GENETIC NONDISCRIMINATION: 

IMPLICATIONS

FOR EMPLOYERS AND EMPLOYEES

HEARING

BEFORE THE 

SUBCOMMITTEE ON EMPLOYER-EMPLOYEE RELATIONS 

OF THE 

COMMITTEE ON EDUCATION AND 

THE WORKFORCE 

HOUSE OF REPRESENTATIVES

ONE HUNDRED SEVENTH CONGRESS

FIRST SESSION

HEARING HELD IN WASHINGTON, DC, JULY 24, 2001 

Serial No. 107-25 

Printed for the use of the Committee on Education 

and the Workforce

U.S. GOVERNMENT PRINTING OFFICE 

 77-674 pdf WASHINGTON : 2002 

For sale by the Superintendent of Documents, U.S. Government Printing Office 

Internet: bookstore.gpo.gov Phone: (202) 512-1800 FAX: (202) 512-2250 

Mail: Stop SSOP, Washington, DC 20402-0001
ii

COMMITTEE ON EDUCATION AND THE WORKFORCE 

JOHN A. BOEHNER, Ohio, Chairman 

THOMAS E. PETRI, Wisconsin GEORGE MILLER, California 

MARGE ROUKEMA, New Jersey DALE E. KILDEE, Michigan 

CASS BALLENGER, North Carolina MAJOR R. OWENS, New York 

PETER HOEKSTRA, Michigan DONALD M. PAYNE, New Jersey 

HOWARD P. “BUCK” McKEON, California PATSY MINK, Hawaii 

MICHAEL N. CASTLE, Delaware ROBERT E. ANDREWS, New Jersey 

SAM JOHNSON, Texas TIM ROEMER, Indiana 

JAMES C. GREENWOOD, Pennsylvania ROBERT C. “BOBBY” SCOTT, Virginia 

LINDSEY O. GRAHAM, South Carolina LYNN C. WOOLSEY, California 

MARK E. SOUDER, Indiana LYNN N. RIVERS, Michigan 

CHARLIE W. NORWOOD, JR., Georgia RUBEN HINOJOSA, Texas 

BOB SCHAFFER, Colorado CAROLYN McCARTHY, New York 

FRED UPTON, Michigan JOHN F. TIERNEY, Massachusetts 

VAN HILLEARY, Tennessee RON KIND, Wisconsin 

VERNON J. EHLERS, Michigan LORETTA SANCHEZ, California 

THOMAS G. TANCREDO, Colorado HAROLD E. FORD, JR., Tennessee 

ERNIE FLETCHER, Kentucky DENNIS KUCINICH, Ohio 

JIM DeMINT, South Carolina DAVID WU, Oregon 

JOHNNY ISAKSON, Georgia RUSH D. HOLT, New Jersey 

BOB GOODLATTE, Virginia HILDA L. SOLIS, California 

JUDY BIGGERT, Illinois SUSAN DAVIS, California 

TODD RUSSELL PLATTS, Pennsylvania BETTY McCOLLUM, Minnesota 

 PATRICK J. TIBERI, Ohio 

 RIC KELLER, Florida 

 TOM OSBORNE, Nebraska 

 JOHN ABNEY CULBERSON, Texas 

 Paula Nowakowski, Chief of Staff 

John Lawrence, Minority Staff Director

SUBCOMMITTEE ON EMPLOYER-EMPLOYEE RELATIONS 

SAM JOHNSON, Texas, Chairman

ERNIE FLETCHER, Kentucky, Vice Chairman ROBERT E. ANDREWS, New Jersey

JOHN BOEHNER, Ohio DONALD M. PAYNE, New Jersey 

MARGE ROUKEMA, New Jersey DALE E. KILDEE, Michigan 

CASS BALLENGER, North Carolina LYNN N. RIVERS, Michigan 

PETER HOEKSTRA, Michigan CAROLYN McCARTHY, New York 

HOWARD P. “BUCK” McKEON, California JOHN F. TIERNEY, Massachusetts 

THOMAS G. TANCREDO, Colorado HAROLD E. FORD, Jr., Tennessee 

JIM DeMINT, South Carolina 

PATRICK J. TIBERI, Ohio 
iii

Table of Contents 

OPENING STATEMENT OF CHAIRMAN SAM JOHNSON, SUBCOMMITTEE 

ON EMPLOYER EMPLOYEE RELATIONS, COMMITTEE ON EDUCATION 

AND THE WORKFORCE............................................................................................. 2

STATEMENT OF RANKING MEMBER ROBERT ANDREWS, SUBCOMMITTEE 

ON EMPLOYER EMPLOYEE RELATIONS, COMMITTEE ON EDUCATION 

AND THE WORKFORCE............................................................................................. 3

STATEMENT OF CHEYE CALVO, SENIOR POLICY SPECIALIST FOR THE 

