```

[House Hearing, 110 Congress]
[From the U.S. Government Publishing Office]

 
                        PROTECTING WORKERS FROM
                         GENETIC DISCRIMINATION

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

                                HEARING

                               before the

                        SUBCOMMITTEE ON HEALTH,
                     EMPLOYMENT, LABOR AND PENSIONS

                              COMMITTEE ON
                          EDUCATION AND LABOR

                     U.S. House of Representatives

                       ONE HUNDRED TENTH CONGRESS

                             FIRST SESSION

                               __________

            HEARING HELD IN WASHINGTON, DC, JANUARY 30, 2007

                               __________

                            Serial No. 110-1

                               __________

      Printed for the use of the Committee on Education and Labor

                       Available on the Internet:
      http://www.gpoaccess.gov/congress/house/education/index.html

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32-740 PDF                  WASHINGTON : 2007
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                    COMMITTEE ON EDUCATION AND LABOR

                  GEORGE MILLER, California, Chairman

Dale E. Kildee, Michigan, Vice       Howard P. ``Buck'' McKeon, 
    Chairman                             California,
Donald M. Payne, New Jersey            Ranking Minority Member
Robert E. Andrews, New Jersey        Thomas E. Petri, Wisconsin
Robert C. ``Bobby'' Scott, Virginia  Peter Hoekstra, Michigan
Lynn C. Woolsey, California          Michael N. Castle, Delaware
Ruben Hinojosa, Texas                Mark E. Souder, Indiana
Carolyn McCarthy, New York           Vernon J. Ehlers, Michigan
John F. Tierney, Massachusetts       Judy Biggert, Illinois
Dennis J. Kucinich, Ohio             Todd Russell Platts, Pennsylvania
David Wu, Oregon                     Ric Keller, Florida
Rush D. Holt, New Jersey             Joe Wilson, South Carolina
Susan A. Davis, California           John Kline, Minnesota
Danny K. Davis, Illinois             Bob Inglis, South Carolina
Raul M. Grijalva, Arizona            Cathy McMorris Rodgers, Washington
Timothy H. Bishop, New York          Kenny Marchant, Texas
Linda T. Sanchez, California         Tom Price, Georgia
John P. Sarbanes, Maryland           Luis G. Fortuno, Puerto Rico
Joe Sestak, Pennsylvania             Charles W. Boustany, Jr., 
David Loebsack, Iowa                     Louisiana
Mazie Hirono, Hawaii                 Virginia Foxx, North Carolina
Jason Altmire, Pennsylvania          John R. ``Randy'' Kuhl, Jr., New 
John A. Yarmuth, Kentucky                York
Phil Hare, Illinois                  Rob Bishop, Utah
Yvette D. Clarke, New York           David Davis, Tennessee
Joe Courtney, Connecticut            Timothy Walberg, Michigan
Carol Shea-Porter, New Hampshire

                     Mark Zuckerman, Staff Director
                   Vic Klatt, Minority Staff Director
                                 ------                                

         SUBCOMMITTEE ON HEALTH, EMPLOYMENT, LABOR AND PENSIONS

                ROBERT E. ANDREWS, New Jersey, Chairman

George Miller, California            John Kline, Minnesota,
Dale E. Kildee, Michigan               Ranking Minority Member
Carolyn McCarthy, New York           Howard P. ``Buck'' McKeon, 
John F. Tierney, Massachusetts           California
David Wu, Oregon                     Kenny Marchant, Texas
Rush D. Holt, New Jersey             Charles W. Boustany, Jr., 
Linda T. Sanchez, California             Louisiana
Joe Sestak, Pennsylvania             David Davis, Tennessee
David Loebsack, Iowa                 Peter Hoekstra, Michigan
Phil Hare, Illinois                  Cathy McMorris Rodgers, Washington
Yvette D. Clarke, New York           Tom Price, Georgia
Joe Courtney, Connecticut            Virginia Foxx, North Carolina
                                     Timothy Walberg, Michigan

                            C O N T E N T S

                              ----------                              
                                                                   Page

Hearing held on January 30, 2007.................................     1
Statement of Members:
    Andrews, Hon. Robert E., Chairman, Subcommittee on Health, 
      Employment, Labor and Pensions.............................     1
    Biggert, Hon. Judy, a Representative in Congress from the 
      State of Illinois..........................................    12
        Prepared statement of....................................    14
        March of Dimes letter....................................    61
    Clarke, Hon. Yvette D, a Representative in Congress from the 
      State of New York, prepared statement of...................    24
    Hare, Hon. Phil, a Representative in Congress from the State 
      of Illinois, prepared statement of.........................     6
    Kline, Hon. John, Senior Republican Member, Subcommittee on 
      Health, Employment, Labor and Pensions.....................     3
        Prepared statement of....................................     5
    Slaughter, Hon. Louise McIntosh, a Representative in Congress 
      from the State of New York.................................     7
        Prepared statement of....................................    10

Statement of Witnesses:
    Escher, David, former employee, Burlington Northern Santa Fe 
      Railroad...................................................    35
        Prepared statement of....................................    38
    Fishman, Burton J., partner, Fortney Scott LLP, Genetic 
      Information Nondiscrimination in Employment (GINE) 
      Coalition..................................................    45
        Prepared statement of....................................    47
    Pearson, Harriet, vice president of corporate affairs and 
      chief privacy officer, IBM Corp............................    39
        Prepared statement of....................................    42
    Rothenberg, Karen, Dean and Marjorie Cook Professor of Law, 
      University of Maryland School of Law.......................    30
        Prepared statement of....................................    33

             PROTECTING WORKERS FROM GENETIC DISCRIMINATION

                              ----------                              

                       Tuesday, January 30, 2007

                     U.S. House of Representatives

         Subcommittee on Health, Employment, Labor and Pensions

                    Committee on Education and Labor

                             Washington, DC

                              ----------                              

    The subcommittee met, pursuant to call, at 10:33 a.m., in 
room 2175, Rayburn House Office Building, Hon. Robert Andrews 
[chairman of the subcommittee] presiding.
    Present: Representatives Andrews, Kildee, Tierney, Wu, 
Holt, Sanchez, Sestak, Loebsack, Hare, Clarke, Courtney, Kline, 
McKeon, Marchant, Boustany, Hoekstra, Price, Foxx, and Walberg.
    Staff present: Tylease Alli, Hearing Clerk; Jody Calemine, 
Labor Policy Deputy Director; Molly Carter, Legal Intern, 
Education; Carlos Fenwick, Policy Advisor for Subcommittee on 
Health, Employment, Labor and Pensions; Michael Gaffin, Staff 
Assistant, Labor; Lamont Ivey, Staff Assistant, Education; 
Brian Kennedy, General Counsel; Danielle Lee, Press/Outreach 
Assistant; Stephanie Moore, General Counsel; Joe Novotny, Chief 
Clerk; Lisette Partelow, Staff Assistant, Education; Rachel 
Racusen, Deputy Communications Director; Michele Varnhagen, 
Labor Policy Director; Michael Zola, Chief Investigative 
Counsel, Oversight; Mark Zuckerman, Staff Director; Robert 
Borden, General Counsel; Kathryn Bruns, Legislative Assistant; 
Steve Forde, Communications Director; Ed Gilroy, Director of 
Workforce Policy; Rob Gregg, Legislative Assistant; Jessica 
Gross, Deputy Press Secretary; Taylor Hansen, Legislative 
Assistant; Victor Klatt, Staff Director; Jim Paretti, Workforce 
Policy Counsel; Molly McLaughlin Salmi, Deputy Director of 
Workforce Policy; and Linda Stevens, Chief Clerk/Assistant to 
the General Counsel.
    Chairman Andrews [presiding]. Ladies and gentlemen, the 
subcommittee will come to order.
    We want to welcome everyone to the subcommittee, which has 
been rechristened the Health, Employment, Labor and Pensions 
Subcommittee. We are delighted that you are all here with us.
    I want to say to my colleagues on the committee that I am 
humbled and honored to have the chance to work with you and 
lead the subcommittee. I hope to be worthy of your confidence 
and trust.
    One of the very first things that I did when I was given 
this opportunity was to meet with my friend and colleague, 
Congressman Kline from Minnesota, who will serve as the 
Republican ranking member. He and I have worked together on 
this committee as well as the Armed Services Committee. And I 
feel honored to have a chance to work with someone for whom I 
have so much respect.
    And it is our mutual agenda that we will conduct the 
business of the subcommittee fairly and in a way that benefits 
the people that we all represent. There will certainly be times 
when we have vigorous disagreements, but I am committed and I 
know Congressman Kline is committed to the notion that we will 
pursue any disagreements in a civil, fair and responsible way. 
And where possible, we will find ways to work together.
    I believe that this morning is a hearing that will focus on 
one of those ways where working together is very much within 
our reach. Our subcommittee is given responsibility for the 
issues that arise out of Americans in the workplace, whether it 
is their health insurance while they are working or retired, 
whether it is the nature of their employment relationship with 
their employer, the relationship between collective bargaining 
organizations and employers or the area of pension benefits for 
people, whether they are in a union or not, whether they are 
management, labor or what have you.
    This is a large responsibility that we have been given. And 
I believe that when Speaker Pelosi took the gavel from the 
former chairman of this subcommittee, Mr. Boehner, and said 
that she wanted to proceed in the spirit of partnership rather 
than partisanship that today's hearing marks the first effort 
of what I hope will be many by our subcommittee to proceed in 
that spirit.
    I believe there is an emerging bipartisan consensus 
addressing the issues that we will address this morning that we 
are so honored to have Chairwoman Slaughter and Congresswoman 
Biggert here to talk about.
    I think there is a consensus in our country that when a 
person goes to apply for a job that he or she should not be 
denied the job because their family has a history of diabetes. 
I think there is an emerging consensus in the country that when 
a woman is working for a company that she shouldn't have to pay 
more for her health insurance than her peers because there is a 
family history of breast cancer in her family.
    I think there is an emerging consensus in the country that 
no person should be told they are going to get fired if they 
don't agree to a genetic test. I think there is an emerging 
consensus in the country that if you have taken a genetic test 
and there is genetic information out there available to you, 
the information should only be given to people to whom you 
consent that it be given. And the tests should only be taken 
under circumstances in which you consent.
    These principles were included in legislation which was 
identical to the legislation Ms. Slaughter and Ms. Biggert are 
talking about today, approved by the Senate 98-to-nothing. 
President Bush has strongly indicated that he is in support of 
these principles. So I think this is an excellent place for us 
to start our efforts to find ways that we can work together and 
improve the conditions of Americans in the workplace.
    We are looking forward to the testimony this morning.
    At this point, what I would like to do is to yield to my 
friend and colleague, the ranking member of the subcommittee, 
Mr. Kline.
    Mr. Kline. Thank you, Mr. Chairman.
    Good morning to you all.
    Let me start this morning by saying congratulations to you, 
Mr. Chairman. You and I have had the opportunity to work 
together on this committee and the Armed Services, as you 
pointed out, and I have found you always to be fair and 
forthright. And I am sure that that relationship will continue. 
I am looking forward to doing that work with you.
    I do have to admit to you and to everyone that I would much 
prefer to be sitting in this chair than this chair. [Laughter.]
    However, given that, I am happy to be sitting next to you. 
And I do think that there will be opportunities for us to work 
together and advance the agenda for the American people. In 
some cases and other cases you and I have agreed we were just 
going to agree to disagree.
    I think that this morning's hearing is important. And I 
thank the chairman for moving forward with what I am sure will 
be the regular order of business in this subcommittee and the 
Committee on Education and Labor as a whole, as we examine the 
range of issues within our subcommittee, be they labor, health, 
pensions or otherwise.
    And as the chairman has pointed out, there is a broad range 
of issues which we will be addressing. I hope that we will be 
mindful of the importance of the hearing and the markup 
processes and that we will begin and continue any legislative 
journey with a close contemplation of the facts.
    Let me now turn to the issue before us today at this 
hearing: protecting workers from genetic discrimination. At the 
outset, I think the title of today's hearing embodies the 
proposition that all members of the subcommittee, as the 
chairman has pointed out, Republican or Democrat, would 
endorse, mainly that no employee should face discrimination on 
the basis of his or her genetic makeup, indeed, on any 
characteristic other than his or her qualifications for and the 
ability to do the job.
    The idea that an employee might face adverse job 
consequences or risk their health insurance status because of 
the possibility that they might some day develop an illness is 
simply unacceptable. Nor should the fear of those consequences 
deter any individual from seeking the fullest and best medical 
screening and treatment available. I think these are points on 
which we can and will all agree.
    I will say I am not sure that the case has been made that 
imposition of a broad new federal mandate on employers and 
insurers with respect to genetic discrimination is necessary. 
We will hear from witnesses today that many fear that their 
genetic information become public or may be used against them 
in some fashion. I won't call that fear unfounded, but I will 
say that before we consider broad reforms to our health 
insurance and employment laws, we need to determine whether 
there is a real problem here and if so, which is the best way 
to solve it.
    Indeed, it bears noting that in the only recorded claim of 
genetic discrimination brought by the EEOC of which I am 
aware--and I think one of our witnesses today was, in fact, a 
plaintiff in that case--the matter was settled quickly and 
efficiently by the EEOC, which recovered $2.2 million for the 
plaintiffs under existing law. Again, that is the only 
documented case of alleged discrimination by an employer in the 
private sector for which we have details. But that was 5 years 
ago.
    And since that time, to my knowledge, there has been no 
surge of lawsuits claiming that genetic discrimination by 
employers or insurers is a growing problem, despite the fact 
that our knowledge of the human genome--and it is truly 
miraculous what we have been able to discover--and our access 
to that information has grown exponentially in that time. 
Indeed, to the extent there was a concern with the actions of a 
single employer, some would say the system worked exactly the 
way it should have, again, under existing law.
    If we assume for the sake of argument that some legislative 
action is necessary--and as I said, to my mind, the jury is 
still out on that question--the question then becomes what form 
this action should take. If there are legitimate concerns that 
genetic information is being misused or otherwise presents a 
risk, it would seem a matter of simple common sense to target 
any solution to the actual problem.
    To go after a mosquito with a machine gun--and considering 
my past career in the Marine Corps, that is not necessarily a 
bad idea--but to go after a mosquito with a machine gun may not 
be the best way to solve the problem and almost surely will 
create others, some of which I guarantee you as sure as we are 
sitting here none of us have yet thought of.
    In that light, some have suggested that with respect to 
health insurance and insurance coverage there may be greater 
consensus as to what legislative steps are helpful or 
necessary. If that is the case, a strong argument could be made 
for moving forward with insurance provisions on which there is 
agreement. We can then more closely examine issues relating 
more to employment and the broad use of genetic information in 
the workplace.
    And then finally--and I must assure all of you what I 
promised the chairman, this will be the longest opening 
statement I will ever make as the ranking member. [Laughter.]
    But finally, while today is an examination of the issue of 
genetic nondiscrimination generally, we will soon hear from two 
of our colleagues--and I am excited to see them here today, 
including our good friend and committee colleague, Ms. Biggert, 
who I think is going to join us later in the hearing--about one 
specific piece of legislation, the Genetic Information 
Nondiscrimination Act. I welcome their comments and a close 
examination of the proposed solution they have put forward.
    I would say that as we approach this issue, I hope we are 
mindful that the committee process is intended to provide a 
forum for a close examination of a bill with the goal of 
perfecting the legislative product and improving whatever bill, 
if any, ultimately comes before all of us on the floor of the 
House. Too often we hear, ``The devil is in the details.'' On 
an issue as important as this one, it bears reminding that this 
committee is charged with making sure that the details are 
right.
    I opened my comments by expressing my admiration for our 
chairman. And I would close by saying the same.
    Rob, I look forward to working with you and the members of 
this committee. And I yield back.

   Prepared Statement of Hon. John Kline, Senior Republican Member, 
         Subcommittee on Health, Employment, Labor and Pensions

    Good Morning. Let me first say welcome, and congratulations, to my 
friend and the new chairman of our Subcommittee, Rob Andrews of New 
Jersey. I had the distinct pleasure of working with Mr. Andrews 
throughout the years I've been on this Committee, and although we may 
disagree on the substance of an issue, I've always known him to be 
fair, courteous, open-minded, and one of the most dedicated members of 
our Committee. While I would of course prefer to be sitting in his seat 
this morning, I know and trust that as we convene today's first hearing 
of the new Health, Employment, Labor, and Pensions Subcommittee, that 
his fairness and open-mindedness will continue on this leg of the 
journey.
    This morning's hearing is an important one, and I thank the 
chairman for beginning today what I hope will be the ``regular order'' 
of business in our Subcommittee and the Committee on Education and 
Labor as a whole. As we examine the range of issues within our 
Subcommittee--be they labor, health, pensions, or otherwise--I hope 
that we will be mindful of the importance of the hearing and markup 
processes, and that we will begin and continue any legislative journey 
with a close contemplation of the facts.
    Let me turn now to the issue before us at today's hearing, 
``Protecting Workers from Genetic Discrimination.''
    At the outset, I think the title of today's hearing embodies a 
proposition that all members of the Subcommittee--Republican or 
Democrat--would endorse. Namely, that no employee should face 
discrimination on the basis of his or her genetic makeup--or indeed, on 
any characteristic other than his or her qualifications for and ability 
to do the job. The idea that an employee might face adverse job 
consequences or risk their health insurance status because of the 
possibility that they might someday develop an illness is simply 
unacceptable. Nor should the fear of those consequences deter any 
individual from seeking the fullest and best medical screening and 
treatment available. I think these are points on which we would all 
agree.
    I will say, I am not sure that the case has been made that 
imposition of a broad new federal mandate on employers and insurers 
with respect to genetic discrimination is necessary. We'll hear from 
witnesses today that many ``fear'' that their genetic information may 
become public, or may be used against them in some fashion. I won't 
call that fear unfounded--but I will say that before we consider broad 
reform to our health insurance and employment laws, we need to 
determine whether there is a real problem here, and if so, which way is 
best to solve it.
    Indeed, it bears noting that in the only recorded claim of genetic 
discrimination brought by the EEOC of which I am aware--and I think one 
of our witnesses today was in fact a plaintiff in that case--the matter 
was settled quickly and efficiently by the EEOC, which recovered $2.2 
million dollars for the plaintiffs under existing law. Again, that is 
the only documented case of alleged discrimination by an employer in 
the private sector for which we have details--but that was five years 
ago, and since that time, to my knowledge, there has been no surge of 
lawsuits claiming that genetic discrimination by employers or insurers 
is a growing problem, despite the fact that our knowledge of the human 
genome, and our access to that information, has grown exponentially in 
that time. Indeed, to the extent there was a concern with the actions 
of a single employer, some would say the system worked exactly the way 
it should have--again, under existing law.
    If we assume for the sake of argument that some legislative action 
is necessary--and as I said, to my mind, the jury is still out on that 
question--the question then becomes what form this action should take. 
If there are legitimate concerns that genetic information is being 
misused or otherwise presents a risk, it would seem a matter of simple 
common sense to target any ``solution'' to the actual ``problem.'' To 
go after a mosquito with a machine gun may not be the best way to solve 
the problem--and almost surely will create others, some of which, I 
guarantee as sure as we are sitting here, none of us have yet thought 
of.
    In that light, some have suggested that with respect to health 
insurance and insurance coverage, there may be greater consensus as to 
what legislative steps are helpful or necessary. If that is the case, a 
strong argument can be made for moving forward with insurance 
provisions on which there is agreement. We can then more closely 
examine issues relating more to employment and the broad use of genetic 
information in the workplace.
    Finally, while today is an examination of the issue of genetic 
nondiscrimination generally, we will soon hear from two of our 
colleagues--including our good friend and Committee colleague, Mrs. 
Biggert--about one specific piece of legislation, the Genetic 
Information Nondiscrimination Act. I welcome their comments, and a 
close examination of the proposed solution they have put forward. I 
would say that as we approach this issue, I hope we are mindful that 
the committee process is intended to provide a forum for a close 
examination of a bill, with a goal of perfecting a legislative product, 
and improving whatever bill--if any--ultimately comes before all of us 
on the Floor of the House. Too often we hear ``the devil is in the 
details''--on an issue as important as this one, it bears reminding 
that this Committee is charged with making sure ``the details'' are 
right.
    I began my remarks this morning by commending the Chairman for 
starting the process of ``regular order'' on this issue--I hope that 
this process continues, and that to the extent we move on to consider 
legislation, we are given the opportunity to examine it thoroughly and 
to amend or improve it in a thoughtful and deliberate matter. To simply 
pass a bill along, or to succumb to pressure by any party to do so--
does neither our colleagues nor this institution a service.
    With that, I welcome our witnesses this morning, and yield back my 
time.
                                 ______
                                 
    Chairman Andrews. John, thank you very much for the 
compliment.
    Two items: Pursuant to the rules, other members of the 
committee are welcome to make opening statements, without 
objection, will be considered in the record. Secondly, pursuant 
to the full committee rules, which are incorporated by 
reference in the subcommittee, members will be recognized for 
questioning in order of seniority for those present at the 
gavel. Thereafter, members will be recognized in order of 
appearance at the hearing.
    [The statement of Mr. Hare follows:]

Prepared Statement of Hon. Phil Hare, a Representative in Congress From 
                         the State of Illinois

    Coming from a labor background, I am acutely concerned about any 
discrimination in the workplace, whether it is age, race or gendered 
specific. Today we are presented with an issue appropriate to our time 
and the amazing scientific and technological advancements we have made 
as a society--discrimination based on our genetics. We find ourselves 
presented with that age-old question regarding the fine line between 
scientific advancement and practice in our lives. What do we plan to do 
with the knowledge that we have? Do we use our advancements for good, 
i.e. finding cures for once incurable diseases or making one more 
comfortable in the workplace; or do we use our knowledge in ways to 
discriminate and differentiate the value between people. When do we 
overstep that line and interfere with the natural world?
    As Ms. Pearson states in her testimony, we legislate based on 
hindsight. I would like to go further than that and argue we 
incorporate a bit of preemption in that process as well. Look at issues 
such as affirmative action, limits on damages in jury cases, speed 
limits on our highways, and worker compensation laws, among many other 
issues. All of these were established because of the potential for harm 
or because discrimination or harmful behavior existed. They are the 
result of preemption--in case an event should occur, these laws exist 
to protect individuals.
    The value of our laws rests in how we are able to analyze them for 
improvement. If loopholes are found and have the potential to be 
harmful or have, in the case studies presented today, proven to hurt 
the people our laws are trying to protect, well then we must fix them. 
Of course we cannot preempt everything but when we have discovered 
instances where our laws are not working, it is our obligation to amend 
them, especially as we approach a more scientifically involved society. 
There is great risk involved in the advancement of our knowledge and we 
must be aware of the potential for discrimination.
Questions for the panel
     Addressed to the entire panel: Are there other ways to 
protect employees from genetic discrimination that GINA does not 
address? How can the protections outlined in the bill be stronger or 
more effective?
     Mr. Fishman, while I appreciate your argument about access 
to one's genetic information being used to create employer-provided 
wellness programs or prevent exposure to harmful working conditions, my 
question is where do you draw the line? I believe this puts us on a 
slippery slope. If we allow employers access to our genetic information 
for any reason, what prevents them from using it to discriminate?
                                 ______
                                 
    I want to now turn to our colleagues who have come to 
testify this morning. Let me commend them for taking a very 
difficult issue, for negotiating with all the different 
interests and conducting really an exhaustive and comprehensive 
process to produce a piece of legislation that I think is 
visionary but also very carefully balanced.
    And I particularly want to say to Chairwoman Slaughter that 
her years of devotion to this cause, I am confident, are going 
to come to fruition very, very soon.
    And with that, I would recognize the chairwoman of the 
Rules Committee, Ms. Slaughter.

 STATEMENT OF HON. LOUISE McINTOSH SLAUGHTER, A REPRESENTATIVE 
             IN CONGRESS FROM THE STATE OF NEW YORK

    Ms. Slaughter. It has been a while since I have testified 
before a committee.
    Mr. Chairman, let me congratulate you as well on your 
chairmanship and say good morning to you, to Mr. Kline and all 
the other members of the committee.
    On this committee we have 11 co-sponsors on this bill. And 
to all of you I am extremely grateful.
