[House Hearing, 108 Congress]
[From the U.S. Government Publishing Office]





   GENETIC NON-DISCRIMINATION: EXAMINING THE IMPLICATIONS FOR WORKERS 
                             AND EMPLOYERS

=======================================================================

                                HEARING

                               before the

              SUBCOMMITTEE ON EMPLOYER-EMPLOYEE RELATIONS

                                 of the

                         COMMITTEE ON EDUCATION
                           AND THE WORKFORCE
                     U.S. HOUSE OF REPRESENTATIVES

                      ONE HUNDRED EIGHTH CONGRESS

                             SECOND SESSION

                               __________

                             July 22, 2004

                               __________

                           Serial No. 108-71

                               __________

  Printed for the use of the Committee on Education and the Workforce



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                COMMITTEE ON EDUCATION AND THE WORKFORCE

                    JOHN A. BOEHNER, Ohio, Chairman

Thomas E. Petri, Wisconsin, Vice     George Miller, California
    Chairman                         Dale E. Kildee, Michigan
Cass Ballenger, North Carolina       Major R. Owens, New York
Peter Hoekstra, Michigan             Donald M. Payne, New Jersey
Howard P. ``Buck'' McKeon,           Robert E. Andrews, New Jersey
    California                       Lynn C. Woolsey, California
Michael N. Castle, Delaware          Ruben Hinojosa, Texas
Sam Johnson, Texas                   Carolyn McCarthy, New York
James C. Greenwood, Pennsylvania     John F. Tierney, Massachusetts
Charlie Norwood, Georgia             Ron Kind, Wisconsin
Fred Upton, Michigan                 Dennis J. Kucinich, Ohio
Vernon J. Ehlers, Michigan           David Wu, Oregon
Jim DeMint, South Carolina           Rush D. Holt, New Jersey
Johnny Isakson, Georgia              Susan A. Davis, California
Judy Biggert, Illinois               Betty McCollum, Minnesota
Todd Russell Platts, Pennsylvania    Danny K. Davis, Illinois
Patrick J. Tiberi, Ohio              Ed Case, Hawaii
Ric Keller, Florida                  Raul M. Grijalva, Arizona
Tom Osborne, Nebraska                Denise L. Majette, Georgia
Joe Wilson, South Carolina           Chris Van Hollen, Maryland
Tom Cole, Oklahoma                   Tim Ryan, Ohio
Jon C. Porter, Nevada                Timothy H. Bishop, New York
John Kline, Minnesota
John R. Carter, Texas
Marilyn N. Musgrave, Colorado
Marsha Blackburn, Tennessee
Phil Gingrey, Georgia
Max Burns, Georgia

                    Paula Nowakowski, Staff Director
                 John Lawrence, Minority Staff Director
                                 ------                                

              SUBCOMMITTEE ON EMPLOYER-EMPLOYEE RELATIONS

                      SAM JOHNSON, Texas, Chairman

Jim DeMint, South Carolina, Vice     Robert E. Andrews, New Jersey
    Chairman                         Donald M. Payne, New Jersey
John A. Boehner, Ohio                Carolyn McCarthy, New York
Cass Ballenger, North Carolina       Dale E. Kildee, Michigan
Howard P. ``Buck'' McKeon,           John F. Tierney, Massachusetts
    California                       David Wu, Oregon
Todd Russell Platts, Pennsylvania    Rush D. Holt, New Jersey
Patrick J. Tiberi, Ohio              Betty McCollum, Minnesota
Joe Wilson, South Carolina           Ed Case, Hawaii
Tom Cole, Oklahoma                   Raul M. Grijalva, Arizona
John Kline, Minnesota                George Miller, California, ex 
John R. Carter, Texas                    officio
Marilyn N. Musgrave, Colorado
Marsha Blackburn, Tennessee


                                 ------                                
                            C O N T E N T S

                              ----------                              
                                                                   Page

Hearing held on July 22, 2004....................................     1

Statement of Members:
    Andrews, Robert E., Ranking Member, Subcommittee on Employer-
      Employee Relations, Committee on Education and the 
      Workforce..................................................     3
    Johnson, Hon. Sam, Chairman, Subcommittee on Employer-
      Employee Relations, Committee on Education and the 
      Workforce..................................................     1
        Prepared statement of....................................     2

Statement of Witnesses:
    Hudson, Dr. Kathy, Director, The Genetics and Public Policy 
      Center, Johns Hopkins University, Washington, DC...........     5
        Prepared statement of....................................     8
    Licata, Dr. Jane Massey, Partner, Licata & Tyrell P.C., 
      Marlton, NJ................................................    34
        Prepared statement of....................................    35
    Lorber, Lawrence, Esq., Partner, Proskauer Rose LLP, 
      Washington, DC, on behalf of the U.S. Chamber of Commerce..    37
        Prepared statement of....................................    40
        Letter answering follow-up questions.....................    85
    Wildsmith, Tom, Chairman, Genetic Testing Taskforce, American 
      Academy of Actuaries, Washington, DC.......................    11
        Prepared statement of....................................    14

Additional materials supplied:
    Alpha-1 Association and Alpha-1 Foundation, statement 
      submitted for the record...................................    67
    American Academy of Family Physicians, statement submitted 
      for the record.............................................    69
    American Academy of Pediatrics, statement submitted for the 
      record.....................................................    65
    American Association for the Advancement of Science, letter 
      submitted for the record...................................    68
    American Cancer Society, statement submitted for the record..    84
    American Osteopathic Association, statement submitted for the 
      record.....................................................    83
    American Psychiatric Association, statement submitted for the 
      record.....................................................    83
    American Society of Human Genetics, statement submitted for 
      the record.................................................    82
    Association of Women's Health, Obstetric and Neonatal Nurses, 
      statement submitted for the record.........................    81
    Catholic Health Association, statement submitted for the 
      record.....................................................    94
    CARES Foundation, Inc., letter submitted for the record......    64
    Coalition for Genetic Fairness, statement submitted for the 
      record.....................................................    96
    Digestive Disease National Coalition, statement submitted for 
      the record.................................................    65
    FORCE, statement submitted for the record....................    81
    Genetic Alliance, statement submitted for the record.........    69
    Gingrich, Hon. Newt, Former Speaker, U.S. House of 
      Representatives, statement submitted for the record........    86
    Gregg, Hon. Judd, a U.S. Senator from the State of New 
      Hampshire, statement submitted for the record..............    61
    Huntington's Disease Society of America, statement submitted 
      for the record.............................................    94
    National Breast Cancer Coalition, statement submitted for the 
      record.....................................................    72
    National Council on Disability, statement submitted for the 
      record.....................................................    73
    National Marfan Foundation, letter submitted for the record..    68
    National Workrights Institute, statement submitted for the 
      record.....................................................    71
    Ovarian Cancer National Alliance, statement submitted for the 
      record.....................................................    93
    Slaughter, Hon. Louise McIntosh, a Representative in Congress 
      from the State of New York, statement submitted for the 
      record.....................................................    87
    Society for Women's Health Research, letter submitted for the 
      record.....................................................    62
    The Arc of the United States, statement submitted for the 
      record.....................................................    66
    UJA-Federation of New York, Women's Public Policy Task Force, 
      statement submitted for the record.........................    62
    United Cerebral Palsy, statement submitted for the record....    64
    United Spinal Association, statement submitted for the record    95

 
GENETIC NON-DISCRIMINATION: EXAMINING THE IMPLICATIONS FOR WORKERS AND 
                               EMPLOYERS

                              ----------                              


                        Thursday, July 22, 2004

                     U.S. House of Representatives

               Subcommittee on Employer-Employee Relations

                Committee on Education and the Workforce

                             Washington, DC

                              ----------                              

    The Subcommittee met, pursuant to notice, at 10:30 a.m., in 
room 2181, Rayburn House Office Building, Hon. Sam Johnson 
[Chairman of the Subcommittee] presiding.
    Present: Representatives Johnson, Wilson, Kline, Carter, 
Andrews, Payne, McCarthy, Kildee, Holt, and Grijalva.
    Staff present: Kevin Frank, Professional Staff Member; Aron 
Griffin, Professional Staff Member; Richard Hoar, Staff 
Assistant; Donald McIntosh, Staff Assistant; Jim Paretti, 
Workforce Policy Counsel; Deborah L. Samantar, Committee Clerk/
Intern Coordinator; Jo-Marie St. Martin, General Counsel; Jody 
Calemine, Minority Counsel, Employer-Employee Relations; Margo 
Hennigan, Minority Legislative Assistant/Labor; and Peter 
Rutledge, Minority Senior Legislative Associate/Labor.
    Chairman Johnson. Good morning. A quorum being present, the 
Subcommittee on Employer and Employee Relations of the 
Committee on Education and the Workforce will come to order. We 
are holding this hearing today to hear testimony on Genetic 
Non-Discrimination: Examining the Implications for Workers and 
Employers. Under Committee Rule 12(b), opening statements are 
limited to the Chairman and the Ranking Minority Member of the 
Subcommittee. Therefore, if other members have statements, they 
will be included in the hearing record.
    With that, I ask unanimous consent for the hearing record 
to remain open for 14 days to allow members' statements and 
other extraneous material referenced during the hearing to be 
submitted in the official hearing record. Without objection, so 
ordered.

   STATEMENT OF HON. SAM JOHNSON, CHAIRMAN, SUBCOMMITTEE ON 
  EMPLOYER-EMPLOYEE RELATIONS, COMMITTEE ON EDUCATION AND THE 
                           WORKFORCE

    Good morning. I want to welcome you all, and especially Mr. 
Andrews, our Ranking Member, and my other colleagues. When the 
NIH and Department of Energy announced they had completed a 
rough map of the human genome in 2000, it opened the door to a 
new era of research. The dream of detecting diseases early on, 
accurately treating them with minimal side effects, if not 
preventing them entirely, seemed within reach. And indeed, we 
move closer to that reality every day.
    With this unprecedented potential for discovery, however, 
comes an equally weighty challenge for public policymakers. The 
possibility of unjust use of genetic information about 
individuals and their families must be addressed.
    Discrimination against a potential employee because they 
may get cancer someday is not acceptable. Employment decisions 
should be based on an individual's qualifications and ability 
to perform a job, not on the basis of factors, genetic or 
otherwise, that have no bearing on job performance.
    On the flip side, if in an effort to prevent that sort of 
discrimination we define genetic information too broadly, it 
could greatly upset some insurance markets, resulting in an 
adverse selection.
    The government has taken some measures to tackle this issue 
by expanding the Americans with Disabilities Act to include 
those that are subject to discrimination on the basis of 
genetic information in relation to illness, disease or other 
disorders. Additionally, the Health Insurance Portability and 
Accountability Act, lovingly referred to as HIPPA, prohibited 
group health plans from using genetic information to establish 
rules for eligibility.
    In addition, more than half of the states have enacted 
their own laws that further restrict the use of genetic 
information in health insurance underwriting and employment 
decisions. As this Congress continues to consider further 
legislation, it's vital that we move only after careful 
deliberation. We need to know and understand the effects of 
current law before we attempt to take further steps, so as not 
to be surprised by any unintended consequences of our work to 
provide the right balance of privacy for Americans.
    In short, these are tough issues that have no easy answers, 
and we appreciate you all being here today to give us a more 
detailed backdrop for -discussion, your latest research and to 
answer any questions if you can.
    I now yield to the distinguished Ranking Minority Member of 
the Subcommittee, Mr. Rob Andrews, for whatever opening 
statement you wish to make, sir.
    [The prepared statement of Chairman Johnson follows:]

   Statement of Hon. Sam Johnson, Chairman, Subcommittee on Employer-
      Employee Relations, Committee on Education and the Workforce

    Good morning. Let me extend a warm welcome to all of you, to the 
ranking member, Mr. Andrews, and to my other colleagues.
    When the NIH and Department of Energy announced that they had 
completed a rough ``map'' of the human genome in 2000, it opened the 
door to a new era of research. The dream of detecting diseases early 
on, accurately treating them with minimal side-effects if not 
preventing them entirely seemed within reach, and indeed we move closer 
to that reality every day.
    With this unprecedented potential for discovery, however, comes an 
equality weighty challenge for public policy makers. The possibility of 
unjust use of genetic information about individuals and their families 
must be addressed. Discrimination against a potential employee because 
they MAY get cancer some day is not acceptable. Employment decisions 
should be based on an individual's qualifications and ability to 
perform a job, not on the basis of factors, genetic or otherwise, that 
have no bearing on job performance.
    On the flip side, if--in an effort to prevent that sort of 
discrimination--we define ``genetic information'' too broadly, it could 
greatly upset some insurance markets, resulting in adverse selection.
    The government has taken some measures to tackle this issue by 
expanding the Americans with Disabilities Act to include those that are 
subject to discrimination on the basis of genetic information relation 
to illness, disease or other disorders. Additionally, the Health 
Insurance Portability and Accountability Act (lovingly referred to as 
HIPAA) prohibited group health plans from using genetic information to 
establish rules for eligibility.
    In addition, more than half of the states have enacted their own 
laws that further restrict the use of genetic information in health 
insurance underwriting and employment decisions.
    As this Congress continues to consider further legislation, it is 
vital that we move only after careful deliberation. We need to know and 
understand the affects of current law before we attempt to take further 
steps, so as not to be surprised by any unintended consequences of our 
work to provide the right balance of privacy and for Americans.
    In short, these are tough issues that have no easy answers. We 
appreciate you being here today to give us a more detailed backdrop for 
discussion, your latest research and to answer any questions you can.
                                 ______
                                 

     STATEMENT OF HON. ROBERT E. ANDREWS, RANKING MEMBER, 
   SUBCOMMITTEE ON EMPLOYER-EMPLOYEE RELATIONS, COMMITTEE ON 
                  EDUCATION AND THE WORKFORCE

    Mr. Andrews. Good morning. Good morning, Mr. Chairman. 
Thank you for your courtesies, and welcome, ladies and 
gentlemen. We look forward to hearing from you this morning.
    We're interested in this subject, and we're here this 
morning because of people like a young woman named Kim who was 
a social worker at a human services agency. One day she went to 
a workshop for her staff about caring for people with chronic 
illnesses. She mentioned at the workshop that she had been the 
primary caretaker for her mother, who had died of Huntington's 
Disease. It appears that because of her family history, this 
young woman, Kim, had a 50 percent chance of developing the 
disease herself.
    Kim had always received outstanding performance reviews as 
a great employee of her agency. One week later, after 
disclosing casually in the workshop that she had a family 
history of Huntington's Disease, Kim was fired.
    At best under present law--at best--it is ambiguous as to 
whether Kim is protected by the employment discrimination laws 
of our country. She should be. And if in fact the reason for 
her dismissal was her genetic predisposition for a disease, she 
should be protected by the laws of this country.
    The purpose of this hearing today is to figure out exactly 
how to do that. This is one of the rare issues in the field of 
employment law where there is, at least on the surface, very 
broad agreement. One voice in this debate said this: ``Genetic 
discrimination is unfair to workers and their families. It is 
unjustified. Among other reasons, because it involves little 
more than medical speculation. A genetic predisposition toward 
cancer or heart disease does not mean the condition will 
develop. To deny employment or insurance to a healthy person 
based only on a predisposition violates our country's belief in 
equal treatment and individual merit.''
    I could not have said it better myself. These words were 
not spoken by me. They were spoken by President George W. Bush.
    This is an issue on which we should reach prompt agreement. 
There are many ways that we can approach this problem, and I 
would hope that the hearing this morning will explore the 
assets and liabilities of those various ways. But our goal 
needs to be to move as the Senate has moved very expeditiously 
in a nearly unanimous vote toward legislation--in fact, it was 
a unanimous vote of those present--toward legislation that will 
prohibit discrimination in hiring, promotion, employment 
status, legislation that will protect the rights of people to 
be free from invasive testing with respect to their genetic 
status. This is what we need to do.
    If a person walks into a hiring office this morning and the 
human resources director says we're not going to hire you 
because we're not hiring dark-skinned people or women or 
Catholics, if an H.R. director says that this morning, they've 
violated the law. And I think the law should be no less 
profound if a person walks in and their medical history shows 
that they have a predisposition toward leukemia or heart 
disease. It's an immutable characteristic.
    The point of employment discrimination law for decades in 
this country, really longer than that if one looks at the 
constitutional law, is that people should not be judged on 
their immutable personal characteristics. They should be 
viewed, as the President stated, they should be viewed on the 
merit of their performance in the job. We should be judged by 
who we are, not by what our genetic makeup does to the color of 
our skin or our gender or our health care status.
    I think it's very important that we move quickly toward a 
legislative resolution of this problem. I thank the Chairman 
for holding the hearing, and I look forward to working with him 
and his good offices to achieve a level of consensus as the 
Senate did to get this on the President's desk and outlaw this 
practice.
    Thank you very much.
    Chairman Johnson. Thank you, Mr. Andrews. We've got a very 
distinguished panel of witnesses before us today, and I want to 
thank you all for coming. Dr. Kathy Hudson is the Director and 
founder of The Genetics and Public Policy Center and an 
associate professor in the Berman Bioethics Institute and 
Institute of Genetic Medicine, Department of Pediatrics, at 
Johns Hopkins University.
    Before founding the Genetics and Public Policy Center, Dr. 
Hudson was the assistant director of the National Human Genome 
Research Institute. That's an acronym I haven't seen. How do 
you pronounce it?
    Dr. Hudson. It's not possible.
    Chairman Johnson. NHGRI. Responsible for communications, 
legislation, planning and education activities.
    Mr. Tom Wildsmith is currently a consultant in the Hayes 
Group's Arlington, Virginia office. Mr. Wildsmith has 21 years 
of experience dealing with all aspects of health insurance 
policy and financing, including 12 years operational experience 
with a commercial carrier, 9 years advocacy experience with a 
major health insurance trade organization.
    Dr. Jane Massey Licata, a biotechnology patent lawyer 
representing universities, biotechnology companies, and major 
pharmaceutical companies, Dr. Licata has been involved in the 
filing of numerous patent applications concerning diagnostics 
and therapeutics which rely upon genetic information and human 
genes, and you've been here before. We welcome you back.
    Mr. Lawrence Lorber, a partner in the Washington, D.C. 
office of Proskauer Rose, is an employment law practitioner who 
counsels and represents employers in connection with all 
aspects of labor and employment law. Mr. Lorber was formerly 
the Deputy Assistant Secretary of Labor and director in the 
Office of Federal Contract Compliance Programs during the Ford 
Administration.
    Before the witnesses begin their testimony, I want to 
remind members we will be asking questions after the entire 
panel has testified. In addition, the Committee Rule 2 imposes 
a 5-minute limit on all questions, and you've got lights down 
there which were used for he and I, and if you see the yellow 
light come on, we'd like you to try to tie it up and close it 
out.
    And I'll now recognize Dr. Hudson as the first witness, and 
you may begin your testimony.

 STATEMENT OF KATHY HUDSON, DIRECTOR, THE GENETICS AND PUBLIC 
    POLICY CENTER, JOHNS HOPKINS UNIVERSITY, WASHINGTON, DC

    Dr. Hudson. Thank you, Mr. Chairman, Members of the 
Committee. Thank you for inviting me to appear before you, and 
thank you for your consideration of this important issue.
    My name is Kathy Hudson. I'm the director of the Genetics 
and Public Policy Center at Johns Hopkins University. The 
Center was created in 2002 by a grant from the Pew Charitable 
Trusts, and our mission is to provide information and analysis 
on genetic technologies and genetic policies for the public, 
the media and policymakers.
    In my current position, and in my former position at the 
Human Genome Project, I've had the pleasure of working with 
both Republican and Democratic staff to help craft genetic 
discrimination legislation. I'd ask that my written testimony 
be made a part of the record, and I'll proceed to make three 
points about the promise of genetic medicine.
    Chairman Johnson. We'll do that for all of you.
    Dr. Hudson. Thank you.
    Chairman Johnson. If you want to submit them for the 
record.
    Dr. Hudson. The threats to realizing that promise, and the 
need for public policy protections. Last year marked the 
completion of the Human Genome Project, a historic 
international effort to decipher letter by DNA letter the 
entire sequence of all human genes. Genes are simply 
instructions, instructions for the human body to develop and 
function normally, but a misspelling in those instructions can 
cause disease or increase the risk of disease.
    With the human genome sequence in hand, scientists can 
identify quickly DNA misspellings associated with disease, and 
it's relatively straightforward then to develop a genetic test.
    Genetic tests provide information, information that can 
provide a diagnosis and guide treatment decisions, prognostic 
information about the future course of a disease, and 
probabalistic information about the future risk of developing a 
disease.
    Today there are over a thousand different genetic tests 
available, and that number is increasing steeply. They range 
from tests for fatal and untreatable diseases such as 
Huntington's to tests for mutations that detect a risk for 
future disease such as breast cancer.
    And not only is the number of tests increasing, but the 
technology for testing is getting ever more powerful. It used 
to be that a genetic test looked for one DNA misspelling at a 
time. With new gene chip technology, we can look at hundreds, 
even thousands of DNA misspellings in a single test.
    As we move ahead to integrate genetics into mainstream 
medicine, we need to make sure that public policy keeps pace. 
Protections must be in place to assure people that the results 
of their genetic tests will not be used against them. There 
have been cases of genetic discrimination and breaches of 
genetic privacy. Workers at Burlington Northern Santa Fe 
Railroad were subjected to surreptitious genetic testing to 
determine if they had a supposed genetic basis for work-related 
carpal tunnel syndrome.
    More recently, Heidi Williams has shared the story of how 
her two young children were denied health insurance even though 
they were only carriers of a recessive genetic disease and 
would not themselves become ill.
    Should a person's job be dependent on whether they may or 
may not develop a disease at some point in the future, or 
should the ability to land a keep a job be based on whether the 
person can do the job today?
    A number of steps, as the Chairman mentioned, have been 
taken to put limited protections in place. HIPPA includes some 
restrictions on the use of health-related information and 
explicitly includes genetic information. The privacy 
regulations afford the same privacy protection for genetic 
information as other health-related information, and the EEOC 
has issued guidance that genetic information should be 
protected under the Americans with Disabilities Act, though the 
extent of those protections remains largely untested and 
unclear.
    As the Chairman noted, a key challenge in drafting genetic 
discrimination legislation is getting the definitions right. 
The key definitions are genetic tests and genetic information. 
Definitions that are inexact will undermine an otherwise well-
intentioned effort. In crafting a definition that is neither 
too broad nor too narrow, it's also important to ensure that 
the definition is not rooted in genetic testing technologies of 
the present time that will rapidly become obsolete. So the 
definitions need to be able to accommodate new innovations in 
genetics and genetic testing.
    Finally, I want to share with you results from new research 
conducted by the Genetics and Public Policy Center to look at 
what the public knows, thinks, and feels about genetic testing. 
We completed a very large survey in April and found that 
Americans are generally very optimistic about the future of 
genetic testing and its potential for improving human health, 
but they are also very concerned about who is going to have 
access to these test results. An overwhelming majority, 92 
percent, oppose employers having access to genetic information. 
Similarly, 80 percent oppose health insurance companies having 
access to that information. Opposition is growing since we 
asked an identical question in 2002.
    In conclusion, the need for protections against genetic 
discrimination grows with every new test developed and with 
every new patient who decides to forego or delay genetic 
testing because of their concerns about genetic discrimination.
    I am confident that as you chart a path forward, you will 
be able to meet the needs of scientists, health care providers, 
insurers, employers, and most importantly, of patients.
    Thank you.
    [The prepared statement of Dr. Hudson follows:]

Statement of Dr. Kathy Hudson, Director, The Genetics and Public Policy 
            Center, Johns Hopkins University, Washington, DC

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                                ------                                

    Chairman Johnson. Thank you, Dr. Hudson.
    Mr. Wildsmith, you may begin.