EMPLOYMENT AND INSURANCE PROGRAM, NATIONAL CONFERENCE OF 

STATE LEGISLATURES, DENVER, CO.................................................................... 5

STATEMENT OF GARY AVARY, EMPLOYEE, BURLINGTON NORTHERN 

SANTA FE RAILROAD COMPANY, ALMA, NE...................................................... 7

STATEMENT OF ERIC GREENBERG, DIRECTOR OF MANAGEMENT 

STUDIES, AMERICAN MANAGEMENT ASSOCIATION, NEW YORK, NY........ 9

STATEMENT OF HAROLD P. COXSON, ESQ., PARTNER, OGLETREE, 

DEAKINS, NASH, SMOAK, AND STEWART, WASHINGTON, D.C., ON 

BEHALF OF GENETIC INFORMATION NONDISCRIMINATION IN 

EMPLOYMENT (GINE) COALITION....................................................................... 11

APPENDIX A - WRITTEN OPENING STATEMENT OF CHAIRMAN SAM 

JOHNSON, SUBCOMMITTEE ON EMPLOYER EMPLOYEE RELATIONS, 

COMMITTEE ON EDUCATION AND THE WORKFORCE ................................... 31

APPENDIX B - WRITTEN STATEMENT OF CHEYE CALVO, SENIOR POLICY 

SPECIALIST FOR THE EMPLOYMENT AND INSURANCE PROGRAM, 

NATIONAL CONFERENCE OF STATE LEGISLATURES, DENVER, CO........... 35

APPENDIX C - WRITTEN STATEMENT OF GARY AVARY, EMPLOYE, 

BURLINGTON NORTHERN SANTA FE RAILROAD COMPANY, ALMA, NE.. 49

APPENDIX D - WRITTEN STATEMENT OF ERIC GREENBERG, DIRECTOR OF 

MANGEMENT STUDIES, AMERICAN MANAGEMENT ASOCIATION, NEW 

YORK, NY ................................................................................................................... 57
iv

APPENDIX E - WRITTEN STATEMENT OF HAROLD P. COXSON, ESQ., 

PARTNER, OGLETREE, DEAKINS, NASH, SMOAK, AND STEWART, ON 

BEHALF OF GENETIC INFORMATION NONDISCRIMINATION IN 

EMPLOYMENT (GINE) COALITION....................................................................... 67

APPENDIX F – SUBMITTED FOR THE RECORD, STATEMENT OF RONALD 

WEICH, LEGISLATIVE CONSULTANT, AMERICAN CIVIL LIBERTIES UNION, 

WASHINGTON, D.C................................................................................................. 133

APPENDIX G – SUBMITTED FOR THE RECORD, STATEMENT OF LPA, 

WASHINGTON, D.C................................................................................................. 141

APPENDIX H – SUBMITTED FOR THE RECORD, LETTER TO CHAIRMAN 

JOHN BOEHNER, COMMITTEE ON EDUCATION AND THE WORKFORCE, 

FROM JEFFREY MORELAND, EXECUTIVE VICE PRESIDENT LAW AND 

CHIEF OF STAFF, BURLINGTON NORTHERN AND SANTA FE RAILWAY 

COMPANY (BNSF), FORT WORTH, TX, MAY 7, 2001 ....................................... 151

Table of Indexes.......................................................................................................... 154
1

GENETIC NONDISCRIMINATION: 

 IMPLICATIONS FOR EMPLOYERS AND EMPLOYEES 

____________________

Tuesday, July 24, 2001 

Subcommittee on Employer-Employee Relations 

Committee on Education and the Workforce 

U.S. House of Representatives 

Washington, D.C. 

 The Subcommittee met, pursuant to call, at 2:00 p.m., in Room 2175, Rayburn 

House Office Building, Hon. Sam Johnson, Chairman of the Subcommittee, presiding. 

 Present: Representatives Johnson, Andrews, Fletcher, Hoekstra, Tiberi, Payne, 

Kildee, Rivers, McCarthy and Tierney. 

 Also Present: Representative Osborne. 