    If there was ever a bipartisan bill, it is this one. It has 
at this moment almost precisely the same amount of Republican 
sponsors as it does Democrat sponsors and over the years has 
enjoyed the sponsorship of most of committee chair.
    And I certainly want to say how wonderful it has been to 
me, what a pleasure to work with Ms. Biggert. Both of us have 
toiled mightily in the field for 12 years to get this bill 
passed. We will not dwell at all on how far we could have been 
on this great science had we passed it years ago. But we are 
grateful this morning for the opportunity to bring it to you.
    We think it is a bill whose time is long overdue. It is an 
important tool for science. And we know that it can make a 
major difference in people's lives.
    I have a brief statement. I would like to put my complete 
statement into the record, if I may.
    Chairman Andrews. Without objection.
    Ms. Slaughter. Thank you.
    Let me thank you again. I hope our discussion this morning 
will lead to the timely and decisive package of strong genetic 
nondiscrimination legislation that we have all been waiting 
for.
    The Genetic Information Non-Discrimination Act, or GINA for 
short, is a culmination of a systemic bipartisan effort to 
prohibit improper use of genetic information in the workforce 
and insurance decisions.
    GINA prohibits group health plans and health insurance from 
denying coverage to a healthy individual or charging that 
person higher premiums based solely on the genetic 
predisposition to develop a disease sometime in the future. And 
we are talking about 30 or 40 years or perhaps never. It is 
probably the rankest form of discrimination that is practiced.
    Furthermore, it bars employers from using an individual's 
genetic information when making hiring, firing, job placement 
or promotion decisions. In the 12 years since I first 
introduced the first version of genetic nondiscrimination 
legislation the need for it has grown exponentially. Scientific 
research has advanced so quickly that we cannot afford to wait 
any longer.
    Since the sequencing of the human genome was completed in 
April of 2003, researchers have identified genetic markers for 
a variety of chronic health conditions and increased the 
potential for early treatment and prevention of numerous 
diseases. There are currently over 15,500 recognized genetic 
disorders that afflict 13 million Americans. In every one of us 
it is estimated--there is no perfect person. All of us are 
estimated to be genetically predisposed to between five and 50 
serious disorders ourselves.
    Fifteen percent of all cancers, for example, have an 
inherited susceptibility. Ten percent of adult chronic diseases 
like heart disease, diabetes--America's top killers--have a 
genetic component. Fortunately, there are already genetic tests 
for over 1,000 diseases, and hundreds more are undeveloped.
    To give you an idea of the potential that exists, consider 
that genetic tests can tell a woman with a family history of 
breast cancer if she has the genetic mutation that can cause it 
long before any cancer develops. For these exciting scientific 
advances to continue and for the potential of this technology 
to be realized, we need to make genetic testing something that 
is commonplace rather than something that is feared. But sadly, 
ongoing genetic discrimination is making men and women ever 
less likely to be tested and to participate in clinical trials.
    Significant examples of genetic discrimination already 
exist. Many know about the Burlington Northern Santa Fe 
Corporation case, which I believe Mr. Kline alluded to, and the 
case involving the Lawrence Livermore Laboratory. But you may 
not know about the North Carolina woman who was fired after 
genetic tests had revealed her risk for a lung disorder or the 
social worker who, despite outstanding performance reviews, was 
dismissed because her family had a history of Huntington's 
Disease.
    These abuses along with others have only fed the growing 
public fear of genetic discrimination leading many Americans to 
forego genetic testing even if early detection of a particular 
genetic mutation could help avoid premature death.
    In a recent 2006 Cogent research poll, 66 percent of 
respondents said they had concerns about how their genetic 
information would be stored and who would have access to it; 72 
percent agreed the government should establish laws and 
regulations to protect the privacy of individuals' genetic 
information; 85 percent said that without mending the current 
law, employers could use this information to discriminate.
    Even health-care professionals are hesitant to make their 
own genetic information available. In one survey of genetic 
counselors, 108 out of 159 indicated they would not submit 
charges for a genetic test to the insurance companies primarily 
because they feared discrimination.
    Genetic discrimination is wrong on two fronts. First, it is 
critical to remember that simply carrying a gene to a given 
genetic mutation almost never guarantees that one will fall 
ill. And the genetic flaw simply confers a level of risk upon 
the carrier.
    Given that science cannot accurately predict when or 
whether a carrier will develop a disorder, it seems both 
criminal and illogical to allow this information to be used by 
health insurers or employers for discriminatory purposes. But 
what is more, if the individuals do not participate in the 
clinical trials, we will never be able to reap the real benefit 
to the genetic technology.
    In a 2003 editorial, Dr. Francis Collins and James Watkins 
made the persuasive argument in favor of nondiscrimination 
legislation along these lines. They wrote, ``Genetic 
discrimination has the potential to affect people's lives in 
terms of job insurance. But there is another dimension as well. 
It can slow the pace of scientific discovery that will yield 
crucial medical advances. Without the protections in place, the 
individuals who do agree to participate in studies will 
represent a self-selected group that could skew research 
results, producing a negative impact on all of us who look to 
genetics to help find a better way in diagnosing, treating and 
preventing disease.''
    As a scientist myself, I cannot overstate the importance of 
having a truly representative sample size in clinical trials to 
ascertain valid research results.
    Let me close by reiterating the broad support that this 
bill enjoys. It has substantial support from the health and 
science community. The Coalition for Genetic Fairness, which 
consists of over 140 organizations, has been outspoken in its 
support of GINA. I have here in my hands over 200 letters of 
support for GINA from a wide spectrum of health-related 
organizations. And as of today we have over 180 sponsors, both 
Democrats and Republicans, standing behind this bill.
    The Senate has passed it twice with unanimous support. And 
even the White House has come out and supported genetic 
nondiscrimination legislation. GINA will do more than stamp out 
a new form of discrimination.
    It will help our country to be a leader in the field of 
scientific research that holds as much promise as any other in 
history. It is that important. And it will allow us to realize 
a tremendous potential of genetic research without jeopardizing 
one of the most fundamental privacies that can ever be 
imagined.
    Mr. Chairman and Mr. Kline, once again let me thank you for 
the opportunity to speak at this hearing. And I look forward to 
working with you and all the members of the subcommittee as 
well as any other interested parties to enact this bill. I 
believe it is crucial that we do. Twelve years is too long to 
wait.
    Thank you, Mr. Chairman.
    [The statement of Ms. Slaughter follows:]

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

    Mr. Chairman, I want to thank you for having this important hearing 
today and for inviting me to testify. I hope that our discussion will 
help lead to the timely and decisive passage of the strong genetic 
nondiscrimination legislation we have all been waiting for.
    The Genetic Information Nondiscrimination Act, or GINA for short, 
is the culmination of a systematic, bipartisan effort to prohibit 
improper use of genetic information in workforce and insurance 
decisions.
    GINA prohibits group health plans and health insurers from denying 
coverage to a healthy individual or charging that person higher 
premiums based solely on a genetic predisposition to develop a disease 
in the future. Furthermore, it bars employers from using an 
individual's genetic information when making hiring, firing, job 
placement or promotion decisions.
    In the 12 years since I first introduced genetic nondiscrimination 
legislation, the need for it has grown exponentially. Scientific 
research has advanced so quickly that we cannot afford to wait any 
longer. What we need is a way to preserve Americans' health and protect 
our nation's scientific edge, all while defending the privacy of our 
citizens. I believe that this is what GINA will allow us to achieve.
    We all watched with excitement when the first phase of the Human 
Genome project was successfully completed in April 2003, as scientists 
finished sequencing the human genome. From this first breakthrough, 
researchers have now identified genetic markers for a variety of 
chronic health conditions, and increased the potential for early 
treatment and prevention of numerous diseases.
    There are over 15,500 recognized genetic disorders affecting 13 
million Americans. No human being has a perfect set of genes. In fact, 
every one of us is estimated to be genetically predisposed to between 5 
and 50 serious disorders. Fifteen percent of all cancers, for example, 
have an inherited susceptibility, and ten percent of adult chronic 
diseases (like heart disease and diabetes, America's top killers) have 
a genetic component.
    Today, there are genetic tests for over 1000 diseases, and several 
hundred more are under development. To cite just one example: genetic 
tests can now tell a woman with a family history of breast cancer if 
she has the BRCA-1 mutation that can cause it--and do so long before 
the cancer develops.
    But despite the scientific advances that are helping people prevent 
these diseases and diagnose them early, those who partake of this 
innovative technology are currently potential victims of genetic 
discrimination. And that is why we so desperately need to pass GINA: so 
that this area of dynamic research can move forward, and so that we can 
focus on improving health care in America without worrying that the 
knowledge we gain will be used to harm those it should be helping.
    It is critical to remember that simply carrying a given genetic 
mutation almost never guarantees that one will fall ill. A genetic flaw 
simply confers a level of risk upon the carrier.
    And given that scientists cannot accurately predict when or whether 
a carrier will develop a genetic disorder, it seems criminal to allow 
this information to be used by health insurers or employers for 
discriminatory purposes. An insurance bureaucrat or human resources 
professional would be as accurate with a dartboard as with a genetic 
test result in predicting who will get sick.
    Critics say that this legislation is ``a solution in search of a 
problem'' and suggest that genetic discrimination is rare, if it even 
happens at all. Yet there are significant examples of genetic 
discrimination that we can point to already.
    Many already know about the 2002 Burlington Northern Santa Fe 
Corporation case, where the company agreed to pay $2.2 million to 
settle charges that it had tested employees without their knowledge for 
a genetic marker dubiously associated with carpel tunnel syndrome.
    Or the reports in the early 1990s that Lawrence Livermore 
Laboratories was found to have for years been performing genetic tests 
on employees without their knowledge or consent.
    There is also the fact that in the 1970s, many African Americans 
were denied jobs and insurance based on their carrier status for sickle 
cell anemia--again, despite the fact that a carrier lacks the two 
copies of a mutation necessary to get sick.
    You have likely already heard about these examples. But you may not 
know about the North Carolina woman who was fired after a genetic test 
had revealed her risk for a lung disorder, even though she had begun 
the treatments that would keep her healthy.
    Or the social worker whom, despite outstanding performance reviews, 
was fired because of her employer's fears about her family history of 
Huntington's disease.
    Or the 1996 study that found a number of institutions, including 
health and life insurance companies, health care providers, adoption 
agencies, the military, and schools, that were reported to have engaged 
in genetic discrimination against asymptomatic individuals.
    Such alleged discriminatory practices included an adoption agency 
refusing to allow a woman at risk for Huntington's disease to adopt a 
child, and an employer terminating an employee after they disclosed a 
risk of Huntington's disease.
    A 2001 American Management Association survey of employer medical 
testing practices found that 1.3% of companies test new or current 
employees for sickle cell anemia, 0.4% test for Huntington's Disease, 
and 20.1% ask about family medical history. When asked if the results 
were used in hiring, reassigning, retaining or dismissing employees, 1% 
of employers indicated that sickle cell, 0.8% indicated that 
Huntington's, and 5.5% indicated that family history results were used.
    These abuses have only fed the public fear of genetic 
discrimination, much to the detriment of America's public health and 
the future benefits of scientific research. Studies have shown that 
Americans are deciding to forgo genetic testing altogether because they 
fear discrimination, even if early detection of a particular genetic 
mutation may help avert premature morbidity and mortality.
    A study conducted from 2001 to 2003 surveyed 86,859 adults about 
their willingness to undergo genetic testing. The results revealed that 
40 percent felt genetic testing was not a good idea for fear that 
health insurance companies might deny or drop them from their insurance 
plan.
    The Genetics and Public Policy Center at Johns Hopkins University 
conducted similar surveys. In 2002, 85 percent of those surveyed did 
not want employers to have access to their genetic information. By 
2004, that number had risen to 92 percent. In 2002, 68 percent of those 
surveyed said their genetic information should be kept private from 
health insurers; by 2004, it had increased to 80 percent.
    A 2003 study of 470 people with a family history of colorectal 
cancer showed that nearly half rated their level of concern about 
genetic discrimination as ``high.'' Those individuals with high levels 
of concern indicated that they would be significantly less likely to 
consider meeting with a health care professional to discuss genetic 
testing, or to undergo testing , thus jeopardizing their ability to 
prevent this deadly disease.
    In a recent 2006 Cogent Research poll, 66% of respondents said they 
had concerns about how their genetic information would be stored and 
who would have access. 65% said they were concerned about health 
insurance companies, and 54% were concerned with employers gaining 
unauthorized access. 72% agreed that the government should establish 
laws and regulations to protect the privacy of individuals' genetic 
information. And 85% said that without amending the law, employers 
would discriminate.
    Fears about privacy do not just resonate with the public. Health 
care professionals are also hesitant to make their genetic information 
available. In one survey of genetic counselors, 108 out of 159 
indicated that they would not submit charges for a genetic test to 
their insurance companies primarily because of the fear of 
discrimination. Twenty-five percent responded that they would use an 
alias to obtain a genetic test so as to reduce the risk of 
discrimination and maximize confidentiality. And, 60 percent indicated 
they would not share the information with a colleague because of the 
need for privacy and fear of job discrimination.
    Mr. Chairman, Congressional action on genetic discrimination is 
necessary and long overdue. Genetic discrimination is unjustifiable in 
its own right. But what is more, if individuals do not participate in 
genetic studies, then we will never be able to realize the potential of 
this technology.
    In a 2003 editorial, Dr. Francis Collins and James Watson made a 
persuasive argument for the need for legislative action. They said, and 
I quote: ``Genetic discrimination has the potential to affect people's 
lives in terms of jobs and insurance, but there is another dimension as 
well: It can slow the pace of the scientific discovery that will yield 
crucial medical advances. * * * Without protections in place, 
individuals who do agree to participate [in studies] will represent a 
self-selected group that could skew research results, producing a 
negative impact on all of us who look to genetics to help find better 
ways of diagnosing, treating, and preventing disease.'' End quote.
    As a scientist myself, I cannot overstate the importance of having 
a truly representative sample size for research and in clinical trials 
to ascertain valid results.
    GINA will do more than stamp out a new form of discrimination, as 
important as that is. It will also help us to resurrect our country's 
proud history of innovative, advanced scientific and medical research, 
and to be a leader in this burgeoning field of genetic science.
    Let me close by reiterating the broad support that this bill 
enjoys.
    It has substantial support from the health and science community. 
The Coalition for Genetic Fairness, which consists of over 140 
organizations, has been outspoken in their support for GINA. I have 
here in my hand over 200 letters of support for GINA from a wide 
spectrum of health-related organizations.
    GINA has support from the American people, as is clear from the 
poll results I mentioned a few moments ago.
    And GINA has support from a broad array of politicians. Here in the 
House of Representatives, the current legislation authored by Ms. 
Biggert, Ms. Eshoo, Mr. Walden, and I has over 175 cosponsors, both 
Democrats and Republicans. The Senate has passed this bill twice with 
unanimous support, and even the White House has come out in support of 
genetic nondiscrimination legislation.
    Simply put, GINA provides the protections from genetic 
discrimination that Americans want, and this bill would allow genetic 
research to move forward so we can all live healthier lives.
    Mr. Chairman, once again, let me thank you for holding this hearing 
today to shed light on this important issue. I look forward to working 
with you and all the Members of this Subcommittee, as well as any other 
interested parties, to enact H.R. 493, so that the future of genetic 
science will be something to embrace, instead of something to fear.
                                 ______
                                 
    Chairman Andrews. Thank you, Chairwoman Slaughter, for your 
excellent presentation and your dedication to this cause.
    We are honored to welcome home a member of our full 
committee, Ms. Biggert, who I am delighted will be joining us 
for the question period today when the second panel comes up.
    And we thank you, Ms. Biggert, for your efforts to address 
the very valid concerns of the business community in making 
sure that this legislation is balanced. And we welcome and 
anticipate your testimony.

 STATEMENT OF HON. JUDY BIGGERT, A REPRESENTATIVE IN CONGRESS 
                   FROM THE STATE OF ILLINOIS

    Mrs. Biggert. Thank you, Mr. Chairman. It is rather odd to 
be on this side of the table. I think I like being up there a 
little bit better. But I do thank you for holding this hearing 
and allowing me to participate.
    And I also want to thank subcommittee members Mr. Boustany 
and Mr. Kildee, Mr. Hoekstra, Mr. Tierney and Mr. Marchant and 
Mr. Hare, who are among the 93 Republicans and the 82 Democrats 
co-sponsoring this bill. And last year we did have 244 sponsors 
of it. So I hope today's testimony will encourage other members 
of this subcommittee and the full committee to support this 
vital legislation.
    Ms. Slaughter has eloquently addressed the public's fears 
of genetic discrimination and how it is a serious problem 
preventing Americans from utilizing genetic testing. I will 
focus my testimony on how technology can save lives and money 
and why I think these savings will be important, not just for 
businesses, but also for employees and their families. And 
finally, I want to address some of the concerns of the business 
community.
    Genetic testing is the foundation of personalized and 
preventative medicine that focuses on catching diseases earlier 
when they are cheaper and easier to treat, tailoring treatment 
to each of our individual genetic makeups and preventing the 
onset of disease in the first place. For example, well, these 
genetic-based approaches can save lives while having the added 
benefit of reducing health-care costs.
    For example, many women who test positive for the Brach-1 
mutation have up to an 85 percent chance of getting breast 
cancer. And many choose to have a mastectomy before the onset 
of the disease, which significantly reduces the chance that 
they will get breast cancer. At a cost of roughly $12,000, this 
option dramatically reduces breast cancer treatment costs that 
can run into hundreds of thousands of dollars.
    And even for women who have already developed breast 
cancer, genetic testing can lead to serious cost savings. For 
example, the breast cancer drug Arisa costs $25,000 a year. But 
there is a simple genetic test that will predict whether or not 
this drug will effectively treat that cancer, thereby saving 
precious time and energy and money.
    I chose the example of breast cancer to help to make the 
point that genetic testing can be deployed today to reduce 
health-care costs. But we are not just talking about tests for 
breast cancer. We are talking about 1,000 genetic tests that 
can predict whether an individual is more likely to get a 
disease.
    With estimates showing each of us, as Ms. Slaughter noted, 
dozens of genetic mutations, this legislation is important to 
everyone. These widespread benefits have important implications 
to employers. Think about how vital this information would be 
to employer-provided wellness programs, which by their very 
nature focus on preventative measures. And think about how much 
employers could save on health care while keeping their 
employees healthy and productive.
    Now, I know that this is at the heart of the debate within 
the employer community. It is the clash between those who see 
this legislation as a way to reduce health-care costs versus 
those who see it as a new opportunity for frivolous and costly 
lawsuits. So I would like to address the concerns of those 
employers by outlining what is required for an employer to be 
libel under this bill.
    Genetic nondiscrimination isn't like race, age or sex 
discrimination. It is not apparent. You can't tell somebody's 
genetic makeup from looking at them. You have to search it out. 
In order for an employer to be libel under this act, he or she 
would have to intentionally or deliberately go looking for 
genetic information and then use it against an employee. An 
employer literally would have to go out of his or her way to 
discriminate.
    I understand the concerns of the skeptics in the business 
community. My record in business speaks for itself. I am a 
supporter of business even by business communities' own 
standards. As the lead sponsor of this legislation, during the 
109th Congress I met with them, discussed their concerns and 
worked with them. I think everyone involved worked in good 
faith on this issue. And these groups can trust that I will 
continue to give their concerns fair and honest consideration.
    However, I do believe it is important to point out that the 
bill introduced in the 109th Congress, which is the same bill 
as today, is already a compromised bill that accommodates many 
of the concerns the business community had to the previous 
version of the legislation, H.R. 1910 from the 108th Congress. 
So we made a lot of progress, I think, in moving this bill 
forward for their concerns.
    Compared to H.R. 1910, today's bill is different in four 
important ways. The bill has a clear and precise definition of 
genetic information. It explicitly states that inadvertent 
acquisition of genetic information is not prohibited. It 
requires that claimants exhaust administrative procedures 
before seeking damages.
    Under H.R. 1910, claimants could have gone directly to 
court rather than to the EEOC. And it caps damages under 
existing Title 7 levels, which vary by size of employer. And 
the previous bill had no damage caps. So I think that this 
legislation is much more friendly than H.R. 1910 from the 108th 
Congress.
    Mr. Chairman, in passing this legislation we have a unique 
opportunity to improve the health and lives of the American 
people. But we will never unlock the great promise of the human 
genome project if Americans are too afraid to undergo genetic 
testing. I would like to give you just one short example.
    I was doing a television interview. And the reporter asked 
me what would I like to talk about. And I said genetic 
information nondiscrimination. And she said I really want to 
hear this. She said that she had just had breast cancer. And 
her doctors told her that she should undergo genetic testing to 
see if she had the predisposition for ovarian cancer, which is 
in some cases a high predisposition. And she said to her 
doctor, ``I can't have the test because I will lose my job.''
    So without the protections offered by H.R. 493 I think 
these fears will persist, research at NIH will slow and 
Americans and American businesses will never realize the 
benefits and savings of gene-based medicines. So it is time the 
House joins the Senate and the president in supporting this 
critical bill.
    I thank you.
    [The statement of Mrs. Biggert follows:]

 Prepared Statement of Hon. Judy Biggert, a Representative in Congress 
                       From the State of Illinois

    Thank you, Mr. Chairman, for holding this very important hearing 
today and for allowing me to participate. I also want to thank 
Subcommittee Members Mr. Rush, Mr. Boustany, Mr. Kildee, Mr. Hoekstra, 
Mr. Tierney, Mr. Marchant, and Mr. Hare, who are among the 175 
cosponsors--including 93 Republicans and 82 Democrats--of this 
bipartisan bill. I hope today's testimony will encourage other members 
of this Subcommittee and our colleagues on the full Education and Labor 
Committee to support this vital legislation.
    Mrs. Slaughter has eloquently addressed the public's fear of 
genetic discrimination and how it is a serious problem preventing 
Americans from utilizing genetic testing to improve their own health 
and reduce healthcare costs. I will focus my testimony on how this 
technology can save lives and money and why I think these savings will 
be important--not just for businesses, but also for employees and their 
families. Finally, I want to address some of the concerns of the 
business community.
    Genetic testing is the foundation of personalized and preventative 
medicine that focuses on:
    1. Catching diseases earlier when they are cheaper and easier to 
treat;
    2. Tailoring treatments to each of our individual genetic makeups; 
and
    3. Preventing the onset of disease in the first place.
    Along every step of the way, these genetics-based approaches can 
save lives while having the added benefit of reducing healthcare costs.
    For example, many women who test positive for the BRCA1 mutation 
have up to an 85% chance of getting breast cancer. Many choose to have 
a prophylactic mastectomy before the onset of disease, which 
significantly reduces the chance they will get breast cancer. At a cost 
of roughly $12,000, this option dramatically reduces breast cancer 
treatment costs that can run into hundreds of thousands of dollars.
    Even for women who already have developed breast cancer, genetic 
testing can lead to serious cost savings. For example, the breast 
cancer drug Iressa costs $25,000 a year, but there is a simple genetic 
test that will predict whether or not this drug will be successful, 
thereby sparing false hope and saving precious time and money.
    I chose the example of breast cancer to help make the point that 
genetic testing can be deployed today to reduce healthcare costs. But 
we're not just talking about tests for breast cancer. We're talking 
about a thousand genetic tests that predict whether an individual is 
more likely to get a disease. And we're not talking about just helping 
a few people. Estimates show that on average, each of us carries dozens 
of genetic defects that put us at risk.
    These widespread benefits have important implications to employers. 
Think about how vital this information could be to employer-provided 
wellness programs, which by their very nature focus on preventative 
medicine. Think about how much employers could save on healthcare while 
keeping their employees healthy and productive.
    Now I know that this is at the heart of the debate within the 
employer community. It's the clash between those who see this 
legislation as a way to reduce healthcare costs versus those who see it 
as a new opportunity for frivolous and costly lawsuits. So I just want 
to take a moment to address the concerns of those employers by 
outlining what is required for an employer to be liable under this 
bill.
    Genetic nondiscrimination isn't like race, age, or sex 
discrimination * * * it's not apparent. You can't tell someone's 
genetic makeup from just looking at him or her--you have to dig, and 
you have to dig deep. In order for an employer to be liable under this 
act, he or she would have to intentionally and deliberately go looking 
for genetic information and then use it against an employee. An 
employer literally would have to go out of his way to discriminate and 
that would be a problem.