  STATEMENT OF THOMAS F. WILDSMITH, CHAIRMAN, GENETIC TESTING 
   TASK FORCE, AMERICAN ACADEMY OF ACTUARIES, WASHINGTON, DC

    Mr. Wildsmith. Chairman Johnson, Ranking Member Andrews, 
and distinguished Members of the Committee, I thank you for 
this opportunity to testify on behalf of the American Academy 
of Actuaries. My name is Tom Wildsmith, and I currently serve 
as the vice chairperson of the Academy's Federal Health Issues 
Committee.
    I've also served as the chairperson of the Academy's Task 
Force on Genetic Testing in Health Insurance. The Academy is a 
nonpartisan public health policy organization for actuaries of 
all specialties.
    Scientific understanding of human genetics is advancing 
rapidly, and the technology continues to evolve. It's difficult 
to predict the impact this technology will ultimately have on 
the health insurance system. There are several key factors to 
consider in the public policy debate over the proper regulation 
of genetic information, especially with respect to health 
insurance.
    First, basing premiums and eligibility for coverage on a 
specific person's own health is a characteristic of the 
voluntary individual health insurance market, not the employer-
sponsored group insurance market. Thus, while possible future 
use of genetic information for medical underwriting is a 
potentially significant issue in the individual medical expense 
insurance market, it's not a significant concern in the group 
insurance market.
    Second, medical expense coverage is unique, because beyond 
the questions related to the use of genetic information, it 
involves the question of whether the direct cost of genetic 
testing and treatment will be covered.
    Third, innovative disease management and prevention 
programs depend on the ability to identify patients and high 
risk individuals for appropriate interventions. It's important 
that rules governing the use of genetic information not hamper 
the ability of such programs to improve care.
    Finally, all personal health information is, as it should 
be, protected. Applying special rules to genetic information 
would increase the complexity of an already quite complicated 
health care system. I'd like to discuss each of these in turn.
    Information on the health status of individual program 
participants is not used to determine eligibility for 
participation in employer-sponsored health insurance coverage, 
which covers nine out of ten privately insured Americans. 
Private group and individual health insurers do not currently 
require applicants for insurance to undergo genetic testing or 
use genetic testing to limit coverage for preexisting 
conditions.
    Of course, the debate is really over the future. The impact 
of genetic information on the health insurance system will 
change over time as the technology develops and may often be 
overshadowed by broader societal concerns about the meaning and 
significance of the information.
    Employers will have to decide whether or not to pay for new 
genetic tests and treatments. It's unclear whether genetic 
technology will increase or decrease overall lifetime spending 
on medical care, and what the timing of those changes may be. 
We expect genetic tests that aid in the diagnosis of disease 
and genetic treatments for disease to be gradually recognized 
and covered by medical expense plans. Unless these new tests 
and treatments produce an offsetting reduction in other medical 
expenses, they may produce an overall increase medical care 
cost. As the use of genetic technology becomes routine, the 
question of how to pay for it will become more important.
    Employers are increasingly turning to a variety of targeted 
programs to prevent the development of disease in high risk 
individuals and to manage its progression in those who are 
already ill. To be successful, all of these programs depend on 
information. As we attempt to ensure that personal health 
information is not used against employees, it is important that 
we not inadvertently preclude its beneficial use on their 
behalf.
    There is broad agreement that patients' privacy must be 
protected and the confidentiality of sensitive health 
information must be secured. Underwriting and pricing for group 
insurance has historically focused on the overall makeup of the 
eligible group, rather than on the health of any particular 
individual. And HIPPA prohibits employers from using health 
status to deny coverage to an employee or to make an employee 
pay more than a coworker.
    Genetic information is subject to the same confidentiality 
rules as other forms of health information. Separate rules 
governing genetic information could increase complexity in a 
system that's already quite complicated.
    I would also note that the definitions in the first genetic 
information legislation to be enacted would likely set an 
important precedent for the future. As genetic science 
advances, additional legislation will be needed to address 
future issues that we can't predict in advance. Legislation in 
this area should be drafted carefully and try and capture what 
is unique about the newly emerging genetic technologies.
    Again, I thank you for the opportunity to testify on behalf 
of the Academy.
    [The prepared statement of Mr. Wildsmith follows:]

Statement of Thomas F. Wildsmith, Chairman, Genetic Testing Taskforce, 
             American Academy of Actuaries, Washington, DC

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                                ------                                

    Chairman Johnson. Thank you, Mr. Wildsmith. We appreciate 
your comments.
    Dr. Licata, you may proceed.

STATEMENT OF DR. JANE MASSEY LICATA, PARTNER, LICATA & TYRRELL 
                       P.C., MARLTON, NJ

    Dr. Licata. Good morning. When the Federal Government first 
began really trying to address the issue of genetic privacy and 
nondiscrimination it was around 1995, and at that time, I was 
pregnant with my youngest child. In September of 2001, I came 
before this Committee on his very first day of kindergarten, 
and was slightly late, and thank you for your indulgence. And 
at that time, we were beginning to really take a serious attack 
on the issue, figuring out how to create a balance that fairly 
allocated the risks and obligations between all the players in 
this very complex situation.
    And here we are today, a few years later. He's getting 
ready to start the third grade in a few weeks, and some things 
have changed, and we've progressed, and we actually have a much 
more complex proposal before us, but it actually is very well 
crafted and very well balanced. So I would just very quickly 
like to talk about what the risks and obligations that we need 
to address are, and how the--some of the suggestions that are 
currently before us that have been very well stated in the 
Senate proposal, could be considered by this Committee and 
hopefully the House.
    We've talked about HIPPA and all the wonderful things that 
HIPPA does. It's a very important legislation. The Act has done 
a lot for Americans, but it does not prevent insurers from 
collecting genetic information or limit the disclosure of 
genetic information about individuals to insurers, and it does 
not prevent insurers from requiring applicants to undergo 
genetic testing.
    We have the ADA. And although the law is a very important 
law and we have guidance, it does not explicitly address 
genetic information in all cases or deal with unaffected 
carriers of a disease who may never get the disease themselves, 
individuals with late onset genetic disorders who may be 
identified through genetic testing as being at risk of 
developing a disease, or others identified through family 
history as being at risk for developing the disease. It does 
not protect workers from requirements or requests to provide 
genetic information to their employers.
    And we also have Title VII of the Civil Rights Act, which 
could--and I'm a law professor, so I'm always looking for good 
arguments--provide a basis that genetic discrimination based on 
racially or ethnically linked genetic disorders constitutes 
unlawful race or ethnicity discrimination. But there's only 
really a few markers where that would be relevant. The two that 
have actually been addressed in most stages of legislation are 
Tay-Sachs and sickle cell anemia.
    Forty-one states have actually enacted some sort of 
legislation on genetic discrimination in health insurance, and 
31 have enacted legislation on genetic discrimination in the 
workplace. So we've come a long way. there's been good 
progress. There's been a great public debate.
    But we're at a critical point now where we need to create a 
basis for all the players in the market. When I speak of all 
the players, I'm talking about the individuals who clearly have 
a privacy interest to protect themselves and their families; 
the researchers, who want to continue this important research 
who need to recruit subjects and be able to have as much 
information as possible to really get the right answer as to 
the relevance of the marker and the correlation to a particular 
disease or condition.
    We need to talk about business, and not just the people 
that are insuring through self-insurance and providing this as 
a benefit to their employees, but the companies that need to 
get investors, particularly in the biotechnology and medical 
industries where people are very concerned about this as an 
issue because it creates unpredictability and risk.
    We're talking about unpredictability in a genetic marker 
and how you interpret it; it's even worse if you're a 
biotechnology company and you're trying to raise money, and the 
thought of whether if you even could come up with a good 
genetic diagnostic or a good genetic therapy, how that would 
play out in the marketplace, given people's fears that they're 
afraid of what is going to happen to the information once it's 
created, because you're opening literally a Pandora's box.
    And we're also looking at the broader economy. OK, we're 
looking at the issue of the cost to the employer and the cost 
in the workplace of protecting this information. But there's a 
greater cost in the overall economy for not taking the 
opportunities for the best medical care, for not allowing 
people to get the information and use the information to 
preserve their health and to be able to actually maybe even 
reduce health care costs overall, and also basically to be able 
to compete in a worldwide economy where we are the leaders 
right now in genetic research.
    So asking to create a basis where we really have a fair 
apportionment of risk and also responsibility is what the bill 
that we're currently considering is all about. We're looking at 
what is the job of the employer and what is the rights of the 
individual. And the perspective on the individual is terrific, 
because we are giving the autonomy to the individual to give 
the consent as to how their information is used, and we're 
putting the responsibility on the company to protect that 
information and preserve the public trust. Thank you.
    [The prepared statement of Dr. Licata follows:]

  Statement of Dr. Jane Massey Licata, Partner, Licata & Tyrell P.C., 
                              Marlton, NJ

    With the completion of the first map of the human genome, we now 
have a basis for determining our unique genetic makeup and probable 
medical future and to permit personal diagnostics and therapeutics to 
be created for us. This is no longer the stuff of science fiction. 
Everyday new genetic markers are identified and correlated with human 
biology and disease. The future of medicine lies in genomics. 
Worldwide, university and pharmaceutical company researchers alike are 
mining databases of genetic information and rapidly identifying new 
drug targets, diagnostic markers and creating a basis for novel 
therapies. Tests designed to determine the presence or version of genes 
that cause diseases or conditions carry with them the most intimate 
details of our biological past and future as well as a devastating 
potential for discrimination. Analysis of our genetic material also 
provides information about our parents, siblings and children which 
impacts not only on ourselves but on family privacy. The potential for 
misunderstanding or misuse of this information is so great, however, 
that it is essential that we establish a national policy for the 
protection of an individual's privacy interest in their genetic 
information.
    The Genetic Information Non-discrimination Act is an important and 
timely legislative initiative to prohibit health insurance and 
employment discrimination against individuals and their family members 
on the basis of predictive genetic information or genetic services. 
Predictive genetic information is information about an individual's 
genetic tests (i.e., the analysis of human DNA, RNA, chromosomes, 
proteins, and certain metabolites in order to detect genotypes, 
mutations, or chromosomal changes); information about genetic tests of 
family members; or information about the occurrence of a disease or 
disorder in family members. Information about the sex or age of the 
individual, information about chemical, blood, or urine analysis of the 
individual, unless these analysis are genetic tests, and information 
about physical exams and other information relevant to determining the 
current health status of the individual are specifically excluded from 
the definition of predictive genetic information. Genetic services are 
health services, including genetic tests, provided to obtain, assess, 
or interpret genetic information for diagnostic and therapeutic 
purposes, and for genetic education and counseling.
    An insurer may not deny eligibility or adjust premium or 
contribution rates for a group on the basis of predictive genetic 
information or information about a request for or receipt of genetic 
services. An insurer may also not request or require genetic testing. 
Further, the insurer may not request, require, collect or purchase such 
predictive genetic information. The insurer may also not disclose 
predictive genetic information or a request for genetic services; 
disclosures to the Medical Information Bureau and the individuals's 
employer or plan sponsor are specifically prohibited. However, with 
respect to payments for genetic services, the insurer may request 
evidence that such services were performed (but not the results) and if 
the evidence is not provided, may deny payment. An insurer may also 
request that an individual provide predictive genetic information so 
long as such information is used solely for the payment of a claim and 
limited to information that is directly related to and necessary for 
the payment of the claim (i.e. the claim would otherwise be denied). 
Disclosure is limited to individuals within the plan who need access to 
the information for payment of the claim.
    Prior, knowing, voluntary, written authorization for the collection 
or disclosure of predictive genetic information is provided for. 
Disclosures between health care providers for the purpose of providing 
treatment are exempted.
    Civil actions for legal and equitable relief including civil 
attorney fees and the costs of expert witnesses are provided for. Civil 
penalties, payable to the United States Treasury, are also provided 
for. Further, it is provided that these provisions shall not be 
construed to supersede any State law provision that more completely 
protects confidentiality or privacy or protects against discrimination 
with respect to such information.
    Further, employers, employment agencies and labor organizations are 
prohibited to fail or refuse to hire, discharge or otherwise 
discriminate on the basis of predictive genetic information. Employees 
may also not be classified on the basis of predictive genetic 
information or a request for genetic services. Employers may not 
request, require, collect or purchase predictive genetic information 
about employees for genetic monitoring without prior, knowing, 
voluntary and written authorization by the employee and without 
informing the employee of the monitoring results. Genetic monitoring is 
the periodic examination of employees to evaluate changes in their 
genetic material (e.g. chromosomal damage or evidence of increased 
occurrence of mutations) that may have developed during the course of 
employment due to exposure to toxic substances in the workplace in 
order to deal with adverse environmental exposures in the workplace. 
Any monitoring must conform to OSHA or FMSHA requirements. Further, the 
results of the monitoring may not disclose the identity of an employee. 
Any predictive information about an employee must be treated or 
maintained as part of the employee's confidential medical records. A 
Federal or State court may award any appropriate legal or equitable 
remedy which may include payment of attorney's fees and costs, 
including the costs of experts. The EEOC may also enforce.
    This bill is a well considered proposal. It addresses some of the 
most significant privacy and nondiscrimination issues in a thoughtful 
and balanced manner.
    Many genetic marker are not conclusively diagnostic but rather may 
indicate a predisposition to a disease or condition or may presently be 
believed to have a correlation with a disease or condition. In such 
cases it would be especially troublesome if the information were relied 
upon to make employment or insurance decisions. However, there are well 
established genetic markers which can be diagnostic. It is therefore 
important that the definitions of genetic information and information 
relevant to determining the current health status of an individual not 
allow for inadvertent access to some genetic information or test 
results. There is also an exception concerning sharing of information 
between health care providers for treatment. Again, I would suggest 
that health care providers are accustomed to dealing with sensitive, 
confidential information, for example HIV status, and accordingly a 
blanket exception is not required. The individual's prior written 
consent to make the information available between health care providers 
should not be an undue burden and helps identify the information as 
sensitive and confidential. Further, there is an exception for 
information for payment of a claim. This provision places individuals 
in the position of paying for the genetic test themselves or risking 
the disclosure. While there are provisions that restrict the scope of 
the disclosure and to whom the information would be disclosed, I would 
suggest that the results never be disclosed an insurer or employer. I 
would also suggest that there be clarification as to what would be 
sufficient evidence that the services were performed, i.e. a receipt 
from a licensed laboratory or health care professional that a genetic 
test was performed should be sufficient.
    Unfortunately it is those seeking individual health insurance 
protection who may be at the greatest risk for discrimination. While 
there are provisions that cover individual policies in some instances, 
individuals require the same protections as group participants. Also, 
while there are provisions for civil suits and administrative actions, 
I would suggest that there should be significant penalties for any 
knowing violation by an insurer or employer. Under the current scheme, 
the employee or insured, who may not have reasonable access to legal 
representation, may not be able to effectively protect their privacy 
interests. I would therefore suggest the Government take a proactive 
role and that there be substantial civil penalties provided for in the 
event there is any violation. Clearly, this is provided for to some 
extent under the proposed legislation, however, strengthening the role 
for government enforcement could be helpful.
    While some states, like my state, New Jersey, have enacted genetic 
privacy acts, I believe it is essential to establish a consistent, 
national policy to protect against genetic discrimination in employment 
and insurance and to protect the privacy of this most sensitive and 
personal information. These issues cross state boundaries and affect 
all of our citizens. New Jersey's Genetic Privacy Act which was enacted 
in 1996 declared that genetic information is personal information that 
should not be collected, retained or disclosed without the individual's 
authorization. The Act prohibits discrimination by employers against 
employees carrying genetic markers of diseases or behavioral traits. It 
is unlawful for an employer to refuse to hire or employ, or to 
discharge or require to retire, an employee because of the employee's 
genetic information, or atypical hereditary cellular or blood trait, or 
because the employee refused to submit to a genetic test or make 
available the results of a genetic test to the employer. It also 
prohibits the use of genetic information in the fixing of rates or 
withholding of life insurance and bans the use of genetic information 
to establish the amount of insurance premiums, policy fees, or rates 
charged for a health insurance contract. The penalties for violation of 
the provisions of the Act include fines and prison terms. Actual 
damages, including economic, bodily or emotional harm proximately 
caused, may also be recovered for wanton disclosure of genetic 
information. The New Jersey Act is an important first step in 
controlling the flow of genetic information, however, Federal 
legislation is still needed.
    The time is now for the Genetic Information Nondiscrimination Act. 
This legislation addresses some of the most urgent needs in protecting 
an individual's privacy and in assuring access to genetic testing and 
services. Until recently, access to this type of testing was limited to 
those who could afford to pay for it privately. By paying it for it 
themselves, they could also have greater assurance of confidentiality 
concerning the testing and the results. While wider acceptance of the 
need and validity of genetic testing has made insurers more comfortable 
with reimbursement for this type of service, there is a huge risk to 
the insured or employee that very sensitive information, which could 
easily be subject to misinterpretation may be widely distributed as a 
part of the insurance information system. I would suggest erring on the 
side of making such information as inaccessible as possible to third 
parties since the risk of misunderstanding or misuse is so great.
                                 ______
                                 
    Chairman Johnson. Thank you, ma'am. Appreciate your 
testimony, too, and thank you for coming back.
    Mr. Lorber, you may begin your testimony now.