 Staff Present: Kristin Fitzgerald, Professional Staff Member; David Connolly, Jr., 

Professional Staff Member; Dave Thomas, Legislative Assistant; Paula Nowakowski, 

Staff Director; Peter Gunas, Director of Workforce Policy; Jo-Marie St. Martin, General 

Counsel; Heather Valentine, Press Secretary; Scott Galupo, Communications Specialist; 

Patrick Lyden, Professional Staff Member; Deborah L. Samantar, Committee 

Clerk/Intern Coordinator; Cheryl Johnson, Minority Counsel; Peter Rutledge, Minority 

Senior Legislative Associate/Labor; and Brian Compagnone, Minority Staff 

Assistant/Labor.
2

Chairman Johnson. The Subcommittee on Employer-Employee Relations will come to 

order. We welcome Mr. Osborne from our Education Subcommittees who joins us today.

 We are meeting to hear testimony on genetic nondiscrimination and how it will 

impact employers and employees in the future. I am going to limit the opening 

statements to the Chairman and Ranking Minority Member. If other Members have 

statements they will be included in the hearing record. 

 With that, I ask unanimous consent for the record to remain open for 14 days to 

allow Members' statements and other extraneous material referenced during the hearing 

to be submitted in the official hearing. Without objection, so ordered. 

OPENING STATEMENT OF CHAIRMAN SAM JOHNSON, 

SUBCOMMITTEE ON EMPLOYER EMPLOYEE RELATIONS, 

COMMITTEE ON EDUCATION AND THE WORKFORCE 

Good afternoon to all of you. Thank you for being here. Welcome to our 

Ranking Member Mr. Andrews. 

 Today's hearing focuses on genetic nondiscrimination and its implications for 

employers and employees. As you all know, genetic nondiscrimination is an issue 

because of the potential for private genetic information to be used in inappropriate 

circumstances. Often cited examples include those in which knowledge of a specific 

disease, cancer, for example, in an individual's family history would be used to 

discriminate against the individual in hiring. 

 With that said, let me make it clear that the Members of this Subcommittee are 

strongly opposed to genetic discrimination. Employment decisions should always be 

based on a potential employee's qualifications and the ability to do the job, not on factors, 

genetic or otherwise, that have no bearing on job performance. 

 Last year researchers at the National Institutes of Health announced that they had 

successfully completed a rough map of the human genome. This made possible a whole 

new universe of scientific discovery; one that we hope will contribute to the prevention 

and cure of human disease. The announcement also spurred a public policy debate about 

genetic information and what specific protection should be accorded to this new universe 

of information. Several existing Federal laws govern the privacy and use of genetic 

information and the protection of discrimination because of genetic factors. In addition, 

more than half of the States in the United States have enacted laws that further restrict the 

use of genetic information in health insurance underwriting and employment decisions. 

 This Subcommittee has jurisdiction over both the employer-provided health 

insurance and employment aspects of the genetic nondiscrimination issue. This is our 

first hearing on the issue intended to look at current employment law, State laws that 

impact the issue, current employment practices, and implications of the issue for both
3

employers and employees. Today we hope to answer many questions on the issue 

including (1) the extent to which the current Americans with Disabilities Act and State 

law protect individuals with genetic predispositions toward illness from employment 

discrimination; (2) the extent to which genetic testing is practiced by employers; (3) 

legitimate uses of genetic screening and monitoring in the workplace to prevent damage 

from exposure to workplace hazards; (4) enforcement mechanisms and penalties, 

including additional liability which is most applicable to this situation; and (5) the 

unintended consequences of overly broad definitions of genetic information and testing. 

 This is the first in a series of hearings, and we expect to follow this hearing with 

others to address the health insurance and Federal legislative aspects of genetic 

discrimination. I look forward to working my colleagues on the Subcommittee to address 

these issues. 

WRITTEN OPENING STATEMENT OF CHAIRMAN SAM JOHNSON, 

SUBCOMMITTEE ON EMPLOYER EMPLOYEE RELATIONS, COMMITTEE ON 

EDUCATION AND THE WORKFORCE – SEE APPENDIX A 

Chairman Johnson. Right now I would like to acknowledge my colleague, Mr. 

Andrews, for his opening statement, and then we will look forward to welcoming our 

witnesses and their testimony. 

Mr. Andrews. 

STATEMENT OF RANKING MEMBER ROBERT ANDREWS, 

SUBCOMMITTEE ON EMPLOYER EMPLOYEE RELATIONS, 

COMMITTEE ON EDUCATION AND THE WORKFORCE 

I thank the Chairman. I thank my colleagues. I commend the Chairman for his 

continued good stewardship of this Committee in leading us to examine important issues 

of the day and always doing so in a fair and evenhanded way. I appreciate his 

cooperation, and I look forward to hearing what our witnesses will say. 

