genetic 
information will be misused. It is for that reason that we Democrats 
feel strongly that measures must be taken to ensure that health 
insurers may not discriminate against patients on the basis of 
predictive genetic information, and that employers may not discriminate 
against employees in the provision of health insurance or by 
withholding job benefits as a result of the improper use of genetic 
information.
  When the Patients' Bill of Rights reaches the floor after the July 
recess, we hope to offer this bill as an amendment to the bill under 
consideration. This issue, like many others, exposes a fault line 
between the Republican and Democratic approach to health insurance 
reform.
  Scientific advances now make it possible to identify genes that 
indicate a predisposition to disease. For example, tests for genes 
associated with hereditary breast cancer are commercially available. 
Genetic information may prove highly beneficial in areas related to 
prevention, treatment, diet, or lifestyle. While this is profoundly 
good news for patients, it also raises fears regarding how genetic 
information will be used in the workplace. Advances in genetic and 
screening, accelerated by the Human Genome Project at the National 
Institutes of Health, increase physicians' ability to detect genetic 
mutations. These technologies and their resulting genomic data will 
enhance medical science, but may also lead to discrimination.
  Regrettably, many employers may not hire individuals whom they 
believe will require time off or medical treatment at some point in the 
future due to a genetically transmitted disease. Equally disturbing, 
employers may simply deny insurance coverage to employees who they 
believe are predisposed to genetic disease. This discrimination could 
result despite the

[[Page S8105]]

fact that genetic testing only indicates that an individual may be 
predisposed to a disease--not necessarily whether that disease will 
develop.
  This issue is already touching the lives of many Americans. For 
example, a survey last year by the American Management Association of 
over 1,000 companies indicated that 5% of responding employers 
currently do genetic testing of their employees. While that number may 
sound small, its more than the number of companies who test for HIV 
status. And of those companies who do genetic testing on their 
employees, 19% have chosen not to hire an individual and 10% have 
dismissed an employee based on the genetic test results.
  Anecdotal evidence suggests that fear of discrimination already has 
inhibited people who may be susceptible to disease from getting genetic 
testing. In some cases, this means that gene carriers will miss out on 
early diagnosis, treatment or even prevention. If consumers avoid 
taking advantage of available diagnostic tests out of fear of 
discrimination, they may suffer much more serious--and more expensive--
health problems in the long run.
  That is why our proposal to ban employment discrimination is clearly 
supported by the American people. A recent national poll by the 
National Center for Genome Resources demonstrates that an overwhelming 
majority of those surveyed--85%--think that employers should be 
prohibited from obtaining information about an individual's genetic 
conditions, risks, and predispositions.
  We will pay the price in more than increased health care costs if we 
allow genetic information to be used in a discriminatory manner. 
Discrimination based on genetic factors can be as unjust as that based 
on race, national origin, religion, sex or disability. In each case, 
people are treated inequitably, not because of their inherent 
abilities, but solely because of irrelevant characteristics. Genetic 
discrimination that excludes qualified individuals from employment robs 
the marketplace of skills, energy, and imagination. Finally, genetic 
discrimination undercuts the Human Genome Project's fundamental purpose 
of promoting public health. Investing resources in the Human Genome 
Project is justified by the benefits of identifying, preventing and 
developing effective treatments for disease. But if fear of 
discrimination deters people from genetic diagnosis or from confiding 
in physicians and genetic counselors, and makes them more concerned 
with job loss than with care and treatment, our understanding of the 
humane genome will be for naught.
  Because genetic information could be used unfairly, Congress must 
expand the scope of its anti-discrimination laws to include a ban on 
genetic discrimination. Our bill has three major components: (1) it 
forbids employers from discriminating in hiring or in the terms and 
conditions of employment on the basis of genetic information, (2) it 
forbids health insurers from discriminating against individuals on the 
basis of genetic information, and (3) it prevents the disclosure of 
genetic information to people who have no legitimate need for the 
information: health insurers, health insurance data banks, or to 
employers.
  Now, before the use of genetic information becomes widespread, we 
must make sure that dramatic scientific advances do not have negative 
consequences for the public. We have an historic opportunity to preempt 
this problem. I hope that my colleagues will join me in supporting this 
important legislation.
  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, phenomenal advances in our knowledge about genetics 
have outpaced the protections currently provided in law. Thus, the 
potential also exists for this remarkable new information--which is 
making such a difference in people's lives in terms of their health--
this information could always be used by health insurers, employers, or 
others to deny health coverage or job opportunities to people.
  We know the 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.
  While several States--including my own--have enacted legislation 
prohibiting health insurance discrimination, these laws cannot protect 
more than 51 million American individuals in employer-sponsored, 
``self-funded'' health plans. Additionally, few States have chosen to 
address the issue of employment discrimination or the separate issue of 
the privacy of genetic records.
  I have personal experience that this issue is not a partisan issue. 
Two years ago, my distinguished friend and colleague from New Mexico, 
Senator Domenici, and I introduced one of the first bills on this 
critical topic addressing both insurance and employment discrimination.
  Last year, along with many of my Democratic colleagues, I joined 
Senator Snowe of Maine 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 safeguard the privacy of genetic information and to prohibit health 
insurance or employment discrimination based on genetic information.
  Specifically, this legislation, which we call the Genetic 
Nondiscrimination Health Insurance and Employment Act, 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 the 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 would hold employers and insurers 
accountable by imposing strong penalties on those who violate these 
previous just stated provisions.
  In a few short years researchers will have the ability to translate 
the entire genetic code, revealing each individual's unique genetic 
blueprint. It is an astonishing prospect. Last year, in a visit I made 
to Yale University's Genetic Testing Center, I had the opportunity to 
see into the future and glimpse cutting-edge uses of this technology. I 
also had the opportunity to hear of the fears expressed by patients at 
this center.
  As an aside, we are talking about predisposition. We are now reaching 
a point on breast cancer in women, through tests being done over the 
years on twins, where we are able to determine almost at birth the 
likelihood or the probability of a woman contracting breast cancer at 
the time of that child's birth--looking into the future based on the 
genetic markers.
  That is profound information. It could make a huge difference to be 
able to know early on about a predisposition based upon your genetic 
makeup, knowing you have a probability or a likelihood later in life of 
contracting certain diseases. That allows that individual and that 
family early on to take the steps through diet and/or mediation, 
prescriptions, and so forth, to avoid the possibility of contracting 
these dreaded diseases. That is the great news. It is phenomenal. It is 
happening at such a pace, it is hard to believe.
  As we gather this information that a person may be, based upon their 
genetic makeup, susceptible to breast cancer, Alzheimer's, Parkinson's 
disease, or other forms of cancer, that information ought to be 
protected. I believe it should. It is one thing if you