STATEMENT OF LAWRENCE Z. LORBER, ESQ., PARTNER, PROSKAUER ROSE 
 LLP, WASHINGTON, DC, ON BEHALF OF THE U.S. CHAMBER OF COMMERCE

    Mr. Lorber. Thank you, Mr. Chairman and Members of the 
Committee. My name is Lawrence Lorber. I am a partner in the 
Washington office of the Proskauer Rose law firm and have 
practiced labor law in government and private practice for over 
30 years. I am here testifying on behalf of the United States 
Chamber of Commerce. We are honored to be invited to this 
extremely important hearing.
    At the Chamber, I am chairman of the Equal Employment 
Opportunity Subcommittee of the Chamber's Labor Relations 
Committee. The Chamber also serves as co-chair of the Genetics 
Information Nondiscrimination in Employment Coalition, the GINE 
coalition, which is a group of trade associations and 
professional organizations formed to address concerns about 
workplace discrimination based on employees' genetic 
information.
    I have served as a technical adviser to the coalition with 
respect to the various genetics bills introduced in the House 
and Senate. And briefly, as the Chairman noted, in my prior 
government experience, I was the Director of the Office of 
Federal Contract Compliance Programs at the Department of Labor 
and issued the first regulations under Section 503 of the 
Rehabilitation Act, which prohibited discrimination and 
required affirmative action with respect to then called 
handicapped or disability discrimination. Those regulations 
established the principle of job relatedness in the area of 
disability discrimination, and they also set the standards for 
pre- and post-offer employment medical inquiries of employees.
    And I was honored to be appointed to the first board of 
directors of the Office of Compliance, the congressional office 
which interprets and enforces the Congressional Accountability 
Act, which, as you know, applies 11 labor and employment laws, 
including the ADA, to the Congress and congressional 
instrumentalities.
    The issue before the Congress is whether a new Federal law 
regulating employer collection and use of information about an 
individual's genetic predisposition to disease or disorders is 
necessary at this time, and if so, what form should the law 
take. However, the Congress and certainly this Committee must 
be aware of a very salient fact. It must be acknowledged today 
that the workplace is already subject to extensive and complex 
statutory and regulatory oversight by Federal, state and local 
government. This has created a confusing matrix of overlapping 
laws and regulations and imposes a significant cost on our 
economy. And while in many cases providing important 
protections, also opens the door to abusive, frivolous and 
costly litigation.
    Therefore, as a matter of sound pubic policy, there ought 
to be a reluctance to add to this mass of regulation and a 
requirement that any law address a real issue which is not 
dealt with by the existing body of employment law. Therefore, I 
believe it is critical to make one salient point. There is 
simply little or no evidence of employer collection or misuse 
of genetic information in today's workplace. This is despite 
continued predictions that in the absence of new law, the fear 
of increased insurance costs, absenteeism and low productivity 
will inevitably drive vast numbers of employers to genetic 
testing of the workforce and employment discrimination or 
exclusion based upon genetic makeup.
    Well, whether it's due to the threat of liability under the 
extensive existing protections, fear of public backlash, moral 
concerns or simply a lack of interest, employer collection and 
misuse of genetic information remains largely confined to the 
pages of science fiction. As my testimony makes abundantly 
clear, the current body of Federal law, including the ADA, 
Title VII of the Civil Rights Act, HIPPA and other Federal laws 
are more than ample to deal with any misuse of genetic 
information.
    And even if there were some lapse in Federal law, 32 states 
have laws specifically prohibiting employment discrimination 
based upon management makeup. Twenty-six have laws specifically 
regulating employer acquisition and disclosure of genetic 
information, and 25 states have laws regulating the privacy of 
genetic information. Forty-nine states have laws similar to the 
ADA.
    I would like to discuss the development of the reported 
cases in these states except for one problem--there isn't any. 
In states such as California, which has, as we all well know, 
an extensive employment litigation docket, there are no 
reported cases. In New Jersey, which also has a vigorous state 
employment litigation practice, there are no cases under the 
genetic privacy law.
    Employment plaintiff lawyers are not the proverbial potted 
plants, nor are they shy about attempting to extend the 
parameters of the law. Yet there are no reported cases. If the 
states are deemed to be the laboratories for the Federal 
Government in this area, the Petri dishes have grown no 
cultures.
    Perhaps it is because there is no problem, or perhaps it is 
because there are sufficient causes of action under existing 
law to temper the enthusiasm of any employer which for whatever 
reason may wish to exclude someone because of their genetic 
makeup.
    We would also note that the EEOC, the Federal Government's 
primary agency dealing with issues of employment 
discrimination, has already taken the position that 
discrimination on the basis of genetic information violates the 
ADA, and in the one reported case, the EEO swiftly and 
effectively dealt with the issue, enjoined the practice and 
secured a multi-million-dollar settlement for the alleged 
victims.
    In conclusion, as the representative of employers and as a 
leader in the effort to increase health insurance coverage, the 
Chamber of Commerce is excited about the potential of genetic 
science leading to more effective treatments and early 
interventions. However, we just as strongly believe that an 
additional broad workplace regulatory scheme is unnecessary at 
this time. Science is not assisted by overregulation and 
frivolous litigation.
    We appreciate the opportunity to highlight the extensive 
existing protections against genetic discrimination as well as 
the complete lack of evidence that employers are engaged in the 
collection and misuse of genetic information.
    Thank you.
    [The prepared statement of Mr. Lorber follows:]

  Statement of Lawrence Z. Lorber, Esq., Partner, Proskauer Rose LLP, 
       Washington, DC, on behalf of the U.S. Chamber of Commerce

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                                ------                                

    Chairman Johnson. Thank you, sir. You know, in your written 
testimony, I think you mention two concerns that have not been 
mentioned in the past. Would you detail those a little bit 
further?
    Mr. Lorber. Well, there have been some concerns, and as 
pointed out by another member of this panel, that there may be 
a lapse in the ADA. There may be a gap in the ADA's coverage 
with respect to testing. And we don't believe that's the case 
the EEOC has taken that position, and I think that 
nevertheless, if there is such a gap, if it's identified, we 
believe the EEOC in the first instance could deal with it, and 
second, to the extent to which even after that experience is 
examined, perhaps there might be some need for limited targeted 
legislation.
    But beyond that, as I indicate in a broad discussion in the 
testimony, there are a plethora of laws to deal with it, and 
indeed, Congressman Andrews, in your instance, I believe that 
individual would have a cause of action under Section 504 of 
the Rehabilitation Act as well as the ADA if she were a public 
employee. So that I don't believe there simply is a gap that 
necessitates this very expansive legislation.
    Chairman Johnson. Could you maybe give me a hypothetical 
example about how an employer without trying to discriminate 
might inadvertently run afoul of the proposed law this coming 
out?
    Mr. Lorber. Oh sure. Well, the proposed laws, we must 
understand, don't only deal with genetic testing, and that's an 
issue that's front and center. The genome studies are indeed 
studying and mapping genetic information. The proposed laws 
deal with genetic history, and indeed the proposed laws have no 
limit on the length, the extent to which genetic history or 
family history could be found.
    Indeed, it's been stated that if there were a descendant of 
the Plantagenets working in the United States today and 
somebody read one of their histories, an employer could be 
found guilty because it knew that someplace in the far distant 
past there might be a condition which might be indicative of a 
genetic marker.
    So there is no limit in the proposed legislation with 
respect to what the scope of it is. We're not talking about 
genetic testing. We're talking about family history. If an 
employer sends flowers to somebody because a parent died of a 
condition which might be indicative of a genetic marker, that 
employer could be deemed to have genetic information.
    So I think that we're looking at laws that are so broadly 
framed that there is no exclusion. And indeed, the legislation 
before the House, I might add, is the unique situation of 
having no limits on damages, no requirement to go to an 
administrative agency. This problem, which is a problem perhaps 
in the future, is dealt with more severely than the problems of 
racial discrimination, disability discrimination and gender 
discrimination in which the laws have been carefully tailored 
to strike a balance between the remedy and the harm.
    Chairman Johnson. I might add that anytime you all have a 
comment to make, we would let you do that. That's one of the 
benefits of running a Committee. Dr. Hudson, we hear the terms 
``predictive'' and ``protected'' genetic information used. Can 
you tell us about the significance of those two terms?
    Dr. Hudson. Predictive and protected. Predictive genetic 
information generally refers to when a genetic test result 
gives information that provides a probability that the 
individual will develop a disease at some point in the future. 
That information is usually based on a person will have a 50 
percent increased likelihood of developing a certain disease by 
age 60, for example. So it's imprecise information, but it's 
valuable in the health context because an individual and their 
doctor can put in place preventive measures to decrease that 
risk.
    Protected genetic information is not used in the medical 
context, but is used in the legal context and has been variably 
defined. And in fact, how that term is defined is really the 
crux of good genetic discrimination legislation. If that 
definition is too narrow, then the bill will be meaningless, 
and in fact that's the case in many states that do have genetic 
discrimination legislation. The definition is so narrow as to 
make it virtually meaningless. And in other cases, the 
definition is so broad that it includes virtually anything.
    For example, the definition of genetic information in the 
HIPAA regulations starts out with a fine definition of genetic 
information--results of genetic tests, analysis of DNA. And 
then it goes on to say it's information from medical 
examinations. Well, of course, that brings in almost the entire 
universe. So somewhere in between is a nice, precise definition 
that will work legislatively.
    Chairman Johnson. Thank you very much. Mr. Andrews, do you 
care to question?
    Mr. Andrews. I want to thank each of the witnesses for 
their efforts, outstanding testimony. I especially want to 
welcome Dr. Licata back. And I think that your remarks about 
balance are correct. I appreciate the contribution that you and 
your colleagues and the many groups that support this 
legislation made in trying to strike that balance.
    Mr. Lorber, I want to ask you some questions. I understand 
that part of your position is that existing law would deal with 
any problem that might manifest itself. Is that a fair 
statement?
    Mr. Lorber. That's correct.
    Mr. Andrews. I want to walk through the existing law as I 
understand it. The EEOC has given an interpretation or issued a 
guideline I suppose it is, that says that a genetic 
predisposition if used in a discriminatory way, violates the 
ADA, correct?
    Mr. Lorber. That's correct.
    Mr. Andrews. But the EEOC's position is not binding on the 
courts, is it?
    Mr. Lorber. Well, it's an agency interpretation. As you 
well know, in the Burlington Northern case, it acted upon and 
enforced that interpretation.
    Mr. Andrews. But the court was not compelled to accept that 
interpretation, correct?
    Mr. Lorber. It's an interpretation that was issued--I would 
think it would fall within the Chevron protections of agency 
interpretations, but then again, Mr. Congressman, the courts 
sometimes don't accept--
    Mr. Andrews. But under ADA, it doesn't flow from a 
rulemaking or from an adjudicatory proceeding, so it's not due 
any specific legal deference, other than what the courts in 
their discretion want to give it, right?
    Mr. Lorber. The EEOC guidelines have, and I would add that 
the impact of the guidelines obviously affects a charge filed 
with the EEOC. And if the charge raises those issues, the EEOC 
district office will act upon that guidelines and issue 
probable cause determination. The individual then could be 
represented by the EEOC.
    Mr. Andrews. But you don't take the position that those 
guidelines bind a court, do you?
    Mr. Lorber. Courts could--obviously, courts interpret 
regulations and guidelines as they see fit, as we well know.
    Mr. Andrews. Is that a no?
    Mr. Lorber. And they interpret statutes, as well.
    Mr. Andrews. We'll take that as a no. With respect to Title 
VII, you point to a couple of cases where there is a 
disproportionate racial or gender impact which gives rise to a 
Title VII claim. What about cases where the condition or 
disease does not give rise to such an impact? For example, my 
understanding of dementia, of Alzheimers, is that it cuts 
across racial and gender lines rather equally. So if someone 
was denied employment because they had a genetic predisposition 
toward dementia, are they protected under Title VII?
    Mr. Lorber. Well, I think they'd be protected under the 
ADA, because remember, the ADA--
    Mr. Andrews. I understand your position on ADA.
    Mr. Lorber. Well, but let me--
    Mr. Andrews. What about Title VII?
    Mr. Lorber. Let me talk about Title VII cases, and indeed 
Mr. Wildsmith must be aware of the Manhart and the Norris cases 
involving sex-based actuarial tables. And the Supreme Court 
said, regardless of what the actuarial tables may show, the 
reliance upon them to the detriment of somebody who we 
certainly don't know when they will die, violated Title VII. 
That same analogy, because the ADA brings into its ambit job-
relatedness, would apply to the ADA. So you cannot parse these 
laws.
    Mr. Andrews. I asked you about Title VII, and I asked you 
about a case where someone has a predisposition toward 
dementia, where there is to my knowledge no evidence of any 
disparate racial impact. Does that lay out a claim of violation 
in Title VII?
    Mr. Lorber. Well, it may not. But again, we're talking 
about the Congress knows a plethora of employment laws, and you 
can't parse one and not the other.
    Mr. Andrews. I didn't ask about the plethora. I asked about 
Title VII.
    Mr. Lorber. Well, lawyers deal with the plethora, and 
that's their problem.
    Mr. Andrews. I know that. But does this lay out a claim--is 
it your position that it doesn't lay out a claim under Title 
VII?
    Mr. Lorber. It depends how the employer and what the 
underlying data would show. To the extent to which, for 
example--
    Mr. Andrews. If the underlying data say that there is no 
disparate racial impact for dementia does it lay out a claim 
under Title VII?
    Mr. Lorber. If hypothetically it doesn't and there's no 
gender impact, then perhaps not. But as I said--
    Mr. Andrews. The list of state privacy protections that you 
cited, that you went through, aren't these privacy protections 
preempted by ERISA? So if someone is in an ERISA plan--
    Mr. Lorber. That's not been litigated. I don't know that 
they are, and--
    Mr. Andrews. Is it your position that it is or it isn't?
    Mr. Lorber. Well, I would suggest that it may be helpful to 
have one body of employment law and not have employers subject 
to 32 state laws and a Federal law. So if you're talking about 
preemption, if you're talking about this law preempting all of 
these state laws, and if this law is carefully tailored, and if 
we don't find employers whipsawed, then maybe there are areas 
of discussion.
    Mr. Andrews. I would never want to prejudge the position of 
any group, least of all the Chamber, but the Chamber pretty 
consistently has argued for a broad ERISA preemption, and I'd 
be surprised if the Chamber didn't argue for a rather broad 
ERISA preemption here. If it touches the concerns--
    Mr. Lorber. But would this Committee recognize preemption 
of the legislation before it with respect to all of these state 
laws?
    Mr. Andrews. I think the state laws are valid. But for 
those who favor a broad ERISA preemption, it seems to me that 
you have to draw the conclusion that state laws don't protect 
the millions of people who are in ERISA plans, do they?
    Mr. Lorber. Well, I don't believe that's--and again, that's 
an area of legislation we know about the Delta Airlines case, 
which goes one way--
    Mr. Andrews. So can we count on the Chamber to argue in 
favor of upholding these state privacy laws against an ERISA 
preemption claim?
    Mr. Lorber. If and when those are litigated, we'll have to 
see what the matter is before the court.
    Mr. Andrews. We eagerly await your position. Thank you very 
much.
    Dr. Licata. Could I interject a data point?
    Chairman Johnson. You may.
    Dr. Licata. Just in case you're interested in knowing, is 
that I've actually looked at most of these state laws, and if 
you're trying to sort of get a feel for where perhaps the House 
version and the Senate compromise version sort of would place 
you, is that there's only basically--less than the number of 
state laws I could count on one hand. I'm not sure whether it's 
four or five. I could double check for you--that would actually 
have more stringent requirements. The position that the Federal 
legislation is considering is very well balanced and has taken 
a lot of these issues into consideration, so that--most states 
in fact are much narrower and have a lot of gaps in them, so 
that if your concern is what would be the impact of preemption, 
is that right now, the Federal Government is extremely on 
target in addressing a broad base of concerns.
    Chairman Johnson. Thank you. Mr. Carter, you are recognized 
for 5 minutes.
    Mr. Carter. Thank you, Mr. Chairman. Mr. Wildsmith, on page 
2 of your testimony, you claim that basing premiums and 
eligibility coverage on specific person's own health is not a 
characteristic of the employer-sponsored group insurance 
market. Why is that?
    Mr. Wildsmith. If you think about an IBM, for instance, 
they have tens of thousands of employees. They have millions of 
dollars in medical expense each year. It's very easy to predict 
what their costs will do from year to year. Whether any 
particular employee gets sick or not is not going to move the 
number appreciably at all.
    With group insurance with any employer of any size, you're 
dealing with the aggregate cost for all of the employees and 
all of the dependents. So you look at the age, the gender 
makeup. You look at the claims from last year, and that gives 
you the information you need to predict what next year's costs 
are going to be. It's simply not cost effective to ask every 
member of the group to undergo medical testing or to pull 
medical records on them, because it's the aggregate costs that 
count.
    Mr. Carter. But you will--I used to be in county 
government, and we were self-insured.
    Mr. Wildsmith. Yes.
    Mr. Carter. And we would hear the argument as our costs 
went up, they could individually say it was the money that was 
spent by that sick person and by that sick person and by that 
sick person, and, you know, we've got these many people that 
seem to be headed for being chronically ill and this, that and 
the other. And, therefore, the price of poker is going up. But 
it's still not--they still don't look at it that it--they're 
making the argument to us as county employees, they certainly 
made that argument on an individual health basis.
    Mr. Wildsmith. If you look at the projections, what's 
generally going on is you have X million dollars in claims in 
fiscal year 2003. You're projecting them forward to 2004. If 
you have a truly catastrophic claim, a really nasty trauma case 
or a really nasty neonatal case, that will cause a blip in your 
experience, and many employers buy stop loss insurance to 
protect against that.
    But it's not generally good practice to base your pricing 
on an act of God in 1 year, because you purely don't know 
whether that's going to reoccur in the next year.
    Mr. Carter. You mentioned in your testimony that HIPPA 
already prohibits discrimination against the individual members 
of a health insurance plan on the basis of current health 
status or on the basis of some future predisposition to a 
particular disease.
    Mr. Wildsmith. Yes.
    Mr. Carter. How do these protections work?
    Mr. Wildsmith. The easiest way to think of them is to think 
about yourself as a new employee with the company and what the 
employer can or cannot do. If you meet the requirements, you're 
a full time employee, whatever it is to qualify for the medical 
benefits, when the open enrollment comes around, the employer 
cannot say, eh, you can't come in because you've got cancer or 
because your wife had cancer or because you have a genetic 
predisposition.
    The employer also can't say, well, the contribution is 40 
bucks a month for everybody else, but for you, it's 60 because 
you're getting a little older, you're a little sicker. We think 
you're going to have bad things happen. At core, those are what 
the HIPPA protections do.
    Mr. Carter. How do the HIPPA privacy regulations address 
the de-identification of medical information?
    Mr. Wildsmith. I can talk to you about how the information 
is used in pricing. I'm not an attorney, so the details of the 
privacy rules, I need to step away from.
    Mr. Carter. That's fair enough. Thank you, Mr. Chairman. I 
yield back my time.
    Chairman Johnson. Thank you, Mr. Carter. Mrs. McCarthy, do 
you care to question? You are recognized for 5 minutes.
    Mrs. McCarthy. Thank you, Mr. Chairman, and I thank the 
Committee for bringing this subject to this debate. I think 
it's extremely important.
    First, I'd like to say that I believe decisions about 
generic testing and what to do with the results should be made 
by patients and their health care providers without fear of 
negative consequences, such as an employer choosing not to hire 
them because they carry a gene for a disease. Whether or not 
this discrimination is actually happening already, I do believe 
that it is happening. But whether you believe it's happening or 
not, the fact is that people fear that it's happening or it can 
happen to them, and I think that's the part we have to really 
start to address there, and therefore will opt out not to get 
the testing done unless we in Congress take a definite stance 
against this type of discrimination.
    There's a family that I've be working with on Long Island 
who came to me because they lost their son to a disease called 
Long QT, which is a genetic disorder. After this boy's death, 
each one of the immediate family members was genetically tested 
for the disease, and it was found that some were carriers of 
the gene that caused the disease, and one child is actually 
having the disease. The child with the disease is now being 
monitored and treated, so the genetic testing in this case has 
prevented the family from possibly losing another child.
    In New York, we already have some legislative protections 
against genetic discrimination, health insurance and in the 
workplace. And yet this family still experienced concerns about 
whether they or their kids would be discriminated against once 
people knew they had these genes, and they aren't the only 
ones.
    Since I introduced my bill to help screen people with 
genetic cardiac disease, I have gotten calls from people from 
all over the country with this disorder, but also expressing to 
me their concerns about genetic discrimination. In January when 
I reintroduce this bill, because my bill is not going to go 
anywhere this year--we've just run out of time--I plan to add a 
clause with regards to the discrimination.
    About 40 other states besides New York have taken action to 
protect, but as you have mentioned, it's a web, and it is a 
web. We've looked at that.
    I guess my question to all of you would be, in the Senate 
version, which has already passed overwhelmingly, the genetic 
discrimination bill, when a health care plan or an employer 
misuses an individual's genetic information, what can a person 
do? Can you compare for me what rights the individual has in 
the same circumstances under the House version which Louise 
Slaughter has been trying to get passed for I believe over 5 
years? I'm not sure if you're even familiar with it. It's H.R. 
1910, which is a lot more in detail. And I think, Dr. Hudson, 
more to the point of where it's not too wide and it's not too 
narrow from everything that I know, and I believe she's been 
working with a lot of the groups that do the genome research 
and everything, and I have a place on Long Island, Cold Spring 
Harbor, that's doing genome research, and I'm very involved 
with them on that issue, too.
    Our world is changing tremendously because of the medical 
technology that's out there. But I have to say with that, we 
are going to have to start looking at things because, you know, 
when you do the genetic testing or if you--I'm working with Dr. 
Watson, who is doing--looking into cancer, so we can have the 
markers. And so it's going to be a new world probably within 5 
years even more advanced than what we have out there today.
    So I appreciate any insight any of you have on that.
    Dr. Hudson. Well, you're exactly right that the fear of the 
misuse of this information is very widespread. We've been doing 
town halls around the country this summer and talking to 
citizens in cities across the United States. And recurrently, 
the biggest concern that they share with us is their fear if 
they have this test results, it may be misused.
    Mr. Lorber raised the issue of, well, there's not really a 
whole lot of genetic discrimination cases being brought. But in 
those that have been brought, it has not been a normal 
American. It has been extraordinary individuals who have 
learned about this discrimination and pursued it.
    Because in these cases, the employers aren't saying, oh, 
and by the way, we're doing these genetic tests. This was 
secretive genetic testing, and the fact that it was uncovered 
at all is a fairly remarkable testament to the individuals who 
were involved in that case.
    So it is not widespread cases, but the cases that have been 
brought should reflect to us that it's not unheard of that 
these cases are happening. So I agree with you there.
    The other point I'd like to make is that even without 
widespread discrimination, the fear that citizens have is going 
with them into their doctor's office and influencing their 
decisions of whether or not to have a genetic test and whether 
or not to participate in genetic research. We know this is 
happening. It's damage now, it's damage today, it's damage that 
we can do something to prevent.
    Mrs. McCarthy. And just to follow up, I'd like to go 
backwards, because I always like to go back in history, 
especially medical history. It wasn't that long ago, 30 years 
ago, when we started discovering more and more women were 
getting breast cancer, and no one in the family would even talk 
about cancer, mainly because they felt they would be 
discriminated against.
    We got over that. We did pass laws to make sure that 
someone couldn't be discriminated against, and this is what 
we're dealing with now, because we're into a different world of 
medicine.
    Dr. Licata. If you'd like the answer to the question about 
the individual's remedies, there's actually in terms of this 
concept I'm trying to promote about if people understand, 
everybody understands the rules that we're playing under and 
what's important to each stakeholder, that you can come up with 
good solutions, is that the currently pending House version 
took a more traditional litigation mindset. So if you were 
wronged, what could you do as the employee? Well, you could go 
to court, and the court could award appropriate legal or 
equitable relief and attorney's fees, including the cost of 
expert witnesses, which you would definitely need in a case 
like this. In cases where your plan sponsor or your insurer 
violated any of the provisions. It was a very broad, general 
type term you see in Federal legislation.
    And there was provision also for civil penalties that were 
fairly modest, $50,000 for a first violation, $100,000 for 
subsequent violations, and it was paid to the government, and 
there was provisions for private right of action. So basically, 
if something happened that the law was violated, you had--you 
basically would have to be one of these extraordinary 
individuals to basically be able to go through all of this 
litigation.
    What I particularly think is a great provision is what are 
people afraid of? I'm going to lose my health insurance.
    Mrs. McCarthy. Right.
    Dr. Licata. Right? Isn't that the issue?
    Mrs. McCarthy. Yes.
    Dr. Licata. All right. What does the compromise bill do? It 
establishes additional enforcement for violations by allowing 
the participant or the beneficiary the right to benefits that 
they do under the plan without exhausting administrative 
remedies if doing so would cause irreparable harm to their 
health.
    OK. Right when you have the risk, when they need their 
doctor's counsel, when they need the health services to 
possibly even mitigate downstream health issues, they would be 
able to keep their insurance or get it back fairly quickly. 
Great remedy.
    In addition, the court can reinstate the coverage 
retroactive to the date of violation. OK. There might be a 
period where the family can suffer, but they might not be 
forced into bankruptcy over these issues. It allows the 
Department of Labor--and this is great from my standpoint too--
is I think the best way to get people to comply with the law is 
to let them know what the rules are and then say it's a 
compliance issue. Build it into your cost of doing business.
    But frankly, it's cheaper to do this than to contemplate 
litigation. What happens? You're in violation. A hundred dollar 
a day fine. What's your cap? Half a million dollars. OK, a 
business can deal with that. They can factor that in, and it 
would be stupid for them not to make a relevant plan of doing 
business that takes into consideration protection of this 
information. They do it for HIV. They do it for other very 
sensitive information. It's something businesses know how to 
do.
    So here you have a rational proposal that allows the 
business to make good decisions, allows investors to make good 
investments in the health care industry going forward for the 
next decade, gives autonomy and protection to the individual. I 
mean, what a perfect balance.
    Mrs. McCarthy. Thank you.
    Chairman Johnson. The gentlelady's time has expired. Mr. 
Payne, you're recognized for 5 minutes.
    Mr. Payne. Thank you very much. This is a very interesting 
topic. I'm sorry I missed the testimony, and I might ask a 
question that may have been covered in the testimony. But I'd 
like to ask Ms. Hudson, Dr. Hudson, the principles of any 
generic nondiscrimination bill.
    Could you just briefly articulate the principles that any 
generic nondiscrimination legislation should encompass? And 
this business about core definitions. I didn't get a chance to 
go through it, but I know that you highlighted the important of 
core definitions for any generic discrimination bill, and I 
wonder if you could comment on the existing definition, how 
many fall short in your opinion.
    Dr. Hudson. So the definition in my view of a genetic test 
should incorporate analysis of DNA, of RNA, of proteins, of 
chromosomes, and also include beyond that the genetic test of 
information from family members. And the broad definition of 
genetic information really needs to include the family medical 
history information.
    So in talking about how that information can be used, I 
think we would all agree that it would be unjust if an 
individual's employment was conditioned on the health of some 
blood relative. I think we would agree that it would be unjust 
if their employment were conditioned on whether or not they 
carried a genetic mutation that predisposed them to some 
genetic disease in the future.
    This does not restrict an employer's ability to use 
information about a person's current health that interferes 
with their ability to currently perform the essential functions 
of that job. So we're not altering the ability of employers to 
make sure that their workforce is able to do the job.
    Mr. Payne. Thank you. Yes?
    Mr. Lorber. Well, I would just point out that Dr. Hudson 
talked about blood relative. H.R. 1910 is not restricted to 
blood relatives. It is absolutely not restricted to blood 
relatives. And indeed, I think 1053 has the same infirmity. So 
that the extent to which we're looking at genetic information 
which is genetically passed down through blood relatives, the 
bills don't go beyond that, and that's one of the problems. The 
bills are expanded beyond what science seems to think is 
appropriate.
    Mr. Payne. Dr. Licata, and then we could hear from Dr. 
Hudson again.
    Dr. Licata. I think it's a really important issue, because 
my initial position when I first started thinking about this 
issue, was as a scientist. And when I looked at it as a 
scientist, I said, why would you ever consider outside of 
someone that has a genetic link? Because that's the relevant 
information.
    And it was pointed out to me something very important which 
completely altered my understanding of why the bill is crafted 
as it is, which is that we're in the employment context, OK, 
we're in the health care context for a family. If this 
information is available that someone in the family has a 
particular genetic marker, the record does not necessarily and 
probably would not reflect if that family member was adopted.
    So that what's happening is the whole family, without a 
complex explanation or actually even--revealing even more 
private information, that a child was adopted or something, you 
know, there was some relationship in a family that was not as 
it might have appeared to be.
    They're still going to have this issue of discrimination in 
the workplace, the health care issue, without explanation. What 
happens to them during that gap period? So I think that it 
makes a lot of sense to put the burden not on the individual 
but the burden on the employer, and then you can balance it 
out. But the information, it can still be explained, but the 
immediate reaction is it covers everybody without asking all of 
those underlying questions.
    Chairman Johnson. Mr. Lorber, do you care to follow up?
    Mr. Lorber. Yeah. The burden we're talking about is the 
burden of litigation. And I simply want to point that out. And 
second, to the extent to which we're talking about symptomatic 
conditions, they are covered by the ADA. To the extent we're 
talking about asymptomatic conditions, the Supreme Court in the 
Bragden case talked about an 8 percent correlation between 
carrying an HIV gene and being HIV positive. Yet they found 
that sufficient to find coverage under the ADA.
    The point we're trying to make is not that this is an issue 
which should be ignored. The point we're simply trying to make 
is that this is an issue which we believe is susceptible to the 
vast body of law today, and the extent to which we're dealing 
with a real problem, I don't know that it's sound public policy 
to pass yet another law to have another 18-month period before 
the law takes effect, which once the new law is passed, it will 
presumption that the old laws don't cover this situation, have 
yet a new body of regulations.
    This doesn't make any sense when we believe and we've 
stated in our testimony, and I think we've taken an expansive 
view, as Congressman Andrews noted, an expansive view, of what 
the ADA covers. We believe that this is the situation which 
should be protected against, but we believe that this is a 
situation which is protected against. And that's the problem 
we're dealing with.
    Do you really want yet another law on top of all the other 
laws and have some court, with all due respect, whether they'll 
adopt one regulation or another regulation. Then we're going to 
have the courts parsing or triaging among all these laws to 
determine what little niche this problem fits in. It doesn't 
make any sense. And for the employers, the problems that Dr. 
Licata are talking about are problems of litigation, and they 
are very expensive. They are a disincentive to hiring, and they 
are a disincentive to providing the basic level of benefits 
that we want employers to provide.
    Mr. Payne. Let me just--I guess reclaiming my time, I guess 
I might have about 2 minutes left since you preempted my time--
I assume you'll give me my time back. Thank you. I'm not a 
lawyer. I didn't know the rules now.
    [Laughter.]
    Mr. Payne. Let me ask Dr. Licata if you would like to just 
comment briefly on that, and then I'd like to hear from Dr. 
Hudson and then one last short question.
    Dr. Licata. And I guess the point is, is that I'm really 
concerned and what I think is the importance of this 
legislation is it is a way of managing information. It's 
information that is very precious, and it's information where 
we have to set forth a national public policy about how we're 
going to do business with this type of information, and how 
we're going to respect this information that belongs and can 
have such a huge impact on a personal interest.
    So what I suggest, and if you look at the problem, it's how 
to properly manage the information in a business context. We 
know how to do that. And it's by creating a scheme that has a 
basis of good regulations built on a good, rational law that 
allow people to know what the ground rules are. Once they know 
that, they will comply with the law so the rare case that's 
going to be litigated is not what you should be afraid of. We 
should be worried about the huge cost of doing business and the 
huge cost to our medical economy, our health care economy, if 
we don't step in and make some rational decisions now.
    Mr. Payne. Thank you very much. And Dr. Hudson? Thanks, Dr. 
Licata.
    Dr. Hudson. Thank you. I'd like to respond to Mr. Lorber's 
argument that it should be crystal clear to all of us that the 
ADA covers genetic discrimination based on predictive genetic 
information. He uses in support of that argument a Supreme 
Court case, Bragden v. Abbott. That was an HIV case. There is 
no HIV gene. There are a number of interesting correlations 
between the rationale that was used in that case. It was not a 
genetics case, and we have not tested whether or not the ADA 
does or does not cover genetic information.
    There are cases that are being brought under the ADA where 
people who have cancer are not being considered disabled under 
the ADA. The notion that somebody who is at risk of developing 
cancer would be covered under the ADA I think leaves a lot of 
uncertainty and thus the concern among the American public.
    Mr. Payne. Thank you. My time is probably--Mr. Lorber, I 
just want to ask a simple question. You could probably give 
another little response, so it's giving you an opportunity. Let 
me just ask you, does the Chamber support the predisposition, 
that genetic disposition should be a disability under the ADA?
    Mr. Lorber. We believe it is. We believe the agency has 
stated that it is.
    Mr. Payne. And therefore the Chamber would support that?
    Mr. Lorber. The agency has taken that position. And we've 
endorsed that position in the testimony.
    Mr. Payne. And they agree with the ADA?
    Mr. Lorber. That the ADA covers this issue, yes.
    Mr. Payne. OK. Thank you.
    Chairman Johnson. Thank you, Mr. Payne. If you all have 
additional comments, we would accept them in writing. Mr. 
Lorber, let me just ask you one quick question. Do you know of 
any employer that is considering--that asks people that 
question about genetic history before they hire them?
    Mr. Lorber. Mr. Chairman, absolutely not. As I said, I'm 
Chairman of the Chamber's EEO committee. We asked the Chamber 
members, we surveyed the Chamber members, does any employer--
and there are a lot of employers who are members of the 
Chamber--conduct genetic testing, as for genetic information, 
want to have genetic information--let me go beyond the 
Chairman's question. And the response was no, they don't want 
it. They don't need it. They don't know what to do with it, and 
they're afraid if they have it, they're going to be sued under 
all the laws we've talked about.
    Chairman Johnson. Thank you.
    Mr. Andrews. Mr. Chairman, if I may, I have three unanimous 
consent requests--two unanimous consent requests.
    Chairman Johnson. Go ahead.
    Mr. Andrews. One is I'd like to enter into the record a 
list of 23 national health care and advocacy organizations that 
are in support of genetic non-discrimination legislation. The 
second is, I have statements from our colleague, Congresswoman 
Slaughter, who has introduced an excellent bill, and from 
Senator Gregg, who championed the bill in the Senate. I'd ask 
that those be entered into the record.
    The final, if I could make one more--
    Chairman Johnson. Without objection, so ordered.
    Mr. Andrews. Thank you. Let's be careful when we talk about 
employers asking for information to also understand that health 
insurers may ask for information, which is where the rubber 
really meets the road.
    Mrs. McCarthy. Mr. Chairman, may I ask one question that 
I'm confused on? I know you want to leave.
    Chairman Johnson. Go ahead, Mrs. McCarthy.
    Mrs. McCarthy. I'll go down there and talk to--
    Chairman Johnson. I might add, you've had 4 minutes 
already. We'll give you one more.
    Mrs. McCarthy. Well, there's only a few of us here.
    Chairman Johnson. One for the road.
    Mrs. McCarthy. Let me understand something. Let's just say 
I go to the dentist and obviously they basically ask me for my 
medical history, has anything changed, and I say no, whatever. 
But supposing I did tell them, all right, I've just discovered 
I have this. Now when I go outside, each and every one of us 
nowadays has to sign a form that says that we are--the Privacy 
Act--that we are doing this. I'm not so concerned about my 
doctor having all the information in the world. But I also know 
if I'm going to a new insurance company, they are going to 
research my past history of health care, wherever I have been 
in the last two, three, 5 years. Now if I come up, just say, 
with something genetic and I'm going to tell my doctor that 
because I wanted him to know, you know, what I'm dealing with, 
then eventually, if I change insurance companies and another 
insurance company gets the information from my doctor, how do 
we protect our patients?
    Mr. Wildsmith. Actually, in the group market, if you get 
your coverage through an employer, they are not going to go 
back and pull your medical history.
    Mrs. McCarthy. That's actually the part I wanted to know. I 
never was clear on that issue.
    Chairman Johnson. We'll call you ``ten minute McCarthy.'' 
Thank you, ma'am.
    Listen, I want to thank the witnesses for their valuable 
time and your testimony and both the witnesses and members for 
their participation and let you know that if you have something 
to hand us in writing, we'll take it.
    If there's no further business, the Committee stands 
adjourned.
    [Whereupon, at 11:41 a.m., the Subcommittee was adjourned.]
    [Additional material submitted for the record follows:]