 We are living in a time of such dramatic change that it is difficult to keep up with 

it. I am privileged to be the father of an 8-year-old and a 6-year-old, and I really believe 

that during their lifetimes, when they are in a position to become parents, that they are 

going to be able to receive a genetic map of their children probably before the children 

are born, and be able to embark on a course of care that will dramatically reduce or even 

eliminate the prospect of many conditions and serious diseases that have plagued us as 

human beings throughout human history. It is an astonishing set of possibilities. It is an 

exhilarating set of possibilities. 

With every set of possibilities comes a new set of risks, and this afternoon we are 

going to be asking some questions that did not even exist when I was privileged to come 
4

to Congress 11 years ago. Frankly, it wasn't very relevant to think about an employer or 

an insurer getting access to genetic information about people 11 years ago because it 

wouldn't really tell them very much. It is going to become exceedingly relevant. In some 

cases it has already become exceedingly relevant. And I think we start these hearings 

from a point of consensus that Chairman Johnson stated a few minutes ago, and that is, in 

this society, and in this economy, how far you go in your chosen profession should be a 

function of your ability and your desire, not a function of your race, your gender, or some 

other immutable characteristic about your person. 

 Your genetic structure is obviously the most immutable characteristic about your 

person. A few years ago in this Congress, we had a debate about whether or not 

insurance companies should be able to deny health insurance based upon a preexisting 

condition. Well, now the debate has taken a dramatic leap because the debate is about 

whether insurance companies should be able to deny coverage based upon the probability 

of a preexisting condition, not the manifestation of one. We have had discussions over 

the years about whether certain personal characteristics should be protected under the 

employment discrimination laws, obesity, alcoholism, and various other conditions. 

Well, we are now going to have a debate about whether the probability of these 

conditions manifesting themselves can give rise to any form of employment 

discrimination. 

 What is refreshing about this debate is that it is so early in the game that the usual 

ideological divisions have not yet formed, because not only do we not know how we feel 

about the answers, we are not sure we even know all the questions. I think that this 

afternoon is an excellent starting point for us to begin to formulate those questions. I 

start from the principle that if my grandchildren, someday are able to be protected against 

the ravages of diseases because of knowledge of their genetic structure, I also want to be 

sure that the law protects them against limitation of their personal opportunities based 

upon that very same genetic structure. I want their future to be based upon their intellect, 

their work ethic, their values, and not upon their DNA. 

 I think that's an excellent place for us to start. I look forward to hearing from the 

witnesses and thank the Chairman for calling this hearing. 

Chairman Johnson. Thank you, Mr. Andrews. 

It is now my pleasure to introduce our panel of witnesses. The first witness on the 

panel is Mr. Cheye Calvo, Senior Policy Specialist for the Employment and Insurance 

Program, National Conference of State Legislatures. I used to belong to that 

organization. Thank you for being here.

 I am going to yield now to my colleague and friend from Nebraska Mr. Osborne, 

who will introduce our second witness. 

Mr. Osborne. Thank you, Mr. Chairman. 

 It is my pleasure to introduce Mr. Gary Avary, accompanied by his wife Janice, 

from Alma, Nebraska, which is in my District. Gary has worked for Burlington Railroad 

for 27 years. Janice works as a nurse. We are very pleased that they would take time to 
5

come all the way to Washington to testify at this hearing. 

Chairman Johnson. Thank you, Mr. Osborne. 

Mr. Osborne. Thank you, Mr. Chairman. 

Chairman Johnson. We appreciate you being here as well. 

 Following Mr. Avary will be Mr. Eric Greenberg, Director of Management 

Studies for the American Management Association. And our final witness for today will 

be Mr. Harold Coxson, Partner at the law firm of Ogletree, Deakins, Nash, Smoak, and 

Stewart. He is testifying on behalf of the Genetic Information Nondiscrimination in 

Employment (GINE) Coalition. That's a mouthful, isn't it? 

 Let me remind the witnesses that under our Committee rules, they must limit their 

oral statements to 5 minutes. We wish you would observe that. Your entire written 

statement will appear in the record. The lights in front of you are green, and will turn 

yellow at 1 minute, and red when 5 minutes is up. 

Mr. Calvo, you may begin your testimony now.

STATEMENT OF CHEYE CALVO, SENIOR POLICY SPECIALIST 

FOR THE EMPLOYMENT AND INSURANCE PROGRAM, 

NATIONAL CONFERENCE OF STATE LEGISLATURES, DENVER, 

CO

Chairman Johnson and Members of the Subcommittee, it is a pleasure to be here. 

I am Cheye Calvo, an employment and insurance policy specialist with the National 

Conference of State Legislatures. NCSL is the bipartisan national organization 

representing the Nation's 7,424 State lawmakers and their staff from all 50 States, the 

commonwealths and the territories. We include active Members from many States as 

well as Members on this Subcommittee, including Speaker Pete Laney of Texas and 

Senate President Joe Schwarz of Michigan. 