    I understand the concerns of the skeptics in the business 
community. My record on business issues speaks for itself. I'm a 
supporter of business even by the business community's own standards. 
As the lead sponsor of this legislation during the 109th Congress, I 
met with them, discussed their concerns and worked with them.
    I think that everyone involved worked in good faith on this issue 
and these groups can trust that I will continue to give their concerns 
fair and honest consideration. However, I do believe it is important to 
point out that the bill I introduced in the 109th Congress, which is 
the same as the bill we are considering today, is already a compromise 
bill that accommodates many of the concerns the business community 
expressed about the previous version of the legislation that was 
introduced in the 108th Congress, H.R. 1910.
    Compared to H.R. 1910, the legislation that we consider today is 
different in four important ways. Our bill:
    1. Has a clear and precise definition of genetic information;
    2. Explicitly states that inadvertent acquisition of genetic 
information is not prohibited;
    3. Requires that claimants first exhaust administrative state and 
federal procedures before seeking court damages or equitable relief; 
under H.R. 1910, claimants could have gone directly to court; and
    4. Caps damages under existing Title VII standards, which include a 
small business threshold for coverage, and varying caps on damages 
depending on the size of the firm; H.R. 1910 had no damage caps.
    As a result of these accommodations, this legislation is much more 
business friendly than H.R. 1910 from the 108th Congress. I would 
stress that I support these changes and they should be maintained.
    Mr. Chairman, in passing this legislation, we have a unique 
opportunity to improve the health and lives of the American people. But 
we will never unlock the great promise of the Human Genome Project if 
Americans are too paranoid to undergo genetic testing. Without the 
protections offered by H.R. 493, these fears will persist, research at 
NIH will slow, and Americans and American businesses will never realize 
the benefits and savings of gene-based medicines.
    It's time the House joined the Senate and the President in 
supporting this critical bill.
    Thank you and I look forward to your questions.
                                 ______
                                 
    Chairman Andrews. Thank you both very much for your 
testimony.
    I wanted to pick up with Ms. Biggert's point, Ms. 
Slaughter, if I could, about her friend, the television 
reporter, who felt concerned about taking a genetic test for 
fear that the information would cause her to lose her job.
    The other concern that I think you, Ms. Slaughter, 
mentioned very well is the chilling effect on genetic research 
that is taking place right now because so many Americans have 
the fear that Ms. Biggert just talked about, that if they take 
a genetic test, that the information will be shared with people 
that they don't want to have it and there will be consequences 
for them with their employment or their health insurance that 
they do not wish to have.
    Make a prediction for us as to what you think would happen 
if we don't pass this legislation. What negative impact do you 
think it would have, failure to pass this legislation, on the 
evolution of genetic research?
    Ms. Slaughter. I think it has had a chilling effect 
already. Ms. Biggert and I have both talked about the numbers 
of people that have come to us as well as the number of 
physicians who have said to us we recommend to our patients not 
to have the test.
    Let me make one point again. I want to make sure--this is 
terribly important. Not a single one of us in this room, not 
the president of any company or any corporation, not the CEO of 
any health insurer is immune from this. It affects every single 
human being alive. The idea to discriminate against some of 
them who have had a test is appallingly bad.
    One wonders what would happen if we required all of the 
CEOs in these corporations to have their own genetic tests and 
let their board of directors and their stockholders find out 
what they might get in 30 or 40 years. And I would guarantee 
you that in very short order this bill would be passed. But 
scientists have already told us that people will not sign up 
for research projects and that people will not have the test--
or if they are terrified in the case of ovarian or breast 
cancer, they will find a way to get the test and try to pay for 
it themselves and try to keep the information private.
    It is an underground medical phenomenon that is going on. 
You only have to talk to a few people who have expressed the 
fear of what happened to them to understand the far-reaching 
aspects of this bill.
    I will never forget one woman who had received nothing but 
glowing reports from her employers, one promotion after another 
as she was quickly rising to the top. And they discovered that 
her brother had a genetic disease that would not affect her 
because it was only in the males in the family. And 
nonetheless, she was fired. And then try to get another job 
somewhere after you have been let go because you are considered 
not to be healthy enough.
    Chairman Andrews. And your bill would make that an unlawful 
employment practice?
    Ms. Slaughter. Yes.
    Chairman Andrews. For every person in the country, 
irrespective of what state they live in?
    Ms. Slaughter. Absolutely.
    But speaking of states, 30 states have already passed 
genetic discrimination. The difficulty is that we have so many 
corporations in this country that cover 50 states. You can 
think of them momentarily in a minute.
    Xerox, for example--let's say that you had, as a 
corporation head, you had to comply with 50 state bills and 
laws on genetic discrimination. You would beg for a federal law 
that everybody could comply with, know what they were dealing 
with and that you would not have to try to hire realms of 
lawyers to try to deal with the 50 states.
    Chairman Andrews. We are not against hiring lawyers. I want 
to go on the record as correcting that right away. We are kind 
of for it. I speak for myself, but I want to be very clear 
about that.
    Ms. Biggert, one of the concerns that was raised about in 
early discussions of the bill was what about an employer 
inadvertently acquiring genetic material. What does the 
underlying bill do in that case? If an employer inadvertently 
acquires genetic material, are they legally liable under your 
proposal?
    Mrs. Biggert. No, in fact, there is an exception for that. 
And it is called the water cooler exception. And that is if, 
you know, somebody talks about it at the water cooler or 
wherever and they discover that there is that predisposition, 
now, they can't use that. But it has to be that they would 
intentionally discriminate against somebody. But that is a 
carve out for the bill.
    Chairman Andrews. I know that another concern was the 
attraction of lawsuits, burdensome lawsuits. This bill imposes 
a requirement that people exhaust their administrative 
remedies. Isn't that correct?
    Mrs. Biggert. Right.
    Chairman Andrews. And if I read the bill correctly, in 
cases where the secretary of labor is deciding on penalties 
against a health insurer or an employer, the secretary of labor 
has the discretion to reduce penalties or to otherwise modify 
them. Is that also correct?
    Mrs. Biggert. Yes. But the way that a suit would happen 
would be with the EEOC.
    Chairman Andrews. Right.
    Mrs. Biggert. That would be the administrative remedy that 
most people would pursue. And then there is a cap on the 
damages. And it is Title 7, which is the Civil Rights Act so 
that the damages both punitive and compensatory cannot exceed 
$50,000 for an employer with 15 to 100 employees, $100,000 for 
an employer with 100 to 200 employees and $200,000 between 200 
and 500 employees and $300,000 for an employer with more than 
500 employees. So even if you are looking at the Burlington 
case, which was settled for $2.2 million, that probably 
wouldn't even reach that amount under this legislation.
    Chairman Andrews. As Ms. Slaughter said, this--I am sorry.
    Mrs. Biggert. That is okay. Yes. What we wanted to make 
sure is that there has to be some penalty because otherwise it 
might not be--you know, they wouldn't take it seriously. But we 
didn't want it to be onerous and to have the frivolous lawsuits 
or, you know, we didn't really want to create another lawsuit 
stream.
    Chairman Andrews. As Ms. Slaughter said, my sense of the 
bill is the result of very careful compromise over a long 
period of time.
    I am going to yield to Mr. Kline. Let me just say to the 
members I know that Ms. Slaughter and Ms. Biggert have other 
commitments. Anyone is welcome to ask any question they wish of 
the members. But to the extent that we can get the members on 
their way and get to the expert panel, we should. But, please, 
if you have questions for the members, please feel free. And I 
would start with my friend, Mr. Kline.
    Mr. Kline. Thank you, Mr. Chairman.
    And thank you, ladies, for being here. This is a very 
unusual position, especially with a very powerful chairwoman of 
the Rules Committee to be sitting there.
    Ms. Slaughter. It is a pleasure to be here. I have waited a 
long time for this.
    Mr. Kline. I know you have. And I want to commend both of 
you for the energy and passion that you have put into this 
legislation.
    Ms. Slaughter. It has been a pleasure working with Ms. 
Biggert.
    Mr. Kline. Well, perhaps I should take advantage of this 
opportunity and ask the chairwoman could we expect when this 
comes to the floor that we are going to have some amendments 
and some, you know, regular order and open rule.
    Ms. Slaughter. We don't prejudge any----
    Mr. Kline. I see.
    Ms. Slaughter. We not only have an open mind, we are 
pledged that once we get by this for 2006 six that you are 
going to see wonders performed.
    Mr. Kline. I am eager to get past the six for 2006. Thank 
you, Madam Chairwoman.
    Let me ask you this. An interesting issue just popped up 
during the chairman's questions. And that is the issue of 
preemption here. Are you saying that this legislation would 
provide a common law, common standard, if you will, nationwide 
and would preempt the 50 states? Or do we----
    Ms. Slaughter. That certainly is my hope.
    Mr. Kline. Okay. I am not sure that the language----
    Ms. Slaughter. Otherwise----
    Mr. Kline.--in your bill does that. So I am----
    Ms. Slaughter. Unless that happens, you are really going to 
be left with standards in various states. And, you know, it 
shouldn't be the luck of the draw where you are born, what 
state you are in whether you are going to be protected from 
discrimination or not. Discrimination is absolutely a federal 
issue.
    Mr. Kline. Thank you.
    And, Ms. Biggert, just to beat this horse one more time on 
this issue of intentional abuse versus accidental, I want to be 
clear that this language makes it clear that an employer who 
intentionally gets genetic information and intentionally 
discriminates against a potential or current employee because 
of that--that is what this legislation is aimed at, not 
accidental or unintentional misfiling kind of thing. Is that 
correct?
    Mrs. Biggert. That is correct.
    Mr. Kline. Okay. Okay. Thank you. And then I will yield 
back. I think Mr. Boustany would like to be recognized.
    Chairman Andrews. Do you want to yield your time to Mr. 
Boustany, the remaining time? Or does he want the full 5 
minutes?
    Mr. Kline. No.
    Chairman Andrews. Okay. Mr. Kildee is next for us.
    Mr. Kildee. Just a statement. I want to thank my two 
colleagues for pushing legislation to make sure that the law 
catches up with the emerging research that can be a boon to 
people but also can be used as a burden on those people. And 
the law should always catch up with the emerging research and 
technology. And you are right on top of things. And I just want 
to thank both of you.
    Ms. Slaughter. Thank you, Mr. Kildee.
    And let us make it clear again, both of us, that the entire 
scientific community in the United States--I haven't been 
through it to find every one of them, but everybody you know 
and respect and admire is in one of these letters. And they 
have been crying out for this bill for years because they 
really believe that there is a new way, particularly in the 
case of doctors, that they can provide health care. And I 
believe that that is the case.
    Chairman Andrews. Mr. Kildee, are you yielding back?
    Mr. Kildee. I yield back.
    Chairman Andrews. Thank you very much.
    Dr. Boustany, I understand, wants to ask a question. He is 
recognized for 5 minutes.
    Mr. Boustany. Thank you, Mr. Chairman.
    I am proud to co-sponsor this bill with you all. And I want 
to commend you on your diligence and persistence in moving 
this. And I am happy to see that this is actually going through 
the legislative process now.
    You know, the mapping of the human genome, science of 
genetics, I believe, represent one of the most important 
advances in medicine. And it is going to profoundly effect the 
way medicine is practiced in the future. And I think this 
debate highlights an inherent basic problem we have in our 
health-care system. And I want to highlight that.
    And that is we currently have the interposition of managed 
care entities, insurance companies, the employers as well as 
governmental entities and bodies between the doctor and the 
patient. And that is a problem because a lot of very sensitive 
information flows through that system that can be abused or 
leaked out in some fashion that could be harmful to the 
patient. And I think it is important that we look at that broad 
picture as we approach this legislation.
    And I am going to ask a question now. You don't need to 
answer this now, but I think it is a question that we as a 
committee need to entertain as we go forward.
    Will this bill, if passed, push employers and insurance 
companies and other entities that utilize sensitive health 
information out of that business for fear of lawsuits or as a 
result of lawsuits so that we eventually get to a point where 
we have just the doctor and the patient now dealing with 
sensitive information and these other entities simply dealing 
with actuarial data and statistical information only?
    And so, that is a question I think we need to entertain as 
we go forward in this debate.
    Again, I want to thank you all. I am looking forward to 
working with you on the bill.
    Ms. Slaughter. We appreciate your co-sponsorship.
    Mr. Boustany. I yield back.
    Chairman Andrews. Thank you very much.
    Mr. Holt is recognized for 5 minutes.
    Mr. Holt. Thank you, Chairman Andrews. And I am delighted 
to call you that. And I thank you for bringing this up as the 
first hearing of this subcommittee.
    Ms. Slaughter and Ms. Biggert, you have been persistent in 
this, and I thank you for that.
    And I would like to actually ask you something that maybe 
you are better able to answer than the witnesses who will be 
coming, which has to do with why a bill that makes such eminent 
good sense has been so slow to move. I mean, this is something 
that we know existing protections are minimal.
    We know this is consistent with not only the Health 
Insurance Portability Act and with the Americans with 
Disabilities Act and any number of other principled pieces of 
legislation, principled pieces of law out there. But clearly, 
there has been something standing in the way. And maybe things 
would change if we required CEOs of companies to take and 
disclose the results of intelligence tests to the public.
    But something is standing in the way. And I am wondering if 
you could characterize what it is that we have been up against 
here and why it is at this late date we haven't done it yet.
    Mrs. Biggert. Well, I think, first of all, is the fear of 
frivolous lawsuits. But it is more than that. I think people 
have a fear of getting the test because of what might happen. 
And I think Mr. Kline characterized it. There hasn't been the 
problem, so there doesn't need to be a solution.
    But the problem is that because the people fear doing this 
nobody is getting these tests, so nobody is finding out what 
they might be predisposed to. Nobody is in the trials so we are 
not finding the cure for the diseases that we should be able 
to. And so, it is like circular, that it is going round and 
round.
    There is no testing, so there is no problems of 
discrimination. I think that people fear the unknown. In fact, 
when I started out asking people, you know, would they want to 
get a genetic test. And so many people said I just don't want 
to know. I am afraid to find out even.
    Even though you said this has been going on for a long 
time, it really hasn't until recently. And we see all these 
cases on television, you know, with the people getting, you 
know, genetic tests. And it has been relegated to the criminal 
side of this. And now we are in this civil--and the technology 
has increased so. And technology usually outpaces us, you know, 
so that we have to catch up with it.
    And I think this is a case where we haven't caught up yet 
with our rules and regulations and how to deal with this. And I 
think it has taken that time and working with the business 
community and with--the insurers, you know, have reached the 
conclusion that this is--you know, they are for it. And now we 
just need to bring the employers along. And I think working 
with them over the past couple of years has helped.
    Ms. Slaughter. I signed an oath this morning that I would 
do nothing here but tell the truth, so I can't actually prove 
why we have never done anything about it. So let me restate 
this. We have this science. And this is made available to 
anybody. And we could have had it 12 years ago.
    And I think the Senate first passed it maybe 6 years ago. 
But, you know, it doesn't matter at all unless we have two 
houses and the president's signature. We could provide health 
care in a new way. We could save enormous amounts of money. But 
we could save enormous amounts of pain and anguish. And there 
are no losers here.
    If there were, we wouldn't have total bipartisan 
sponsorship on this bill. But I remember as a child when they 
first started doing organ transplants. And the idea was if God 
wanted you to have a good liver, he surely would have given you 
one. But we have to move past that mindset and take advantage 
of the wonderful new technology that can make us all better.
    And, you know, just think about it. Every member in your 
family, everyone you know and love could be discriminated 
against by this law easily. I mean, by lack of this.
    Mrs. Biggert. Let me just say, too, that it is not the 
business community so much. It is more the associations that 
have the fears. I mean, there are a lot of businesses doing 
this on their own. And you are going to hear from one today. So 
we have to kind of separate out that the whole community has 
problems with this because I don't think that that is true.
    Chairman Andrews. Gentleman's time is expired.
    Mr. Holt. I thank the witnesses. I yield back.
    Chairman Andrews. Thank you.
    Dr. Price, you are recognized for 5 minutes.
    Mr. Price. Thank you, Mr. Chairman. I want to add my voice 
to those individuals congratulating you on your chairmanship 
here. I look forward to working with you on this committee. I 
think this is an exciting committee. It is where the nuts and 
bolts of the larger committee will be. And I appreciate the 
opportunity to serve with you.
    I want to commend each of you as well for the work that you 
have done in bringing this issue forward. As a physician, 
though, I would be remiss if I didn't say that science is way 
ahead of politics virtually all the time.
    Ms. Slaughter. We need to catch up.
    Mr. Price. Well, I would respectfully suggest that it is 
impossible for us to catch up. We can work hard, and we can try 
to get there, but as soon as this bill is passed, science will 
be beyond us.
    But I did have a couple specific questions. I want to 
commend you for many items, not the least of which is the 
importance of clinical trials and making certain that folks 
aren't concerned or anxious or reticent about participating in 
clinical trials. And I know that you say that this bill 
protects individuals in clinical trials. And I should have 
spent more time reviewing it, but I can't find that 
specifically or explicitly stated.
    If you or your staff could be able to point me in that 
direction, that would be helpful. You may know.
    Ms. Slaughter. Yes, that people will not sign up for 
trials?
    Mr. Price. No, where in the bill it specifically says 
that----
    Ms. Slaughter. Well, all the bill does is protects you from 
discrimination from your employer and insurance company, which 
is really what the fear is to keep people out of the clinical 
trials. They don't want to be a part of that if their name is 
going to be bandied about and their employer says I had better 
be worried here because Joan is over in that test. There may be 
something wrong with her that I want to know about.
    Mr. Price. So it implicitly states that. Would you be 
willing----
    Ms. Slaughter. As far as we know, those are the two fears, 
Doctor, that they will be discriminated against in both their 
employment and insurance.
    Mr. Price. Would you be willing to consider some language 
that explicitly states that? I don't have any language, but 
if----
    Ms. Slaughter. That a person who agrees to undergo a 
clinical trial?
    Mr. Price. Clinical trial.
    Ms. Slaughter. I can tell you if they don't have the 
protections from discrimination no matter what, I don't think 
they would go into the trial.
    Mr. Price. Well, maybe we can talk about that.
    Ms. Slaughter. All right, certainly, be glad to.
    Mr. Price. And my good friend, Mr. Kline, talks about the--
he is gone, I see. But he talks about the reason that this may 
not be coming to pass to date is because we haven't provided 
for intelligence tests for CEOs. I would respectfully suggest 
that if we provide an intelligence tests for members of 
Congress, we might get closer to the answer as opposed to the 
other.
    Ms. Slaughter. Do you know I have been obsessed with the 
idea of a national I.Q. test? I don't know any way we could 
ever do it, but I bet it would really make us think. 
[Laughter.]
    Mr. Price. There you go.
    I have a couple very specific questions. And again, it may 
be that your staff may be able to help me more. But I know that 
it is not oftentimes felt by people, but there are insurance 
companies who are indeed interested in the health of their 
insured.
    Ms. Slaughter. Of course.
    Mr. Price. And in the bill----
    Ms. Slaughter. I hope they all----
    Mr. Price.--in multiple places throughout the bill it 
states that an insurance company may not require explicitly a 
genetic test in spite of the fact that, as you say, genetic 
tests oftentimes can reveal clinical situations that would 
benefit from treatment, preventive sorts of treatment.
    Is there a rationale for that?
    Ms. Slaughter. I think there are some exceptions in here. 
For example, if they are employed in the kind of job--let me 
see.
    Mr. Price. Maybe it is just a----
    Ms. Slaughter. Employment agencies, labor organizations can 
require genetic information in the following circumstances: 
when they offer a health service program; when the employee 
provides written authorization; when the information is used to 
monitor the biological effects of toxic substances in the work 
place but only if the employer provides written notice of 
genetic monitoring, the employee provides written authorization 
and genetic monitoring is required by federal or state law, the 
employee is informed of the monitoring results, the monitoring 
is conducted in compliance with federal genetic monitoring 
regulations and the identity of specific employees is not 
disclosed.
    Mr. Price. Maybe we can talk about that as well, as we go 
through this process.
    Ms. Slaughter. Sure, all right.
    Mr. Price. And I appreciate the opportunity to have some 
input into that. I think it is important that we not limit the 
ability of an insurance company, for example, to highlight and 
recommend the types of tests or screening tests that they would 
see as appropriate for the insureds to assist in the health 
outcomes of the other treatments.
    Ms. Slaughter. As long as the health insurer recognizes her 
husband or his wife to be part of this as well----
    Mr. Price. Absolutely, yes, without a doubt.
    And then finally, I wonder if each of you might comment on, 
if an individual is let go from employment for a reason not 
related to genetic testing, who would have the burden of proof 
if the employee were then to bring a complaint forward? Is it 
the employer that would have the burden of proof to prove a 
negative? Or is it the employee that would have the burden of 
proof to prove that that, in fact, didn't occur or did occur?
    Mrs. Biggert. If they go to the EEOC, which they would, 
exhaust the administrative law, usually when that happens, as I 
recall in having done this, is that the employee, you know, 
submits their charges to the EEOC and then the EEOC decides 
whether this case should go forward or not. So it really is the 
burden of the employee to bring that to the EEOC.
    Mr. Price. To bring the case to prove the case?
    Mrs. Biggert. Yes. And if then under that law if they--at 
least in terms of civil rights--if they are denied, then they 
can go to the courts after that.
    Chairman Andrews. Yes, the gentleman's time is expired.
    Mr. Price. Thank you so much, Mr. Chairman.
    Chairman Andrews. Ms. Slaughter, did you want to answer the 
question?
    Ms. Slaughter. No, I think Ms. Biggert did a wonderful job.
    Chairman Andrews. Okay.
    The representative of one of the more dynamic legislatures 
in the world, the New York City Council, who is now our 
colleague, Congresswoman Clarke, is recognized for 5 minutes, 
alumnus of the New York City Council.
    Ms. Clarke. Thank you very much, Mr. Chair.
    And to Representative Slaughter and Representative Biggert, 
thank you so much for bringing this legislation to light. I 
look forward to being a strident advocate on behalf of this 
legislation.
    Mr. Chairman, there are constitutional issues relating to 
employers who use potential employees and genetic information 
as a basis for employment. It is my hope that this hearing 
today will bring clarity to the hiring practices of people, and 
in particular, I am most concerned with this type of 
discrimination heavily affecting African-Americans who are 
purported to be genetically predisposed to sickle cell disease 
or to Jewish Americans who are predisposed to Tay-Sach's 
disease.
    This predisposition, particularly with regard to sickle 
cell disease, does not guarantee that every African-American 
with the genetic signature will manifest the disease. And H.R. 
493, the Genetic Information Nondiscrimination Act of 2007, 
also known as GINA, introduced by Representative Slaughter is 
an attempt to correct discriminatory practices using genetic 
information as a basis for the discrimination.
    The human genome project produced detailed maps of 23 pairs 
of human chromosomes and sequenced 99 percent of the 3 billion 
nucleitized bases that make up the human genome. The sequenced 
information should aid in the identification of genes' 
underlying disease raising hopes for genetic therapies to cure 
disease. But this scientific accomplishment is not without 
potential problems, potential abuse and potential misuse, which 
is why we are here today.
    The ethical, social and legal implications of these 
technological advances have been the subject of significant 
scrutiny and concern. However, there have yet to be answers to 
the questions of how we legally protect our citizens from 
discrimination. If all the answers to all the questions were 
available, we wouldn't be here today.
    Mr. Chairman, my constituents in the 11th District of New 
York, the borough of Brooklyn, suffer from an abnormally high 
unemployment rate. Throughout New York City, according to the 
2004 study by the Community Service Society, ``A Crisis of 
Black Male Unemployment and Joblessness in New York,'' the 
study finds that city-wide unemployment rates stood at 8.5 
percent in 2003, but for many groups of New Yorkers it was 
considerably higher. It includes teens at 28.7 percent; young 
adults, 13.1 percent; blacks at 12.9 percent; Hispanics at 9.6 
percent. And these concerns will be compounded as we move 
forward with such a technologically advanced society.
    Should genetic information be able to flow seamlessly 
between employers and those that have the capacity to get this 
information out, citizens unknowingly could be prevented from 
being hired.