[[Page S8106]]

have a condition and you keep that from an employer and they hire you 
and they want to know whether or not you have a condition. I don't 
think anyone ought to be allowed to deny revealing information that an 
employer ought to have. But a predisposition--that information ought 
not to deprive you of a job or health insurance just because that 
genetic information indicates that may be the case.
  This is what happens. While I visited this wonderful Genetic Testing 
Center at Yale University, I met with some patients and the researchers 
who do this work. They asked me to pay attention and listen to a couple 
of patients with whom they work.
  Keith Hall has been a patient at Yale for several years, since he was 
first diagnosed with something called tuberous sclerosis. Let me 
explain what that is. It is a genetic disease that causes tumors of the 
brain, kidney, and other organs, and sometimes mental retardation. 
Keith, obviously, worries about what will happen to his insurance if he 
ever has to switch jobs with that condition.
  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. Currently, the family insurance covers the 
exorbitant cost of medication that keeps her healty--about $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--we will 
be able to determine in the case of both Keith and Ashley that they 
have a predisposition for tuberous sclerosis or genetic nutritional 
disorders--if both this child and this individual were to be denied 
employment or insurance because of a genetic predisposition because 
that information becomes available, that is wrong and should be 
corrected.
  This legislation is designed to try to provide this kind of 
protection to people as we move forward with the wonderful information 
gathering of genetic information.
  The issue is too important to ignore for another year. Each day that 
passes, more individuals suffer discrimination. Each day we fail to 
act, more families are forced to make decisions about genetic testing 
based not on health care but on fear.
  I pledge my commitment to ensuring that progress on the Human Genome 
Project is matched against the potential discrimination in establishing 
some fundamental rights of privacy.
  I welcome comments from my colleagues and others who may be 
interested in being a part of this effort to try to get ahead of the 
curve as we deal with the wonderful news of genetic marking that can 
make such a difference in people's lives.
  Mr. HARKIN. Mr. President, genetic discrimination is a terribly 
important issue and one that I have been following for quite some time 
now. I am pleased to be here today with Senator Daschle, Senator Dodd, 
and Senator Kenendy to introduce the ``Genetic Non-discrimination in 
Health Insurance and Employment Act of 1999.''
  The advances we have made recently in the study of the human gene are 
mind-boggling. The identification of a number of disease-related genes 
is providing scientists with important new tools for understanding the 
underlying mechanisms for many illnesses. Genomic technologies have the 
potential to lead to better diagnosis and treatment, and ultimately to 
the prevention and cure of many diseases and disabilities.
  Yet 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.
  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 sicklecell 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% 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 markup 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. 
My 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 pass comprehensive anti-discrimination 
protections.
  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 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 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.
  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.
  In closing, let me say that this legislation 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 committment of my fellow co-sponsors on this important 
issue and look forward to working with the rest of my colleagues to 
pass federal legislation that will prohibit genetic discrimination in 
the workplace and in health insurance.
  Mr. KENNEDY. Mr. President, the Nation is making extraordinary 
progress in biomedical research. The National Institutes of Health will 
have developed a working draft of the entire human genome by next 
spring. Comprehensive knowledge of the genetic sequence will enable 
researchers to identify large numbers of mutations associated with 
disease. Understanding the molecular basis of hereditary diseases will 
expedite the search for more effective treatments and cures. The 
benefits for patients are likely to be unparalleled in the history of 
medicine.
  But this new scientific knowledge also raises a number of ethical, 
legal, and social questions. The National Institutes of Health is 
dealing with many of these challenges through programs funded by the 
National Human Genome Research Institute.