  Statement of Hon. Judd Gregg, a U.S. Senator from the State of New 
                  Hampshire, Submitted for the Record

    The rapid advances in the science of genetics are creating 
opportunities for all of society that must not be hindered. At the same 
time, these same advances, and the prospects for legislating in this 
area, rightly raise serious challenges and concerns that must be fully 
understood and addressed. I commend Chairmen Boehner and Johnson for 
holding this hearing to review the important implications of genetic 
non-discrimination for workers and employers.
    Last year we celebrated the 50-year anniversary of the now fabled 
discovery by Watson and Crick of the double helix. Also last year, the 
Scientists at the NIH Human Genome Project completed the sequencing of 
human DNA. These are major historical developments that will 
permanently change the course of biological science.
    As the science has progressed, so too have reservations with what 
we will do with this new information we are uncovering. This new 
understanding of the genetic basis of disease holds dangers as well as 
opportunities. Although we have yet to see proof of widespread 
discrimination, it is difficult to ignore the few, albeit egregious, 
cases that have been publicly documented.
    Further, we know that individuals are afraid to get genetic tests 
or seek genetic counseling out of fear that they will lose their health 
insurance or face discrimination in their employment. The medical 
progress made possible by genetic research is dependent on the 
willingness of study volunteers and patients to undergo genetic 
testing. However, such consent can be difficult to obtain today. Fears 
about the possible misuse or unauthorized disclosure of genetic 
information appear to adversely impact the desire of individuals to 
participate in genetic research. Such fears also extend to clinical 
practice, discouraging both patients and providers from taking full 
advantage of genetic tests and technologies. For instance, a national 
telephone survey of more than 1,000 people found that 63 percent of 
respondents said they would not take genetic tests if health insurers 
or employers could get access to the results.
    Because our public policies lag behind the science, the promise of 
the Human Genome Project is going unfulfilled. Fear of discrimination, 
or even potential discrimination, threatens society's ability to use 
new genetic technologies to improve human health and the scientific 
community's ability to conduct research needed to understand, treat, 
and prevent disease.
    After six years of dialogue, numerous hearings, and hours of 
deliberation, I am pleased that the Senate adopted important 
legislation in this field which was unanimously reported out the 
Health, Education, Labor, and Pensions Committee. I am also pleased 
that the first civil rights legislation adopted under my Chairmanship 
deals with an issue of true 21st Century concerns. This is the first 
civil rights act of the 21st Century.
Summary of S.1053, the Genetic Information Nondiscrimination Act
    The Genetic Information Nondiscrimination Act, which passed the 
Senate on October 14, 2003 by a vote of 95 to 0, establishes in federal 
law basic legal protections that prohibit discrimination in health 
insurance or employment based on genetic information. It is our belief 
that establishing these protections will allay concerns about the 
potential for discrimination and encourage individuals to participate 
in genetic research and to take advantage of genetic testing, new 
technologies, and new therapies.
    I want to acknowledge that in drafting this legislation we 
encountered many challenges. There are numerous, and sometimes 
conflicting, statutes in both the health and employment fields that had 
to be reconciled. Likewise, we devoted considerable attention to 
crafting definitions that matched the developing science of genetics, 
as well as fit with the realities of the workplace and benefits 
practices.
    The legislation provides substantive protections to those 
individuals who may suffer from actual genetic discrimination now and 
in the future. Further, it establishes clear, common sense rules that 
will prevent confusion, litigation, and, most importantly, 
discrimination.
      A key component of the legislation is its privacy 
provisions. Although current law already contains medical privacy rules 
covering genetic information, this legislation addresses some 
additional concerns and closes loopholes that are unique to genetics. 
For instance, it protects the privacy of genetic information at work 
and prohibits the use of genetic information in health insurance 
underwriting.
      This bill prohibits an employer from making employment 
decisions (hiring, firing, etc.) based on genetic information, or even 
the fact that an individual or family member requested or received 
genetic services.
      This bill prohibits health insurance plans from denying 
eligibility or enrollment in the health plan based on genetic 
information. And it prohibits health insurance plans from charging 
higher premiums based on an individual's--or his or her family 
member's--genetic information.
      Most importantly, the legislation recognizes that all 
individuals, whether they are healthy or sick, and ALL medical 
information, whether genetic or otherwise, should be afforded the same 
protections under law.
    While genetic discrimination may not be widespread at this point in 
time, this legislation ensures that discriminatory practices will never 
become common practice. From the past we have learned that employees, 
employers, insurers and others all work best together when the rules 
are clear and opportunities for personal achievement and health are 
available. This legislation tells everyone what is expected of them and 
avoids the trip wires and uncertainty of some of our existing laws.
    Unlocking our genetic code unleashes new power. And power produces 
new responsibilities in protecting the privacy of our genetic 
information and protecting it from misuse. It is my sincere belief that 
any concerns about new regulations on employers or health plans are far 
outweighed by the benefits of scientific advances that will further 
revolutionize the medical field. With no silver bullet solution in 
sight to cure what ails our expensive and troubled health care system, 
I believe all stakeholders--employees, insurers, health providers, as 
well as the employers that provide the health care benefits--will 
welcome reasonable legislation that fosters medical advances that can 
lead to the prevention and cure of disease.
                                 ______
                                 

Statement of the Society for Women's Health Research, Submitted for the 
                                 Record

    The Society for Women's Health Research supports a ban on 
discrimination by health insurers and employers on the basis of 
predictive genetic information. For several years the Society has 
endorsed genetic nondiscrimination legislation. Today we urge the House 
Education and the Workforce committee to consider and pass S. 1053, the 
Genetic Information Nondiscrimination Act. S. 1053 passed the Senate 
unanimously and is supported by the Administration.
    Over the past several years, remarkable advances have been made in 
the field of human genetics that hold extraordinary promise for 
improving the health and quality of life for millions of Americans. 
Scientists can use predictive genetic testing to determine an 
individual's susceptibility to illnesses such as breast and ovarian 
cancer, colon cancer, amyotrophic lateral sclerosis (ALS), and 
Alzheimer's disease. The availability of this information can help 
people make informed decisions about prevention and treatment options, 
and allow them to live longer and healthier lives,
    However, the ability to determine genetic predisposition to disease 
can also have negative repercussions. Many people who might be helped 
by genetic testing are afraid to take advantage of this medical 
technology because of tears that their genetic information will be used 
against them. Health insurers may deny coverage to individuals who 
carry genetic mutations that may cause theta to develop serious or 
debilitating diseases later in their lives. As a result, many 
individuals choose not to undergo genetic testing or to take part in 
medical research.
    The Society is particularly concerned about the impact of genetic 
discrimination on the participation of women in clinical trials. For 
over a decade, the Society has worked to secure the inclusion of women 
in medical studies, and to encourage them to take part in this 
research. However, women will be reluctant to enroll in clinical trials 
if they fear that their medical information will be used against them 
by health insurers and employers. Without a guarantee of protection 
from genetic discrimination, all of the progress which has been made in 
ensuring that women have access to clinical trials will be of little 
value, and both women and research will suffer.
    The Society encourages the passage of S. 1053, the Genetic 
Information Nondiscrimination Act, which will allow Americans to 
utilize the enormous potential of genetic testing and further medical 
research.
                                 ______
                                 

Statement of the UJA-Federation of New York, Women's Public Policy Task 
                    Force, Submitted for the Record