 NCSL does not take positions on matters internal to the States and has not taken 

an official position on Federal proposals to address genetic information in the workplace. 

I am here today to share with you what the States are doing on this issue and frame the 

State legislatures debate for regulating the genetic information in the workplace. 

 Human genetic technologies may prove the defining scientific advancement of the 

21st century. Yet concern over misuse by employers, health insurers and others with 

financial interests in genetic information have led State legislators to act. States now 

have a decade of experience crafting public policy for genetic technology. In short, State 

lawmakers have learned that genetic policy is difficult, complex and in need of regular 

review to keep up with the ever-changing nature of the science. Still, State lawmakers 

have tackled these challenges to make genetics one of the most active State legislative
6

issues of the last 10 years. 

 States have attempted to guide genetic technologies, not to control them. In turn, 

State genetics protections are designed as preventive measures to guard against misuse 

before it becomes widespread and promote the use of genetic advances to extend, 

enhance and save lives. But State legislators also recognize they are working in 

uncharted territory by setting policy for technologies that are only beginning to take 

shape. Therefore, they foresee the need to regularly review State laws to account for the 

rapidly changing science and to guard against unintended consequences. 

 That said laws in 28 States, including six enacted this year, address the use of 

genetic information in the workplace. Forty-eight States also have State disability 

protections that, like the ADA, may apply. All of these laws center around two related 

but distinct issues: first, employers' use of genetic information; and, second, genetic 

testing and inquiries in the workplace. Key policy considerations include approaches to 

genetic protections, the scope of genetic protections, general exceptions and enforcement 

provisions.

 The central policy issue is whether genetic information is special and requires 

higher legal protections or whether it is simply another form of health information and 

should be treated the same. The answer to this question largely influences the policy 

approach. The ADA allows employers to condition job offers on the completion of 

medical exams and to conduct medical testing and inquiries of current employees that are 

job-related. Therefore, an inclusive approach to genetic employment policy, based on the 

ADA, permits some degree of genetic testing. Genetic-specific laws place greater 

restrictions on employers' use of genetic information and may include strict bans on the 

use of genetic testing by employers. 

 Twenty-six States have taken the exceptional approach to genetic information 

protections. Such laws may include adding genetic information to the list of other 

unlawful employment criteria, such as race or gender, or establishing entirely new bodies 

of law. 

 An inclusive approach may incorporate genetic testing standards either implicitly 

or explicitly into current workplace disabilities protections, as has been done in Michigan 

and Illinois. Many also advocate that policymakers bolster disability protections or 

establish broader measures based on future or current health status. California and 

Minnesota to some degree have moved in this direction. 

 The second principle consideration relates to the scope of genetic protections.

Scientists fail to recognize an absolute delineation between genetic and other health 

information. Therefore, laws must clearly define the realm of protections. All State 

genetic laws protect the results of genetic tests, but many extend to other elements, such 

as information about genetic testing or services, the test results of family members, 

family history, and even inherited characteristics. Nine State laws exclusively cover 

predictive genetic information, while others extend to diagnostic tests, or genetic testing 

of any kind. 
7

Regarding general exceptions, most State laws establish instances where genetic 

protections do not apply. The most common relate to employees that, due to a medical 

condition, are unable to perform essential job functions. Others allow exclusions if 

related to health or safety, to determine an employee's susceptibility to toxic exposure or 

to investigate a worker's compensation claim. 

 Finally, most States enforce genetic employment laws through the same 

mechanisms that they assign for other unlawful employment practices. The primary 

method of enforcement is through private rights of action following an administrative 

review and fact-finding by the State agency or EEOC. Several States, however, provide 

for special specific civil liabilities, administrative fines and criminal penalties for 

violators of genetic protections. 

 In conclusion, State lawmakers have been proactive in shaping an initial layer of 

public policy to govern genetic information in the workplace, yet they recognize that they 

will be called upon to revisit State genetic laws in the years ahead as the technologies 

continue to advance. 

 Thank you for this opportunity. I am pleased to answer any questions. 

WRITTEN STATEMENT OF CHEYE CALVO, SENIOR POLICY SPECIALIST FOR 

THE EMPLOYMENT AND INSURANCE PROGRAM, NATIONAL CONFERENCE 

OF STATE LEGISLATURES, DENVER, CO – SEE APPENDIX B 

Chairman Johnson. Thank you. We appreciate your testimony. 

Mr. Avary, you may begin your testimony. Thank you. 