[[Page S8107]]

  Congress also has a key role to play in this process, especially in 
dealing with genetic discrimination, which is an increasingly serious 
problem in health insurance and the workplace. A 1996 study in 
``Science and Engineering Ethics'' documented more than 200 cases of 
discrimination against individuals with genetic predispositions to 
certain diseases, even though the individuals have no symptoms of the 
disease as yet. For example, some employers have used genetic screening 
to identify African Americans with the gene mutation for sickle cell 
anemia. Those with the sickle cell gene mutation were denied jobs, even 
though many were only carriers of the mutation and would never become 
ill themselves.
  In other cases, persons at risk for Huntington's disease have been 
denied health insurance and have lost their jobs. Similar concerns are 
arising in the wake of research showing a genetic basis for breast 
cancer. Ethnic groups who were participants in research to identify 
disease-related genes are increasingly concerned about the adverse 
effects on their insurance coverage and their jobs. Even at the 
National Institutes of Health, 32% of women offered a test for a 
genetic mutation related to breast cancer refused to take the test, 
citing concerns about possible discrimination and the loss of privacy.
  To deal with this issue, Senator Daschle, Senator Harkin, Senator 
Dodd, and I are introducing legislation to ban genetic discrimination 
by both health insurers and employers. Our proposal is the culmination 
of years of work and debate over genetic discrimination. The proposal 
that we are introducing today is based on our belief that neither your 
health insurer nor your employer should be able to discriminate against 
you based upon your genetic information. In this era, when many people 
obtain their health insurance through their employer, it is especially 
critical that both health insurers and employers are prohibited from 
disclosing genetic information to each other. Proposals that do not 
address both the insurance and the employment aspects of the issue will 
not truly prevent genetic discrimination.
  Our legislation prohibits health insurers from setting premiums and 
defining eligibility on the basis of genetic information. Because we 
believe that genetic testing is a decision that patients should make 
with their physicians, our bill prohibits insurers from suggesting or 
requiring patients to undergo genetic testing. Because insurers do not 
need to know genetic information for most situations, our bill 
prohibits them from requesting, collecting, or purchasing genetic 
information. In addition, the bill does not allow health insurers to 
share genetic information with each other, to disclose genetic 
information to industry-wide data banks, or to disclose genetic 
information to employers.
  We know that employers are beginning to collect genetic information 
and discriminate against applicants and employees. Many examples 
illustrate the problem on a personal level, such as the story of 
Christine, in Milwaukee, WI. One of Christine's parents developed 
Huntington's disease, which meant that Christine had a 50% chance that 
she had inherited the mutant gene that would cause her to develop the 
disease. Christine decided to undergo a genetic test to determine 
whether she had inherited the mutation. She traveled to the University 
of Michigan in Ann Arbor for the test, and paid for the test herself. A 
co-worker in the small firm where Christine worked overheard Christine 
making the arrangements for the test and told Christine's supervisor. 
Her supervisor was initially sympathetic and offered to help. Christine 
then underwent the genetic test and learned that she had indeed 
inherited the mutation and would therefore eventually develop the 
disease. When Chistine shared this information with her supervisor, she 
was fired, despite a series of outstanding job evaluations. Now, 
because of Christine's experience, none of her siblings are willing to 
have the genetic test.