    And so, today, Mr. Chair, I would like to submit my 
comments and the report for the record* and thank both of you 
for bringing this to light. Thank you very much, Mr. Chair.
---------------------------------------------------------------------------
    *The February 2004 report, ``A Crisis of Black Male Employment, 
Unemployment and Joblessness in New York City, 2003,'' has been made a 
permanent part of this record and is archived at the Committee on 
Education and Labor. The report may also be viewed on the Internet at 
the following address: http://www.cssny.org/pubs/special/2004--
02labormarket.pdf ]
---------------------------------------------------------------------------
    [The statement of Ms. Clarke follows:]

   Prepared Statement of Hon. Yvette D. Clarke, a Representative in 
                  Congress From the State of New York

    Mr. Chairman, there are constitutional issues relating to employers 
who use potential employees genetic information as a basis for 
employment. It is my hope that this hearing today will bring clarity to 
the hiring practices of people and in particular, I am most concerned 
with this type of discrimination heavily affecting African-Americans 
who are purported to be genetically predisposition to sickle cell 
disease and Jewish Americans who are predisposed to Tay-Sacks disease.
    This predisposition to sickle cell disease does not guarantee that 
every African-American with the genetic signature will manifest the 
disease. H.R. 493, the Genetic Information Nondiscrimination Act of 
2007, introduced by Representative Slaughter is an attempt to correct 
discriminatory practices using genetic information as a basis for the 
discrimination.
    The Human Genome Project produced detailed maps of the 23 pairs of 
human chromosomes and sequenced 99% of the three billion nucleotide 
bases that make up the human genome. The sequence information should 
aid in the identification of genes underlying disease, raising hope for 
genetic therapies to cure disease, but this scientific accomplishment 
is not without potential problems and potential abuse or misuse.
    The ethical, social and legal implications of these technological 
advances have been the subject of significant scrutiny and concern; 
however, there have yet to be answers to the questions of how do we 
legally protect our citizens from discrimination. If all the answers to 
all the questions were available, we would not be here today.
    Mr. Chairman, my constituents in the 11th district of New York, the 
borough of Brooklyn, suffers an abnormally high unemployment rate. 
Throughout New York City, according to a 2004 study by the Community 
Service Society, ``A Crisis of Black Male Employment--Unemployment and 
Joblessness in New York City, 2003''. The Study finds that:
     The citywide unemployment rate stood at 8.5 percent in 
2003. But for many groups of New Yorkers it was considerably higher. 
That includes: teens, 28.7 percent; young adults, 13.1 percent; Blacks, 
12.9 percent; Hispanics, 9.6 percent; people with less than a high 
school degree, 11.2 percent; and blue collar workers, 10.1 percent.
     Compared with 2000, a larger share of the unemployed has 
been jobless for more than 26 weeks, the period for which they are 
eligible for Unemployment Insurance benefits. In 2000, less than three-
in-ten (28.0 percent) of the city's unemployed city residents had been 
out of work for more than 26 weeks. In 2003, that proportion climbed to 
four-in-ten (39.7 percent).
     Declines in jobholding since the business cycle peak of 
2000 have been particularly steep for men. The employment-population 
ratio (the proportion of the working age population with a job) for 
male city residents tumbled by 5.4 percentage points compared to a 2.2 
percentage point fall for women. Among New York's men the sharpest 
declines in employment-population ratios were for the young (a 11.6 
percentage point fall), Hispanics (a drop of 7.1 percentage points) and 
Blacks (a 12.2 percentage point plunge). Jobholding among women has 
been sustained by the continued expansion of the educational and health 
care sectors of the city economy.
     The collapse in Black male employment in the recession was 
preceded by meager job growth in the prior expansion. As a result, 
African American men have lost ground relative to other groups in the 
city. In 2003 barely one-half (51.8 percent) of New York's Black men 
were employed. By comparison, 57.1 percent of the city's Black women 
and 75.7 percent of New York's White men were working in that year.
    Mr. Chairman, I seek unanimous consent to have the complete study 
submitted to the record. Thank you Mr. Chairman
                                 ______
                                 
    Chairman Andrews. Without objection. And we thank you for 
your comments.
    Now, I think the comments are very well taken that there is 
a risk that genetic testing in the wrong hands could be a 
Trojan horse for another form of discrimination, be it based on 
race or ethnicity. And we don't ever want that to happen.
    Mr. Hoekstra is recognized for 5 minutes.
    Mr. Hoekstra. Thank you very much, Chairman Andrews. Good 
to see you, and good to be back on the committee.
    For the panel, in the definition of the bill, a family 
member is defined to include ``a dependent child of the 
individual, including a child who is born or to be placed for 
adoption with the individual.''
    I am a sponsor of the bill. I think that it is important 
that we address this issue and we address it properly. But I am 
wondering whether this may be an unintentional oversight, 
because I am very concerned that by including the qualifiers 
born to or placed for adoption, this definition, does not 
protect an embryo, fetus or a child in the process of adoption 
from genetic discrimination.
    For example, if prenatal screening suggests that an unborn 
child carries a genetic marker for an illness, that child is 
still potentially the victim of discrimination on the basis of 
his or her genetic makeup, as is the parent.
    Insurance coverage or treatments could be limited based on 
the results of those genetic tests until the child is ``born 
to'' the parent or a pending adoption is completed.
    In that light, I would like to ask, am I reading the 
language correctly? And if so, I would hope that there would be 
broad consensus by my colleagues that this is a loophole we 
should close if we are to give this bill serious legislative 
consideration.
    Mrs. Biggert. Thank you. We looked very closely at this. 
And this was a definition that the Senate put in. And we had 
some concerns about it. But I think it is--let me just give the 
explanation to that.
    Mr. Hoekstra. Yes, I mean, just because the Senate did it 
doesn't----
    Mrs. Biggert. I know. We have to be careful in the Senate--
--
    Mr. Hoekstra. We have to be careful, yes.
    Mrs. Biggert. So I think that under that definition that 
every child is protected. I think that is indisputable. But the 
term ``born to'' is intentionally used to provide the broadest 
protection in that there simply can be no argument regarding 
the circumstances of birth.
    While one might have used the term ``natural''--and I think 
that years ago the use of ``born to'' closes the door to any 
arguments against protection on grounds that the child was 
conceived by extraordinary means, such as if parents utilized 
fertility treatments to have a family. And that is why that was 
put in, to make sure that it covers all children.
    Mr. Hoekstra. I am not sure you have answered the question. 
I mean, does it----
    Mrs. Biggert. Okay.
    Mr. Hoekstra. The couple is expecting. There is prenatal 
testing done that said that this child maybe, you know, has a 
genetic marker indicating that there is going to be an issue or 
a high probability of an issue, a health issue that an 
insurance company is concerned about. And insurance companies 
are in the--you know, to kind of cut down costs.
    And so, could they at that point in time provide the 
company or the parents with the information saying, you know, 
we have done this testing, we have determined that this 
condition exists, and therefore, we are telling you today that 
we will not cover the health-associated costs if this child is 
born to?
    Mrs. Biggert. Okay. Well, first we have to keep in mind 
that the genetic information would be used to prospectively 
discriminate to attempt to project future risks. And since the 
employment is not an issue and health coverage is already 
assured, a fetus is essentially shielded under its mother's 
current insurance law.
    And in practice no provider of health-care coverage would 
improperly act against the unborn's interest, both because of 
the shield of the mother and the fact that after birth a child 
is fully protected.
    Mr. Hoekstra. So if it is consistent with other federal 
rules and regulations, you would be open to having that 
clarified here? Because it appears that in this legislation 
that you may be trying to create a carve-out and saying that 
genetic discrimination would be allowed for these cases. 
Because you are clearly exempting it.
    So why don't we just clarify it and say that it would also 
apply to unborn, the unborn?
    Mrs. Biggert. Well, we will take a look at it. But 
someone's genome does not change after birth. A child's genetic 
information is protected, regardless of when it was obtained if 
it was obtained before or after.
    Mr. Hoekstra. What I am concerned about is obtaining it 
before it is born and impacting potential decisions before it 
is born to.
    Mrs. Biggert. Okay. We will take a look at that.
    Mr. Hoekstra. I mean, yes, I would really like to work with 
you because I think the bill is very, very important. But I 
think that this is a loophole that needs to be closed. And I 
would like to work with you on preparing an amendment that we 
can put into the bill to cover and deal with that issue.
    All right. Thank you.
    Chairman Andrews. Yield back, Mr. Hoekstra?
    Mr. Sestak is recognized for 5 minutes.
    Mr. Sestak. Thank you.
    Congresswoman, I just have a short comment. First, this is 
important. And I would just ask to make a comment because there 
aren't any laws in Pennsylvania presently that prohibit this 
genetic discrimination in either the health insurance or 
employment.
    But more along a personal note, I can remember about a 
year-and-a-half ago as I was starting my 30th or 31st year in 
the military when the world changed for me and my young 4-year-
old daughter was diagnosed with a malignant brain tumor. And, 
you know, you go through the typical reactions. As a guy, did I 
cuddle her too hard or do something wrong?
    And as you work your way through that, I can remember down 
at Children's Hospital someone came in one day and asked us to 
participate in a genetic and environmental--genetic for the 
family--review and test because they are trying to get to the 
bottom line of why these tumors happen. And only 1,500 of them 
happen every year, malignant brain tumors, many of them death 
sentences.
    And I just think this bill is--not that I have much to 
add--goes a long way toward my daughter when she has her child 
is not going to be worried about a genetic testing because many 
are going through it today in order to ensure that, you know, 
without any hopefully concern under this law that I or my wife 
or others could be precluded from something in the future 
having gone under a necessary--I think necessary--review 
process so that her child would be able to know if there is a 
predilection toward it without her having to have concerns for 
her family or others that would be precluded from coverage or 
other type of discrimination in the future.
    And so, not much to add, except to say thank you very much.
    Ms. Slaughter. I am very moved by your story. There is 
nothing worse than having a child who is in that kind of 
difficulty.
    Certainly, one thing this bill will do, as you point out, 
when she herself goes to find a job, she will not be 
discriminated against because of what happened to her when she 
was 4 years old. And that is an important point. I think that 
it is one that needs to be made. Thank you very much for making 
it.
    Mrs. Biggert. I think that we find that, you know, it isn't 
always an immediate problem, but it is what will happen to our 
children and grandchildren when they--if they have had a test 
when they are 4 years old and they go on and move to another 
state, whatever they are doing. It is important.
    Mr. Kildee [presiding]. Are there other members who wish to 
ask questions? Gentlemen?
    Mr. Courtney. Thank you, Mr. Chairman.
    And I want to thank the witnesses for their advocacy for 
this wonderful legislation. And, you know, coming from 
Connecticut, some people think we have a genetic disposition 
toward being obsessed with insurance. [Laughter.]
    So I actually just had a question I wanted to ask you 
about. It is pretty clear that life insurance is exempted from 
the reach of this bill, and appropriately so. I mean, I think 
that the type of insurance where choosing risk or even avoiding 
risk makes sense because it is not an important issue like 
health insurance.
    But there are a lot of employers who are involved with 
their workers at the time of purchasing life insurance, either 
through a benefit structure that they have or offer to their 
employees.
    And looking at the employment provisions and the limitation 
on acquisition, I mean, I am just trying to visualize that 
there certainly could be instances where workers are in the 
process of trying to sign up for life insurance through work 
will be asked to take genetic tests and that information will 
be sort of available to employers and to insurers.
    And I guess I wanted to ask Ms. Biggert because it sounds 
like she was working with the business community, you know, 
whether or not that sort of scenario was contemplated in terms 
of the inadvertency exemption or--because you don't want to 
obviously discourage people from signing up for life insurance, 
either.
    Mrs. Biggert. I think that is why that was carved out, the 
water-cooler exemption where an employer inadvertently learns 
about that. And that would be a case if they learned that 
through the life insurance, that they could not use it. But 
they would not be, you know, discriminating if they just found 
out about it inadvertently.
    But it is very important for life insurance. I mean, that 
is how they determine what life insurance they can give to 
people. So it is something that has no application here.
    Mr. Courtney. Because, you know, if you are offering that 
as a benefit and people are doing it as part of a program at 
work, I mean, that is sort of not so inadvertent. I mean, it is 
more of a----
    Mrs. Biggert. Right. Well, it is just like the wellness 
program that a lot of companies--and I think you will hear 
testimony about that later today and how they want, you know, 
people to get tested so that they will participate in their 
wellness programs and then that will reduce the costs of health 
care to the employer, too, and to the insurer because if the 
people stay healthy it is not going to cost so much. Same thing 
with being able to have the life insurance.
    And I would say that usually life insurance within a 
company is term insurance so that they are not really getting 
involved in asking those questions as much as if you go for 
outside, you know, to get life insurance as an individual.
    Mr. Courtney. Thank you, Mr. Andrews.
    Chairman Andrews [presiding]. Thank you, Mr. Courtney.
    Thank you, Mr. Kildee, for sitting here just for a while. I 
don't want to give this up for too long.
    Ms. Slaughter. Mr. Chairman?
    Chairman Andrews. Yes.
    Ms. Slaughter. May I ask unanimous consent to put these 
into the record?
    Chairman Andrews. Without objection.
    Ms. Slaughter. And I also want to correct something I said 
to Mr. Kline. Like all federal insurance preemptions, any state 
that has stronger law, that will be the one that is in effect. 
Two of the 30 states already have stronger laws than this one. 
This would not supercede their law.
    Chairman Andrews. Mr. Kline, since this is directed to 
you----
    Mr. Kline. Yes, I appreciate the chairwoman clarifying that 
because I think that is an issue that we are going to have to 
discuss. Our 50 states have different laws here, some stronger 
and some not. And so, I can see some potential mischief. So 
thank you for clarifying.
    Chairman Andrews. I want to thank both of our colleagues 
for the generous amount of time they have contributed to this 
hearing this morning.
    Mr. Kline made reference to regular order during his 
remarks. I support his remarks and embrace them. I think the 
benefits of regular order are considerable.
    And this is one of the better examples of how to do regular 
order. Our two colleagues have spent an enormous amount of time 
on this issue. They have met with all different groups that 
have a stake and interest in the issue. I think they have 
produced a thoughtful, well-balanced legislative product. And 
they have ably answered all of our questions here this morning.
    So we thank you.
    And at this point, we will go to the second panel.
    Ms. Biggert, you are welcome to join us on the committee.
    And, Ms. Slaughter, we will see you in Rules.
    Okay, I would ask the second panel to please join us at 
this time.
    All right, ladies and gentlemen, we are going to proceed to 
the second panel. I would, first of all, thank our four 
witnesses for spending time with us today.
    I know that each of the four of you are busy and have much 
to do with your work and your family. And we are glad that you 
took time with us.
    You will notice in front of you there is a panel of lights. 
We ask the witnesses to limit their statements to 5 minutes or 
less. Your written statements will, without objection, be 
entered into the formal record of the hearing. But you are 
welcome to speak extemporaneously, should you choose. You will 
then be asked questions by the members of the committee, as you 
just heard.
    I want to introduce the witnesses.
    Karen Rothenberg is the Dean and Marjorie Cook professor of 
law at the University of Maryland School of Law in Baltimore, 
Maryland. She has written and published and lectured 
extensively on the areas that are in front of us today.
    And she has a niece in show business, she told me, which 
gives her a common interest with me.
    Ms. Rothenberg, the reason I left to make a call is my 
daughter just got a callback, which I just heard. And you know 
the delight of hearing that news.
    So anyone from Screen Actors Guild in the audience, pay due 
note to that point. [Laughter.]
    David Escher, who has been with the committee before. This 
is his second appearance before the subcommittee. Mr. Escher 
was formally employed by the Burlington Northern Santa Fe 
Railroad. He is a devoted parent, as you will hear in his 
testimony about his concern about his children on how they were 
affected by his ordeal.
    Welcome, Mr. Escher.
    Ms. Harriet Pearson is the vice president for corporate 
affairs and the chief privacy officer for IBM, Incorporated, 
was educated at Princeton University in New Jersey, which 
explains a great deal about her success in life and her success 
at IBM. And we look forward to hearing her view as someone 
responsible for these issues in one of America's most important 
corporations.
    And another, I believe, veteran of our committee, someone 
who has been an able and wise voice on issues that we have 
confronted for a long time is Burton Fishman, who is a partner 
in the Fortney Scott law firm, who is testifying on behalf of 
the Genetic Information Nondiscrimination and Employment 
Coalition, a long name indeed.
    So, welcome.
    And we would begin, Dean Rothenberg, with your testimony. 
We welcome you to the committee.

STATEMENT OF KAREN ROTHENBERG, DEAN AND MARJORIE COOK PROFESSOR 
          OF LAW, UNIVERSITY OF MARYLAND SCHOOL OF LAW

    Ms. Rothenberg. Thank you. Good morning, Chairman Andrews, 
members of the subcommittee. Thank you very much for the 
opportunity to be with you today.
    As Chairman Andrews mentioned, I have been working for 
about the last 13 years on issues involving the ethical, legal, 
and social implications of genetic information. And I had the 
pleasure of chairing the committee on genetic information in 
the workplace, which was a joint workshop of NIH, the 
Department of Energy, and the National Action Plan on Breast 
Cancer in the late 1990s that, in fact, developed the framework 
for many of the state and federal legislative proposals. Most 
recently, my research has focused on the use of genetic 
information in the courtroom.
    I would like to begin by putting in context our concerns 
about genetic discrimination in the workplace. Almost 20 years 
ago Congress committed to investing in the human genome project 
because it shared the vision of a revolution, a revolution in 
medicine that would improve the health of all Americans. Their 
goal was not to provide health insurers and employers tools to 
weed out individuals that some day would generate large health-
care costs.
    To date, close to $3.5 billion has been appropriated to 
fund genomic research for the American people. The return on 
this investment is substantial and the potential to transform 
medicine as we know it. But unless Congress acts to address 
these perils associated with unauthorized dissemination of 
genetic information, we may never be able to make the 
transition from the research laboratory to the doctor's office.
    Even in the early days of the Human Genome Project people 
were concerned about social risks associated with research and 
anticipated that strong protections against misuse of genetic 
information would be established. Yet here we are 20 years 
later with enormous advances in scientists' ability to sequence 
and interpret DNA, and yet we are yet to achieve a federal law 
to safeguard genetic information. So the tremendous promise of 
genomics is hamstrung by fear.
    First, how extensive is the fear? And why does it matter? I 
think in the interest of time I will just point out again that 
Congresswoman Slaughter mentioned a number of polls that have 
been taken in the last few years that substantiate that this 
fear is real. She also mentioned that genetic discrimination 
has a significant impact on biomedical research and potentially 
on health-care decision-making.
    Although it has the promise to unlock new diagnosis and 
treatments and even to assist in pharmacogenetics and therapies 
tailored to individuals' genetic makeup, we will not be able to 
move forward, as mentioned earlier, unless individuals that 
might benefit are willing to participate in clinical trials. 
Fear that information will become available to and misused by 
employers or insurers has, in fact, chilled participation, 
including a 2003 NIH study of families at risk for a certain 
form of colon cancer.
    Nearly half of the family members at 50 percent risk for 
inheriting a cancer-inducing mutation associated with colon 
cancer were not willing to participate in any aspect of the 
study because of fear of discrimination. Now, where does this 
come from? And is it justified? Perhaps it would be helpful to 
place these questions in historical context.
    In the early 1920s Congress relied on genetic science and 
the genetic inferiority of racial, ethnic, and disadvantaged 
groups to restrict immigration into this country. It was in 
part the basis of restrictions in the immigration laws in the 
1920s. State legislatures followed by promoting sterilization 
laws based on this same rationale. And eugenics was the 
scientific justification for killing millions during the 
holocaust.
    During an early 1970s in this country African-Americans who 
were carriers for the gene mutation associated with sickle cell 
disease were denied insurance coverage, charged higher rates.
    Chairman Andrews. Excuse me, Dean. The 5 minutes has 
expired, so if you could just briefly summarize.
    Ms. Rothenberg. My goodness. Okay.
    Chairman Andrews. I should have said this, that when the 
light starts to blink, that is the 1-minute warning.
    Ms. Rothenberg. Okay. Well, I guess I wasn't looking up to 
see the blink.
    Chairman Andrews. As a former law student, I have always 
wanted to ask a dean to stop talking. [Laughter.]
    Ms. Rothenberg. Right.
    Chairman Andrews. So I have now achieved one of my goals in 
life. [Laughter.]
    Ms. Rothenberg. Well, I think now that I have moved past 
recent history and you have heard about Burlington, why don't I 
spend a little time, if I might, if I have another minute, on 
why we aren't seeing the cases and some of the concerns about 
the employers. Would that be all right?
    Chairman Andrews. Of course. Yes, of course, Dean.
    Ms. Rothenberg. Okay.
    Chairman Andrews. And, of course, without objection, your 
statement has been entered into the record in full.
    Ms. Rothenberg. Great, thank you.
    So why do we have currently so little evidence of 
widespread discrimination? In fact, some have argued that is 
why we don't need the legislation. It is true that in recent 
years we have not been able to quantify the incidents of 
genetic discrimination. Why?
    First, we don't have widespread utilization of genetic 
services. Second, individuals often will not know or understand 
the underlying basis for an insurance or employment decision. 
Third, without clear legal remedies, healthy individuals with a 
genetic predisposition for a medical condition may be adverse 
to risking their loss of privacy for themselves and their 
families by going public with a discrimination claim as opposed 
to with race or sex.
    So don't be concerned about frivolous lawsuits. The burden 
is very difficult still for a plaintiff in these circumstances.
    Finally, as a matter of law, discrimination cases that 
settle or resolve themselves at trial court levels never are 
formally reported. In my statement, I will delineate for you 
that currently under HIPPA, under the ADA, and under Title VII 
there are loopholes that this legislation attempts to close. 
And so, as a matter of public policy, if you ask me the 
question do you still need to pass a federal law, the answer 
would clearly be yes.
    I would say in the rest of my testimony I will delineate 
for you what the collective wisdom is, what this legislation 
needs to include, and finally, the undue burden on the business 
community I would just like to end with two points.
    First, if we are to assume that employers are complying 
with the applicable state laws currently on the books, then a 
federal law should not represent a significant new burden. 
Secondly, employers and those representing the insurance 
community have long maintained they are not currently using 
genetic information to determine eligibility or employment 
status. If so, a federal prohibition should not burden these 
practices. It would simply prevent misuse and integrate into 
compliance efforts.
    To me I am not aware of any data that demonstrates 
increased cost to employers for complying with these state 
laws. So in summary, it is my hope that passage of a 
comprehensive law will move us forward to honoring our 
commitment to improving our understanding of genetics and the 
positive impact on the health of all Americans.
    Thank you.
    [The statement of Ms. Rothenberg follows:]

    Prepared Statement of Karen Rothenberg, Dean and Marjorie Cook 
         Professor of Law, University of Maryland School of Law

    Good morning, Chairman Andrews and members of the Subcommittee. 
Thank you for the opportunity to speak with you today. I am Karen H. 
Rothenberg, Dean, Marjorie Cook Professor of Law, and the founding 
Director of the Law & Health Care Program at the University of Maryland 
School of Law. Over the last decade or so, a primary area of my 
research has been on the ethical, legal, and social implications of 
genetic information and I have published numerous articles on genetics 
and public policy. I also chaired the Committee on Genetic Information 
and the Workplace (a joint project of the NIH-DOE Working Group and 
National Action Plan on Breast Cancer) that developed the framework for 
state and federal legislative proposals. Most recently, I co-authored 
an article in Science with my colleague Diane Hoffmann of the 
University of Maryland School of Law on the use of genetic information 
in the courtroom.
    I would like to begin by putting in context our concerns about 
genetic discrimination in the workplace. Almost 20 years ago, Congress 
committed to investing in the Human Genome Project because it shared 
the vision of a revolution in medicine that would improve the health of 
all Americans. Their goal was not to provide health insurers and 
employers new tools to weed out individuals that might someday generate 
large health care costs. To date, close to three-and-a-half billion 
dollars has been appropriated to fund the promise of genomic research 
for the American people. The return on this investment is substantial 
and has the potential to transform medicine as we know it. But, unless 
Congress acts to address the perils associated with unauthorized 
dissemination of citizen's genetic information, we may never be able to 
make the transition from the research laboratory into the doctor's 
office.