STATEMENT OF GARY AVARY, EMPLOYEE, BURLINGTON 

NORTHERN SANTA FE RAILROAD COMPANY, ALMA, NE 

 Good afternoon. Thank you for inviting me to testify at this Subcommittee 

hearing. My name is Gary Avary, and this is my wife Janice Avary. I am from Alma, 

Nebraska, population 1,200. I am 45 years old and have been married for 28 years. 

Janice and I have three daughters and one grandson. I have worked for Burlington 

Northern Santa Fe for 27 years in the track and maintenance department. And I am a 27-

year member of the Brotherhood of Maintenance of Way Employees union. 

 In September 2000, after working on several derailments over a short period of 

time, I started having pain and numbness in my right hand, specifically in the fingertips.

This made it very difficult to do many aspects of my job safely, since derailment repairs 

require continuous hours of using high-impact vibrating tools. On September 13, I saw a 

hand-shoulder-arm specialist and had extensive tests done. I was diagnosed with carpal 

tunnel syndrome. This is a swelling and a scarring of the tunnel in the wrist that carries
8

the nerve to the hand. This CTS is caused by extreme temperature changes and 

continuous repetitive activity. About a week later the railroad authorized surgery, and on 

September 28 I had laparoscopic repair done. Three weeks later I was back to work with 

100 percent use of my hand. 

 On October 24, the railroad medical department requested all of my medical 

records pertaining to my CTS exam and surgery to further evaluate workplace 

responsibility. During this time my medical insurance paid for the surgery, and the 

BNSF paid all expenses not covered by insurance plans. In December I received a 

registered letter from the company notifying me of a required mandatory medical exam, 

which would include X-ray, nerve test and laboratory tests. 

 When my wife and I found out from a coworker that as part of the test the lab 

took seven vials of blood, we started questioning. My wife is a registered nurse. She 

started making phone calls to find out what these tests were and was told accidentally that 

a genetic test would be included. An appointment coordinator, a secretary and the chief 

medical officer of BNSF told my wife that this exam was mandatory, according to a 

corporate internal rule 26-3, regarding mandatory medical exams. By not going to this 

exam I would be considered an insubordinate employee and fired. 

 My wife contacted a FELA attorney, who represents the Brotherhood of 

Maintenance of Way union members, to see if this was legal. It was not. Then we 

contacted the EEOC for job protection for me. I am more fortunate than most people in 

the workplace because I had a union to support and protect and guide me through this. 

 I didn't go to the company-required doctor's appointment on January 25, 2001, so, 

in turn, the railroad notified me by registered letter that my behavior was under 

disciplinary investigation and set a date for the hearing on this matter. If you work for 

Burlington Northern Santa Fe, you know this means that you will be fired. After 

attempts by the union to cancel this investigation, the railroad changed the date, but did 

not cancel the hearing until the EEOC and a Federal judge ordered them to do so. I still 

work for Burlington Northern Santa Fe under the protection of EEOC Whistle-Blowers 

Act.

 Since this began, my wife and I have been doing extensive research into the issue 

of genetic discrimination. We have talked to individuals from all over the U.S. who have 

lost their jobs and/or insurance coverage because of actual or potential diseases. 

 We are strong supporters of H.R. 602 and S. 318 introduced by Congresswoman 

Louise Slaughter and Senator Tom Daschle respectively. They have been trying to get 

genetic discrimination protection passed for 5 years. This type of discrimination has been 

happening all along, but no one wanted to believe it. A law that protects all Federal 

employees from this type of testing and discrimination was passed during the Clinton 

administration. 

 I think it is time that all Americans are protected from this type of mandatory 

testing and discrimination. What happened to me should not happen to anyone, 

especially in the United States. It is a direct infringement on our fundamental rights to be 

who we are. No one can help how we are put together. Only God knows that. The
9

employer, the insurance company or anyone else has no business with that knowledge.

That information should be shared only if you voluntarily request the testing. Then it can 

be used to your benefit. It should not be used against you and your family for hiring and 

firing practices or acceptance and/or denial into insurance programs. 

 Please help us get strict Federal laws passed so that this type of testing and 

discrimination can't happen to anyone else in the future. Thank you. 

WRITTEN STATEMENT OF GARY AVARY, EMPLOYE, BURLINGTON 

NORTHERN SANTA FE RAILROAD COMPANY, ALMA, NE – SEE APPENDIX C 

Chairman Johnson. Thank you, sir. 

Mr. Greenberg, you may begin your testimony. 