    The UJA-Federation of New York Women's Public Policy Task Force 
submits this testimony to with regards to The Genetic Information 
Nondiscrimination Act of 2003 (S. 1053). This historic act will 
prohibit discrimination as a result of genetic information with regard 
to health insurance and employment.
    UJA-Federation of New York is an umbrella organization that raises 
funds through an annual campaign of more 77,000 donors and distributes 
the funds to a network of more than 100 member agencies serving the 
greater metropolitan area of New York. The Women's Public Policy Task 
Force of UJA-Federation of New York is an advocacy group comprised of 
volunteers and professionals seeking to work with state and federal 
legislative bodies in an effort to improve the lives of women and thus 
strengthen all communities.
    The issue of genetic testing has become increasingly relevant as 
the mapping of the Human Genome has been completed and as new advances 
in science and technology are continuously being discovered. Many 
potentially life-saving genetic tests have been developed, allowing 
people to identify their personal risk profile for developing certain 
diseases in the future. While the findings of most tests do not 
guarantee the development of a disease, the knowledge that a genetic 
predisposition exists gives a person the opportunity to take steps that 
may prolong or enhance the quality of life.
    The genetic testing issue has specific relevance to the Jewish 
community. Specific mutations of two genes, commonly known as BRCA1 and 
BRCA2, have been proven to indicate a greater risk of developing breast 
cancer (it is strongly suspected by the medical community that both of 
these mutated genes could also cause prostate/colon cancer). These 
genes are prevalent among Ashkenazi Jewish women. As early detection 
leads to the highest breast cancer survival rates, it is beneficial for 
a woman to find out whether she is at increased risk; having that 
knowledge would allow her to be vigilant and ensure early detection. 
Women should be free to use this genetic technology without fear of 
discriminatory ramifications.
    Despite the potential benefits of this genetic test, studies have 
shown that women are not likely to undergo a genetic test, regardless 
of whether the test would be for their own health reasons or as part of 
a scientific research project. The reason why people are shying away 
from genetic testing is a pervasive fear of discrimination. Many people 
genuinely believe that their eligibility for health insurance or 
employment opportunities may be compromised based on their genetic 
information.
    Underlying the fear of discrimination is the issue of privacy and 
the fact that people feel that their private genetic information is not 
protected and can be disclosed to any employer or insurer. While 
protections relating to health insurance, employment and privacy do 
exist to some extent, they are clearly not sufficient to allow people 
to be tested with confidence that there will be no negative 
repercussions. Discovering an increased risk of disease is traumatic 
enough without having to worry about losing employment or insurance 
coverage. Existing protections must be improved and better communicated 
to the public. It is unacceptable to allow important research to falter 
and to let life saving genetic advances go to waste.
    The bipartisan Genetic Information Nondiscrimination Act of 2003 
(S. 1053) addresses these legitimate fears. This legislation will 
establish strong protections against discrimination based on genetic 
information both in health insurance and employment. Support for the 
bill has come from a wide range of organizations representing patients, 
medical professionals, families and employees. We should give all 
Americans the comprehensive protections against genetic discrimination 
in health insurance and employment they deserve by enacting this 
important legislation.
With regard to health insurance discrimination, the Act will:
      Prohibit enrollment restriction and premium adjustment on 
the basis of genetic information or genetic services.
      Prevent health plans and insurers from requesting or 
requiring that an individual take a genetic test.
      Prevent health plans and insurers from pursuing or being 
provided information on predictive genetic information or genetic 
services prior to enrollment--the time when this information is most 
likely to be used in making enrollment decisions.
      Cover all health insurance programs, including those 
regulated by the federal government under ERISA, state-regulated plans, 
Medigap, and the individual market.
With regard to employment discrimination, the Act will:
      Prohibit discrimination in hiring, compensation, and 
other personnel processes.
      Prohibit the collection of genetic information.
      Require genetic information possessed by employers to be 
confidentially maintained and disclosed only to the employee or under 
other tightly controlled circumstances.
      Cover employers, employment agencies, labor 
organizations, and training programs.
    We are happy to support The Genetic Information Nondiscrimination 
Act of 2003 (S.1053), legislation that will protect people from the 
threat that their genetic information can be used against them in any 
way. We hope that Members of the House will join Members of the Senate 
in passing this historic legislation.
                                 ______
                                 

      Letter from CARES Foundation, Inc., Submitted for the Record

July 20, 2004

The Honorable Sam Johnson
Committee on Education and the Workforce
Subcommittee on Employer-Employee Relations
House of Representatives
Washington, DC 20515

RE: Statement for the Record-Hearing on Genetic Nondiscrimination 
Policies

    On behalf of the CARES (Congenital Adrenal Hyperplasia Education 
and Support ) Foundation, Inc., I thank you for holding this hearing on 
genetic nondiscrimination policies. This is an issue of great 
importance to people with Congenital Adrenal Hyperplasia (CAH) and 
their parents.
    CAH is a genetic condition which results in the body's failure to 
produce either or both of two critical hormones, cortisol and 
aldosterone. With diagnosis and proper treatment, people with CAH can 
lead normal and healthy lives. In its classical form, it affects 1 in 
12-15,000. In its non-classical form, it affects 1 in 100. It is one of 
the most common genetic diseases identified to date.
    As you know, genetic testing holds enormous promise to prevent 
health problems and help people cope more effectively with conditions 
that are unavoidable. In the case of CAH, genetic testing can determine 
whether parents are carriers of the gene variants that cause CAH. In 
addition, genetic testing of a fetus can help begin treatment for this 
condition even before birth.
    Unfortunately, the same technologies that predict disease through 
genetic testing and family history can be used to open the door to 
discrimination. Currently there is no federal standard in place to 
prevent to use of genetic information to deny people with CAH jobs or 
insurance coverage.
    This is of personal concern, as my six-year-old son has classical 
CAH. Not that anyone could tell; he is a healthy, active, and 
intelligent child. But because of his genetic condition, he is at risk 
of facing discrimination from employers and insurers; as parents, we 
already worry about our family insurance coverage.
    As Senate Majority Leader Frist stated on the Senate floor about 
genetics nondiscrimination legislation: ``As we greet the future, as we 
look at new technology, this is just one example of this body acting 
proactively, acting preemptively, so that such potential use in a 
discriminatory fashion of medical advances is kept from hurting the 
American people. We must take care to protect our body politic, and 
this legislation does just that.''
    Thank you again for holding this hearing, and the CARES Foundation, 
Inc. urges you to support the enactment of genetics nondiscrimination 
legislation in order to protect our children.

Sincerely,

Mark Engman
Member of the Board of Trustees
CARES Foundation, Inc.
(Congenital Adrenal Hyperplasia Research, Education and Support)
                                 ______
                                 

      Statement of United Cerebral Palsy, Submitted for the Record

    United Cerebral Palsy (UCP) thanks you, Mr. Chair, for conducting 
this hearing on the crucial issue of discrimination based on genetic 
information, and urges you to give the issue further serious 
consideration for meaningful action by the House before this Session of 
Congress ends.
    For 50 years, UCP has been committed to change and progress for 
persons with disabilities. The national organization and its nationwide 
network of 105 affiliates in 37 states strive to ensure the inclusion 
of persons with disabilities in every facet of society--from the Web to 
the workplace, from the classroom to the community. As one of the 
largest health charities in America, UCP's mission is to advance the 
independence, productivity and full citizenship of people with cerebral 
palsy and other disabilities, through our commitment to the principles 
of independence, inclusion and self-determination. An integral, and 
often overriding, part of our mission is to ensure that people who 
experience disability are free from discrimination in all facets of 
American society, most especially in the workplace and in the health 
care and health insurance arenas.
    Clearly, at the dawn of the 21st Century, medical and scientific 
advancements, including genetic testing, can improve our lives. Genetic 
testing can provide information on how we can prevent future health 
problems and cope more effectively with unavoidable conditions. As 
advocates for people who daily face discrimination on many fronts 
simply because they have a disability, however, we are concerned that 
the ability to predict disease and disability through genetic testing 
and family history, as valuable as it is, opens the door for yet 
another form of discrimination in those extremely sensitive areas of 
employment and health care. Employers, for instance, finding that there 
is a genetic marker for disease or disability (e.g. breast cancer, 
diabetes, some forms of dwarfism, certain learning disabilities, might 
refuse to hire a person, assuming there may be an impact on the 
business, and the ``bottom line,'' if the person actually contracts the 
disease or disability in the future. Insurance companies might refuse 
to cover people with genetic markers for ``high-cost'' conditions, or 
impose restrictions on coverage.
    We were extremely gratified and encouraged when the Senate worked 
hard, achieved a compromise and passed the Genetic Information Non-
Discrimination Act, S. 1053, in October of 2003. We have also been 
happy to see that President Bush has expressed strong support for the 
legislation and promised to sign a bill that mirrors the Senate's 
provisions. We are further encouraged that this Subcommittee is holding 
a hearing on the issue.
    Now it is up to the House of Representatives to pass S. 1053, or 
similar legislation, in order to protect American citizens from the 
vulnerability experienced by those who are discriminated against for 
characteristics, in this case literally imperceptible genetic 
characteristics, over which they have no control.
    We ask you, as a follow-up to this hearing, to support a vote on S. 
1053, or to move similar legislation through the House as soon as 
possible.
                                 ______
                                 

 Statement of the Digestive Disease National Coalition, Submitted for 
                               the Record

    The Digestive Disease National Coalition (DDNC) applauds Chairman 
John Boehner (R-OH) and the members of the House Committee on Education 
and the Workforce for initiating this important hearing on Genetic 
Discrimination.
    Established in 1978, the Digestive Disease National Coalition 
(DDNC) is a national non-profit advocacy organization comprised of the 
major gastrointestinal voluntary patient organizations and professional 
societies. Currently there are 26 member organizations that belong to 
the DDNC. The mission of the Digestive Disease National Coalition 
(DDNC) is to work cooperatively to improve access to and the quality of 
digestive disease health care in order to promote the best possible 
medical outcome and quality of life for current and future patients 
with digestive diseases. The DDNC has supported and advocated for 
genetic non-discrimination legislation for many years
    The Digestive Disease National Coalition enthusiastically endorses 
the passage of H.R. 1910, The Genetic Nondiscrimination in Health 
Insurance and Employment Act as well as S. 1053, the Genetic 
Information Nondiscrimination Act of 2003. The DDNC urges the committee 
to pass these bills quickly so that Congress can finally address an 
issue that has dangerous repercussions for millions of Americans 
families. H.R. 1910, is bipartisan legislation introduced by 
Congresswoman Louise Slaughter (D-NY) with currently 241 cosponsors 
including 27 members of the Education and the Workforce committee. S. 
1053 was introduced by Senator Olympia Snowe (R-ME) and passed the 
Senate unanimously in October 2003.
    This legislation has the potential to assist families, with 
inherited chronic and catastrophic disorders, to be able to live 
without fear of losing their health insurance coverage or their jobs. 
Without safeguards in place employers and health insurance providers 
could subvert science to meet their financial bottom line.
    The DDNC calls on Chairman Boehner and members of the committee to 
pass H.R. 1910, The Genetic Nondiscrimination in Health Insurance and 
Employment Act and S. 1053, The Genetic Information Nondiscrimination 
Act of 2003 as quickly as possible.
                                 ______
                                 

   Letter from the American Academy of Pediatrics, Submitted for the 
                                 Record

July 20, 2004

The Honorable Sam Johnson, Chairman
Employer-Employee Relations Subcommittee
Committee on Education and the Workforce
U.S. House of Representatives
Washington, DC 20515

    Dear Chairman Johnson:

    The American Academy of Pediatrics urges prompt passage of federal 
legislation that would prevent genetic discrimination, thereby allowing 
continued progress in prevention efforts through genetic screening and 
ensuring that all children have access to health insurance coverage. 
The American Academy of Pediatrics is an organization of 60,000 primary 
care pediatricians, pediatric medical subspecialists and pediatric 
surgical specialists dedicated to the health and well being of all 
infants, children, adolescents, and young adults.
    The American Academy of Pediatrics strongly supports efforts to 
enhance, improve and expand the ability to provide newborn screening, 
counseling and health care services. Advances in genetic research 
promise great strides in the diagnosis and treatment of many childhood 
diseases, detected as early as the newborn period or later in 
childhood. With early identification and timely intervention, we have 
the ability to significantly reduce morbidity, mortality and associated 
disabilities in infants and children affected with certain genetic, 
metabolic and infectious conditions.
    With these opportunities, however, we also have a responsibility to 
ensure that careful consideration is given to the testing and screening 
of children so that emerging technologies are used in ways that promote 
the best interest of patients and their families. Potential benefits of 
genetic screening and testing are limited by the risks of harm that may 
be done by gaining certain genetic information, including potential for 
discrimination by insurers and employers. For this reason the American 
Academy of Pediatrics supports passage of legislation that protects 
children and families from genetic discrimination.
    Furthermore, the American Academy of Pediatrics is concerned that 
genetic discrimination is a barrier for families to access health 
insurance for their children. More than 9 million children are 
currently uninsured in this country, and millions more are 
underinsured. We will never achieve our goal of ensuring that every 
child has health insurance coverage if genetic discrimination is 
permitted. The American Academy of Pediatrics therefore urges Congress 
to pass legislation that protects American families from genetic 
discrimination.

Sincerely,

Carden Johnston, M.D., FAAP
President
American Academy of Pediatrics
                                 ______
                                 

  Statement of The Arc of the United States, Submitted for the Record

    The Arc of the United States thanks the House Committee on 
Education and the Workforce Subcommittee on Employer-Employee Relations 
for holding this important hearing on the crucial issue of 
discrimination based on genetic information. We urge you to give the 
issue serious consideration for action by the House before the close of 
the 108th Congress.
    The Arc of the United States (The Arc) is the national organization 
of and for people with mental retardation and related developmental 
disabilities and their families. Through its approximately 900 state 
and local chapters, The Arc is devoted to promoting and improving 
supports and services for people with mental retardation and their 
families. The association also fosters research and education regarding 
the prevention of mental retardation in infants and young children. An 
integral part of our mission is to ensure that people who experience 
mental retardation or related disabilities are free from discrimination 
in all facets of society, including in the workplace and in the health 
care and health insurance arenas.
    As you know, genetic testing can improve our lives by providing 
information on how we can prevent future health problems and cope more 
effectively with unavoidable conditions. As advocates for people with 
mental retardation who daily face discrimination, however, we are 
concerned that the ability to predict disease and disability through 
genetic testing and family history, as valuable as it is, opens the 
door for yet another form of discrimination in the extremely sensitive 
areas of employment and health care coverage.
    We are very concerned about the possible misuse of genetic 
information for families where mental retardation or related 
disabilities are present or predicted. With evidence of genetic markers 
for impairments (such as Down Syndrome, Fragile X Syndrome, and others) 
in individuals or their children, insurance companies might refuse to 
cover people with potential for ``high-cost'' conditions, or impose 
restrictions on coverage for ``pre-existing conditions''. In addition, 
employers, finding that there is a genetic marker for a disability, 
might refuse to hire a person, assuming there may be an impact on the 
company's health insurance premiums, absenteeism, or other costs of 
doing business, if the employee should give birth to a child with the 
disability in the future.
    Last fall, the Senate, achieved a compromise and passed the Genetic 
Information Non-Discrimination Act, S. 1053. President Bush has 
expressed strong support for the legislation and promised to sign a 
bill that mirrors the Senate's provisions. We are encouraged that the 
Subcommittee on Employer-Employee Relations is holding this hearing on 
the issue.
    We urge the Subcommittee and the full House of Representatives to 
pass S. 1053, or similar legislation, in order to protect American 
citizens from the vulnerability experienced by those who are 
discriminated against for genetic characteristics. We would be happy to 
assist the Subcommittee regarding the issues that could affect people 
with disabilities and their families.
                                 ______
                                 

   Statement of the Alpha-1 Association and the Alpha-1 Foundation, 
                        Submitted for the Record

    Last fall the Senate passed the Genetic Information 
Nondiscrimination Act of 2003 by a vote of 95 to 0 giving us great hope 
that federal protections against the misuse of genetic information 
would finally be put into place. The Alpha-1 Association and Alpha-1 
Foundation support S. 1053 and H.R. 1910 believing there is a great 
need to protect all Americans from genetic discrimination.
    We need to live without fear of retribution in the form of genetic 
discrimination. In the absence of federal legislation, states have 
implemented a patchwork of laws that shield individuals from employment 
and insurance discrimination. We need national policy to ensure that 
all Americans have the same protections. Genetic testing allows 
individuals to exercise preventative health measures, seek appropriate 
therapies, and engage in essential life planning. Unfortunately, this 
same information may be used to discriminate against individuals who 
have no control over their inherited condition. S. 1053 and H.R. 1910 
protect individuals who fear that genetic information could be misused 
to ruin job opportunities, forcing them to choose between the benefit 
of testing and the risk of losing employment or insurance.
Why are S. 1053 and H.R. 1910 important to individuals with Alpha-1?
      As a genetic condition, those with Alpha-1 or seeking 
Alpha-1 testing may face health and employment insurance 
discrimination. Fear of genetic discrimination may also significantly 
impact individual and family decision making.
      The Alpha-1 Foundation's Ethical Legal and Social 
Implications (ELSI) Working Group, has continued to discourage general 
population screening in absence of protective legislation.
      Those concerned about the ethics of genetic testing have 
recommended Targeted detection for Alpha-1 for those currently 
suffering from defined lung disease such as COPD or a family history of 
Alpha-1.
      The Alpha-1 Coded Testing Trial1 has offered 
individuals an opportunity to receive confidential test results since 
September of 2001; to date over 2,400 test kits have been requested. Of 
those returning the test kits and responding to the survey 
questionnaire:
---------------------------------------------------------------------------
    \1\ The ACT Trial is funded by the Alpha-1 Foundation and conducted 
at the Medical University of South Carolina under the direction of Dr. 
Charlie Strange, Program Director. The ACT Trial offers a free and 
confidential finger-stick test that can be completed at home with 
results mailed directly to the participants. The test is administered 
through a research study which evaluates perceived risks and benefits 
of genetic testing. For more information or a test kit please email the 
Registry Coordinator at [email protected], or call toll free at 1-
(877)-886-2383.
---------------------------------------------------------------------------
        -  Over 30% report fear of losing insurance as the reason for 
        seeking confidential testing;
        -  34% report concern about facing higher health care costs if 
        results were public;
        -  85% seek testing for the Genetic Knowledge. In fact, this 
        was the most popular response to the perceived benefits of 
        seeking testing.
    Alpha-1 Antitrypsin Deficiency is an inherited genetic disorder 
that can result in devastating and fatal lung disease that is often 
misdiagnosed as asthma or Chronic Obstructive Pulmonary Disease. Alpha-
1 afflicts an estimated 100,000 individuals in the US with fewer than 
6,000 accurately diagnosed. Alpha-1 is a major cause for lung 
transplantation in adults and the second leading cause of pediatric 
liver transplants.
                                 ______
                                 

  Letter from the National Marfan Foundation, Submitted for the Record

July 21, 2004
The Honorable Sam Johnson, Chair
House Education and Workforce Committee, Subcommittee on Employer-
Employee Relations
2181 Rayburn House Office Building
United States House of Representatives
Washington, DC 20515

The Honorable Robert E. Andrews, Ranking Member
House Education and Workforce Committee, Subcommittee on Employer-
Employee Relations
2181 Rayburn House Office Building
United States House of Representatives
Washington, DC 20515

Dear Chairman Johnson and Ranking Member Andrews:

    On behalf of the National Marfan Foundation, I would like to submit 
this statement on Genetic Non-Discrimination. The National Marfan 
Foundation represents approximately 20,000 members throughout the 
United States. Marfan syndrome is a life threatening genetic disorder 
that results in weakening of the aorta, the main artery that carries 
blood away from the heart. With time, progressive enlargement of the 
aorta causes leakage of the aortic valve or tears in the aorta wall, 
which in some instances can cause death within a few minutes.
    In 1991, researchers discovered the gene responsible for Marfan 
syndrome, fibrillin-1. This was a dramatic step to help understand the 
underlying causes of the syndrome and the hope to finding treatments 
that may cure this disorder. Individuals with Marfan syndrome now face 
the fear of being labeled as having a genetic disorder, a label which 
employers and health insurers may use to deny their access to 
employment and healthcare. This discrimination causes under utilization 
of genetic tests that may be used to help diagnose other members of the 
family and ultimately save their lives.
    The National Marfan Foundation urges you to consider federal 
legislation that contains strong genetic discrimination protections as 
described by the Coalition of Genetic Fairness. Passage of legislation 
this year would greatly benefit the millions of people affected with a 
genetic disorder.

Sincerely,

Josephine Grima, Ph.D.
Director of Research and Legislative Affairs
National Marfan Foundation
                                 ______
                                 

 Letter from the American Association for the Advancement of Science, 
                        Submitted for the Record

July 20, 2004
The Honorable Sam Johnson
U.S. House of Representatives
1211 Longworth House Office Building
Washington, DC 20515

Dear Representative Johnson:

    On behalf of the American Association for the Advancement of 
Science (AAAS), I am writing to bring to your attention the conclusions 
of a AAAS working group concerning the need to protect against genetic 
discrimination.
    The completion of the human genome sequence has raised hopes of a 
medical revolution, but to take full advantage of this momentous 
achievement, we must ensure the highest levels of public confidence 
that genetic information will be used appropriately to improve health 
and not to discriminate unfairly against people. The Senate has taken a 
great stride toward this goal by passing S. 1053, the Genetic 
Information Nondiscrimination Act, which is consistent with the 
conclusions of our working group. AAAS encourages the House to consider 
similar action as it deliberates on H.R. 1910.
    The working group released a statement in 1999 which included the 
following conclusions:
      Individuals should be able to gain information about 
their genetic makeup, but should be able to protect themselves against 
discrimination by controlling access to such information.
      Genetic information should be used only to enhance, not 
undermine, an individual's quality of life. Society, therefore, in 
pursuit of the common good, has a responsibility to protect citizens 
against the misuse of genetic information.
      Policies should be adopted to ensure opportunities for 
people to participate in research studies and clinical trials without 
fear that their genetic information could adversely affect their health 
insurance status.
    Founded in 1848, AAAS is the world's largest general scientific 
society and publisher of the journal, Science. The Association serves 
some 262 affiliated organizations in more than 130 countries, serving 
some 10 million individuals. The non-profit AAAS is open to all and 
fulfills its mission to ``advance science and serve society'' though 
initiatives in science policy and more.
    The complete genetic discrimination working group statement is 
available on the AAAS website at http://www.aaas.org/spp/dser/
bioethics/resources/gdiscrim.shtml. For further information, please do 
not hesitate to contact Joanne Padron Carney of the AAAS Center for 
Science, Technology, and Congress at 202/326-6798, or you may call my 
office.