  This type of blatant discrimination must be stopped. Our legislation 
prohibits employers from collecting genetic information from any 
source, including health insurers, and from making any type of 
employment decision based on genetic information.
  We should all be concerned about genetic discrimination, because we 
all have mutations in our genes, and medical researchers are 
discovering new relationships between genes and diseases. Without 
legislative action, genetic discrimination will intensify as more genes 
associated with specific diseases are discovered, and as genetic 
testing becomes more common. Earlier this week, Vice President Gore 
proposed a challenge to the biomedical research community--to identify 
all genes associated with cancer by the year 2002.
  Our legislation is supported by the Alliance to Genetic Support 
Groups, the National Partnership for Women and Families, the American 
Civil Liberties Union, and Hadassah.
  Congress should act quickly to pass legislation to ban genetic 
discrimination in health insurance and the workplace, so that we can 
benefit from those research advances without the threat that people 
will lose their jobs or their health insurance.
  I ask uninamous consent that their letters of support be printed in 
the Record.
  There being no objection, the letters were ordered to be printed in 
the Record, as follows:

                             National Breast Cancer Coalition,

                                                     July 1, 1999.
     Hon. Ted Kennedy,
     U.S. Senate,
     Washington, DC.
       Dear Senator Kennedy: On behalf of the National Breast 
     Cancer Coalition (NBCC), I am writing to thank you for your 
     leadership in offering the Genetic Nondiscrimination in 
     Health Insurance and Employment Act of 1999. As you know, 
     NBCC is a grassroots advocacy organization made up of over 
     500 organizations and tens of thousands of individuals, their 
     families and friends. We are dedicated to the eradication of 
     the breast cancer epidemic through action and advocacy. 
     Addressing the complex privacy, insurance and employment 
     discrimination questions raised by evolving genetic 
     discoveries is one of our top priorities.
       Discrimination in health insurance and employment is a 
     serious problem. In addition to the risks of losing one's 
     insurance or job, the fear of potential discrimination 
     threatens both a woman's decision to use new genetic 
     technologies and seek the best medical care from her 
     physician. It also limits the ability to conduct the research 
     necessary to understand the cause and find a cure for breast 
     cancer.
       The Kassebaum-Kennedy Health Insurance Reform Act (1996) 
     took some significant steps toward extending protection in 
     the area of genetic discrimination in health insurance. But 
     it did not go far enough. Moreover, since the enactment of 
     Kassebaum-Kennedy, there have been incredible discoveries at 
     a very rapid rate that offer fascinating insights in the 
     biology of breast cancer, but that may also expose 
     individuals to an increased risk of discrimination based on 
     their genetic information. For instance, because of the 
     discovery of BRCA1 and BRCA2, breast cancer susceptibility 
     genes, we now face the reality of a test that can detect the 
     increased risk associated with heritable breast cancer. 
     Genetic testing may well lead to the promise of improved 
     health. But if women are too fearful to get tested, they 
     won't be able to gain from the future benefits genetic 
     testing might offer.
       We commend your efforts to go beyond Kassebaum-Kennedy 
     toward ensuring that all individuals--not just those in group 
     health plans--are guaranteed protection against 
     discrimination in the health insurance arena and the 
     employment venue based on their genetic information. The 
     Genetic Nondiscrimination in Health Insurance and Employment 
     Act of 1999 would also guarantee individuals important 
     protections against rate hikes based on genetic information, 
     would prohibit insurers from demanding access to genetic 
     information contained in medical records or family histories, 
     and would restrict insurers' release of genetic information.
       Passage of this legislation, and the protections it offers, 
     are essential not only for women with a genetic 
     predisposition to breast cancer, but also for women living 
     with breast cancer, their families, and the millions of women 
     who will be diagnosed with breast cancer. We look forward to 
     working with you towards getting the Genetic 
     Nondiscrimination in Health Insurance and Employment Act of 
     1999 enacted this year.
       Thank you again for your outstanding leadership, and please 
     do not hesitate to call me or NBCC's Government Relations 
     Manager, Jennifer Katz if you have any questions.
           Sincerely,
     Fran Visco, President.
                                  ____

                                     Hadassah, The Women's Zionist


                                 Organization of America, Inc.

