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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 

(II)

COMMITTEE ON EDUCATION AND LABOR 

GEORGE MILLER, California, Chairman

Dale E. Kildee, Michigan, Vice Chairman 

Donald M. Payne, New Jersey 

Robert E. Andrews, New Jersey 

Robert C. ‘‘Bobby’’ Scott, Virginia 

Lynn C. Woolsey, California 

Rube ́n Hinojosa, Texas 

Carolyn McCarthy, New York 

John F. Tierney, Massachusetts 

Dennis J. Kucinich, Ohio 

David Wu, Oregon 

Rush D. Holt, New Jersey 

Susan A. Davis, California 

Danny K. Davis, Illinois 

Rau ́l M. Grijalva, Arizona 

Timothy H. Bishop, New York 

Linda T. Sa ́nchez, California 

John P. Sarbanes, Maryland 

Joe Sestak, Pennsylvania 

David Loebsack, Iowa 

Mazie Hirono, Hawaii 

Jason Altmire, Pennsylvania 

John A. Yarmuth, Kentucky 

Phil Hare, Illinois 

Yvette D. Clarke, New York 

Joe Courtney, Connecticut 

Carol Shea-Porter, New Hampshire 

Howard P. ‘‘Buck’’ McKeon, California, 

Ranking Minority Member 

Thomas E. Petri, Wisconsin 

Peter Hoekstra, Michigan 

Michael N. Castle, Delaware 

Mark E. Souder, Indiana 

Vernon J. Ehlers, Michigan 

Judy Biggert, Illinois 

Todd Russell Platts, Pennsylvania 

Ric Keller, Florida 

Joe Wilson, South Carolina 

John Kline, Minnesota 

Bob Inglis, South Carolina 

Cathy McMorris Rodgers, Washington 

Kenny Marchant, Texas 

Tom Price, Georgia 

Luis G. Fortun ̃ o, Puerto Rico 

Charles W. Boustany, Jr., Louisiana 

Virginia Foxx, North Carolina 

John R. ‘‘Randy’’ Kuhl, Jr., New York 

Rob Bishop, Utah 

David Davis, Tennessee 

Timothy Walberg, Michigan

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 

Dale E. Kildee, Michigan 

Carolyn McCarthy, New York 

John F. Tierney, Massachusetts 

David Wu, Oregon 

Rush D. Holt, New Jersey 

Linda T. Sa ́nchez, California 

Joe Sestak, Pennsylvania 

David Loebsack, Iowa 

Phil Hare, Illinois 

Yvette D. Clarke, New York 

Joe Courtney, Connecticut 

John Kline, Minnesota, 

Ranking Minority Member 

Howard P. ‘‘Buck’’ McKeon, California 

Kenny Marchant, Texas 

Charles W. Boustany, Jr., Louisiana 

David Davis, Tennessee 

Peter Hoekstra, Michigan 

Cathy McMorris Rodgers, Washington 

Tom Price, Georgia 

Virginia Foxx, North Carolina 

Timothy Walberg, Michigan 

(III)

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

(1)

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 

2

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. 

3

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 

4

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. 

5

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 

6

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. 

7

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 

8

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 

9

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. 

10

[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. 

11

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, 

12

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 

13

can save lives while having the added benefit of reducing healthcare 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 employerprovided 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 

14

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 genebased 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 

15

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. 

16

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 

17

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. 

18

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. 

19

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. 

20

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 

21

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. 

22

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 

23

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 

24

*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] 

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 citywide 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 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. 

25

This predisposition to sickle cell disease does not guarantee that every AfricanAmerican 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 

26

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 

27

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 yearand-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. 

28

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 

29

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 forVerDate 0ct 09 2002 16:03 Apr 03, 2007 Jkt 000000 PO 00000 Frm 00033 Fmt 6633 Sfmt 6602 G:\DOCS\110TH\HELP\110-1\32740.TXT HBUD1 PsN: DICK
30

mal 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 ConVerDate 0ct 09 2002 16:03 Apr 03, 2007 Jkt 000000 PO 00000 Frm 00034 Fmt 6633 Sfmt 6602 G:\DOCS\110TH\HELP\110-1\32740.TXT HBUD1 PsN: DICK
31

gress 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. 

32

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 

33

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’’. Thirtynine 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 

34

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. 

35

(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. 

36

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 Xrays 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. 

37

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 

38

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 

39

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. 

40

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 discriminaVerDate 0ct 09 2002 16:03 Apr 03, 2007 Jkt 000000 PO 00000 Frm 00044 Fmt 6633 Sfmt 6602 G:\DOCS\110TH\HELP\110-1\32740.TXT HBUD1 PsN: DICK
41

tion 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. 

42

1The Genetics & Public Policy Center. 

[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 nondiscrimination 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 testing Human Papillomavirus (Roche) 

Prenatal Genetic Screen Fragile X Syndrome (U.S. Genomics & Quest Diagnostics) 

Pre-Implantation Testing of Embryos Early Stage Lung Cancer (University 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. 

43

Some genetic tests under development aim to predict the responsiveness of drugs 

for heart disease, cancer, asthma and other conditions. 

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 

44

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 

45

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. 

46

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 fedVerDate 0ct 09 2002 16:03 Apr 03, 2007 Jkt 000000 PO 00000 Frm 00050 Fmt 6633 Sfmt 6602 G:\DOCS\110TH\HELP\110-1\32740.TXT HBUD1 PsN: DICK
47

eral 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 nondiscrimination. 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. 

48

‘‘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 sciVerDate 0ct 09 2002 16:03 Apr 03, 2007 Jkt 000000 PO 00000 Frm 00052 Fmt 6633 Sfmt 6621 G:\DOCS\110TH\HELP\110-1\32740.TXT HBUD1 PsN: DICK
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entific 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 

50

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 inforVerDate 0ct 09 2002 16:03 Apr 03, 2007 Jkt 000000 PO 00000 Frm 00054 Fmt 6633 Sfmt 6621 G:\DOCS\110TH\HELP\110-1\32740.TXT HBUD1 PsN: DICK
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mation. 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. 

52

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

53

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. 

54

ENDNOTES

1Title 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) 4We 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. 5The 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). 7See 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 

55

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. 

56

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. 

57

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 

58

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 recordkeeping 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 

59

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 

60

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 

61

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 

62

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. 

63

*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] 

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.* 

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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