Sincerely,

Alan I. Leshner
                                 ______
                                 

      Statement of the Genetic Alliance, Submitted for the Record

    The Genetic Alliance is an alliance of genetic disease advocacy 
groups, which represent millions of individuals. We understand the 
promise of advanced medical research and are appalled that many 
families and individuals have experienced genetic discrimination.
    We urge the House of Representatives to consider and pass the 
Genetic Information Nondiscrimination Act [S. 1053], to prohibit 
discrimination on the basis of genetic information with respect to 
health insurance and employment. We believe that all genetic 
information, including family history, deserves strong and enforceable 
protections against misuse in health insurance and employment. Such 
safeguards will protect the rights, privacy and confidentiality of the 
individual and their family.
    This is an exciting and hopeful time for medicine. It is 
imperative, however, that we, the public, be able to take full 
advantage of new medical advances that could help prevent disease 
before it develops. Genetic nondiscrimination legislation will reduce 
the likelihood of genetic information being misused in health insurance 
or employment decision-making. Genetic information is merely predictive 
information. Simply having a positive genetic test does not mean one 
will develop a disease--thus this information should not be used to 
make decisions about insurance coverage or employment.
    As biomedical research advances, genetic testing will become a 
critical tool in the provision of healthcare. As a result, many more 
people will know about their own genetic makeup, putting them at risk 
of genetic discrimination. People who would like to avail themselves of 
genetic testing already have enough to worry about. They should not 
have the additional burden of genetic discrimination.
    And so, on behalf of thousands of consumers and patient groups, we 
urge Speaker Hastert to move S. 1053 off the desk and bring it to a 
vote. President Bush has said he'll sign it. Public policy must keep 
pace with scientific advances, and provide those advances with a 
climate conducive to their translation into health benefits for all 
Americans.
                                 ______
                                 

 Statement of the American Academy of Family Physicians, Submitted for 
                               the Record

    The 93,700 member American Academy of Family Physicians submits 
this statement for the record in support of HR 1910/S 1053, the Genetic 
Information Nondiscrimination Act of 2003, which would prohibit genetic 
discrimination in health insurance and employment. The AAFP strongly 
supports effectively translating genetic advances to the practices of 
primary care physicians, who provide most of the health care the 
majority of Americans receive. Primary care physicians will need to 
receive appropriate education and training, and research translation 
needs to include the development of primary care tools for delivering 
the fruits of genetic advances to all Americans. Nevertheless, 
Americans must be legally protected from discrimination based on their 
genetic make up, which is the goal of this legislation.
Background
    Completion of the sequencing of the human genome of April 2003, 
inaugurated an era in which genetic information will become an 
increasingly indispensable part of quality health care. Researchers 
predict the advent of individualized treatment, ranging from preventive 
strategies to ``designer drugs,'' specifically formulated for a 
patient's genetic makeup.
    With these potential benefits, however, comes potential for the 
abuse of personal information in non-healthcare settings such as 
insurance and in the workplace, abuses that the above measures have 
been designed to address. For example, HR 1910/S 1053 would forbid 
insurance companies from restricting enrollment or changing premiums 
based on an individual's genetic makeup. The bill also would ban 
discrimination based on genetic information in the workplace. 
Underpinning these issues are patients' concerns about the privacy of 
their genetic information and informed consent. In short, with the 
proliferation of new genetic information, lawmakers must determine how 
to protect this sensitive health data.
Relationship to Primary Care
    In addition to concerns about discrimination, family physicians are 
keenly interested in the impact that genetic information will have on 
their individual practices. Specifically, family physicians want 
genetic research translated into information that can be used to help 
their patients. Family physicians do address patients' illnesses, but 
more importantly, they help patients integrate information about all of 
their health conditions with their particular life goals. This 
important family practice function will need new tools to deal with 
genetic information, including the ability to perform diagnostic 
genetic tests in the physician's office.
    Currently, family physicians conduct almost 200 million office 
visits each year, which is 73 million more visits than any other 
medical specialty. In addition, according to ``The Ecology of Medical 
Care Revisited,'' (New England Journal of Medicine, 2001, 344:2021-25) 
more than 12 times as many people are seen in the offices of primary 
care physicians as in hospitals. The sheer number of visits to family 
physicians, as well as to other primary care doctors, means that most 
Americans will approach them first about questions on genetic 
information. We wish to be able to counsel our patients about these 
issues without fear that this information could somehow be used against 
them in insurance or employment.
Education and Training
    Education and training of primary care physicians in genetic 
information, testing diagnosis and counseling is also critical. Long 
the province of subspecialists, the Genetics in Primary Care Initiative 
(GPC), supported by three federal agencies (Health Resources and 
Services Administration; National Human Genome Research Institute and 
the Agency for Healthcare Research and Quality) was established to 
``plan, implement, and evaluate outcomes of training programs in 
genetics.''
    As W. Burke, et al., point out, (``Genetics in Primary Care,'' 
Community Genetics, 2002; 5:138-146) ``Genetic tests have become 
increasingly accurate in diagnosing both chromosomal and single gene 
disorders and predictive tests have begun to emerge--'' Primary care 
physicians need to be trained to administer and interpret these tests 
so that they can provide appropriate counseling and referrals.
    In addition, the Advisory Committee on Training in Primary Care 
Medicine and Dentistry, which Congress established to review primary 
care training programs that support family medicine, general internal 
medicine and pediatrics, general dentistry and physician assistants, 
also recognized the emerging field of genetic training. Its November 
2001 report states, ``Primary care training programs are ideally 
positioned to react quickly to meet ever-changing health care needs and 
issues, whether they are related to HIV/AIDS, growing numbers of 
elderly with chronic illnesses, implications of the modern genetics 
revolution, the threat of bioterrorism, or other issues that will 
continue to emerge and demand rapid educational intervention.''
Conclusion
    While genetics is still a relatively young field, now is the time 
for developing the plan to deliver genetic testing and treatment 
discoveries to all Americans. There is no better mechanism for applying 
these discoveries than the primary care workforce, but this workforce 
will need new and special preparation and tools. The lag between 
discovery and delivery in healthcare is typically 17 years, and the 
primary care workforce-training pipeline is 7 or more years. The 
federal government will need to be proactive in its planning and 
support if Americans are to realize the fruits of genetic discoveries 
in the next decade.
                                 ______
                                 

   Statement of the National Workrights Institute, Submitted for the 
                                 Record

           THE NEED FOR GENETIC NONDISCRIMINATION LEGISLATION
    During the past several decades, our understanding of genetics has 
multiplied as procedures for identifying, analyzing and manipulating 
DNA have advanced. Among the many benefits of these efforts are the 
ways they may influence preventive health, reproductive planning and 
eventually therapies to cure illnesses with a genetic component. No one 
can deny that this knowledge may be a blessing in finding cures to 
diseases with genetic origins, including Alzheimer's, Huntington's and 
many forms of cancer. Nevertheless, the ability to identify individuals 
based on genetic characteristics necessarily predates the ability to 
use this information in the treatment of the corresponding diseases and 
therefore the immediate consequences of such advances have and will 
continue to lead to a number of forms of individual discrimination.
Genetic Discrimination in the Workplace:
    Employers are beginning to acquire and use genetic information. In 
a 2001 survey of U.S. firms almost 2% were currently conducting genetic 
tests for Sickle Cell and Huntington's Disease, 14% were acquiring 
genetic information during workplace susceptibility testing and 20% 
reported requesting family medical histories containing information on 
the likelihood of disease.\1\
---------------------------------------------------------------------------
    \1\ American Management Association. ``Summary of key findings.'' 
2001 AMA Survey on Workplace Testing: Medical Testing
---------------------------------------------------------------------------
    As the acquisition of genetic information by employers increases 
there have been numerous examples of discrimination. Consider:
    *  In a 1996 Georgetown University study of 332 families belonging 
to genetic disease support groups, 22% of the respondents stated that 
they that they had knowingly been refused health insurance and 13% 
stated that they had knowingly been terminated from their jobs because 
of the perceived risks attributed to their genetic status.
    *  Lawrence Berkeley Laboratories conducted testing of their 
employees for sickle cell trait throughout the 1990's without their 
knowledge and consent for decision-making purposes.
    *  In 1999 Terri Sargent, despite excellent past performance 
reviews was fired from her job for having the genetic predisposition to 
Alpha-1 disease though she remained asymptomatic.
    *  In 2001 Burlington Northern Railroad conducted genetic testing 
of their employees for carpal tunnel syndrome for purposes of refuting 
workers compensation claims.
Public Concern:
    There has been continuing widespread concern in this country about 
the potential for misuse of genetic information. Consider:
    *  A Harris Poll taken in 1995 of the general public finds 86% of 
those surveyed indicated they were very concerned or somewhat concerned 
that employers and insurers might have access to and use genetic 
information.\2\
---------------------------------------------------------------------------
    \2\ Harris poll, 1995, 34
---------------------------------------------------------------------------
    *  A 1996 study finds 87% of respondents would not want their 
employers to know that they were tested and found to be at a high risk 
of a genetic disorder.\3\
---------------------------------------------------------------------------
    \3\ E. Virginia Lapham. Et al. ``Genetic Discrimination: 
Perspectives of Consumers.'' Science, October 25, 1996, p.622
---------------------------------------------------------------------------
    *  In 1997 a survey finds that 63% of participants reported they 
would not take genetic tests for disease if employers and health 
insurers could access the results.\4\
---------------------------------------------------------------------------
    \4\ National Center for Genome Resources unpublished survey, 1997. 
Cited in Department of Labor ``Genetic Information and the Workplace'', 
January 20, 1998.
---------------------------------------------------------------------------
    *  In a 2000 CNN/Time Magazine Poll 80% of those surveyed did not 
believe employers or insurers should have access to genetic 
information.
    *  A 2003 poll found 69% of respondent surveyed were very worried 
or somewhat worried that employers and insurers would discriminate 
using genetic information.\5\
---------------------------------------------------------------------------
    \5\ Genetic Engineering News (GEN) Website poll 
(www.genengnews.com).
---------------------------------------------------------------------------
    Restrictions must be placed on the accumulation and use of genetic 
information by employers before discrimination becomes rampant. There 
is a pressing need for Congress to pass genetic nondiscrimination 
legislation to address this issue. The overwhelming demand by the 
American public for such legislation is clear. Without meaningful 
privacy safeguards and protections against discrimination, the benefits 
of genetic testing will ultimately be lost as individuals avoid tests 
in the fear of adverse consequences. Indeed, if one really doubts this 
growing trend of genetic discrimination consider asking an employer the 
following question: ``If an inexpensive and accurate test existed that 
would indicate that an individual had a predisposition to a particular 
illness that would cost thousands of dollars to treat and limit their 
ability to perform would you be interested conducting and using such 
testing?''
                                 ______
                                 

 Statement of the National Breast Cancer Coalition, Submitted for the 
                                 Record

    I am Fran Visco, a breast cancer survivor, a wife and mother, a 
lawyer, and President of the National Breast Cancer Coalition (NBCC). 
On behalf of NBCC, and the more than 3 million women living with breast 
cancer, I would like to thank you for the opportunity to provide this 
testimony.
    The National Breast Cancer Coalition is a grassroots advocacy 
organization made up of more than 600 organizations and tens of 
thousands of individuals and has been working since l99l toward the 
eradication of breast cancer through advocacy and action. NBCC supports 
increased funding for breast cancer research, increased access to 
quality health care for all women, and increased influence of breast 
cancer activists at every table where decisions regarding breast cancer 
are made.
    With the knowledge of the human genome expanding exponentially, the 
National Breast Cancer Coalition (NBCC) believes strongly that 
legislative and regulatory strategies must be established to address 
the protection of individuals from the misuse of their genetic 
information at the national, state and local levels of government. 
Genetic information is uniquely private information that should not be 
disclosed without authorization by the individual. Improper disclosure 
can lead to significant harm, including discrimination in the areas of 
employment, education, health care and insurance.
    In 1996, the Health Insurance Portability and Accountability Act 
(HIPAA, P.L.104-191), also known as HIPAA, was the first federal law 
that took some significant steps toward extending protection with 
regard to genetic discrimination in the health insurance arena. HIPAA 
mandated the Department of Health and Human Services (HHS) to create 
privacy standards to prevent unwarranted disclosures of medical 
information if Congress did not enact privacy legislation by August 
1999. After this deadline passed, HHS established the standards for 
privacy of individually identifiable health information (known as the 
``privacy regulation''). While the privacy regulation establishes some 
guidelines for the methods of disclosure and access to medical 
information by health plans and providers, it does not specifically 
address the issue of genetic discrimination. Moreover, even within the 
health care arena, the privacy regulation does not extend to all group 
plans.
    The time is now to extend protections against genetic 
discrimination to everyone. The release of the working draft of the 
human genome sequence in June 2000 and the development of new genetic 
tests necessitate legislative and regulatory strategies to address the 
issue of how to protect individuals from the misuse of their genetic 
information.
    Furthermore, the fear of potential discrimination threatens both a 
woman's decision to use new genetic technologies and to seek the best 
medical care from her physician, and the ability to conduct the 
research necessary to understand the cause and find a cure for breast 
cancer. Fear of discrimination can also prevent individuals from 
enrolling in clinical trials and forgoing possible life-saving 
treatment.
    NBCC strongly supports the enactment of legislation that would 
protect millions of individuals against discrimination not only in 
health insurance but also in the workplace, and that would provide 
strong enforcement mechanisms that include a private right of action. 
For these reasons, NBCC supports H.R. 1910 (Slaughter) the Genetic 
Nondiscrimination in Health Insurance and Employment Act. This 
legislation prohibits health plans from:
      Requesting, requiring, collecting or disclosing genetic 
information without prior specific written authorization of the 
individual;
      Using genetic information, or an individual's request for 
genetic services, to deny or limit any coverage for established 
eligibility, continuation, enrollment or contribution requirements;
      Establishing differential rates or premium payments based 
on genetic information, or an individual's request for genetic 
services.
    This legislation also prohibits employers from:
      Using genetic information to affect the hiring of an 
individual or to affect the terms, conditions, privileges, benefits or 
termination of employment, unless the employment organization can prove 
this information is job related and consistent with business necessity;
      Requesting, requiring, collecting or disclosing genetic 
information prior to a conditional offer of employment; or under all 
other circumstances, requesting or requiring collection or disclosure 
of genetic information unless the employment organization can prove 
this information is job related and consistent with business necessity;
      Accessing genetic information contained in medical 
records released by individuals as a condition of employment, in claims 
filed for reimbursement for health care costs, and other services;
      Releasing genetic information without specific prior 
written authorization of the individual.
    Most importantly, H.R. 1910 contains strong enforcement language 
and provides individuals with a private right of action to go to court 
for legal and equitable relief if they are a victim of genetic 
discrimination, whether they are subject to discrimination by their 
health plan or their employer.
    NBCC does not support the Genetic Nondiscrimination in Health 
Insurance and Employment Act (S.1053) passed by the Senate on October 
14, 2003 because it does not contain sufficient enforcement provisions. 
Unlike H.R. 1910, S. 1053 does not provide individuals with a private 
right of action should they become a victim of genetic discrimination 
in the individual insurance market.
    NBCC's number one legislative priority if guaranteed access to 
quality health care. However, the only way to guarantee patients have 
access to the care they deserve is to provide strong enforcement. If 
health care providers, employers, and insurance companies comply with 
the law, then those enforcement mechanisms will never have to be used. 
But as patients, we need to know that they are in place for our 
protection.
    NBCC believes that a right with no enforcement is really no right 
at all. It is for that reason that no matter how carefully a bill is 
worded, no matter how much effort is put into including ``protections'' 
that breast cancer patients need--if that bill does not have a strong 
enforcement mechanism, then NBCC simply will not support it.
    I urge you to consider and pass legislation that will protect 
individual's privacy and guarantee them access to quality health care 
by passing legislation to prevent genetic discrimination that includes 
meaningful enforcement provisions, such as H.R. 1910. Thank you for the 
opportunity to share the views of the National Breast Cancer Coalition.
                                 ______
                                 

  Statement of the National Council on Disability, Submitted for the 
                                 Record