STATEMENT OF ERIC GREENBERG, DIRECTOR OF 

MANAGEMENT STUDIES, AMERICAN MANAGEMENT 

ASSOCIATION, NEW YORK, NY 

Thank you, Mr. Chairman. The American Management Association and its Board 

of Trustees appreciate this opportunity to share with the Subcommittee the results of our 

research into workplace medical testing in general, and genetic in particular. The AMA 

is not a trade association, and our charter prohibits us from lobbying for legislation, but 

as a part of our core mission of management development and training, we perform 

surveys on a variety of management issues, establishing benchmarks and assisting the 

management community in policy development and implementation. 

 The AMA launched its first medically related survey in 1987. Over the years we 

have revised and expanded the questionnaire, most recently in 1997, when for the first 

time we asked about genetic testing. In brief, what we found that year and in subsequent 

years was that genetic testing is rare in corporate America, and that it is not well 

understood by the human resources managers who complete our annual questionnaire. 

And I do want to emphasize that it is human resources managers, not medical officers or 

risk management officers, who fill out and return our questionnaire. 

 We have found a great deal of testing for illegal substances, somewhat lesser 

testing for fitness for duty, and practically no testing for inheritable diseases. Among the 

few companies that perform such testing, an even smaller number say they use the test 

results in determining whether to hire or not to hire employees, or to assign or dismiss 

current employees. 

 Specifically about genetic testing, we listed that phrase, "genetic testing," among 

10 forms of medical testing in our 1997 questionnaire, and when the results came back 
10

from 906 AMA member and client organizations, 52 companies, or 5.6 percent of those 

surveyed, had checked the box that indicated that they performed genetic testing. We had 

no particular reason to doubt that figure. The only previous survey of which we knew, 

performed in 1989 by the Office of Technology Assessment on a much smaller scale, 

also found about 5 percent performing genetic testing, but because we had no baseline 

data from previous years, we did not make our 1997 finding public. 

 In 1998, we found an almost identical share of respondents, 5.2 percent or 56 

companies out of that year's sample, indicating that they performed genetic testing. 

Again, there was no particular reason to doubt the finding, but we were and are aware 

that this is a particularly sensitive issue, and we wanted to be sure we were right before 

we publicly released the finding, and so we put our researchers on the phone to every 

human resources manager we could contact who had indicated to us that their companies 

performed genetic testing. We reached 44 of them and found that 80 percent of them did 

not perform genetic testing in any way, shape or form. 

 Under follow-up questioning, many HR managers told us that they considered any 

blood tests to be a genetic test. Others thought the testing for the presence of a disease, as 

opposed to a genetic susceptibility, was a genetic test. No more than nine companies, 

less than 1 percent of the 1,085 in that year's sample, did anything that might qualify as a 

genetic test. Unanimously, the companies that did genetic tests told us that they 

performed them for no other reason than concerns over workplace safety and health. 

 The next year, 1999, we took genetic testing out of that matrix, that list of 10 

forms of medical questioning, and from Barbara Fuller, the Human Genome Project of 

the National Institutes of Health, we received a definition of genetic testing, and we 

printed it in a separate box in our questionnaire. And under that definition we said 

according to this definition, do you perform genetic testing on job applicants or current 

employees? That year, 1999, first year in which we used this format, only 3 companies 

out of 1,005_ 4 checked yes. In the year 2000, 7 companies out of a much larger sample 

of 2,133; and this year, 2001, 2 companies out of 1,627 surveyed checked that box 

indicating that they performed genetic testing. 

 If genetic testing is being done to any appreciable degree among AMA 

membership and client base that together employ about one-fourth of the American work 

force, we haven't been able to find it. It must be admitted, however, that if companies 

were using such testing for nefarious reasons, they would be unlikely to report it in an 

AMA survey. 

 Genetic testing is another tool that modern technology has placed in our hands 

with a potential to be used for good or ill. It is easy to create nightmare scenarios in 

which people are judged not by their abilities, but instead by genetic propensities and 

susceptibilities, and indeed Hollywood has already done that. But human resource 

managers in major US firms have to deal with reality and not fantasy, and insofar as 

AMA's research can tell, the reality is as stated. Genetic testing is rare. Where done, it is 

performed with the health and safety of workers foremost in mind, and it is widely 

misunderstood. And for the record, Mr. Chairman I furnished to the Subcommittee a 

summary of AMA's 2001 Survey of Medical Testing. Thank you. 
11

WRITTEN STATEMENT OF ERIC GREENBERG, DIRECTOR OF MANGEMENT 

STUDIES, AMERICAN MANAGEMENT ASOCIATION, NEW YORK, NY – SEE 

APPENDIX D 

Chairman Johnson. Thank you. We will put that in the record. 

Our final witness is Mr. Coxson.