    Even in the early days of the Human Genome Project, people were 
concerned about the social risks associated with genetic research and 
anticipated that strong protections against misuse of genetic 
information would be established. Yet here we are almost 20 years 
later, with enormous advances in scientists' ability to sequence and 
interpret our DNA, and we have yet to achieve a federal law to 
safeguard genetic information. The tremendous promise of genomics is 
hamstrung by fear.
    How extensive is this fear of genetic discrimination, and why does 
it matter?
     Fear of genetic discrimination is widespread in the 
American public. A 2006 survey by Cogent Research showed that 72 
percent of respondents agreed the government should establish laws and 
regulations to protect the privacy of genetic information. Eighty-five 
percent believed that without a specific law on point, employers will 
discriminate. Sixty-four percent believed that insurance companies will 
do everything possible to use genetic information to deny health 
coverage. Recent polls conducted by the Wall Street Journal Online/
Harris Interactive Healthcare and the Genetics and Public Policy Center 
showed similar results.
     Fear of genetic discrimination has a negative impact on 
biomedical research and potentially, healthcare decision making. 
Genetic research holds tremendous promise to unlock new diagnoses and 
new treatments, and even to assist in the creation of pharmaceutical 
therapies tailored to an individual's genetic makeup. However, 
scientific research and development cannot progress without clinical 
trials, and these trials can move forward only if individuals who could 
benefit are willing to participate. Fear that information will become 
available to and be misused by health insurers or employers has chilled 
participation in many studies of genetic conditions. For example, in a 
2003 NIH study of families at risk for heredity nonpolyposis colorectal 
cancer (HNPCC), the number one concern expressed by participants 
regarding genetic testing was concern about losing health insurance 
should the knowledge of their genetic test result be divulged or fall 
into the ``wrong hands''. Thirty-nine percent of participants cited 
this as the most distressing issue relating to genetic testing. Nearly 
half of family members at 50 percent risk for inheriting a cancer-
inducing mutation were not willing to participate in any aspect of the 
study because of their fear of discrimination.
    Where does this fear of genetic discrimination come from; and is it 
justified?
    Perhaps it would be helpful to place these questions in historical 
context. In the early 1900's, Congress relied on the use of ``genetic 
science'' and the ``genetic inferiority'' of racial, ethnic, and 
disadvantaged groups to restrict their immigration into this country. 
State legislatures promoted sterilization laws based on the same 
rationale and eugenics was the ``scientific justification'' for killing 
millions during the Holocaust. During the early 1970's, African 
Americans who were carriers for the gene mutation associated with 
sickle cell disease were denied insurance coverage, charged higher 
rates, and lost their jobs. More recently, the Burlington Northern 
Santa Fe Railway Company paid up to $2.2 million to settle a 2002 
lawsuit brought by employees who were secretly tested for a genetic 
variation purported to be associated with carpal tunnel syndrome.
    Nevertheless, because there is currently little evidence of major 
problems with widespread discrimination, some might argue that there is 
no need for legislation. It is true that in recent years we have not 
been able to quantify the incidence of genetic discrimination. Why? 
First, we do not have widespread utilization of genetic services. 
Second, individuals often will not know or understand the underlying 
basis for an insurance or employment decision. Third, without clear 
legal remedies, healthy individuals with a genetic predisposition for a 
medical condition may be averse to risking loss of privacy for 
themselves and their families by going public with a discrimination 
claim, a greater risk than if the claim were based on race or sex. 
Finally, there may in fact be discrimination cases settled or resolved 
at the trial court levels that are never formally reported.
    This raises an interesting public policy question: is it prudent to 
pass preventive federal legislation based on a fear of genetic 
discrimination? I would argue ``yes,'' if we are to fully benefit from 
the promise of genetic research.
    Over the last decade, most states have enacted genetic 
nondiscrimination legislation, although the scope of protection varies 
widely. Forty-one states have passed laws on discrimination in the 
individual health insurance market and thirty-four states have passed 
laws on genetic discrimination in the workplace. There have also been 
patchwork approaches at the federal level. For example, President 
Clinton's Executive Order 13145 protects federal employees from genetic 
discrimination in the workplace. Federal laws such as HIPPA, the ADA, 
and Title VII of the Civil Rights Acts may provide some protection, but 
there remain loopholes and gaps in coverage:
     HIPAA prohibits raising rates for or denying coverage to 
an individual based on genetic information within the group coverage 
setting, but HIPPA protections are limited to only the group market. It 
does not cover individual insurance plans. The Federal Privacy Rule, 
authorized by HIPAA, protects the use and disclosure of individually 
identifiable health information, including genetic information. The 
Rule does not prohibit the use of genetic information in underwriting. 
If a company determines that the individual is likely to make future 
claims, they could be charged higher premiums or denied coverage.
     The ADA was designed to protect those individuals who are 
living with a disability. The ADA defines disability as 1) a physical 
or mental impairment that substantially limits one or more of the major 
life activities of an individuals; 2) a record of such impairment; or 
3) being regarded as having such an impairment. While the ADA provides 
protections for people who have current disabling genetic illnesses, it 
is not at all clear whether the law covers individuals who have a 
genetic mutation that predisposes them to disease. Although guidance 
issued by the Equal Employment Opportunity Commission (EEOC) suggested 
a number of years ago that the ADA could apply in situations where an 
employer treats or regards an employee as impaired based on their 
genetic makeup, no court has ruled specifically on this issue. To the 
contrary, recent court cases have established a general trend of 
narrowing the ADA's scope stretching the ADA's definition of 
``impairment'' to cover genetic predisposition to disease is 
inconsistent with the current judicial interpretation of the ADA.
     It is not clear whether Title VII of the 1964 Civil Rights 
Act would provide protection for those claiming genetic discrimination 
in most circumstances. Protection under this law is available only 
where an employer engages in discrimination based on a genetic trait 
that is substantially related to a particular race or ethnic group.
    Thus, there is no uniform protection against the use of, misuse of, 
and access to genetic information in the workplace. As a matter of 
public policy, we still need to achieve a comprehensive approach that 
includes the following:
    (1) Employers should be prohibited from using genetic information 
in hiring, firing, and determination of employee benefits.
    (2) Employers should be prohibited from requesting or requiring 
collection or disclosure of genetic information unless they can show 
that the disclosure is relevant to the job. This is a very high 
standard and one that will rarely be met. Written and informed consent 
should be collected for each request, collection, or disclosure of 
genetic information.
    (3) Employers should be restricted from access to genetic 
information contained in medical records released as a condition of 
employment, in claims filed for health care benefits, or any other 
sources.
    (4) Employers should be prohibited from releasing genetic 
information without prior written authorization of the individual for 
each and every disclosure.
    (5) Employers who violate these provisions should be subject to 
strong enforcement mechanisms, including a private right of action.
    I understand that there might be concern that new federal 
legislation may place an undue burden on the business community. This 
is unlikely for two reasons: First, if we are to assume that employers 
are complying with applicable state laws then a federal law should not 
represent a significant new burden. Second, employers and those 
representing the insurance community have long maintained that they are 
not currently using genetic information to determine eligibility or 
employment status. If so, a federal prohibition should not burden their 
business practices. It would simply prevent the misuse of genetic 
information and be integrated into their legal compliance efforts. I am 
not aware of any data that demonstrates increased costs to employers 
for complying with these state laws.
    In conclusion, the era of genomic medicine is here, but fear 
continues to paralyze its future. In the words of Dr. Francis Collins, 
Director of the NIH Human Genome Research Institute:
    Unless Americans are convinced that their genetic information will 
not be used against them, the era of personalized medicine may never 
come to pass. The result would be a continuation of the current one-
size-fits-all medicine, ignoring the abundant scientific evidence that 
the genetic differences among people help explain why some patients 
benefit from a therapy and, while some do not, and why some patients 
suffer severe adverse effects from a medication, while others do not.
    It is my hope that passage of comprehensive federal legislation 
will move us forward to honoring our commitment to improving our 
understanding of genetics and its positive impact on the health of all 
Americans.
    Thank you. I welcome your questions.
                                 ______
                                 
    Chairman Andrews. Thank you very, very much.
    Ms. Rothenberg. I welcome your questions.
    Chairman Andrews. We appreciate it.
    Mr. Escher, welcome to the committee. Welcome back to the 
committee. Your written statement has been entered into the 
record. And we welcome your testimony.

STATEMENT OF DAVID ESCHER, FORMER EMPLOYEE, BURLINGTON NORTHERN 
                       SANTA FE RAILROAD

    Mr. Escher. Well, thank you. It is nice to be back here 
again.
    My name is Dave Escher. I am now 52 years old and had been 
employed by Burlington Northern Santa Fe Railroad for over 26 
years as well as a member of the Brotherhood of Maintenance of 
Way during that time.
    I was born and raised in Herndon, Kansas, a small 
northwestern town in Kansas with a population of 200 people. I 
graduated from high school in 1972, began my career with 
Burlington Northern in 1976 and abruptly ended that career in 
the year 2002.
    I married my wife, Deb, in 1986. I have three daughters, 
Kelsey, Karen, Kristen. We now live in Reno, Nevada, after 
relocating 3.5 years ago from McCook, Nebraska.
    My jobs within the company during that time included such 
positions as a laborer, truck driver, assistant foreman, 
machine operator and foreman. I was appointed to the Division 
Safety Committee and continued to serve on that committee for 
over 12 years. I held such positions as maintenance of way 
representative, vice chairman, and then safety and health and 
rural facilitator, up to the time of my departure from the 
company.
    I was also selected as the McCook Division Employee of the 
Year in 1994. I had always had a great working relationship 
with all my coworkers as well as with the upper management 
team.
    Prior to my departure from the company, I began 
experiencing numbness, pain and tingling sensations in my right 
hand. When the numbness began to move through my hand and up my 
arm into my upper bicep, I went to see a doctor who referred me 
to a specialist. It was determined that I had developed work-
related carpal tunnel syndrome, for which surgery was 
necessary.
    After meeting with the operating surgeon, I received a 
letter from corporate headquarters stating that they were not 
satisfied with the initial test results and that they required 
further testing. In a subsequent visit to a neurologist, I once 
again had my hands X-rayed and another nerve conductor study 
performed. The results again confirmed that I had carpal tunnel 
syndrome, that surgery was required and that the condition was 
work-related.
    Within 3 weeks of the surgery, I received a certified 
letter from the management in Fort Worth, Texas, demanding that 
I undergo more extensive testing, and that an appointment was 
already set for me.
    Included in this letter was the requirement of safety rule 
S-26.3, which gives the medical department the authority to 
require an employee to meet all requirements set forth by the 
medical department, and that everyone must comply with these 
instructions or face the consequences of disciplinary action 
for being an insubordinate employee.
    After receiving the letter, I immediately contacted the 
company medical case manager, with whom I had been dealing, and 
I reminded her that I had already seen four medical 
professionals, undergone two nerve conductor studies, had 
received six separate X-rays of each hand, and now the company 
was demanding that I see yet a fifth doctor and undergo yet 
another nerve conductor study with more X-rays. When I pressed 
for an explanation, I was told that, as far as she understood, 
more information concerning my medical condition was needed.
    I went to the appointment as I had been ordered. During the 
procedure, seven vials of my blood were extracted, and the 
doctor once again confirmed that I did suffer the effects of 
carpal tunnel syndrome, and that the condition is work-related.
    In a matter of a few days, I would learn from a co-worker 
who had refused to submit to that same order, and who also had 
been diagnosed with carpal tunnel syndrome, that I had been 
subjected to a genetics test through the blood which was taken 
from me. This was done without my knowledge and without my 
consent.
    I found myself in a state of disbelief and humiliation. I 
could not believe or accept what had just occurred. I 
experienced stages of denial, disbelief, and depression. I felt 
totally violated and devalued as a person. I had just been used 
as a laboratory rat in a carefully devised scheme where my 
employer would benefit greatly by trying to prove that carpal 
tunnel syndrome was a genetic disorder rather than a work 
environment-related condition.
    They could relieve themselves of any financial obligations 
to their employees who suffer work-related injuries within the 
workplace. This was a very difficult concept for me to accept. 
My attitude toward the company became very negative.
    My moods of anger and depression resulting from the 
constant stress and uncertainty of my job situation affected my 
family as well. I became very despondent to the needs and the 
concerns of my wife and daughters as I tried to work through 
this seemingly endless situation.
    I was also fearful of the fact that no one could tell me 
where all the vials of my blood had been dispersed, what 
information was being learned about me, who was going to 
receive this information, and how it could be used to 
discriminate against not only myself but my family, when they 
go out into the workplace.
    The constant worries where would I go to find another job 
at this point in my life and to be able to obtain insurance for 
my family seemed to me an insurmountable quest. This was a very 
trying time in my life.
    One of the most heart-wrenching moments occurred when my 
little 7-year-old daughter, Kristen, began crying one night 
because she was scared Daddy was going to lose his job and her 
little world would be turned upside down. How do you explain to 
a young child that you could lose your job not because of what 
you have done to your employer, but because of what your 
employer has done to you?
    I feel that this new science of genetic information is a 
great asset when left in responsible hands. But it can also be 
very devastating when put into the hands of the wrong people. I 
am fearful of the power that corporations, including insurance 
companies, would have if they were allowed to subject their 
employees and policyholders to genetic testing and then make 
decisions based on what is learned in those tests.
    We have laws to protect us from people wiretapping our 
phone, stealing our mail and defrauding our bank account. How 
can we allow employers to steal the blood of their employees 
and use it to discriminate through the predispositions 
discovered through the information learned from that genetics 
test?
    It is my personal belief that individuals are hired on the 
basis of their abilities and their capabilities to do the job, 
not on the basis of their genetic makeup or history.
    It has now been over 5 years since I had the opportunity to 
testify before the Health, Education, Labor and Pensions 
Committee in regards to genetic discrimination. To this day, I 
have never received confirmation of what happened to the five 
vials of blood taken from me. I have been denied health 
insurance since I am on a railroad occupational disability. And 
there are still no laws protecting individuals from an employer 
demanding an employee to be genetically tested.
    There have been many important events that have occurred in 
this 5-year time period, most notably 9/11 and the aftermath 
which followed. As important of an event that this has been in 
our nation's history, I still strongly believe that the need 
for the passage of legislation that protects all Americans from 
genetic discrimination is as important today as it was 5 years 
ago.
    Mr. Chairman, through the tactics of deception, 
intimidation, lying and stealing, the company to which I had 
given 26 years of my life took from me something they can never 
give back. And that is the very essence of my being, my genetic 
makeup.
    In conclusion, if employers, insurance companies and the 
like are able to have this type of power and control over their 
employees and clients, then who will be able to have a job or 
affordable insurance, if any insurance at all?
    I want to thank the committee for the opportunity to 
testify. And I urge enactment on legislation to protect 
American citizens from the genetic discrimination. Thank you.
    [The statement of Mr. Escher follows:]

    Prepared Statement of David Escher, Former Employee, Burlington 
                       Northern Santa Fe Railroad

    Thank you, Mr. Chairman and members of the committee. My name is 
Dave Escher. I am 52 years old, and had been employed by Burlington-
Northern Santa Fe Railroad for over 26 years, as well as a member of 
the Brotherhood of Maintenance of Way during that time.
    I was born and raised in Herndon, Kansas, a small northwestern town 
with a population of 200 people. I graduated from high school there in 
1972, and I began my career with Burlington Northern in 1976 and ended 
that career in 2002. I married my wife, Deb, in 1986, have three 
daughters, Kelsey, Karen, Kristen. We now live in Reno, Nevada after 
relocating three and a half years ago from McCook, Nebraska.
    My jobs within the company have included such positions as a 
laborer, truck driver, assistant foreman, machine operator and foreman. 
I was appointed to the Division Safety Committee by the Division 
Roadmaster and continued for over 12 years where I held such positions 
as maintenance of way representative, vice chairman, and safety and 
health facilitator up to the time of my departure from the company. I 
was also selected as the McCook Division Safety Employee of the Year in 
1994. I had always had a great working relationship with all my 
coworkers as well as those in upper management levels. A couple of 
years ago, I began experience numbness, pain and tingling sensations in 
my right hand. When the numbness began to move through my hand and up 
my arm into my upper bicep, I went to see a doctor who referred me to a 
specialist. It was determined that I had developed work-related carpal 
tunnel syndrome, for which surgery was necessary.
    After meeting with the operating surgeon, I received a letter from 
corporate headquarters stating that they were not satisfied with the 
initial test results and that they required further testing. In a 
subsequent visit to a neurologist, I once again had my hands x-rayed 
and another nerve conductor study performed. The results again 
confirmed that I had carpal tunnel syndrome, that surgery was required 
and that the condition was work-related.
    Within three weeks of the surgery, I received another letter from 
management demanding that I undergo more extensive testing, and that an 
appointment was already set for me. Included in this letter was the 
requirement of safety rule S-26.3, which gives the medical department 
the authority to require an employee to meet all requirements set forth 
by the medical department, and that everyone must comply with these 
instructions or face the consequences of disciplinary action for being 
an insubordinate employee.
    After receiving this letter, I immediately contacted the company 
medical case manager, with whom I had been dealing, and I reminded her 
that I had already seen four medical professionals, undergone two nerve 
conductor studies, had received six separate x-rays of each hand, and 
now the company was demanding that I see yet a fifth doctor and undergo 
yet another nerve conductor study with more x-rays. When I pressed for 
an explanation, I was told that as far as she understood, more 
information concerning my medical condition was needed. I went to the 
appointment as I had been ordered. During the procedure, seven vials of 
my blood were extracted, and the doctor once again confirmed that I did 
suffer the effects of carpal tunnel syndrome, and that the condition is 
work-related. In a matter of a few days, I would learn from a co-worker 
who had refused to submit to the same order, and who also had been 
diagnosed with carpal tunnel syndrome, that I had been subjected to a 
genetics test through the blood which was taken from me. This was done 
without my knowledge or my consent. I found myself in a state of 
disbelief and humiliation. I could not believe or accept what had just 
occurred. I experienced stages of denial, disbelief and depression. I 
felt totally violated and devalued as a person. I had just been used as 
a laboratory rat in a carefully devised scheme where my employer would 
benefit greatly by trying to prove that carpal tunnel syndrome was a 
genetic disorder rather than a work environment related condition. They 
could relieve themselves of the financial obligations to their 
employees who suffer work-related injuries within the workplace. This 
was a very difficult concept for me to accept. My attitude toward the 
company became very negative. My moods of anger and depression 
resulting from the constant stress and uncertainty of my job situation 
affected my family as well. I became despondent to the needs and the 
concerns of my wife and daughters as I tried to work through this 
seemingly uncomfortable and endless situation. I was also fearful of 
the fact that no one could tell me where all the vials of my blood had 
been dispersed. What information was being learned about me, who was 
going to receive this information, and how it could be used to 
discriminate against not only myself but my family, when they go out 
into the work place? The constant worries, ``where would I go to find 
another job at this point in my life,'' and to be able to obtain 
insurance for my family, seemed to me insurmountable. This was a very 
trying time in my life. One of the most heart-wrenching moments 
occurred when my little seven-year old daughter, Kristen, began crying 
one night because she was scared daddy was going to lose his job, and 
her little world would be turned upside down. How do you explain to a 
young child that you could lose your job not because of what you have 
done to your employer, but because of what your employer has done to 
you? I feel that this new science of genetic information is a great 
asset when left in responsible hands. But it can also be very 
devastating when put into the hands of the wrong people. I am fearful 
of the power that corporations, including insurance companies, would 
have if they were allowed to subject their employees and policyholders 
to genetic testing, and then make decisions based on what is learned in 
those tests.
    We have laws to protect us from people wiretapping our phone, 
stealing our mail and defrauding our bank account. How can we allow 
employers to steal the blood of their employees and use it to 
discriminate through the predispositions discovered through the 
information learned from the genetic studies?
    It has now been over 5 years since I had the opportunity to testify 
before the Health, Education, Labor and Pensions Committee in regards 
to genetic discrimination. There have been many important events that 
have occurred in this time period, most notably 9/11 and the aftermath 
which followed. As important of an event that this has been in our 
Nation's history, I still strongly believe that the need for the 
passage of legislation that protects American citizens from genetic 
discrimination is as important today as it was 5 years ago.
    In conclusion, if employers, insurance companies and the like are 
able to have this type of power and control over its employees and 
clients, then who will be able to have a job or affordable insurance, 
if any insurance at all?
                                 ______
                                 
    Chairman Andrews. Mr. Escher, thank you. And let me say how 
proud I am sure your family is of you, that you have shown the 
integrity and strength to come tell your story in a way that 
will hopefully help others avoid the difficulties that you 
faced. I am sure your family is very proud of you. You did a 
very fine job.
    Mr. Escher. Thank you.
    Chairman Andrews. Ms. Pearson, welcome.

   STATEMENT OF HARRIET PEARSON, VICE PRESIDENT OF CORPORATE 
          AFFAIRS AND CHIEF PRIVACY OFFICER, IBM CORP.

    Ms. Pearson. Thank you. And good morning, Mr. Chairman and 
members of the committee. My name is Harriet Pearson. I am the 
chief privacy officer and vice president of corporate affairs 
at IBM. And we are honored to have been asked to come and share 
our experience with our own policies and offer our views on 
H.R. 493, the Genetic Information Nondiscrimination Act. We 
appear here in support of the need for the legislation.
    IBM is a globally integrated enterprise with 340,000 
employees around the world. We provide access to health-care 
coverage for more than 500,000 employees, IBMers, family 
members and dependents. We follow rigorous health privacy 
policies and practices.
    And we do not--let me clarify--we do not seek to collect 
genetic information. On October 2005, IBM became the first 
major corporation, to my knowledge, to make genetic 
nondiscrimination part of our official employment policy.
    As our chairman and CEO, Sam Palmisano, said in his letter 
to employees, ``It has been IBM's long-standing policy not to 
discriminate against people because of their heritage or who 
they are. A person's genetic makeup may be the most fundamental 
expression of both. So we are taking this step because it is 
the right thing to do for the sake of the innovation that lies 
just over the horizon, and because it is entirely consistent 
with our values and with who we are as a company.''
    The entire note that Mr. Palmisano wrote to our employees 
is attached as an appendix to my written statement, which I 
have submitted for the record.
    In our policy, IBM has taken the position that genetic 
information will not be used in hiring, in determining 
employees' eligibility for health-care coverage or in making 
other employment decisions.
    The reaction among our employees, among health and privacy 
experts and others to our position has been positive. I 
personally reviewed about 100 letters from different employees 
to our chairman appreciating the move that we made.
    And one in particular, for example, was an employee who has 
Huntington's in his family, who thanked the company, thanked 
IBM for making the certainty that he could work in a company 
and not have to face the risk or the uncertainty of any 
consequences.
    But he asked the question, which made us think, you know, 
what about his child, what about his children? And that really 
rose, you know, to my attention as really the example of why we 
potentially would need more policy in the United States.
    So far, I have to say, in terms of costs to us as an 
employer, we have not experienced, as I said, any negative 
reactions or any costs that I can point to related to our 
position on this issue. The reasons for making genetic privacy 
part of our broader discrimination protections were clear to 
us.
    First, we believe that a person's genetic profile should be 
treated the same as other innate human characteristics such as 
one's race, gender, national origin, sexual orientation, age or 
physical abilities. Simply stated, a person's genetic profile 
is as natural and as inseparable from who they are as any other 
physical trait or attribute.
    Second, it is even more important to protect people's 
genetic privacy as medicine and science further reveal the 
relationship between specific diseases and an individual's 
unique genetic fingerprint. We at IBM know this because our own 
experts and technologies are involved in a range of efforts 
from gene sequencing to personalized medicine. We even have a 
computer named Blue Gene.
    For example, our experts in health care and life sciences 
are collaborating with researchers at centers around the world, 
such as the Mayo Clinic and the Karolinska Institute in Sweden, 
to unlock the molecular roots of disease with the help of 
genetic data.
    There is little disagreement, we believe, in Congress or 
across the country, that each of us should be protected from 
discrimination based on our genetic makeup. As we discovered in 
setting our own policy at IBM, there is value and security in 
clarifying that such discrimination will not be practiced or 
tolerated.