           Principles for Genetic Discrimination Legislation
    Protections for Individuals with Actual Health Conditions: The same 
interpretations that make the ADA difficult to enforce by individuals 
with genetic markers make it difficult to enforce by individuals with a 
range of health conditions. When Congress considers protections for 
individuals who experience discrimination based on genetic information, 
it should also ensure that if these individuals are eventually 
diagnosed with medical conditions, they will be protected against 
discrimination.
    Workplace Discrimination: Employers must not be permitted to use 
predictive genetic information as a basis for taking any employment 
actions or as a term or condition of employment. Nor should employers 
be permitted to use this information to limit, segregate or classify 
employees or job applicants.
    Employers' Collection of Information: Employers should be permitted 
to request predictive genetic information only: (1) to monitor effects 
of toxic substances in the workplace upon an employees' written consent 
to such monitoring, with the employer receiving only aggregate results 
and not results for particular employees, or (2) to provide genetic 
services to employees upon the employees' written consent. In either 
case, results should be provided only to the employee.
    Employers' Disclosure of Information: Genetic information must be 
kept strictly confidential and maintained separately from personnel 
files and other employee information. It should be disclosed only to 
the employee, officials enforcing this legislation, or as required by 
other federal laws.
    Insurance Discrimination: Insurers must not be permitted to make 
decisions about enrollment in health, life, disability, or other types 
of insurance based on genetic information. They must also be prohibited 
from using genetic information in determining premium or contribution 
rates, or other terms or conditions of coverage. They must be barred 
from requesting or requiring genetic tests.
    Collection of Information by Insurers: Insurers must not be 
permitted to request, require, collect or buy genetic information 
except for the limited purpose of paying for claims for genetic testing 
or other genetic services. Strict protections must ensure that when 
such information is requested, it is not used to affect an individual's 
enrollment, premiums, or terms or benefits of coverage.
    Disclosure of Information by Insurers: Insurers must be prohibited 
from disclosing genetic information to employers, entities that collect 
or disseminate insurance information, or health plans or health 
insurance issuers except in the limited circumstance of payment for 
claims.
    Health Care Discrimination: Legislation must bar health care 
providers from refusing treatment to individuals, or treating them 
differently, based on genetic information.
    Collection of Information by Health Care Providers: Legislation 
must prohibit health care providers from requiring, requesting, or 
collecting genetic information about individuals who are seeking 
treatment. Providers may only collect this information for the purpose 
of providing genetic testing or other genetic services.
    Disclosure of Information by Health Care Providers: Health care 
providers must not be permitted to disclose genetic information except 
to the patient, to insurers only for the limited purpose of seeking 
payment for genetic testing or genetic services rendered, to officials 
enforcing this legislation, or as required by other federal laws.
    Education and Technical Assistance: Funding should be provided for 
education and technical assistance in order to ensure that individuals 
affected by the legislation are aware of its requirements.
    Effective Enforcement: A private right of action to enforce genetic 
discrimination legislation must be included. The EEOC should have 
authority to investigate and resolve complaints relating to employment. 
The full range of remedies, including attorney's fees, must be 
available.
    Relationship to Other Laws: Legislation must not preempt existing 
state or federal laws to the extent that they provide greater 
protections for individuals who experience genetic discrimination.
          Position Paper on Genetic Discrimination Legislation
Introduction
    The National Council on Disability (NCD) is an independent federal 
agency that advises the President and Congress on issues affecting 54 
million Americans with physical and mental disabilities. NCD's 
fundamental purpose is to promote policies, programs, practices, and 
procedures that guarantee equal opportunity for all individuals with 
disabilities, regardless of the nature or severity of the disability; 
and to empower individuals with disabilities to achieve economic self-
sufficiency, independent living, inclusion, and integration into all 
aspects of society.
    For a number of years, NCD has recognized the harmful effects of 
discrimination based on individuals' genetic information and supported 
the need for federal legislation prohibiting genetic discrimination as 
well as the enforcement of existing legislation that may prohibit 
certain types of genetic discrimination. It has addressed the issue of 
genetic discrimination in several reports, including the following:
      Achieving Independence: The Challenge for the 21st 
Century. July 26, 1996 (expressing serious concern about the quandaries 
and implications of obtaining and using genetic information; calling 
for further examination of the interface of genetic testing practices 
with antidiscrimination law and access to health insurance for people 
with disabilities).
      National Disability Policy: A Progress Report. July 26, 
1996 Oct. 31, 1997 (noting the potential for discrimination based on 
genetic information in employment, health care and other areas, and 
urging the President to work with Congress to enact legislation 
outlawing genetic discrimination and restricting access to genetic 
information by employers, insurance carriers and others).
      National Disability Policy: A Progress Report. Nov. 1999 
Nov. 2000 (applauding the Clinton Administration for issuing an 
executive order prohibiting certain types of genetic discrimination by 
federal employers, and urging the prompt reintroduction of legislation 
prohibiting genetic discrimination by employers and health insurers).
      Promises to Keep: A Decade of Federal Enforcement of the 
Americans with Disabilities Act. June 27, 2000 (supporting the U.S. 
Equal Employment Opportunity Commission's (EEOC) position on genetic 
discrimination in its guidance on the definition of disability, which 
considered an individual discriminated against based on a genetic 
predisposition to disease or disability to be a person with a 
disability protected by the Americans with Disabilities Act (ADA) by 
virtue of being ``regarded as'' substantially limited in a major life 
activity; calling for technical assistance from federal agencies in 
emerging areas of ADA policy and enforcement such as genetic 
discrimination).
    NCD's interest in genetic discrimination legislation stems partly 
from the fact that the need for this legislation arises due to narrow 
judicial interpretations of ADA, and these same interpretations also 
create the need for legislation to restore protections for individuals 
who have actually developed health conditions. NCD believes that the 
concerns of individuals with actual health conditions have not been 
fully addressed in the dialogue about legislative proposals to address 
genetic discrimination.
The Need for Federal Legislation Prohibiting Genetic Discrimination
Recent Advances in Genetic Research Have Brought Increasing Potential 
        for Genetic Discrimination
    Recent years have brought dramatic scientific advances in the study 
of human genetics. Scientists have mapped out DNA sequences in the 
human body and have identified many genes that cause disease. 
Consequently, they have been able to use genetic testing to identify 
individuals who may be susceptible to many diseases that are 
genetically linked.\1\ Tests now exist that are able to detect genetic 
predispositions for many diseases and illnesses, such as Huntington's 
Disease, breast cancer, cystic fibrosis, Alzheimer's disease, colon 
cancer, and Parkinson's disease.\2\ The number of conditions that may 
be detected by genetic tests is rapidly growing.\3\ While these genetic 
advances hold tremendous potential for early identification, prevention 
and treatment of disease, they also create opportunities for 
discrimination against individuals based on their genetic information, 
even where individuals have no symptoms of disease.
---------------------------------------------------------------------------
    \1\ Deborah Gridley, Note, Genetic Testing Under ADA: A Case for 
Protection from Employment Discrimination, 89 Georgetown Law Journal 
973, 976 (2001).
    \2\ Id. at 975; Testimony of Mary Davidson, Executive Director of 
Genetic Alliance, before U.S. House of Representatives Subcommittee on 
Commerce, Trade and Consumer Protection of the Committee on Energy and 
Commerce (July 11, 2001).
    \3\ Testimony of Mary Davidson, supra note 2.
---------------------------------------------------------------------------
    In recent testimony before Congress, Dr. Francis Collins, Director 
of the National Human Genome Research Institute at the National 
Institutes of Health, observed:
        while genetic information and genetic technology hold great 
        promise for improving human health, they can also be used in 
        ways that are fundamentally unjust. Genetic information can be 
        used as the basis for insidious discrimination. . . . The 
        misuse of genetic information has the potential to be a very 
        serious problem, both in terms of people's access to employment 
        and health insurance and the continued ability to undertake 
        important genetic research.\4\
---------------------------------------------------------------------------
    \4\ Congressional Research Service, Genetic Information: Legal 
Issues Relating to Discrimination and Privacy, Report No. RL30006 (July 
19, 2001) (hereafter ``Congressional Research Service Report''), at 2.
---------------------------------------------------------------------------
Genetic Discrimination is a Historical and Current Reality
    Discrimination based on genetic information is not a new 
phenomenon. During the early 1970s, employers used genetic screening to 
identify and exclude African Americans carrying a gene mutation for 
sickle cell anemia.\5\ These individuals were denied jobs despite the 
fact that many of them were healthy and never developed the disease.\6\ 
During the same time period, individuals who were carriers of sickle 
cell anemia were also discriminated against by several insurance 
companies despite the fact that they were asymptomatic.\7\
---------------------------------------------------------------------------
    \5\ Department of Labor, Department of Health and Human Services, 
Equal Employment Opportunity Commission, Department of Justice, Genetic 
Information and the Workplace (Jan. 20, 1998) (hereafter ``Joint 
Government Report''), at 3.
    \6\ Id.
    \7\ E. Virginia Lapham et al., Genetic Discrimination: Perspectives 
of Consumers, 274 Science 621 (1996).
---------------------------------------------------------------------------
    Genetic discrimination by employers and insurers has continued to 
be a systemic problem. According to a 1989 survey conducted by 
Northwestern National Life Insurance Company, 15 percent of the 
companies surveyed indicated that by the year 2000, they planned to 
check the genetic status of prospective employees and their dependents 
before making employment offers.\8\
---------------------------------------------------------------------------
    \8\ Larry Gostin, Genetic Discrimination: The Use of Genetically 
Based Diagnostic and Prognostic Tests by Employers and Insurers, 17 
American Journal of Law & Medicine 109, 116 (1991).
---------------------------------------------------------------------------
    A 1996 survey of individuals at risk of developing a genetic 
condition and parents of children with specific genetic conditions 
indicated more than 200 instances of genetic discrimination reported by 
the 917 respondents. The discrimination was practiced by employers, 
insurers, and other organizations.\9\ Another survey of genetic 
counselors, primary care physicians, and patients identified 550 
individuals who were denied employment or insurance based on genetic 
information.\10\ A study on genetic discrimination, published in 1996, 
found that health and life insurance companies, health care providers, 
blood banks, adoption agencies, the military, and schools engaged in 
genetic discrimination against asymptomatic individuals.\11\
---------------------------------------------------------------------------
    \9\ Joint Government Report, supra note 5, at 2.
    \10\ Id.
    \11\ Congressional Research Service Report, supra note 4, at 3.
---------------------------------------------------------------------------
    Science magazine reported that in a study of 332 individuals with 
one or more family members with a genetic disorder who are affiliated 
with genetic support groups, 40 percent of the respondents recalled 
being specifically asked about genetic diseases or disabilities on 
their applications for health insurance.\12\ Twenty-two percent of the 
respondents said they or a family member were refused health insurance 
as a result of the genetic condition in the family.\13\ Fifteen percent 
of the respondents reported that they or affected family members had 
been asked questions about genetic diseases or disabilities on 
employment applications.\14\ Thirteen percent reported that they or a 
family member had been denied a job or fired from a job because of a 
genetic condition in the family, and 21 percent reported being denied a 
job or fired due to their own genetic disorder.\15\
---------------------------------------------------------------------------
    \12\ Lapham et al., supra note 7, at 622.
    \13\ Id. at 624.
    \14\ Id. at 626.
    \15\ Id.
---------------------------------------------------------------------------
    In addition to these and other studies, numerous anecdotal examples 
of genetic discrimination by employers and insurers have been detailed 
in testimony before Congress in hearings about genetic discrimination.
Genetic Discrimination Undermines the Purposes of Genetic Research and 
        Testing
    The misuse of genetic information not only excludes qualified 
individuals from employment and denies insurance coverage to 
individuals without justification, but also undercuts the fundamental 
purposes of genetic research. Such research has been undertaken with 
the goals of early identification, prevention and effective treatment 
of disease. These goals will be undermined if fear of discrimination 
deters people from genetic diagnosis and prognosis, makes them fearful 
of confiding in physicians and genetic counselors, and makes them more 
concerned with loss of a job or insurance than with care and 
treatment.\16\
---------------------------------------------------------------------------
    \16\ Gostin, supra note 8, at 113.
---------------------------------------------------------------------------
    The fears engendered by genetic discrimination fears of disclosure 
of genetic information to physicians and of participation in genetic 
testing and research have been well documented in numerous studies. In 
one study, 83 percent of the participants indicated that they would not 
want their insurers to know if they were tested and found to be at high 
risk for a genetic disorder.\17\ In a 1997 survey of more than 1,000 
individuals, 63 percent of the participants reported that they would 
not take genetic tests for diseases if health insurers or employers 
could get access to the results.\18\ Additionally, researchers 
conducting a Pennsylvania study to determine how to keep women with 
breast cancer gene mutations healthy reported that nearly one third of 
the women invited to participate in the study declined out of fear of 
discrimination or loss of privacy.\19\ The results of a national survey 
released by the California HealthCare Foundation in 1999 indicate that 
15 percent of adults surveyed took steps to keep genetic information 
private, such as paying for testing out of pocket rather than using 
their insurance coverage, constantly switching doctors to avoid the 
compilation of a comprehensive medical history, refusing to seek needed 
medical care, and/or providing false or incomplete information to 
physicians.\20\ Another study showed that 57 percent of surveyed 
individuals at risk for breast or ovarian cancer had chosen not to take 
a needed genetic test, and 84 percent of those individuals who had 
decided to forego the test cited fear of genetic discrimination as a 
major reason for their decision.\21\
---------------------------------------------------------------------------
    \17\ Lapham et al., supra note 7, at 622.
    \18\ Joint Government Report, supra note 5, at 2.
    \19\ Id.
    \20\ Genetic Alliance, The Insured, the Underinsured, and the 
Uninsurable: the Role of Genetics in Health Care Coverage (Oct. 2001) 
(unpublished), at 2-3.
    \21\ Caryn Lerman et al., BRCA1 testing in families with hereditary 
breast-ovarian cancer. A prospective study of patient decision making 
and outcomes, 275 Journal of American Medical Ass'n 1885 (1996). In 
another study, concern about health insurability was the leading reason 
for individuals' decisions to decline cancer genetic counseling 
services. Katherine P. Geer et al., Factors Influencing Patients' 
Decisions to Decline Cancer Genetic Counseling Services, 10 Journal of 
Genetic Counseling 25 (2001).
---------------------------------------------------------------------------
    These fears eliminate people's opportunities to learn that they are 
not at increased risk for the genetic disorder in the family or to make 
lifestyle changes to reduce risks.\22\ They may also affect the number 
of people willing to participate in scientific research.\23\
---------------------------------------------------------------------------
    \22\ Lapham et al., supra note 7, at 622.
    \23\ Id.
---------------------------------------------------------------------------
Genetic Test Information Has Little Value for Purposes of Making 
        Employment Decisions and Insurance Decisions
    There is no consensus on the scientific validity of genetic tests 
or their usefulness for predicting an individual's susceptibility to 
exposure.\24\ The results of genetic-based diagnosis and prognosis are 
uncertain for many reasons. First, the sensitivity of genetic testing 
is limited by the known mutations in a target population. Many 
individuals with a genetic predisposition for a particular disease will 
not be identified because these markers are not among the known genetic 
mutations.\25\ Secondly, many individuals are falsely labeled ``at 
risk'' due to the genetic screening of family members.\26\ Thirdly, 
genetic markers are generally not valid predictors of the nature, 
severity and course of disease. For most genetic disease, the onset 
date, severity of symptoms, and efficacy of treatment and management 
are highly variable, with some people identified by screening remaining 
symptom-free and others progressing to disabling illness.\27\ Genetic 
tests alone cannot predict with certainty whether an individual with a 
particular genetic error will actually develop a disease.\28\ These 
tests evaluate people according to stereotypes of future ability to 
function and the probability that disease will occur, rather than 
evidence of actual disease and ability.\29\
---------------------------------------------------------------------------
    \24\ Joint Government Report, supra note 5, at 3.
    \25\ Gostin, supra note 8, at 113.
    \26\ Id. at 114.
    \27\ Id.
    \28\ Joint Government Report, supra note 5, at 1; Elaine Draper, 
The Screening of America: The Social and Legal Framework of Employers' 
Use of Genetic Information, 20 Berkeley Journal of Employment & Labor 
Law 286, 290-91 (1999).
    \29\ Draper, supra note 28, at 290.
---------------------------------------------------------------------------
Existing Laws Are Insufficient to Protect Individuals from Genetic 
        Discrimination
    There are existing laws that may prohibit genetic discrimination in 
some contexts. However, these laws do not reach much of the 
discrimination that occurs and, in some cases, may be interpreted not 
to apply to genetic discrimination at all.
The Americans with Disabilities Act\30\
---------------------------------------------------------------------------
    \30\ The analysis of ADA's application to genetic discrimination in 
employment also applies to Section 504 of the Rehabilitation Act, which 
applies to federal employers and entities receiving federal funds. 
Section 504 has the same definition of disability as that contained in 
ADA.
---------------------------------------------------------------------------
    The Americans with Disabilities Act (ADA), an anti-discrimination 
law, protects individuals who have an impairment that substantially 
limits them in a major life activity, who have a record of such an 
impairment, or who are regarded as having such an impairment.\31\ 
Congress intended ADA to cover individuals with a broad range of 
diseases, and some members of Congress explained at the time of ADA's 
passage that it would protect people who experience discrimination on 
the basis of predictive genetic information where those individuals 
were regarded as having a disability.\32\ ADA has also been interpreted 
by EEOC to prohibit some forms of genetic discrimination. In 1995, the 
EEOC issued enforcement guidance advising that an employer who takes 
adverse action against an individual on the basis of genetic 
information may regard the individual as having a disability and, 
therefore, may be violating ADA.\33\ EEOC recently settled its first 
court action challenging an employer's use of genetic testing\34\ and 
also issued a finding of cause in an administrative complaint filed by 
a woman who was terminated based on a genetic test result.\35\
---------------------------------------------------------------------------
    \31\ 42 U.S.C. Sec. 12102(2).
    \32\ 136 Cong. Rec. H4627 (statement of Rep. Waxman).
    \33\ Joint Government Report, supra note 5, at 6; EEOC Compliance 
Manual Sec. 902, Order 915.002, 902-45 (1995).
    \34\ EEOC v. Burlington Northern Santa Fe Railroad, Civ. No. 01-
4013 MWB (N.D. Iowa Apr. 23, 2001) (Agreed Order). The Railroad, which 
had tested for carpal tunnel syndrome propensity, agreed to stop 
requiring genetic tests, using genetic information relating to its 
employees, and disclosing such information to the public.
    \35\ Congressional Research Service Report, supra note 4, at 9 
(describing complaint filed by Terri Sergeant alleging a violation of 
ADA based on her termination after being diagnosed with Alpha 1 
Antitrypson Deficiency).
---------------------------------------------------------------------------
    Nonetheless, ADA is a highly problematic vehicle for fully 
addressing genetic discrimination. At recent Senate hearings, EEOC 
Commissioner Paul Steven Miller testified that while ADA could be 
interpreted to prohibit employment discrimination based on genetic 
information, it ``does not explicitly address the issue and its 
protections are limited and uncertain.''\36\
---------------------------------------------------------------------------
    \36\ Id.
---------------------------------------------------------------------------
    ADA could be interpreted to protect individuals with genetic 
markers for disease in two ways. First, as described above, such 
individuals may be protected if they are regarded as substantially 
limited in a major life activity B for example, if they are regarded as 
substantially limited in working due to their genetic predisposition. 
However, recent Supreme Court cases discussing what it means to be 
regarded as substantially limited in working suggest that such claims 
are extremely unlikely to succeed. In Sutton v. United Airlines, 
Inc.\37\ and Murphy v. United Parcel Service, Inc.,\38\ the Court 
stated that a job requirement excluding individuals based on their 
impairments does not necessarily establish that the employer regards 
individuals excluded by this requirement as substantially limited in 
working. To be covered under the ``regarded as'' prong, the plaintiffs 
would have to prove that they were regarded as substantially limited in 
performing a broad class of jobs, not merely their own jobs. It may 
prove extremely difficult for plaintiffs with genetic markers who are 
denied employment due to an employer's concern about health insurance 
premiums or productivity losses to show that the employer regarded them 
as substantially limited in performing not only the job in question but 
a broad class of other jobs as well.
---------------------------------------------------------------------------
    \37\ 527 U.S. 471, 473-74 (1999).
    \38\ 527 U.S. 516, 516-17 (1999).
---------------------------------------------------------------------------
    Individuals who experience genetic discrimination may also be 
covered under ADA if they are regarded as substantially limited in 
other major life activities besides working. It is unlikely that most 
plaintiffs will be able to establish the requisite proof to prevail on 
such claims. Most courts have interpreted ``substantially limited'' so 
restrictively that an individual must be extremely debilitated.\39\ 
Moreover, the courts have interpreted ADA to require consideration of 
any measures that an individual takes to control the effects of her 
limitations.\40\ Thus, it is unlikely that an individual with a genetic 
predisposition for a disease, but who has not actually developed the 
disease, will be able to show that he was regarded as substantially 
limited in any major life activity.
---------------------------------------------------------------------------
    \39\ For a discussion of how the courts have interpreted ADA far 
more restrictively than Congress intended, see Chai Feldblum, 
Definition of Disability Under Federal Anti-Discrimination Law: What 
Happened? Why? And What Can We Do About It?, 21 Berkeley Journal of 
Labor & Employment 91 (2000).
    \40\ Sutton v. United Airlines, Inc., 527 U.S. at 481-88; Murphy v. 
United Parcel Service, 527 U.S. at 521.
---------------------------------------------------------------------------
    An individual who experiences genetic discrimination may also be 
covered by ADA under the first prong of the definition of disability--
that is, by showing that she has an actual impairment that 
substantially limits her in a major life activity. In Bragdon v. 
Abbott,\41\ the Supreme Court held that an individual with asymptomatic 
HIV was covered under the first prong because she was substantially 
limited in reproduction due to the risk of transmitting HIV to a fetus. 
The Court found that the asymptomatic HIV was a physical impairment 
based on the physiological effects of the infection. It is unclear, 
however, whether courts would find a genetic marker to constitute an 
actual impairment.
---------------------------------------------------------------------------
    \41\ 524 U.S. 624 (1998).
---------------------------------------------------------------------------
    Even assuming ADA did apply, in many situations it might not 
prevent employers from accessing genetic information. While ADA does 
bar medical inquiries before a conditional offer of employment is made, 
it would permit employers to request genetic information if they could 
establish that the information was job-related and consistent with 
business necessity.\42\
---------------------------------------------------------------------------
    \42\ 42 U.S.C. Sec. 12112(c); Congressional Research Service 
Report, supra note 4, at 13.
---------------------------------------------------------------------------
The Health Insurance Portability and Accountability Act
    The Health Insurance Portability and Accountability Act (HIPAA) 
prohibits genetic discrimination by insurers in very limited 
circumstances. It prohibits group health plans from using any health 
status-related factor, including genetic information, as a basis for 
denying or limiting coverage or for charging an individual more for 
coverage.\43\ However, a plan may still establish limitations on the 
amount, level, extent or nature of benefits or coverage provided to 
similarly situated individuals.\44\ Thus, plans may still provide 
substantially fewer services even though they may not charge more for 
coverage. In addition, privacy regulations issued pursuant to HIPAA 
require patient consent for most sharing of personal health information 
by health insurers, providers, and health care clearinghouses. 
Companies that sponsor health plans are prohibited from accessing 
personal health information for employment purposes unless the patient 
consents. These provisions do little to prevent genetic discrimination 
in the workplace and, while they do prohibit some forms of genetic 
discrimination by insurers, that protection is extremely limited.
---------------------------------------------------------------------------
    \43\ 29 U.S.C. Sec. 1182(a)(1), 1182(b)(1).
    \44\ Id. Sec. 1182(a)(2)(B).
---------------------------------------------------------------------------
Title VII
    Race and gender discrimination laws may apply to certain forms of 
genetic discrimination as well.\45\ For example, Title VII of the Civil 
Rights Act of 1964, which prohibits employment discrimination based on 
race or gender, may prohibit employers from denying employment based on 
genetic markers linked to race, such as that for sickle cell anemia, or 
linked to gender, such as those for breast or ovarian cancer. Some 
courts have said in dicta that employment classifications based on 
sickle cell anemia would create a disparate impact on African 
Americans, but no lawsuit has successfully been brought challenging 
such classifications under Title VII.\46\ At least one court has 
rejected such a claim.\47\
---------------------------------------------------------------------------
    \45\ See Gostin, supra note 8, at 109; Congressional Research 
Service Report, supra note 4, at 30 n.8.
    \46\ Gostin, supra note 8, at 138.
    \47\ Id. at 138-39.
---------------------------------------------------------------------------
State Laws
    A number of states have passed state laws that prohibit certain 
forms of genetic discrimination. These laws, however, vary widely in 
the scope of their protection.\48\ Many are narrowly targeted to 
particular genetic conditions, some prohibit only certain types of 
screening but do not prohibit adverse employment actions based on 
genetic information, and some only address genetic counseling and 
confidentiality.\49\ These laws have been described as ``a patchwork of 
provisions which are incomplete, even inconsistent, and which fail to 
follow a coherent vision for genetic screening, counseling, treatment 
and prevention of discrimination.''\50\
---------------------------------------------------------------------------
    \48\ Joint Government Report, supra note 5, at 8.
    \49\ Gridley, supra note 1, at 980-81.
    \50\ Gostin, supra note 8, at 142.
---------------------------------------------------------------------------
    In light of the inadequacies of federal and state law to address 
genetic discrimination issues, comprehensive federal legislation that 
specifically addresses these issues is necessary.
Principles for Genetic Discrimination Legislation
    NCD believes that it is crucial for any proposed legislation 
addressing genetic discrimination to reflect the following principles:
   Workplace Discrimination:
    Any proposed legislation must provide effective prohibitions 
against discrimination by employers based on genetic information. 
Employers must not be permitted to use predictive genetic information 
as a basis for hiring, firing, or taking any other employment action, 
or as a term or condition of employment. Nor should an employer be 
permitted to use this information, or be permitted to limit, segregate 
or classify employees or job applicants. This information should not be 
permitted to play a role in an employment agency's referral of 
individuals for employment; in decisions by a labor organization about 
admission to its membership; or in admission to or employment by a 
training program.
   Collection and Disclosure of Genetic Information by Employers:
    Any proposed legislation must contain strict limits on the 
collection and disclosure of genetic information by employers so as to 
prevent that information from being used for discriminatory purposes. 
Employers must not be permitted to collect genetic information except 
under very limited circumstances that will be used only to benefit 
employees and only on a voluntary basis.
    Specifically, employers should be permitted to request predictive 
genetic information only: (1) for the purpose of monitoring effects of 
toxic substances in the workplace, and only if an employee has provided 
written consent to such monitoring, the employee is informed of the 
results, the monitoring conforms to national standards, and the 
employer does not receive results for particular individuals but rather 
receives only aggregate results for all individuals monitored; and (2) 
for the purpose of providing genetic services to employees, but only if 
such services are provided with the employee's written consent and only 
the employee receives the results.
    Additionally, employers must maintain strict confidentiality of 
genetic information of applicants or employees that is in the 
employers' possession. Genetic information should be kept confidential 
and maintained separately from personnel files and other non-
confidential information. It should be disclosed only to the employee, 
to officials enforcing this legislation, or as required by other 
federal laws.
   Insurance Discrimination:
    Any proposed legislation should contain comprehensive protection 
against genetic discrimination by providers of health, life, 
disability, and other types of insurance. Legislation must bar insurers 
from making decisions about enrollment based on genetic information. It 
must also prohibit insurers from using genetic information in 
determining premium or contribution rates, or other terms or conditions 
of coverage. Finally, it must bar insurers from requesting or requiring 
an individual to undergo genetic testing.
   Collection and Disclosure of Genetic Information by Insurers:
    Any proposed legislation must prohibit insurers from requiring, 
requesting, collecting, or buying genetic information about individuals 
who are covered or seeking coverage.
    Insurers should be permitted, however, to obtain this information 
only for the limited purpose of paying for claims for genetic testing 
or other genetic services. Strict protections must be in place to 
ensure that when such information is requested, it is not used to 
affect an individual's enrollment, premiums, or terms or benefits of 
coverage.
    Insurers must also be prohibited from disclosing genetic 
information to health plans or issuers of health insurance (except in 
the limited circumstances described above where the information is used 
for purposes of payment of claims), employers, and entities that 
collect and disseminate insurance information.
   Health Care Provider Discrimination:
    Any proposed legislation should protect against genetic 
discrimination by health care providers. Health care providers must not 
be permitted to refuse treatment to individuals, or treat them 
differently, based on genetic information. For example, ``futile care'' 
policies, under which medically indicated treatments may be denied 
based on determinations that such treatments would be ``futile'' in 
light of an individual's expected quality of life, should be prohibited 
to the extent that they result in denials of treatment based on genetic 
information.
   Collection and Disclosure of Genetic Information by Health Care 
        Providers:
    Any proposed legislation must prohibit health care providers from 
requiring, requesting, or collecting genetic information about 
individuals who are seeking treatment. Providers may only collect this 
information for the purpose of providing genetic testing or other 
genetic services.
    Health care providers must not be permitted to disclose genetic 
information except to the patient, to insurers only for the limited 
purpose of seeking payment for genetic testing or genetic services 
rendered, to officials enforcing this legislation, or as required by 
other federal laws.
   Education and Technical Assistance:
    Any proposed legislation should include funding to permit education 
and technical assistance to be provided by appropriate organizations in 
order to ensure that individuals affected by the legislation are aware 
of its requirements. Such assistance is important to ensure effective 
enforcement of the legislation.
   Effective Enforcement Mechanisms:
    Any proposed legislation must contain a private right of action for 
individuals to enforce its provisions. Additionally, EEOC should have 
the authority to investigate and resolve complaints of violations of 
the employment provisions of the law. In order to be effective, the 
legislation must provide for the full panoply of legal remedies, 
including attorney's fees.
   Relationship to Other Laws:
    Any proposed legislation must serve as a set of minimum standards 
that do not preempt more stringent standards that may exist in other 
laws. Thus, the legislation must not preempt stronger state laws. 
Similarly, it must not preempt other federal laws that may be 
applicable where those laws provide stronger protection against genetic 
discrimination.
   Addressing Protections for Individuals with Actual Health 
        Conditions:
    As discussed above, courts have interpreted ADA in a number of ways 
that severely restrict the number of people protected.\51\ They have 
interpreted ADA to protect only individuals who are so limited in major 
life activities that they are extremely debilitated, and to exclude 
protection for many individuals who take mitigating measures to control 
the effects of their impairments. They have made it extraordinarily 
difficult for individuals to establish that an employer regards them as 
substantially limited in working. These interpretations of ADA have 
resulted in far more limited protection than Congress envisioned when 
it passed ADA.
---------------------------------------------------------------------------
    \51\ See Feldblum, supra note at 39.
---------------------------------------------------------------------------
    The same interpretations that make ADA difficult to enforce by 
individuals with genetic markers make it difficult to enforce by 
individuals with a range of health conditions. When Congress considers 
protections for individuals who experience discrimination based on 
genetic information, it should also ensure that if these individuals 
are eventually diagnosed with medical conditions, they will be 
protected against discrimination.
                                 ______
                                 