                                                     July 1, 1999.
     Hon. Edward Kennedy,
     Russell Senate Office Building, Washington, DC.
       Dear Senator Kennedy: On behalf of Hadassah's 300,000 
     members, I would like to thank you, as well as Senators 
     Daschle, Dodd, and Harkin for introducing ``The Genetic Non-
     discrimination in Health Insurance and Employment Act of 
     1999.'' The very information that may save someone's health

[[Page S8108]]

     or life should under no circumstances be used to deny them 
     the insurance coverage needed to pay for this care.
       The issue of genetics-based discrimination by both 
     insurance companies and employers has come to be of 
     particular concern to the Jewish community. Over the past few 
     years, studies have shown that certain populations experience 
     heightened hereditary susceptibility to certain genetic 
     mutations and their corresponding diseases. In particular, 
     women of Ashkenazi or Eastern European Jewish descent have 
     been found to demonstrate a distinct genetic predisposition 
     to both breast and ovarian cancers. Most recently, there have 
     been scientific findings linking colon cancer to Ashkenazi 
     Jews.
       Unfortunately, as Jews and other at-risk populations have 
     sought to learn more about their genetic backgrounds, they 
     have been confronted by genetics-based discrimination. As a 
     result of this discrimination, many individuals choose not to 
     receive genetic testing, or to even participate in research 
     studies. As scientists continue to identify the genetic 
     ``markers'' for more and more diseases, the issue of genetic 
     discrimination stands to confront each and every one of us--
     men and women alike--regardless of ethnic heritage.
       Hadassah has been active in support of similar legislation, 
     such as H.R. 306, sponsored by Representative Louise 
     Slaughter (D-NY), regarding health insurance discrimination. 
     We are optimistic that similar endeavors from your office, 
     and from those of your colleagues, will continue to expand 
     the scope and prominence of this issue. Hopefully, our 
     combined efforts will insure the passage of this legislation, 
     and ultimately result in the elimination of genetics-based 
     discrimination in both health insurance and employment. 
     Please sign Hadassah on as supporters of this bill.
       I look forward to working with you on this important piece 
     of legislation. If you have any additional questions, or 
     would like our assistance, please contact Ms. Tana Senn, 
     Director of American Affairs/Domestic Policy. Again, we 
     applaud your efforts in addressing this crucial issue.
           With admiration and appreciation.
                                                  Marlene E. Post,
     National President.
                                  ____

                                          American Civil Liberties


                                             Union Foundation,

                                                     July 1, 1999.
       Dear Senator Kennedy: The American Civil Liberties Union is 
     a national, private, non-profit organization of more than 
     250,000 members dedicated to preserving the principles of 
     liberty embodied in the Bill of Rights and the U.S. 
     Constitution. The ACLU applauds the efforts of Senators 
     Daschle, Dodd, Harkin and Kennedy in their continued efforts 
     to promote awareness of the current and future problems of 
     genetic discrimination. We are in full support of the Genetic 
     Nondiscrimination in Health Insurance and Employment Act of 
     1999 and ask that the issue of genetic discrimination be 
     given complete and immediate attention.
           Sincerely,

                                Jeremy Gruber, Legal Director,

                                        ACLU National Taskforce on
     Civil Liberties in the Workplace.
                                  ____

                                          National Partnership for


                                             Women & Families,

                                                     July 1, 1999.
     Hon. Edward M. Kennedy,
     U.S. Senate,
     Russell Senate Office Building, Washington, DC.
       Dear Senator Kennedy: I want to thank you for, once again, 
     taking the lead on an issue of great importance to women. The 
     National Partnership for Women & Families is proud to endorse 
     your bill, ``The Genetic Nondiscrimination In Health 
     Insurance and Employment Act of 1999.''
       We believe that genetic discrimination is the next big 
     civil rights issue. The job of deciphering every gene found 
     in the human body--more than 80,000 in all--is proceeding at 
     record speed. Just a decade ago, genetic testing was largely 
     restricted to prenatal tests to look for birth defects. 
     Today, more than 550 genetic tests are being used for the 
     diagnosis of disease, and millions of women and their 
     families stand to benefit from improved prevention, 
     detection, and treatment of diseases like breast and ovarian 
     cancer.
       Unfortunately, without adequate protection against misuse, 
     the potential for real medical benefit from genetic advances 
     may be outweighed by the fear of discrimination by insurers 
     and employers. Your bill will alleviate that fear and allow 
     women and men to benefit from medical and scientific 
     progress. Thank you once again for all your hard work on this 
     issue.
           Sincerely yours,
                                               Judith L. Lichtman,
                               President, National Partnership for
                                                 Women & Families.
                                               Susannah A. Baruch,
                              Director of Legal and Public Policy,
                        National Partnership for Women & Families.
                                 ______