    A powerful reason for Congress to act on genetic 
nondiscrimination now is that this issue is bound to become a 
bigger challenge as we move into the future of information-
based medicine. In this new age, genetic screening will be used 
more routinely in the diagnosis and treatment of disease, and 
test results will increasingly exist in electronic or digital 
format.
    By setting a national policy we may even improve patient 
care. People with genetic predispositions toward diseases such 
as diabetes or heart disease could seek preventative treatment 
without fear of the consequences to their employment or access 
to health insurance.
    By establishing that none of us can be discriminated 
against on the basis of the genes we are born with, we also 
will create the safe foundation for future therapies that could 
repair or address the genetic defects that might make us prone 
to particular diseases. The era of genetic medicine is probably 
closer than we think. We need to create the social and legal 
environments that will be conducive to it.
    When we instituted our policy in 2005, many people asked, 
why do we need such protections now before genetic 
discrimination is a wide concern? I will echo some of the 
comments you have heard before by saying that, you know, for 
us, the answer was that we had a sense of what is going on in 
the environment out there. And, for us, the answer was also 
that matters of policy are not about reacting to external 
pressures, but following the logic of our company's inherent 
values.
    In IBM's early days we instituted equal opportunity 
policies that prohibit discrimination on the basis of race or 
gender. That was decades before such policies were mandated by 
law. And we did it because it was the right thing to do. 
Because they are implicit in our company's core values. And we 
have stood by them for decades now. And we have a great record 
in that space.
    Chairman Andrews. Ms. Pearson?
    Ms. Pearson. In our view----
    Chairman Andrews. I am sorry. If you could wrap up. Thank 
you.
    Ms. Pearson. Yes. Not protecting anybody's genetic privacy 
and IBMers' genetic privacy would have been inconsistent with 
our own DNA as an organization. In that light, it is the right 
time for Congress to address this issue. And we support H.R. 
493 and would offer a few observations, which are in our 
written statement.
    And I will conclude with a practical observation, that, as 
we all know, any legislation that expands requirements or 
liability can have unintended consequences. And Congress should 
closely monitor implementation of the law by the responsible 
agencies. And there should be a watchful eye against 
unnecessarily expansive interpretation and the resulting 
burdens that might be imposed.
    We believe that protecting genetic privacy and protecting 
against nondiscrimination is a compelling issue though at the 
moment. And therefore, we appear in support of H.R. 493.
    Thank you for the opportunity to testify this morning.
    [The statement of Ms. Pearson follows:]

  Prepared Statement of Harriet Pearson, Vice President of Corporate 
              Affairs and Chief Privacy Officer, IBM Corp.

    Chairman Andrews and members of the Subcommittee on Health, 
Employment, Labor and Pensions. My name is Harriet Pearson, and I serve 
as IBM's Chief Privacy Officer, and as Vice President of Corporate 
Affairs.
    IBM appreciates the opportunity to testify in this hearing on H.R. 
493, the Genetic Information Nondiscrimination Act of 2007. IBM 
supports the legislation.
    IBM is a globally-integrated enterprise engaged in business and 
technology innovation with more than 340,000 employees. We provide 
access to healthcare coverage to more than 500,000 IBMers, their 
families and dependents.
    On October 9, 2005, IBM became the first major corporation to make 
genetic non-discrimination part of our official employment policy. As 
our chairman, Sam Palmisano, said in his letter to employees:
    ``It has been IBM's long-standing policy not to discriminate 
against people because of their heritage or who they are. A person's 
genetic makeup may be the most fundamental expression of both. So we 
are taking this step today because it is the right thing to do--for the 
sake of the innovation that lies just over the horizon, and because it 
is entirely consistent with our values and with who we are as a 
company.''
    (The entire note is attached as an appendix to this document.)
    Reaction among IBM employees, health and privacy experts and others 
to our leadership on this issue has been uniformly positive. Let me 
cite two examples:
     An IBM software employee wrote: ``you make me proud to be 
an IBM employee. I will be sharing this with my friends outside of IBM 
as an example of how my company can choose to put its people first and 
do the right thing.''
     One IBMer wrote to Sam Palmisano: ``as a deaf employee, I 
would like to extend a deep and sincere thank you for ensuring that my 
rights are protected, even indirectly, through this policy.''
    In our policy, IBM has taken the position that genetic information 
will not be used in hiring, in determining employees' eligibility for 
health care coverage or other employment benefits, or in other 
employment decisions to which such information is not relevant.
    The reasons for making genetic privacy part of our broader 
discrimination protections were clear to us: first, we believe that a 
person's genetic profile or makeup should be treated the same as other 
innate human characteristics, such as one's race, gender, sexual 
orientation, age or physical abilities.
    Simply stated, a person's genetic profile is as natural and as 
inseparable from whom they are as any other physical trait or 
attribute.
    Second, it is even more important to protect people's genetic 
privacy as medicine and science further discover the relationship 
between specific diseases and an individual's unique genetic 
fingerprint.
    We know this because IBM technology underlies many genetic 
breakthroughs from gene sequencing to personalized medicine.
    For example, our experts in healthcare and life sciences are 
working with medical researchers at centers around the world, such as 
the Mayo Clinic and the Karolinska Institute in Sweden to harness 
genetic insights to unlock the molecular roots of disease.

 
------------------------------------------------------------------------
    Common Genetic Tests Today      Emerging Tests and Genetic Screening
------------------------------------------------------------------------
Huntington's Disease                Bowel Cancer (University of
                                     Edinburgh)
Cystic Fibrosis                     Ocular Melanoma (UCLA's Jules Stein
                                     Eye Institute)
Breast Cancer, presymptomatic       Human Papillomavirus (Roche)
 testing
Prenatal Genetic Screen             Fragile X Syndrome (U.S. Genomics &
                                     Quest Diagnostics)
Pre-Implantation Testing of         Early Stage Lung Cancer (University
 Embryos                             of Maryland School of Medicine)
------------------------------------------------------------------------

    One innovation front we are leading is to enable genetic data to be 
securely and anonymously integrated with other types of healthcare data 
such as electronic medical records. This approach holds considerable 
promise both for saving individual lives and for speeding medical 
breakthroughs.
    Today, there are genetic tests for almost 1000 diseases,\1\ and 
several hundred more are under development. The results can help 
confirm conditions and inform treatment decisions. In other instances 
they can quantify the risk of future disease. Some genetic tests under 
development aim to predict the responsiveness of drugs for heart 
disease, cancer, asthma and other conditions.
---------------------------------------------------------------------------
    \1\ The Genetics & Public Policy Center.
---------------------------------------------------------------------------
    The danger of not safeguarding genetic information is the potential 
that a person with a genetic predisposition toward one or more diseases 
might be denied healthcare insurance, lose their job or be turned down 
for one.
    Genetic data or tests results should also be shielded because in 
many instances they only suggest a risk of developing a disease. It is 
our view that no one should lose their health insurance or their 
livelihood because they have a statistical chance of becoming diabetic, 
arthritic or asthmatic. Instead, such information can be-and should be-
used to the positive ends of enabling preventive lifestyle changes or 
potentially tailoring medical or pharmaceutical regimens that reduce 
the risk of the condition at issue developing.
    As Francis Collins, Director of the National Human Genome Research 
Institute noted in 2003, in ``A Brief Primer on Genetic Testing'':
          Applied properly, [genetic testing] could usher in a new era 
        of individualized preventive medicine that could have 
        considerable health benefits. It will be important to remember, 
        however, that most of these tests will not be ``yes or no'' but 
        rather will predict relative risk. For this paradigm to 
        succeed, it will also be essential that predictive genetic 
        information is used to benefit individuals, rather than to 
        injure them by discriminatory misuse.
    There is little disagreement, we believe, in Congress or across the 
country, that each of us should be protected from discrimination based 
on genetic makeup. As we discovered in setting our own company-wide 
policy, there is value and security in clarifying that such 
discrimination will not be practiced or tolerated.
    A powerful reason for Congress to act on genetic nondiscrimination 
now is that this issue is undoubtedly bound to become a bigger 
challenge as we move into the future of information-based medicine, 
where genetic screening or tests will be used even more routinely in 
the diagnosis and treatment of disease.
    In fact, by setting a national policy that one's genetic data 
should not lead to discrimination in the workplace and health insurance 
market, we may improve patient care: people with genetic 
predispositions toward chronic diseases such as diabetes or heart 
disease could seek preventative treatment without fear of the 
consequences to their employment or access to health insurance.

          What I.B.M. is doing is significant because you have a big, 
        leadership company that is saying to its workers, `We aren't 
        going to use genetic testing against you,' said Arthur L. 
        Caplan, director of the Center for Bioethics at the University 
        of Pennsylvania medical school. `If you want a genomic 
        revolution,' Mr. Caplan added, `then you better have policies, 
        practices and safeguards that give people comfort and trust.'--
        The New York Times, October 10, 2005.

    By firmly establishing that none of us can be discriminated against 
on the basis of the genes we are born with and have no real control 
over, we also will create the safe foundation for future therapies that 
could repair or address the genetic defect that might make us prone to 
particular diseases or ailments.
    The era of genetic medicine is probably closer than we think. In 
order for society to benefit from, and be prepared for, such profound 
innovations in healthcare, we need to create the social and legal 
environment that will be conducive to it.
    When we instituted our policy in 2005, one of the biggest questions 
it raised was ``why do we need such protections now, in advance of 
genetic discrimination being commonplace?"
    For IBM, the answer was that matters of policy are not about 
reacting to external pressure, but following the logic of the company's 
inherent values. From IBM's early days, we instituted equal opportunity 
policies, policies that prohibit discrimination on the basis of race or 
gender for example, decades before they were mandated by law, because 
they were the right thing to do, because they were implicit in the 
company's core values.
    Today, two of IBM's core values--values that were shaped by the 
entire IBM population via online collaborations called ``jams''--
provide clear direction for our path as an organization. Those values 
are 'innovation that matters--for our company and for the world' and 
'trust and personal responsibility in all relationships.' In our view, 
not protecting IBMers' genetic privacy or not including genetics in our 
equal-opportunity policy would have been inconsistent with our own DNA 
as an organization.
IBM Employment Policy Milestones
1914--IBM hires its first employee with a disability
1953--IBM establishes a formal equal opportunity policy
1984--IBM adds sexual orientation to company policies regarding non-
        discrimination policy
2005--IBM adds genetic privacy to company policies regarding non-
        discrimination policy

    In addition, in the little more than a year since our announcement, 
new genetic markers for diseases such as diabetes, Alzheimer's and 
others have demonstrated that we certainly weren't too early.
    In that light, it is the right time for Congress to address this 
issue head on, and make genetic discrimination part of the protections 
we as Americans have against biases that run counter to Americans' 
shared values of fairness and merit-based decisionmaking.
    IBM supports H.R. 493, The Genetic Nondiscrimination Act of 2007, 
and has the following practical observations to share:
     There is the potential for confusion or overlap because 
individuals could seek remedies for claims of genetic discrimination 
through the provisions in the legislation, as well as through existing 
legislation such as the Americas with Disabilities Act.
     Genetic information is defined broadly as the occurrence 
of a ``disease or disorder in family members of an individual.'' That 
description may not reflect the increasingly unique, individual nature 
of genetic data and personalized medicine.
     Congress should also closely monitor implementation of the 
legislation by the responsible federal administrative agencies to 
ensure there are no expansive interpretations which could create 
unanticipated burdens on the employer community. Any legislation that 
includes new expansions in liability can create costs that are 
burdensome.
    Protecting genetic privacy is an opportunity for our nation to lead 
on a front that is almost certain to become a global challenge, and for 
us to chart a course that expands the range of individual liberties 
that are at the heart of the American ideal.
    There have been relatively few times in our history when the 
significance of a major technological breakthrough could be understood 
from the get-go. The times have been even fewer when societal and 
political conditions at that same moment were ripe for enlightened 
planning. We usually legislate by hindsight. Because we usually acquire 
the wisdom to shape and protect a scientific breakthrough only decades 
after it has broken through. Today, with this technology, with this 
issue, and with this legislation--properly improved--Congress has the 
chance to do so.
    Thank you. And now I'm happy to answer any questions.
                                appendix
To: IBMer US 0051; IBMer US 0052; IBMer US 0053; IBMer US 0054; IBMer 
    US 0055.

Subject: Protecting Genetic Privacy

    Dear IBMer: During our lifetimes, the practice of medicine and 
society's approach to healthcare have changed in fundamental ways. But 
what lies ahead--perhaps in the next decade alone--seems likely to 
eclipse that progress dramatically.
    Along with any change in an important area of science or society, 
new and often difficult policy questions inevitably arise. And that's 
uniquely so for healthcare. Business, government and the research 
community have a responsibility to address these issues. I am writing 
today to tell you about an important step that IBM is taking to do so.
    Of all the work now taking place across the life sciences, none 
perhaps has the transforming potential of the pioneering efforts to 
unlock the secrets of the human genome. IBM is already engaged in many 
of the technology innovations springing from the revolution in genetics 
and IT--from ``information-based medicine'' (which seeks to transform 
care by marrying genomics with clinical treatment); to our Genographic 
Project, where we're helping National Geographic to map the scientific 
history of our genes' migration; to the innovation flowing from our 
Blue Gene supercomputer.
    This work is enormously promising--but it also raises very 
significant issues, especially in the areas of privacy and security. 
The opportunity the world has to improve life in the century ahead 
through genomics-driven, personalized medicine and preventive care will 
only be realized fully if it also takes into account the protection of 
genetic privacy. We must make this a priority now.
    For that reason, I have signed a revision of IBM's equal 
opportunity policy, first published by Thomas J. Watson, Jr., in 1953. 
IBM is formally committing that it will not use genetic information in 
its employment decisions, a policy we believe is the first of its kind 
for a major corporation. You should know that IBM does not actively 
seek to collect genetic information--but at times, and increasingly in 
the future, employees or their family members may choose to share it, 
for example, in order to facilitate participation in information-based 
wellness programs. In anticipation of such circumstances and other 
situations that we cannot fully anticipate, we are today establishing 
that business activities such as hiring, promotion and compensation of 
employees will be conducted without regard to a person's genetics.
    It has been IBM's long-standing policy not to discriminate against 
people because of their heritage or who they are. A person's genetic 
makeup may be the most fundamental expression of both. So, we are 
taking this step today because it is the right thing to do--for the 
sake of the innovation that lies just over the horizon, and because it 
is entirely consistent with our values and with who we are as a 
company.
                                       Samuel J. Palmisano,
Chairman and Chief Executive Officer, the Genetics & Public Policy 
                                                            Center.
                                 ______
                                 
    Chairman Andrews. Ms. Pearson, thank you very much. And 
your full statement has been entered into the record.
    Ms. Pearson. Thank you.
    Chairman Andrews. Mr. Fishman, your full statement has been 
entered into the record, and we welcome you to the committee.

  STATEMENT OF BURTON J. FISHMAN, PARTNER, FORTNEY SCOTT LLP, 
  GENETIC INFORMATION NONDISCRIMINATION IN EMPLOYMENT (GINE) 
                           COALITION

    Mr. Fishman. Well, thank you, Chairman Andrews, Ranking 
Member Kline, distinguished members of the subcommittee. Thank 
you for this opportunity to testify this morning on behalf of 
the Genetic Information Nondiscrimination in Employment 
Coalition, the GINE Coalition.
    Let me state at the outset, and let me be clear, the GINE 
Coalition strongly supports genetic nondiscrimination and 
confidentiality and believes that employment decisions should 
be based on an individual's qualifications and ability to 
perform a job, not on characteristics that have no bearing on 
job performance, period.
    Although this is not a legislative hearing, we are aware 
that Representative Biggert and Representative Slaughter have 
introduced H.R. 493. The coalition commends the goals of that 
bill. And we hope to continue working with the sponsors, the 
members of this committee, all of Congress in making genetic 
discrimination legislation more effective, administratively 
efficient and practical.
    Thank you for accepting my statement. I do not intend to 
repeat it, but I do want to address a few of my comments to 
issues that the coalition regards as significant, which are 
also part of the proposed bill.
    When testimony was given about a prior version of this bill 
in 2004, it was noted that over 30 states had passed genetic 
discrimination laws covering scores of millions of people. At 
that time, not a single case had been brought under any of 
those laws, let alone a violation being found.
    That remains true today. Indeed, the fact that we have 
heard again this morning about conduct at Burlington Northern 
in 2000 and 2001 serves for me to underscore the rare and 
unrepeated nature of that event.
    We believed then and now that the bill is a remedy in 
search of a problem. Nevertheless, it appears that you have 
decided that federal legislation is necessary. And as a 
coalition that opposes employment discrimination, we do not 
oppose the bill.
    However, we do believe the proposed bill can be 
strengthened. And we wish to work with you to craft a more 
effective and more meaningful bill.
    For example, we share the concerns of some of the prior 
witnesses. We hope Representative Biggert makes very clear in 
future drafts of the bill that this law is directed solely 
against intentional and deliberate discrimination. We believe 
that it should.
    We hope Representative Slaughter clarifies her position so 
that the bill has nationally preempted effect. There should be 
one standard, and it should be your standard.
    We agree with Representative Price that one of the 
unforeseen consequences is that beneficial medical outcomes may 
be in peril.
    We concur with the written statements of Professor 
Rothenberg which state that employers should be able to collect 
genetic information if they can show that such information is 
relevant to the job, worker safety requires it.
    And we agree with Ms. Pearson, again, in her written 
testimony that this bill creates confusion and overlaps, that 
the definitions are too broad and that these vagaries will lead 
to needless burdens and costs to employers.
    Like them, we do not want the law that imposes real burdens 
and actual costs based on distant, contingent eventualities or 
the inadvertent conduct of any employer without your due 
deliberation. We do not want a law that makes knowledge illicit 
rather than one focused on illicit conduct. And since there has 
never been an opportunity for lawsuits without there being 
lawsuits, we do not want new causes of action, particularly for 
technical violations without your due deliberation.
    And I raise these points because the proposed bill could be 
improved, we think, by greater attention to the implications of 
some of the propositions.
    For a few more examples, the definition of family member is 
virtually limitless, including fourth cousins thrice removed. 
We do not think that is what you intended. But that is what is 
there.
    There is the new requirement for confidential segregated 
record keeping of genetic information as distinguished from 
health information. Even if laymen could make that distinction, 
we hope that these rare documents can be included with other 
confidential health records in already confidential files.
    And we more sincerely hope that you do not permit 
compensatory and punitive damages for technical violations. 
Punish discrimination; do not punish bad filing.
    Genetic information acquired pursuant to some laws from 
some sources such as FMLA certification is permitted. But the 
same information from more likely sources--ADA accommodations 
discussions, discussions about health insurance under HIPPA and 
COBRA--are not permitted. There should be an exception 
permitting the acquisition of all such information if relevant 
to the job, if collected pursuant to law and retained in 
confidential files.
    The information should not be the issue. The misuse of the 
information should be the issue.
    I mentioned the soaring number of state laws. This 
subcommittee knows the virtue and the importance of preemptive 
federal standards. If new burdens are put on employers, at 
least let them have a single standard.
    And finally, please remember there will be a time not too 
far off, I hope, when the rapid, untrammeled dissemination of 
genetic information will save lives. Do nothing here that even 
threatens to delay that hour. The product of genetic research 
is not discrimination. It is saving lives. Do nothing that 
curtails that research or limits the free flow of life-giving 
information. Make discrimination illegal, not knowledge.
    Thank you for this opportunity, Mr. Chairman. And I will be 
happy to answer any questions you may have.
    [The statement of Mr. Fishman follows:]

 Prepared Statement of Burton J. Fishman, Partner, Fortney Scott LLP, 
  Genetic Information Nondiscrimination in Employment (GINE) Coalition

    Chairman Andrews, Ranking Member Kline, and distinguished members 
of the subcommittee. Thank you for this opportunity to testify on the 
issue of genetic discrimination in the workplace. I commend the 
subcommittee for holding its first hearing of the 110th Congress on 
this important topic. My statement will focus on the potential impact 
genetic nondiscrimination legislation will have on employers, 
employees, and their organizations.
    My name is Burton Fishman. I am Of Counsel to the Washington, D.C. 
law firm of Fortney & Scott. By way of introduction, I served as Deputy 
Solicitor for National Operations at the U.S. Department of Labor under 
Secretary Lynn Martin, during the term of President George. H. W. Bush. 
I was ``present at the creation'' of the Americans with Disabilities 
Act (ADA) and have remained involved in the administration and 
application of that law. I have written numerous books and articles on 
the subject and have been involved in a number of matters with respect 
to the statute. That background served as a natural preface to my 
concerns with the issue and the bill before you today.
    I appear before you this morning as Counsel to the Genetic 
Information Nondiscrimination in Employment Coalition, the GINE 
Coalition, which is a business coalition of trade associations, 
professional organizations, individual companies and their 
representatives, including the Society for Human Resource Management 
(SHRM), the U.S. Chamber of Commerce, The National Association of 
Manufacturers (NAM), and the College & University Professional 
Association for Human Resources (CUPA-HR), to name a few. In addition 
to the hundreds of thousands of members of those associations and the 
millions of employees they employ, representatives from biotechnology, 
pharmaceutical research, health care, information technology, and other 
industries have joined in the Coalition's deliberations. The exclusive 
focus of the GINE Coalition is the issue of genetic non-discrimination 
in employment. The Coalition has worked diligently and faithfully with 
all participants in the debate on the substance of federal legislation 
on the subject of genetic non-discrimination. Today's testimony before 
the Committee is limited to that issue.\1\
    Let me be clear from the outset: the GINE Coalition strongly 
supports genetic nondiscrimination and confidentiality. The Coalition 
believes that employment decisions should be based on an individual's 
qualifications and ability to perform a job, not on characteristics 
that have no bearing on job performance.
Background
    Members of the GINE Coalition, like the rest of society, are 
thrilled by and enthusiastically support the scientific research and 
truly spectacular breakthroughs relating to the sequencing of the human 
genome. Scientists in academia and industry have identified genes 
responsible for diseases from deafness to kidney disease to cancer. 
Through their efforts, we are uncovering hereditary factors in heart 
disease, diabetes, Parkinson's disease, bipolar illness, asthma, and 
other common illnesses of our society. As Dr. Francis Collins predicted 
a few years ago:
    ``Quite possibly before the end of the first decade of this new 
millennium, each of us may be able to learn our individual 
susceptibilities to common disorders, in some cases allowing the design 
of a program of effective individualized preventive medicine focused on 
lifestyle changes, diet and medical surveillance to keep us healthy. 
This will also enable us to focus our precious health care resources on 
maintaining wellness, instead of relying on expensive and often 
imperfect treatments for advanced disease.
    ``These same discoveries about genetics will lead us to predict who 
will respond most effectively to a particular drug therapy, and who may 
suffer a side effect and ought to avoid that particular drug. 
Furthermore, these remarkable advances will lead us to the next 
generation of designer drugs, focused in a much more precise way on the 
molecular basis of common illnesses, giving us a much more powerful set 
of targeted interventions to treat disease. (Testimony of Dr. Francis 
Collins before the Senate Health, Education, Labor and Pension 
Committee, July 20, 2000).''
    One comes away from such predictions with an exhilarating sense of 
hope and optimism for the future of medical science. Every human being 
has one or more defective genes, or genetic ``markers,'' indicating a 
predisposition to certain abnormal traits or conditions. Given the 
rapid pace of genetic discoveries, in the near future, we hope, the 
hereditary basis for many of the profound diseases which afflict us 
today will not only be identified, but such knowledge will also be 
useful for purposes of prevention and cure. At that time, such genetic 
information will be vital to an individual and his/her physician, and 
perhaps also to the individual's employer. The information could be 
used for purposes of preventing exposure to conditions in the workplace 
that would accelerate the onset of a particular disease or, as Dr. 
Collins suggested, for the purpose of fashioning individualized, 
employer-provided wellness programs to help prevent the disease from 
occurring.
    However, this exhilaration is compromised by a bill, such as H.R. 
493, the Genetic Information Nondiscrimination Act of 2007, which 
characterizes certain genetic information as ``forbidden'' and 
penalizes the flow of information. Our concern is that the very 
progress in medical science that Dr. Collins envisions will be delayed 
and deterred by legislation such as has been proposed here.