              Statement of FORCE, Submitted for the Record

    FORCE: Facing Our Risk of Cancer Empowered is a national 
organization representing the concerns of the estimated 500,000 
Americans with hereditary predisposition to breast and ovarian cancer. 
Our organization urges the House to vote on S.1053, the Genetic 
Information Nondiscrimination Act. Our members are concerned citizens 
who have been impacted by hereditary cancer. They favor passage of this 
comprehensive bill to protect individuals from insurance and employment 
discrimination on the basis of predictive genetic test results.
    Current laws such as HIPAA do not go far enough to protect 
citizen's rights. The general population still feels vulnerable to the 
possibility of discrimination. By passing this bill, Congress will be 
making a strong statement that discrimination based on genetic 
information is unacceptable. As genetic research progresses and more 
disease-predisposing genes are identified, it is important that genetic 
discrimination is outlawed. Individuals who have already had gene 
testing and those who might choose to be tested in the future must be 
protected from possible discrimination.
    Genetic testing is improving the lives of thousands of Americans, 
providing information on how to prevent future health problems, and 
cope more effectively with unavoidable conditions. Nevertheless, under 
current law, many people are afraid to be tested or to participate in 
research that will lead to better prevention and treatment of diseases. 
They fear that their genetic information will be misused by employers 
and health insurers.
    Our organization strongly endorses the passage of a comprehensive 
federal legislation to prohibit genetic discrimination in health 
insurance and employment. We urge the House of Representatives to call 
a house vote on S1053. Passage of a nondiscrimination bill will save 
lives by removing a significant barrier to patients availing themselves 
to genetic testing.
    Thank you in advance for your consideration of this matter. We hope 
that you will keep the best interests of your constituents in mind and 
take immediate action to pass this bill.
                                 ______
                                 

Statement of the Association of Women's Health, Obstetric and Neonatal 
                    Nurses, Submitted for the Record

    The Association of Women's Health, Obstetric and Neonatal Nurses 
(AWHONN) appreciates the opportunity to comment on the issue of Genetic 
Discrimination. AWHONN is a membership organization of 22,000 nurses 
whose mission is to promote the health of women and newborns.
    AWHONN members are registered nurses, nurse practitioners, 
certified nurse-midwives, and clinical nurse specialists who work in 
hospitals, physicians' offices, universities and community clinics 
across North America as well as in the Armed Forces around the world.
    Last October the United States Senate took historic action when it 
passed S.1053, the ``Genetic Information Nondiscrimination Act'' by a 
margin of 95-0. The bill's passage was the result of years of hard work 
and bi-partisan compromise. The legislation establishes strong 
protections against discrimination based on genetic information both in 
health insurance and employment.
    The bill prohibits health insurance enrollment restriction and 
premium adjustment on the basis of genetic information and prevents 
health plans and insurers from requesting or requiring than an 
individual take a genetic test. The bill also prohibits discrimination 
in hiring, compensation and other personnel processes, prohibits the 
collection of genetic information and covers employers, employment 
agencies, labor organizations and training programs.
    The benefits of genetic testing are enormous and science is 
revealing genetic markers for many different ailments at an increasing 
rate. Research has already identified genetic markers for conditions 
including cancer, diabetes, Alzheimer's disease, Huntington's Disease 
and cystic fibrosis.\1\ Unfortunately, the same science that can help 
reveal an individual's predisposition to certain health problems may 
also open the door to discrimination. No individual should have to 
choose between the benefits of genetic testing and keeping a job or 
health insurance.
---------------------------------------------------------------------------
    \1\ Mary Davidson testimony--cancers, Alzheimers. For CF, see i.e 
http://odp.od.nih.gov/consensus/cons/106/106statement.htm.
---------------------------------------------------------------------------
    The House needs to take immediate steps to act on this 
legislation--the fear of genetic discrimination has prompted many 
Americans to avoid genetic tests that could literally save their lives. 
By providing patients with this type of health information, we empower 
them to seek appropriate treatment options and/or lifestyle changes 
that can prevent disease onset. As a nursing organization whose mission 
is advancing women and newborn health, AWHONN recognizes the need for 
comprehensive federal legislation that protects individuals from 
genetic discrimination and believes that the ``Genetic Information 
Nondiscrimination Act'' passed by the Senate will provide strong 
protection against access to and misuse of genetic information.
    The House must act now and take action on the Senate version of the 
``Genetic Information Nondiscrimination Act'' to help secure the health 
and well-being of all Americans.
    Thank you for the opportunity to submit testimony on this crucial 
legislation.
                                 ______
                                 

Statement of the American Society of Human Genetics, Submitted for the 
                                 Record

    The American Society of Human Genetics (ASHG) has endorsed the 
passage of federal legislation to prohibit discrimination in health 
insurance and employment on the basis of genetic information. ASHG 
commends the bipartisan enthusiastic passage of S. 1053 last year in 
the Senate, and urges similar House action.
    ASHG is the primary professional organization for human genetics in 
the Americas, representing nearly 8000 researchers, physicians, 
laboratory practice professionals, genetic counselors, nurses, and 
trainees actively engaged in genetics discovery, teaching and the 
development of health care applications and services derived from 
research findings.
    Our members are keenly aware of the challenges faced by individuals 
and families involved in genetic evaluation and diagnostic procedures 
at the rapidly evolving interface between biomedical research and 
health care. Many of us have personally experienced cases in which 
testing or its outcome led to adverse effects on insurance or 
employment. While the number of publicly documented cases of 
discrimination based on genotype may be considered small at this time, 
the rapid advances being made in genetics will provide more 
opportunities for persons to be adversely affected by test results. The 
potential misuse of genetic information by insurance companies and 
employers has also been an impediment in recruiting subjects for some 
research studies.
    From the geneticist's point of view, the absence of a federal 
standard that prohibits employment and health insurance discrimination 
based on genetic information results in:
    1.  difficulty in recruiting subjects into genetic research studies
    2.  patient avoidance of genetic services
    3.  underutilization of genetic testing
    4.  difficulty in obtaining insurance coverage when attempted
    5.  several cases recognized that have not resulted in legal action
    6.  significantly increased time and effort in genetic evaluation 
and counseling sessions resulting in increased service costs
    Many states have enacted some form of genetic non-discrimination 
legislation, but the laws are quite varied in their focus and scope. 
Federal legislation would assure individuals and families in our mobile 
society that neither health care coverage nor employment status would 
be jeopardized by their participation in genetic testing. Such 
protection will eliminate some of the concerns (real or perceived) that 
have deterred participating in genetic research studies or seeking 
genetic testing. This protection will speed the progress in 
understanding genetic disease and how we can prevent or treat these 
disorders.
    We appreciate the opportunity to comment on this important issue, 
and will work with you and your staff on any details necessary to 
accomplish the task.
                                 ______
                                 

 Statement of the American Osteopathic Association, Submitted for the 
                                 Record

    The American Osteopathic Association (AOA) represents the nation's 
54,000 osteopathic physicians. The AOA is pleased that the Subcommittee 
on Employer-Employee Relations of the House Committee on Education and 
the Workforce is holding a hearing on genetic nondiscrimination. It is 
an issue that will increasingly affect patients and physicians as 
further advances are made in the field of genetic testing.
    In 1997, the AOA House of Delegates adopted a policy prohibiting 
discrimination in employment, insurance, coverage, and access to care 
based on genetic information. The policy was reaffirmed in 2002.
    The completion of the Human Genome Project and genetic testing are 
contributing to advances in medical knowledge that hold great promise 
for the future in diagnosis, management, and treatment of the human 
condition. However, such knowledge can also provide the basis for 
unethical and discriminatory behavior in employment and insurance 
coverage.
    It is the position of the AOA that access to health care should not 
be restricted on the basis of genetic testing and that discrimination 
in employment on the basis of genetic testing should be prohibited. 
Furthermore, health care plans should be prohibited from restricting or 
denying coverage or raising premiums on the basis of genetic testing.
    We believe that patients must be able to discuss genetic testing 
options with their osteopathic physicians without fear of 
discrimination from employers, potential employers, or health care 
plans for having undergone such genetic testing or participating in 
clinical trials to test new therapies. We are concerned that there is 
no law on the books to prevent such discrimination.
    For the past several years, the AOA sent letters in support of 
genetic nondiscrimination legislation. Most recently, letters were sent 
to Senator Snowe (R-ME) in support of S.1053 that passed the Senate 
last year and Representative Slaughter (D-NY) in support of H.R.1910.
    As physicians, we understand the value of genetic research, 
testing, and therapy in the diagnosis and treatment of certain 
diseases. Our patients should not forego genetic testing or promising 
therapy out of fear of discrimination. We urge the House of 
Representatives to pass genetic nondiscrimination legislation. 
President Bush stated publicly that he supports S.1053 and is committed 
to enacting legislation to prohibit genetic discrimination in health 
insurance and employment.
    The President and the Senate have acted. It is now time for the 
House to act.
                                 ______
                                 

 Statement of The American Psychiatric Association, Submitted for the 
                                 Record

    The American Psychiatric Association (APA), the national medical 
specialty society, founded in 1844, whose over 35,000 psychiatric 
physician members specialize in the diagnosis and treatment of mental 
and emotional illnesses and substance use disorders, appreciates the 
opportunity to provide a statement on genetic non-discrimination. We 
thank the Committee for allowing us to provide this statement.
    Genetic testing offers tremendous promise in identifying current 
and potential future health risks. At the same time, we have 
significant concerns that Americans' genetic information could be 
misused. Our concerns are shared by a strong majority of Americans: a 
U.S. Department of Labor survey showed that 63 percent of respondents 
would refuse to take a genetic test if insurers or employers could 
access their private results.
    We believe Congress can help by passing the strongest possible 
enforceable genetic non-discrimination legislation. Employers and 
insurers should not be permitted to discriminate on the basis of a 
person's genetic profile and family history.
    Our concerns extend beyond patients' reluctance to take a genetic 
test. Such reluctance means that people are disinclined to participate 
in clinical studies that require genetic testing, hurting our efforts 
to identify causes and new treatments for diseases, including mental 
illnesses. Worse, some patients' reluctance could keep them from 
getting a proper diagnosis today, as well as potentially life-saving 
treatment. Perhaps the most pernicious potential consequence of not 
enacting a ban on genetic discrimination is that Americans could lose 
their jobs or their health insurance, based simply on their family 
history.
    Protecting patients' genetic information is essential to providing 
the highest quality medical care. We believe a patient's genetic 
information should only be used or disclosed by a health care plan, 
provider, or clearinghouse with the informed, voluntary, and non-
coerced consent of the patient. As our knowledge of genetics grows, 
especially through the Human Genome project, the possible misuses of 
genetic information will expand unless enforceable safeguards are 
enacted.
    The U.S. Senate voted 95-0 to pass the ``Genetic Information Non-
discrimination Act of 2003'' (S. 1053), with the support of President 
Bush. Similar but stronger legislation (H.R. 1910) is now cosponsored 
by 241 members of the House. Both bills would ban employers and 
insurers from discriminating on the basis of a person's genetic profile 
and family history. APA urges Congress to pass and the President to 
sign the strongest possible enforceable genetic non-discrimination 
legislation into law.
    Thank you for this opportunity to deliver this statement. Please 
call on the APA as a resource, as we would be happy to assist the 
Committee on the vital issue of genetic non-discrimination in any way.
                                 ______
                                 

   Statement of the American Cancer Society, Submitted for the Record

    Genetic research is one of the most exciting areas of scientific 
advancement today. As our knowledge about the genetic basis of common 
disorders grows, however, so does the potential for discrimination in 
health insurance and employment. This possibility can have a dramatic 
and chilling impact on patient care and research. For example, a 
genetic test exists for inherited breast cancer that allows healthy, 
high-risk women to find out whether they carry the altered gene so they 
can determine with their doctor whether to pursue available medical 
options. Unfortunately, many of these women may choose not to be tested 
for fear that the information could be used to deny them the health 
insurance coverage they need to fight disease or to deny them future 
employment.
    We need legislation that allows medical research to advance, while 
at the same time protects the rights and needs of patients and their 
family members. The American Cancer Society endorses the ``Genetic 
Nondiscrimination in Health Insurance and Employment Act'' now pending 
in the House (H.R. 1910) and its companion ``Genetic Information 
Nondiscrimination Act'' (S. 1053) in the Senate. These bills support 
the goal of allowing people to benefit from advances in genetic testing 
without fear of losing their heath insurance or job opportunities.
    Specifically, the legislation prohibits health insurance companies 
from denying or canceling health coverage on the basis of genetic 
information, using genetic information to determine insurance rates, 
and requesting or requiring genetic information or genetic tests. 
Decisions about genetic testing and results from genetic testing should 
be made by patients and their health care providers, without fear of 
negative consequences. The bills also provide important workplace 
protections, prohibiting employers and employment organizations from 
using genetic information as a means to deny or limit employment for 
individuals who they suspect may have an inherited predisposition to 
disease.
    The Senate has already taken a strong stand on the need for this 
type of legislation, passing S. 1053 overwhelmingly by 95-0 vote in 
October 2003. The American Cancer Society urges the House to take 
prompt action on this important legislation to ensure that critical 
patient protections are enacted before the end of this Congress.
                                 ______
                                 

 Letter from Lawrence Lorber Answering Follow-Up Questions, Submitted 
                             for the Record

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    Statement of Hon. Newt Gingrich, Former Speaker, U.S. House of 
               Representatives, Submitted for the Record

[GRAPHIC] [TIFF OMITTED] T4940.035

                                 ______
                                 


   Statement of Hon. Louise McIntosh Slaughter, a Representative in 
                  Congress from the State of New York

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                                 ______
                                 


 Statement of the Ovarian Cancer National Alliance, Submitted for the 
                                 Record
[GRAPHIC] [TIFF OMITTED] T4940.042

                                 ______
                                 


 Statement of the Catholic Health Association, Submitted for the Record

    The Catholic Health Association (CHA), the national leadership 
organization of more than 2,000 Catholic health care sponsors, systems, 
facilities, and related organizations, would like to commend the House 
Education and Workforce Subcommittee on Employer-Employee Relations, 
and its chairman, Representative Sam Johnson, for holding a hearing on 
the problem of genetic nondiscrimination.
    As the Subcommittee is no doubt aware, last year the United States 
Senate overwhelmingly passed the Genetic Information Nondiscrimination 
Act of 2003 (S 1053). CHA strongly supports this legislation, which we 
believe would serve as an important compliment to other federal and 
state laws that recognize the need to protect an individual's genetic 
information from being used in a discriminatory manner in the health 
insurance and employment markets.
    Specifically, the bill would:
      Prohibit health insurers from restricting enrollment or 
adjusting fees on the basis of predictive genetic information
      Bar health insurers and employers from requiring genetic 
testing and from obtaining predictive genetic information
      Prevent employers from discriminating based on genetic 
information in all areas of employment, including hiring and 
compensation
    Genetic science has seen marvelous growth over the past several 
years, and Catholic social teaching validates its use when respect for 
personal dignity, the defense of human life, and support of the common 
good is its goal. CHA believes that S 1053 reflects this principle. It 
is our hope that today's hearing will be the first step toward passage 
of the legislation by the House of Representatives before the end of 
the 108thCongress.
                                 ______
                                 

Statement of the Huntington's Disease Society of America, Submitted for 
                               the Record

    As staunch supporters of legislation banning genetic discrimination 
in the workplace and by health insurers, the Huntington's Disease 
Society of America (HDSA) urges Congress to schedule immediate House 
action on the ``Genetic Information Nondiscrimination Act'' (S.1053), 
which was unanimously passed by the Senate in November 2003.
    HDSA believes Genetic Nondiscrimination legislation must include 
strong and enforceable protections against wrongful discrimination in 
health insurance and employment so that individuals may utilize genetic 
testing in order to make critical life decisions as well as to be able 
to participate in clinical research without fear of consequence for 
themselves or their families. Individuals at risk for Huntington's 
Disease (HD) often elect to pay for testing out of pocket for fear of 
genetic discrimination.
    The Huntington's Disease Society of America urges Congress to pass 
comprehensive federal legislation prohibiting genetic discrimination. 
Genetic testing can improve our lives by providing information on how 
we can prevent future health problems, and cope more effectively with 
unavoidable conditions. But the ability to predict disease through 
genetic testing and family history opens the door for genetic 
discrimination, particularly in employment and health insurance.

Sincerely,

Huntington's Disease Society of America
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  Statement of the United Spinal Association, Submitted for the Record

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  Statement of the Coalition for Genetic Fairness, Submitted for the 
                                 Record

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