    We recognize that there is a fear that genetic information may be 
used by employers not for beneficent purposes, but as the basis for 
employment discrimination. In the research community, the concern is 
that such fears will discourage individuals from participating in 
genetic research and testing. Such fears are fed by anecdotal but 
apocryphal stories and, of course, on the rare but highly publicized 
case involving Burlington Northern-Santa Fe Railroad, from nearly a 
decade ago.\2\ The fact that the employees in this case were able to 
seek and gain redress under current law indicates that no additional 
legislation is required. As significant, the very fact that we hear 
from one of the Burlington Northern employees at this hearing 
underscores that what occurred there was an unusual and unrepeated 
event, one that should not serve as the basis for sweeping legislation.
    Indeed, there are surveys conducted by neutral bodies such as the 
American Management Association which show that few employers seek or 
even understand genetic information. Further, in the more than 30 
states which have laws prohibiting genetic discrimination, there have 
been no reported cases, even though several statutes were enacted 
decades ago. Thus, there is no empirical evidence of genetic 
discrimination in employment, unlike the mountains of evidence of 
discriminatory conduct which preceded passage of other 
nondiscrimination laws, such as Title VII of the 1964 Civil Rights Act, 
the Age Discrimination in Employment Act, and the Americans with 
Disabilities Act.
    Somewhere in the distracting mix of irrational fears, a rational 
understanding of the benefits of genetic research has been lost. 
Somewhere, the legitimate concern for worker safety by government and 
by employers has been overlooked and replaced with notions of the 
sanctity of the genome. But the product of genetic research is not 
employment discrimination. The product of genetic research will be to 
help people--employees and employers--make health-giving choices based 
on shared knowledge. But viewed through the distorting prism of H.R. 
493, the response to advances in genetic research is to prohibit the 
spread of knowledge. H.R. 493 responds to fear and ignores hope. It 
limits the spread of knowledge in the name of worker fear rather than 
finding ways of applying that knowledge in the name of worker safety. 
That is not how Congress has responded in the past and should not be 
how Congress responds today. Fear should not be the predicate for 
federal legislation.
    This is particularly true in the still-nascent field of genetic 
testing. Currently, the predictive ability of genetic tests and other 
forms of genetic information has little practical workplace utility 
since, in the current state of medical and scientific diagnostics, 
genetic tests reveal only the possibility that a particular trait, 
condition, or illness may develop in the future. There is no medical 
certainty that such illnesses will, in fact, ever develop; neither is 
there any certainty as to how far in the future they would become 
manifest. Thus, such information is simply too remote and too 
speculative on which to base current employment decisions, even if an 
employer were interested in doing so--a conclusion utterly unsupported 
by actual conduct. Furthermore, because of the awe-inspiring speed at 
which scientific knowledge is expanding, legislation based on today's 
understanding will likely respond to a scientific context that has 
already fallen into obsolescence. In fact, many of the states which 
passed legislation early on, have already had to amend laws rendered 
obsolete by the advance of scientific knowledge.
    Yet, it is the opinion of the sponsors and supporters of pending 
federal genetic nondiscrimination bills that such legislation is 
necessary. Although we do not share that view, as a coalition that 
stands squarely against employment discrimination, we do not oppose the 
pending legislation. However, we believe the proposed bill can be 
improved. We hope to work with Congress to craft an effective, 
efficiently administered, practical law that avoids unintended 
consequences and baseless lawsuits, and which will not impede progress 
in science.
The GINE Coalition's position on genetic nondiscrimination
    The GINE Coalition has developed a set of core principles by which 
it measures genetic nondiscrimination legislation. The Genetic 
Information Non-Discrimination in Employment (GINE) Coalition endorses 
the following legislative principles:
     The members of the coalition believe that employment 
decisions should be made based on an individual's qualifications and 
ability to perform a job, not on the basis of characteristics that have 
no bearing on job performance. Therefore, we strongly oppose employment 
discrimination on the basis of a person's genetic makeup.
     Possession of genetic information must be differentiated 
from the use of this information for discriminatory purposes. Any 
proposed statute should be directed at controlling discriminatory 
conduct, rather than attempting to regulate the flow of information. As 
we like to say, genetic discrimination is about discrimination, not 
genetics.
     We believe that genetic discrimination is wrong, and if a 
company does intentionally discriminate, remedies should be available. 
However, the coalition would oppose legislation that would provide 
unlimited punitive and compensatory damages for victims of genetic 
discrimination, or that would expose employers to baseless litigation. 
Furthermore, no employer should be at risk of liability for 
inadvertently receiving information that is deemed ``genetic.''
     Duplicative efforts to guard against genetic 
discrimination are costly and confusing. Any legislative proposals 
regarding genetic discrimination should take into account the 
protections already offered by the HIPAA and its regulations, the ADA, 
and other federal, state, and local statutes and regulations.
    In sum, the GINE Coalition's Statement of Principles embraces the 
letter and spirit of nondiscrimination and espouses the idea that 
discrimination, not information, should be the target of any such 
legislation. These principles are explained in more detail as follows.
    Let me state again, the GINE Coalition supports the policy of 
nondiscrimination in employment based on an individual's genetic makeup 
or pre-disposition to certain diseases or conditions. Employment 
decisions should be based on an individual's qualifications and ability 
to perform a job, not on the basis of other characteristics or imputed 
attributes that have no bearing on job performance.
    Further, being mindful of the rapid developments in genetic 
research and Dr. Collin's predictions regarding the beneficial use of 
genetic information in the near future, we believe that genetic non-
discrimination legislation must be carefully and narrowly drafted. 
Possession of genetic information must be differentiated from the use 
of such information for discriminatory purposes. Legislation should be 
directed at controlling and punishing discriminatory conduct, rather 
than regulating and burdening the flow of information. The law should 
not trigger liability based on an employer's mere receipt of genetic 
information, such as through conversations concerning a relative's 
illness or derived from such normative behavior as visiting the sick 
and consoling the bereaved.
    Thus, our hope today is to sound a note of caution and urge this 
Committee to carefully consider the impact of its actions. In light of 
the absence of any evidence of the use of genetic information for 
discriminatory purposes, there is no urgent need to act speedily.
    As Congress has the time to act with deliberation and care to draft 
a law, I urge the subcommittee to ensure that any genetic 
discrimination legislation excludes any unnecessary and detrimental 
provisions which would:
    1. Expose employers to punitive damages for technical violations;
    2. Mandate that employers provide health coverage of all genetic 
disorders.
    3. Create conflict among Federal laws and between Federal and state 
standards;
    4. Fail to provide a single Federal standard;
    5. Permit receipt of genetic information under the FMLA, but not 
with respect to the ADA, HIPAA, and other more likely sources of such 
information;
    6. Adopt an overly broad definition of ``family member;'' and
    7. Require employers to process genetic information and health care 
information in different ways.
Punitive damages for technical violations
    All parties share the goal of eliminating discrimination any in the 
workplace, from the hiring process to providing benefits. When a 
company intentionally discriminates, remedies should be available. 
However, the Coalition opposes legislation that that would expose 
employers to baseless litigation and would provide punitive and 
compensatory damages absent actual discrimination. The receipt of 
genetic information as part of an ADA accommodation dialogue should not 
create even the possibility of conduct violating any law. Assisting an 
employee receive health insurance coverage should never give rise to a 
cause of action. Given the availability of significant protections 
under other laws, administrative enforcement and equitably based 
remedies (including loss of wages and benefits) should be sufficient to 
allay fear of possible discrimination while mitigating the risk of a 
dramatic increase in baseless and inherently expensive litigation. 
Unfortunately, the House bill resorts to jury trials with punitive and 
compensatory damages for any violation, without distinction, which will 
necessarily invite additional litigation.
Mandate to cover all genetic conditions
    The driving force behind the Genetic Information Nondiscrimination 
Act has not been a rash of genetic discrimination cases or mishandling 
of genetic information, but, rather, the fear of possible 
discrimination which may deter employees from availing themselves of 
genetic tests. Therefore, the Coalition strongly believes it is in all 
parties interest that the bill only should prohibit employers from 
discriminating based on genetic tests, not family history that could 
be--and most times is--completely unrelated to tests, usually 
anecdotal, and often erroneous. This limitation would greatly minimize 
the opportunity for unintended consequences and unnecessary litigation 
under the bill, while also thoroughly addressing the issue which 
generated the bill. It would also greatly reduce the probability that 
the bill will conflict or complicate compliance with other laws.
    As proposed, the House bill could permit plaintiffs to sue an 
employer for offering health benefits that do not cover treatment for a 
specific genetic condition. This provision would serve as a de facto 
federal mandate requiring employers to offer health plans covering all 
treatments for all genetic related conditions. Members of the 
subcommittee may recall that President Clinton in Executive Order 
13145, barring genetic discrimination against federal employees, 
specifically exempted the Federal government from being compelled to 
provide such coverage and from any resulting law suits.\3\ We urge that 
this bill should provide for similar protections in the private sector 
and to all states and political sub-divisions.
Conflict among Federal laws and between Federal and State standards
    Should a new federal genetic discrimination law be enacted, the 
Coalition believes it is essential that it be made to precisely mirror 
the requirements and protections of existing employment statutes and 
that it not conflict with current laws or disrupt existing 
nondiscriminatory employment practices.
    As a practical consideration, there is always concern that new 
employment legislation will be drafted without due consideration being 
given to its impact on and its interaction with existing laws. The 
interrelationship and interaction among the ADA, FMLA and state 
workers' compensation law, all of which impose different legal 
requirements, demonstrates this problem. Because each law was passed at 
a different time and has a different policy objective, an employer's 
efforts to comply with one law can easily cause it to be in conflict 
with provisions of the other laws. Employment laws are most effective 
when compliance with one federal or state law does not contradict other 
laws or does not require employers to violate one law to satisfy 
another.
    Any genetic nondiscrimination legislation must be balanced, 
objective, and developed with existing law in mind. Any legislative 
proposals regarding genetic discrimination should take into account and 
be in accordance with the protections already offered by the HIPAA and 
its regulations, the ADA, and other federal, state, and local statutes 
and regulations. Duplicative efforts to guard against genetic 
discrimination are costly, confusing, and unnecessary.
Lack of a single Federal standard
    H.R. 493 would not create a single federal standard, but 
unfortunately would allow a patchwork of state standards to impose 
inconsistent requirements. Any Federal legislation should recognize the 
problems faced by employers as they try to comply with the numerous 
genetic discrimination laws already in existence. More than 30 states 
have enacted laws prohibiting discrimination based on genetic 
information. However, these laws vary widely. If Congress enacts 
legislation barring employment discrimination based on genetic 
information then it should include a safe harbor providing that 
employers in compliance with the federal standards cannot be liable 
under state or local laws banning such discrimination. There should be 
only one standard, your standard.
Permitting receipt of genetic information
    Under the proposed bill, genetic information may lawfully be 
acquired from some sources, such as FMLA medical certifications and 
workers' compensation forms, whereas the same information from more 
likely sources, such as employer-provided sick or family leave that is 
not FMLA qualifying, ADA accommodations or discussions regarding health 
insurance coverage under HIPAA or COBRA, is not allowed.
    The interplay of the proposed legislation and the ADA and HIPAA 
creates significant difficulties. Employer efforts to make timely and 
accurate determinations regarding requests for accommodations or claims 
brought under current law should not be inhibited or made illicit.
    Finally, many employers provide leave for illnesses not covered by 
the FMLA, or beyond what is mandated by the FMLA for medical and family 
reasons or provide similar leave but fall below the 50 employee 
threshold under the FMLA. In order to administer these leave programs, 
employers routinely require employees to provide documentation of the 
need for leave. Exposing employers to liabilities for requiring 
documentation will discourage them from offering these leave benefits.
    It is imperative that legislative efforts be focused on prohibiting 
the discriminatory use of genetic information, not on the flow of such 
information. There should be a broad exception permitting the 
acquisition of all such information, if collected pursuant to law and 
retained in confidential files. The information should not be the 
issue; the misuse of the information should.
Expansive definition of family member
    If there must be a cause of action based on family history, then it 
should be of reasonable scope. The Coalition believes that any 
legislation should only cover instances in which information is 
scientifically proven to reveal patterns of inheritance of genetic 
conditions and is useful for medical diagnosis of the employee and his 
or her immediate family. Unfortunately, the House bill defines ``family 
member'' as all ``individuals related by blood to the individual or the 
spouse or child.'' This is merely an opportunity for plaintiffs' 
attorneys to exploit and an invitation for frivolous litigation. There 
is no reason, in law or science, to provide statutory status for 4th 
cousins thrice removed, or the unknown relatives of the unknown 
biological father of an adopted child.
Inconsistent recordkeeping and technical requirements
    H.R. 493 would require employers to follow one set of rules for 
handling genetic information and a different set for handling health 
care information. As a result, employers would have to distinguish 
between genetic information and other health care information they 
collect in the course of providing benefits, accommodations for the 
disabled, and a safe workplace, in general. Indeed, in many cases, 
employers might be required to keep two or more sets of confidential 
health care files for employees--one for records with genetic 
information, one for records with other health care information, one 
for insurance matters.
    Further, making the distinction between genetic information and 
health information is not a task for laymen. Making that distinction, 
as demanded by the bill, may not even be possible. HR professionals 
should not be compelled to decide when a health problem is genetic or 
not, contingent or manifest, or any other similar decisions. As 
significantly, such decisions, if erroneous, should not be the basis of 
statutory claims, jury trials, and punitive and compensatory damages.
    The balance of our submission is a discussion of existing state and 
federal laws which have a bearing on genetic discrimination in the 
workplace, and specific concerns with pending federal legislation. We 
believe they support the Coalition's belief that the current absence of 
claims of genetic discrimination in employment grows that the fact that 
(1) employers have no interest in acquiring such data and (2) current 
laws already prohibit and punish such conduct. That, in turn, supports 
the Coalition's belief that Congress faces no urgent need to act and 
can duly deliberate the implications of this or any legislation 
regarding genetic discrimination in the workplace.
Current laws relating to genetic nondiscrimination
            A. State laws
    State legislatures have been the pioneers in enacting laws 
governing various aspects of genetic information in the workplace. To 
date, laws enacted in over 30 states address in one form or another the 
issue of genetic discrimination in employment. In addition, other state 
laws may address additional select aspects of genetic information.
    The state experience is valuable for a number of reasons. Not least 
of these is that it shows the 'cost' of hasty legislation in a rapidly 
developing area. No fewer than six states have already had to revise 
their laws to keep pace with scientific advances. More than any other 
feature of state law, this promises to be model for federal 
legislation.
    The 1948 McCarran-Ferguson Act explicitly grants insurance 
regulation to the states. The Employee Retirement Income Security Act 
of 1974 (``ERISA '') preempts state laws pertaining to self-funded 
employee benefits plans. In 1996, the Health Insurance Portability and 
Accountability Act (``HIPPA '') became the first federal law to 
directly address genetic information. The law prohibits health 
insurance discrimination based on any ``health status-related factor,'' 
including genetic information, for group health plans. Laws governing 
genetic discrimination in 34 states have complemented HIPPA protections 
related to health insurance.
            B. Executive Order 13145
    On February 8, 2000, President Clinton signed Executive Order 
13145, which prohibits discrimination in federal employment on the 
basis of genetic information. The EEOC was assigned responsibility for 
the Executive Order and its enforcement under the Americans with 
Disabilities Act. On July 26, 2000, the EEOC issued a Policy Guidance 
explaining the definitions, Prohibitions, and exceptions in Executive 
Order 13145.
            C. Title VII of the Civil Rights Act of 1964
    Title VII of the 1964 Civil Rights Act may provide some protection 
against genetic discrimination where such discrimination may have 
``disparate impact'' based on race, sex, religion or national origin, 
e.g., sickle cell anemia (African-Americans), Tay Sachs (Ashkenazi 
Jews).
            D. Genetic information and the Americans with Disabilities 
                    Act
    State and federal statutes prohibiting disability discrimination in 
employment are the most likely source of genetic information 
protections. The ADA protects individuals with one or more physical or 
mental impairments that substantially limits the individual in 
performing a major life activity; an individual with a record of such 
impairment; or an individual who is ``regarded as'' having such an 
impairment. It is clear that the ADA covers individuals who have a 
genetically-related disability once it is manifest and substantially 
limits a major life activity. Also, the ADA covers individuals with a 
prior record of a genetically-related disability that is manifest. 
However, the courts have not yet determined definitively whether the 
ADA should be construed to cover employment discrimination on the basis 
of genetic information concerning diagnosed, but asymptomatic, genetic 
conditions which are not manifest. To this point, virtually no case law 
exists regarding ADA coverage of genetic discrimination in the 
workplace.
    That being said, the EEOC has long taken the position that the 
Americans with Disabilities Act protects individuals with asymptomatic 
genetic conditions from discrimination in employment. The EEOC 
successfully filed against Burlington Northern-Santa Fe Railroad based 
on genetic testing of employees for a genetic marker related to carpal 
tunnel syndrome. The notoriety of that incident demonstrates that it 
was a unique event. It also demonstrates that current laws were able to 
resolve the matter completely. After swift government enforcement 
actions, the parties reached a settlement on the EEOC suit in April 
2001, in which the railroad agreed to stop testing. As was stated 
before the House on July 24, 2001 by one of those improperly tested by 
Burlington-Northern, the EEOC's actions were exceptional, effective, 
and exemplary.
    Given the EEOC's guidance on this issue, as well as their 
enforcement history, employers should expect EEOC enforcement actions 
and individual charges under the ``regarded as'' prong of the ADA, if 
they choose to make employment decisions involving individuals with 
genetic disorders based upon myths, fears, or stereotypes, rather upon 
the person's ability to perform specific required job tasks, with or 
without reasonable accommodation, in a safe manner.\4\
Limitations on genetic testing in the workplace
    An employer's ability to engage in genetic testing and to use the 
results of such testing in making a variety of employment decisions may 
already be limited in a number of ways by the provisions of the 
Americans with Disabilities Act. 42 U.S.C. Sec. 12101, et seq. Genetic 
testing is a medical examination and the ADA contains specific 
provisions limiting the manner in which an employer may conduct medical 
examinations and inquiries.
    The ADA contains specific provisions dealing with the ability of an 
employer to request or obtain medical information or to require medical 
examinations. The ADA prohibits absolutely any medical inquiries or 
medical examinations at the pre-offer stage of the employment 
application process. 42 U.S.C. Sec. 12112(d)(2)(A). Genetic screening 
clearly constitutes a medical inquiry or examination and, hence, the 
ADA would prohibit an employer, for example, from requiring all job 
applicants to undergo genetic screening.
    Once an offer of employment has been made, the employer may 
condition Sec. that offer upon the successful completion of a medical 
examination. Id. at Sec. 12112(d)(3). This so-called conditional offer 
medical examination specifically is authorized under the ADA and the 
statute contains no limitations upon the scope of such an examination. 
Hence, the ADA, at this stage of the employment process, would not 
prohibit or limit the ability of an employer to engage in genetic 
screening. To give a conditional offer examination, however, an 
employer must satisfy three requirements. First, the examination must 
be given to all entering employees regardless of disability. Id. at 
Sec. 12112(d)(3)(A). Second, the information obtained must be collected 
and maintained in a confidential manner. 42 U.S.C. Sec. 
12112(d)(3)(B).\5\ Third, the statute requires that the results of any 
medical examination may be used only in accordance with the non-
discrimination requirements of the statute. Id. Sec. 12112(d)(3)(C). 
Generally, this requirement means that an employer may revoke a 
conditional offer of employment only if the results of the medical 
examination demonstrate that the individual cannot perform the 
essential functions of the job with or without reasonable 
accommodation.
    Finally, the ADA limits an employer's ability to conduct medical 
examinations or make medical inquiries of current employees to those 
circumstances where the examination or inquiry can be shown to be ``job 
related and consistent with business necessity.'' 42 U.S.C. Sec. 
12112(b)(4)(A). This standard has been interpreted by the EEOC as 
relating to an employee's present ability to perform the job. See 29 
C.F.R. App. Sec. 1630.10 (there should be ``a fit between job criteria 
and an applicant's (or employee's) actual ability to do the job. ''). 
Because genetic testing normally addresses what may occur in the 
future, not an individual's actual ability to perform specific job 
tasks, in most cases, it is unlikely the ADA would allow genetic 
testing of current employees under the ``job relatedness'' standard.\6\
    The current trend of judicial decisions recognizes that non-
disabled individuals may enforce the statute's restrictions on medical 
inquiries.\7\ Hence, even if an individual with a genetic marker or 
defect is not deemed to be ``disabled'' within the definition of the 
ADA, the statue still protects the person from being required to 
undergo genetic testing unless the testing complies with the above 
requirements.
Conclusion
    In closing, the Genetic Information Nondiscrimination in Employment 
Coalition believes that genetic discrimination is wrong. To reiterate, 
we believe that employment decisions should be based on an individual's 
qualifications and ability to perform a job, not on the basis of 
characteristics that have no bearing on job performance.
    The GINE Coalition believes that any federal legislation 
prohibiting genetic discrimination in employment should focus on 
controlling discriminatory conduct, not the flow of information, should 
conform to other federal employment discrimination laws, should create 
a single federal standard, should avoid duplicative administrative 
burdens, and should not impede the beneficent results of the remarkable 
research now taking place. Finally, such legislation should not be so 
broadly constructed as to encourage frivolous litigation. By 
acknowledging the principles set forth in this testimony, the 
subcommittee can help make this legislation more effective.
    Again, I thank the subcommittee for listening to our perspective on 
the issue of genetic discrimination and for its invitation to testify 
today. The Coalition looks forward to working with you--in the future, 
as in the past--to make this the best possible law. I will be happy to 
answer any questions you may have.
                                endnotes
    \1\ Title I of the Genetic Information Nondiscrimination Act 
addresses issues related to genetics and insurance coverage. Although 
certain individual Coalition members may have views on Title I, the 
Coalition's comments are limited to Title II of the bill.
    \2\ EEOC v. Burlington Northern Santa Fe Railroad (N.D Ia, settled 
April 18, 2001).
    \3\ ``[n]nothing in this order shall be construed to * * * require 
specific benefits for an employee or dependent under the Federal 
Employees Health Benefits Program or similar program.''; 1-402(b)
    \4\ We should recognize, however, that there may be perfectly valid 
and non-discriminatory reasons for an employer to consider an 
employee's genetic information in order to ensure that the employee is 
working in an environment that would not exacerbate the employee's 
genetic predisposition to an illness or other health condition. The ADA 
recognizes that an employer may impose the qualification standard that 
an employee not poses a ``direct threat'' to the health or safety of 
others in the workplace. 42 U.S.C. Sec. 12113(b). The EEOC has expanded 
this statutory definition to include the individual with a disability. 
29 C.F.R. Sec. 1630.2(r). Protection of a worker may mean that for his 
or her health and the safety of others, the individual should not be 
assigned to a job. In Echazabal v. Chevron, 536 U.S. 73 (2002), the 
Supreme Court unanimously ruled that the EEOC's interpretation was 
correct and that an employer may legitimately object to idly permitting 
an employee's self-inflicted exposure to injury or worse.
    \5\ The ADA authorizes disclosure of medical information obtained 
from a conditional medical examination only in the following 
circumstances:
     To supervisors and managers who need to be informed about 
necessary restrictions on the work duties of the employee and any 
necessary accommodation;
     To first aid and safety personnel; and
     To government officials investigating compliance with the 
ADA.
    42 U.S.C. Sec. 12112(d)(3)(B)(i)-(iii).
    \6\ An exception may arise where federal regulations, such as those 
promulgated by OSHA, would require an employer to engage in medical 
monitoring of employees. See, e.g., 29 U.S.C. ' 655(c)(7) (providing 
for the monitoring of employee exposure for employee safety).
    \7\ See Cossette v. Minnesota Power & Light Co., 188 F.3d 964 (8th 
Cir. 1999); Griffin v. Steel Tech, Inc., 160 F.3d 591, 594 (10th Cir. 
1998); Fredenburg v. Contra Costa County Dept. of Health Services, 172 
F.3d 1176, 1182 (9th Cir. 1999).
                                 ______
                                 
    Chairman Andrews. Thank you very much, Mr. Fishman.
    Thank you to each of our four witnesses for an outstanding 
contribution to discussion.
    Dean Rothenberg, I would like to start with you, if you 
would. Mr. Fishman, in his written testimony, expresses the 
view that the bill that Ms. Slaughter and Ms. Biggert have 
introduced would penalize the flow of genetic information and 
therefore, retard and prohibit scientific progress.
    Do you agree with that conclusion? I assume you don't. And 
if you disagree, explain to us the basis for your disagreement.
    Ms. Rothenberg. I don't understand it. I mean, so maybe we 
could have a further explanation of it. But basically we have a 
lot of information and data that for whatever reason we are 
paralyzed and we are not reaching the promise of where we need 
to go.
    And if we currently have 34 states that have laws where 
supposedly there aren't any cases being brought, his argument 
would be well, that must mean there is no discrimination. 
Another way of looking at it is we may not be getting the word 
out or enforcing what needs to get done. So that----
    Chairman Andrews. Do you think it is more likely that the 
flow of genetic information for laudable purposes, for 
research--do you think there is more of a problem with it being 
retarded by people being afraid to sign up for clinical trials 
or by the limitations put on employer use of the material in 
this bill?
    Ms. Rothenberg. Well, what I think at the very basis of 
this bill and the very ethical principle we need to remember is 
if, in fact, there is an understanding that an employee thinks 
that information is going to help them, their health, their 
well-being, their ability to do the job, the law provides for 
there to be written authorization and consent. If we listened 
to this story, it was about doing something behind someone's 
back. It was doing something in secrecy.
    And one of the arguments of why we may not have more of 
this or we don't know about it is because it may be being done. 
He happened to have found out. And that is why there is some 
narrowing or restricting of access or putting penalties 
associated with it because you are totally shifting the burden 
for him to have to have figured it out that it was being done.
    Chairman Andrews. Just as we are obviously all sympathetic 
to protect the interests of Mr. Escher and people like him, I 
think we are also all sympathetic to the concerns that Mr. 
Fishman raises about not wanting to create undue burdens on 
business enterprises and employers. And I think Ms. Biggert has 
paid particular attention to that.
    I wanted to ask, Ms. Pearson, you, Mr. Fishman in his 
testimony talks about real burdens and actual costs that would 
be visited upon employers should the legislation be adopted. 
Have you experienced any of those real burdens and actual costs 
in implementing the policy at IBM?
    Ms. Pearson. It has been about a year-and-a-half since we 
instituted our global policy. And I can't say we have 
experienced anything in our own policy. Our own policy is 
fairly broad. It talks about nondiscrimination in our 
employment decisions and health insurance decisions. It is a 
global policy. We have not experienced any significant costs.
    We have studied the legislation that has been discussed 
today. We do have some observations on some of the issues in 
terms of practical, you know, implementation, which are 
reflected in my written statements and I have touched on.
    You know, implementation, for example, segregated record 
keeping--if you get into specifics and point to certain things 
that are not related to the principle here, which is prevention 
of harm to all of us, prevention of harm in terms of employment 
or health insurance, you know, good minds can come to agreement 
on that. But overall, we have not----
    Chairman Andrews. Right.
    Ms. Pearson, is there anything in the bill that we have 
been talking about today that would in any way materially alter 
the business practices of IBM, given the fact you have adopted 
this policy already?
    Ms. Pearson. We have looked at the bill, and I can't say 
that there is.
    Chairman Andrews. Mr. Escher, I just want to ask you one 
question. What advice would you give--well, let's assume that 
this experience has happened to you, and one of your neighbors 
comes to you and says, ``You know, my employer wants me to 
volunteer to take some genetic test for some study that is 
being done.''
    Would you advise your neighbor to go along with that study 
or not, based on what has happened to you?
    Mr. Escher. Well, based on my experience, I would highly 
recommend that he doesn't do it. And it is just that you are 
empowering someone to find things out about you that you don't 
even know yourself. And that is very powerful information that 
they can obtain from genetics testing.
    And you have no idea how much morals or how much goodness 
these people have in their heart as to what they are going to 
do with the information that they get. I mean, it could be used 
for good things. Like I say, if it is in the hands of 
professional medical people, it is a great discovery. It is a 
good thing.
    But if you let that type of information get into the hands 
of the wrong people, it is a devastating experience. And I am 
not saying that Burlington Northern as a company is a bad 
company. What I am saying is that the people who were in the 
leadership of that company at that time made some very poor 
choices.
    Chairman Andrews. Thank you very much.
    Mr. Kline?
    Mr. Kline. Thank you, Mr. Chairman.
    I want to add my thanks to all the witnesses for being 
here. It is important and certainly moving testimony.
    I think that there is a growing consensus among us that we 
should do what we can to block certainly intentional 
discrimination against an employee because of the genetic 
mapping. But I am concerned, and I know some of my colleagues 
are, that we not unintentionally ourselves do some damage when 
we pass this legislation.
    So if I could turn to Mr. Fishman here briefly.
    Keeping in mind that we are trying to have legislation that 
would prevent discrimination, you indicated, I think, in your 
written testimony that there would be with this legislation a 
de facto mandate or could be on a company to provide health 
coverage based on the genetic information.
    Do I have that right? Could you kind of walk me through 
what you are trying to get at?
    Mr. Fishman. I will do my best, Mr. Kline.
    Just as the bill deals with contingent realities, I think 
we have to because the law of unintended consequences seems to 
multiply with legislation.
    The proposed bill, for example, does not include language 
akin to that in executive order 13145. I think that says 
nothing in this order shall require specific benefits for any 
employee under a federal health program. So there is nothing in 
this bill which exempts employers from being compelled to 
provide coverage for any genetic ailment.
    There are already suits which have under current law 
compelled employers to provide specific coverages for current 
ailments or current cures. As a result, employers face the 
specter of being sued to provide such coverage. And this bill 
provides a platform for doing so.
    The coalition strongly believes that in this point, 
President Clinton was right in making clear that the limits of 
the executive order, and this law should have the same limit. 
This law should make clear that nothing in this bill shall be 
construed to required that specific benefits be provided for 
any employee or dependent under any insurance program, nor 
could any employer be sued for failing to provide a particular 
form of coverage.
    Mr. Kline. Okay, thank you very much for that 
amplification.
    I am prepared to yield back in just a minute. But before I 
do that, I should make sure that I extend the thanks of 
Minnesota to Ms. Pearson and IBM for being a major employer in 
our state.
    And just a comment. I think we need to be careful here. IBM 
has imposed a self-imposed limitation on how they use genetic 
information and so, perhaps may not be subject to some of the 
lawsuits which we might be concerned with when we pass 
legislation. And I hope as we work together as a subcommittee 
and a committee that we are careful to protect against 
discrimination and not open new pathways to litigation.
    With that, Mr. Chairman, I yield back.
    Chairman Andrews. Thank you, Mr. Kline.
    Mr. Hare?
    Mr. Hare. Thank you, Mr. Chairman.
    Coming from a labor background, I am acutely concerned 
about any discrimination in the workplace, whether it is age-, 
race-or gender-specific. And today we are presented with an 
issue appropriate to our time and the amazing scientific and 
technological advancements that we have made as a society: 
discrimination based on our genetics.
    We find ourselves presented with that age-old question 
regarding the fine line between scientific advancement and 
practice in our lives. What do we plan to do with the knowledge 
that we have? And do we use our advancement for good, finding 
cures for once incurable diseases or making one more 
comfortable in the work place? Or do we use our knowledge in 
ways to discriminate and differentiate the value between 
people? When do we overstep that line and interfere with the 
natural world?
    As Ms. Pearson states in her testimony, we legislate based 
on hindsight. I would like to go further in that and argue that 
we incorporate a bit of preemption in the process as well.
    Look at issues such as affirmative action, limits on 
damages in jury cases, speed limits on our highways, and worker 
compensation laws, among other issues. All of these were 
established because of the potential for harm or because 
discrimination or harmful behavior existed. They are the 
results of preemption.
    In case an event should occur, these laws exist to protect 
individuals. The value of our laws and how we are able to 
analyze them for improvement if loopholes are found and have 
the potential to be harmful or have, in the case studies 
presented today, proven to hurt people that the laws are trying 
to protect, well, then we must fix them.
    And, of course, we cannot preempt everything. But when we 
have discovered instances where our laws are not working, it 
seems to me it is our obligation to amend them, especially as 
we approach a more scientifically evolved society.
    There is a great risk involved in the advancement of our 
knowledge. And we must be aware of the potential for 
discrimination.
    I just have two questions, maybe one for the panel and one 
specifically for Mr. Fishman.
    For the panel, do you see other ways to protect employees 
from genetic discrimination that GINA does not address? And how 
can the protections outlined in the bill be stronger or more 
effective, would be my first question.
    And if I could, Mr. Fishman, while I appreciate your 
arguments about access to one's genetic information being used 
to create employer-provided wellness programs or prevent 
exposure to harmful working conditions, my question is, where 
do we draw the line? I believe this puts us on a very slippery 
slope. If we allow employers access to our genetic information 
for any reason, what prevents them from using it to 
discriminate as they did against Mr. Escher?
    And let me just say, Mr. Escher, I am incredibly appalled 
by what happened to you. And I apologize for that. That never 
should have happened, and today no worker should be subjected 
to that.
    Mr. Fishman. Well, while the panel is pondering the answer 
to your first question, perhaps I can respond to your one to 
me.
    It is my understanding that legislation in its highest 
hopes cannot prevent. We have laws against bank robbery, but 
they don't prevent the bank robbers. We should have a law that 
prevents the nonconsensual disclosure of genetic information or 
the use of such information in employment decisions. That is 
what this law should be.
    Can we prevent an abuse? Well, I wish you guys could figure 
out a way to do it. But so far it hasn't happened. But I have 
no problem and my coalition has no problem with a law directed 
at punishing the misuse and abuse and the incorrect use of 
genetic information. We are at one on that.
    Ms. Rothenberg. I don't think there is any magic bullet in 
the world for people to respect one another. And we can pass 
all the laws we want, and that doesn't necessarily mean that 
people will stigmatize and figure out ways to hurt one another.
    That said, I think we have to put in perspective that this 
debate has been going on for a long time. And we are tweaking 
now things that are--there have been some concerns expressed 
about record-keeping and some levels of damages.
    But 12 years ago, 13 years ago when we were first trying to 
craft a proposal, it didn't look like this. It was 
significantly stronger, at least from the perspective of many. 
And this has been years and years and years of compromise where 
we are really sitting at a table where most people and most 
people on both sides are applauding it as at least making, I 
would argue, a very significant social policy statement that we 
might have not been able to do 20 years ago.
    But we have seen this progression to the point where we can 
all say that we are not going to tolerate misuse of 
information. I would personally be making this stronger. Some 
of that is in the testimony. But I have a sense of there really 
being a consensus of taking that statement collectively and 
saying we have to give it a try.
    And so, I think rather than tinker with how we could either 
make sure we don't have a frivolous lawsuit on the one side 
because that is also fear where there is no justification in 
fact for that in this context or on the other side that, you 
know, there is going to be not enough protections. It is a good 
start.
    Chairman Andrews. The gentleman's time is expired.
    Do either Ms. Pearson or Mr. Escher want to briefly respond 
to the question to the panel?
    Thank you very much, Mr. Hare.
    Dr. Boustany?
    Mr. Boustany. Thank you, Mr. Chairman.
    Ms. Pearson, I want to applaud IBM and your efforts in 
taking the lead on this issue. And I certainly appreciate your 
testimony and welcome any suggestions you might have as we go 
forward with the legislation.
    I have read in your testimony that the definition of 
genetic information may be defined over-broadly. And do you 
have any thoughts on how we might pare that down? And what are 
the consequences of an over-broad definition or over-inclusive 
definition?
    Ms. Pearson. Well, I think this is one of the core issues. 
And we, for example, in setting our own policy, we did a very 
simple thing because we ourselves were not sure how to define 
it. And we didn't want to kind of go down a road and then have 
it be legislated in a different way. And we added the word 
``genetics'' to our equal employment opportunity policy 
alongside the other fundamental attributes that define us all 
as people, so gender, race, et cetera. And we left it to see 
how operationally, you know, practically, things would work.
    In terms of the legislation, I don't have a specific 
suggestion other than to say that from an employer context we 
want to be very careful in how we manage data. I have been 
involved in managing data and information policy for a decade 
now. And operationally when you say let's collect data and 
apply certain policies to it, it is very important that we know 
what the data is that we are talking about.
    And the water-cooler exception, for example, that was 
mentioned earlier by one of the members is very important 
because if you do inadvertently come into contact with 
information, even if you are not looking for it, you need to 
not be held to a standard here that is higher than if you are 
consciously seeking or arranging access to such information by 
the provision of health insurance coverage. Then it is 
absolutely relevant and worthy that we be held to a standard 
for managing that kind of data and managing carefully.
    So I think it is clarity between that kind of information 
that is coming into your possession by virtue of arranging for 
employment or health insurance coverage versus water cooler or 
a kind of casual conversation sort of thing. Like in the 
workplace, you could mention to somebody that your mother has 
breast cancer, therefore the chances are higher, that sort of 
thing, which makes it, frankly, an operational challenge to 
figure out how do you actually manage to that. Those are the 
kinds of issues.
    Mr. Boustany. I thank you.
    Dean Rothenberg, I want to look at the issue of job 
relevance. In your testimony you stated that an employer should 
be prohibited from requesting or requiring collection of 
genetic information unless it is relevant to the job. And I 
don't read that in the bill that we have as allowing for this 
sort of information.
    So do you support a provision of that nature to be added 
into this bill? And could you comment on that?
    Ms. Rothenberg. Yes, I thought Congresswoman Slaughter read 
some language with respect to that earlier on that actually did 
address that provision. Am I correct? Yes, okay. So there is 
some discussion about it.
    When we made that recommendation over 10 years ago, I 
remember asking the scientists at the time was there actually 
anything that they knew about that would actually meet that. 
And at the time, there really wasn't. So there could be in the 
future, and you would want to hold that.
    Again, there should always be consent of the individual 
because an employee might decide I would rather walk away from 
a job than get information. And they should be given that risk 
benefit to be able to make individually. So I would never 
support a situation where any sort of testing is done under 
that rationale without there being some discussion and the 
employee's authorization.
    Mr. Boustany. Yes, and I would submit to you that there is 
a large gap between a genetic test and job relevancy. I am not 
aware of any----
    Ms. Rothenberg. Right. And it is not only a test, it is 
information.
    Mr. Boustany. Right.
    Ms. Rothenberg. So you might have information about 
someone's family history and there is no test. Three 
generations of people working in a mine, for example, all that 
develop some sort of disease. There might be some assumptions 
made about that, but there might not be any sort of test 
relevant or developed yet.
    Mr. Boustany. I would also say I am glad to hear that you 
mentioned the balance between the fear of having tests done and 
the other fear generated by a rash of frivolous lawsuits. And I 
think that is something we really need to keep in mind as we go 
forward in this.
    Ms. Rothenberg. Well, one is, though, having an impact on 
your investment in the genome. So I think, as Congress, as a 
matter of social policy, for whatever reason, you don't want 
that paralyzing you.
    Mr. Boustany. Right, I understand that. But I think the 
other fear could also have a paralyzing effect as well.
    Ms. Rothenberg. Okay. We haven't seen it in the states. We 
have not seen it. So if, in fact, we have 34 states in the 
employment context and 41 plus in the insurance context, I 
don't know why we are not. I mean, I have a whole bunch of 
assumptions about why we are not seeing the lawsuits, but I 
don't understand why all of a sudden they would jump up in this 
federal context when we haven't been seeing that much in the 
states.
    Mr. Boustany. I would just submit as we see more testing 
available and new tests coming out that this is something we 
clearly just need to watch.
    Ms. Rothenberg. Yes.
    Chairman Andrews. Thank you very much.
    Ms. Rothenberg. I understand.
    Chairman Andrews. Ms. Biggert, I am sure that you would 
like to participate in this discussion again. Thank you for 
being with us today and for your earlier testimony.
    Mrs. Biggert. Thank you very much, Mr. Chairman, for 
allowing me to participate.
    I have two witnesses I wanted to ask questions, and first 
is Dean Rothenberg.
    I am going to go back to a question that one of our other 
members asked. In the definition portion of the legislation, 
the bill defines a family member as a child, including a child 
born to or adopted by an individual. And some of the members 
raised concerns about that this legislation doesn't cover the 
unborn.
    And it is my understanding that it does, because of the 
shield that, as I said before, that we have to keep in mind 
that genetic information would be used to prospectively 
discriminate and to attempt to project future risk. And since 
employment is not an issue and health coverage is already 
assured, a fetus is essentially shielded under its mother's 
current insurance.
    And in practice, no provider of health coverage would 
improperly act against the unborn's interest, both because of 
the shield of the mother and the fact that after birth the 
child is fully protected.
    Would you agree with that interpretation? And maybe you 
can't answer now.
    Ms. Rothenberg. Could I just elaborate on--could we do a 
reality test on this issue? Perhaps it would help.
    I was just trying to think this through a little bit when 
the question was asked earlier. And actually some of my earlier 
work is on prenatal genetic testing. And I think that as a 
reality most of the genetic testing going on in this country is 
being done on women when they are pregnant. That is the captive 
audience historically.
    And in all my work in this area, my assumption has always 
been that if you had tested a woman while she was pregnant and 
there was some sort of genetic abnormality, it would reflect 
back into either the woman or the partner, the father, in this 
circumstance, that would have implications on their insurance.
    The implications on employment are not with respect to the 
fetus. It is with respect to the family members associated with 
the fetus that would ultimately be born. So I think we are 
going down a slippery slope. I don't see the connection.
    Mrs. Biggert. Well, I think that, to me, I guess it is a 
question of, you know, like a pro-life question.
    Ms. Rothenberg. I don't see its relevance in the context of 
this legislation.
    Mrs. Biggert. Because it really applies to the family, 
doesn't it, I mean, to the parents rather than to the coverage 
for insurance?
    Ms. Rothenberg. Well, there isn't fetal insurance.
    Mrs. Biggert. That is right.
    Ms. Rothenberg. I mean, the fetus is sitting inside the 
woman.
    Mrs. Biggert. Yes.
    Ms. Rothenberg. So it goes together.
    Mrs. Biggert. That is her coverage. Well, maybe if you 
could think about that. And if you have any ideas, I would love 
to get a written statement on that.
    And I would ask unanimous consent to include the March of 
Dimes letter, which I think does address this somewhat.
    Chairman Andrews. Without objection.
    [The letter follows:]
                      Office of Government Affairs,
                                            March of Dimes,
                                  Washington, DC, January 19, 2007.
Hon. Olympia Snowe, Hon. Edward Kennedy, Hon. Mike Enzi,
U.S. Senate, Washington, DC.
    Dear Senator Snowe, Chairman Kennedy and Ranking Member Enzi: On 
behalf of the March of Dimes Foundation, I am writing to express our 
support for the soon to be introduced ``Genetic Information 
Nondiscrimination Act of 2007.'' The March of Dimes has a significant 
stake in the passage of this legislation. As you may know, at least 
120,000 babies are born every year with birth defects. Children with 
severe birth defects may require expensive lifelong medical treatment. 
With the exciting progress of mapping the human genome, there is 
considerable apprehension that genetic information could be the basis 
for a new kind of discrimination.
    The March of Dimes pioneered genetic services, including counseling 
and testing of individuals at risk, and led early efforts to provide 
genetic screening of populations at risk (particularly newborn 
screening). Because of our efforts, every state now provides newborn 
screening for a number of conditions that can be treated.
    To fully reap the benefits of having deciphered the genetic code 
and determining patients' risk for certain conditions, they must be 
protected from discrimination in health insurance and employment. The 
Genetic Information Nondiscrimination Act provides these necessary 
protections by prohibiting health plans and insurers from using genetic 
information or services to make enrollment decisions or determine 
premiums.
    With the progress of medical science, it would be a shame if 
parents were afraid to take advantage of the benefits of genetic 
testing and newborn screening because they feared retaliation form 
insurers. To give their children the protection they need to be 
screened without apprehension of discrimination, we look forward to 
working with you to ensure passage of this important legislation.
            Sincerely,
                                    Marina L. Weiss, Ph.D.,
       Senior Vice President, Public Policy and Government Affairs.
                                 ______
                                 
    Mrs. Biggert. And then I would also mention I think they 
know that the people are supporting this such as the president, 
you know, would be something to ask about.
    And, Dr. Fishman, in the HHS Secretary's Advisory Committee 
on Genetic Health and Society 2005 report titled, ``An Analysis 
of the Adequacy of Current Law in Protecting Against Genetic 
Discrimination in Health Insurance and Employment,'' it states 
that currently there are no federal laws that directly and 
comprehensively address the issues raised by the use of genetic 
information.
    There are laws and court decisions that address part of 
these issues, but they leave substantial gaps in coverage and 
offer inconsistent safeguards at best.
    Is it your position that there are no gaps in these federal 
laws?
    Mr. Fishman. If I could just phrase it in a way that I can 
answer more accurately. It is our position that the historical 
record indicates that when these issues have been raised in a 
legal forum they have found adequate relief. Let me restate 
that again.
    There has been a great deal of discussion, for example, as 
to whether this genetic discrimination will be covered under 
the--I think it is regarded as provision of the ADA. Now, no 
one in my profession ever gets rich by betting on judges or 
enforcement agencies. But the EEOC believes that the ADA offers 
protection.
    And those handfuls--I am sorry--those fingerfuls of cases 
that have come up have found adequate relief under the current 
legal scheme. The EEOC does not appear to wish to change its 
views. No one appears to want to challenge it.
    It is certainly true I think today, and we can say this 
with some certainty, that any employer who rejected an 
applicant or terminated an employee on the basis of a genetic 
marker would face certain enforcement both from the individual 
and from the EEOC and would, just as they would under the ADA, 
just as they would under the proposed bill--and if the 
historical is indicative, they would prevail.
    Mrs. Biggert. Well, and then they go on further to say 
though that although individuals who encounter genetic 
discrimination cannot be said to lack any venues for relief 
under current law, many legal commentators agree that those 
avenues are uncertain and likely to lead to costly litigation 
and that current law does not adequately protect against 
genetic discrimination.
    And, again, if I could submit this report?
    Chairman Andrews. Without objection.*
---------------------------------------------------------------------------
    *The May 2005 report, ``An Analysis of the Adequacy of Current Law 
in Protecting Against Genetic Discrimination in Health Insurance and 
Employment,'' has been made a permanent part of this record and is 
archived at the Committee on Education and Labor. The report may also 
be viewed on the Internet at the following address: http://
www4.od.nih.gov/oba/SACGHA/reports/legal--analysis--May2005.pdf ]
---------------------------------------------------------------------------
    Chairman Andrews. The gentlewoman's time is expired.
    Mrs. Biggert. Okay. Could I just ask one other question?
    Chairman Andrews. Sure, absolutely.
    Mrs. Biggert. Mr. Fishman was talking about President 
Clinton's Executive Order 13145. It was my understanding that 
that prohibited genetic discrimination against federal 
employees only.
    Mr. Fishman. That is correct. My comment with respect to 
the executive order was the exception in it that provided that 
nothing in the executive order could be construed to require 
that the government provide specific coverage for specific 
ailments. And we wish that that same exception is articulated 
clearly in the pending legislation.
    Mrs. Biggert. I just wanted to clarify that. Thank you.
    Thank you, Mr. Chairman.
    Mr. Fishman. Yes, ma'am.
    Chairman Andrews. Thank you.
    I would yield to my ranking member and friend for any final 
comments he may have.
    Mr. Kline. Thank you, Mr. Chairman.
    Thanks again to the witnesses. And I yield back.
    Chairman Andrews. Thank you.
    I want to express my appreciation to the witnesses, the 
four witnesses this morning as well, Ms. Biggert, to you and 
Ms. Slaughter.
    Again, at the outset of this hearing, the ranking member 
talked about his desire to build regular order as we move 
toward considering legislation. I share that goal. And I think 
we have taken a good step toward it this morning. We have had a 
lot of views expressed and questions raised. And we will 
continue to embrace and analyze those questions.
    Again, thank you very much. The committee stands adjourned.
    One more thing I have to do. Sorry. Without objection, all 
members will have 5 legislative days to submit additional 
materials for the hearing record.
    Adjourned.
    [Whereupon, at 12:45 p.m., the subcommittee was adjourned.]

                                 
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