STATEMENT OF HAROLD P. COXSON, ESQ., PARTNER, 

OGLETREE, DEAKINS, NASH, SMOAK, AND STEWART, 

WASHINGTON, D.C., ON BEHALF OF GENETIC INFORMATION 

NONDISCRIMINATION IN EMPLOYMENT (GINE) COALITION 

Thank you, Mr. Chairman, Mr. Andrews and the Members of the Subcommittee. I 

represent the Genetic Information Nondiscrimination in Employment Coalition, the 

acronym GINE Coalition, which is why the long name to get to that acronym. We 

appreciate the opportunity to appear before this Subcommittee. 

 During the debate on the Americans with Disabilities Act, and many of you may 

remember and have participated, of course, in that debate, will you recall that Justin Dart 

and others from the disability community were heard to say, “we are the disabled.”

“You”, meaning others in society, “are the yet to be disabled.” 

 The subject of today's hearing underscores that message. According to 

geneticists, we each carry at least three defective genes. Two-thirds of us will die for 

reasons connected to our genetic makeup. 

 We are all, every human being, born or yet to be born, all of us, members of the 

protected class defined by genetic predisposition to disabling conditions, which, of 

course, makes us all potential litigants under legislation proposed or to be proposed in 

this Congress, whether or not we ever become actually disabled. Yet despite this 

unlimited class, no empirical evidence of widespread employment discrimination based 

on genetic information exists. 

 Despite 28 State laws, some on the books for over a decade, few, if any, charges 

or reported cases have been found. Despite the EEOC's 1995 interpretation that the 

Americans with Disabilities Act already prohibits discrimination against workers based 

on genetic makeup, there have been only a tiny handful of charges filed anywhere in the 

Nation with the EEOC, and where there was a highly publicized charge filed, in the 

Burlington Northern Santa Fe Railroad case, EEOC took swift and effective action under 

the Americans with Disabilities Act. 

 I know that case is cited as a reason why this legislation or why legislation is 

necessary. I think it also argues why perhaps the current law works with respect to 
12

genetic information discrimination. As contrasted with the mountains of evidence of 

discriminatory conduct, which preceded passage of Title VII of the Age Discrimination 

in Employment Act and the Americans with disabilities Act, there is no empirical 

evidence of widespread genetic discrimination. 

 The AMA and Society for Human Resource Management surveys indicate that 

rarely do employers require genetic tests or base employment decisions on genetic 

information. The reason: The predictive ability of genetic tests and other forms of 

genetic information has little practical workplace utility. There is no medical certainty 

that a condition will ever occur, or, if it does, when in the future, 5, 10, 15, 20 years from 

now, and it is simply too remote and currently too speculative on which to base 

employment decisions. 

 So, if there is no widespread testing or use of genetic information in the 

workplace, and there is no evidence of widespread employment discrimination, and the 

ADA and State laws already cover genetic discrimination, why make Congressional 

action or Congressional attention be necessary? Well, one answer is that the EEOC's 

interpretation has not been tested in the courts. Another answer is that remedies, 

according to proponents of legislation, should be created that are far greater for victims of 

genetic discrimination than for victims of any other employment discrimination. And 

also, testing requirements perhaps need to be strengthened under the Americans with 

Disabilities Act. But I think the best answer is to advance medical science, because there 

is, in fact, a very real fear on the part of employees that genetic discrimination will occur 

based on this information. 

 We have attached to our testimony copies of the GINE Coalitions principles, and I 

won't elaborate on all of them in my oral remarks today because I can see that my time is 

expiring. However, I think that it is safe to say that the GINE Coalition is supportive of a 

dialogue on this and is supportive of working with members of this Committee, and the 

Administration. And we note that the President has recently endorsed legislation that 

would be fair, reasonable and consistent with existing laws. 

 The final point I want to make regards consistency. We feel, for example, that 

there is no reason why those alleging discrimination based on genetic information should 

be entitled to greater rights or protections than individuals alleging employment 

discrimination on the basis of race, sex, religion and national origin or age. It makes no 

sense logically, legally or equitably for asymptomatic individuals not currently, and 

hopefully never, disabled to receive greater rights and be entitled to greater damages, 

such as unlimited punitive and compensatory damages, than those currently available for 

disabled individuals under the Americans with Disabilities Act. 

 I thank you for your attention, and I will be happy to respond to any questions. 

WRITTEN STATEMENT OF HAROLD P. COXSON, ESQ., PARTNER, OGLETREE, 

DEAKINS, NASH, SMOAK, AND STEWART, ON BEHALF OF GENETIC 

INFORMATION NONDISCRIMINATION IN EMPLOYMENT (GINE) COALITION 

SEE APPENDIX E 
13

Chairman Johnson. Thank you, sir. Thank you all for your testimony. 

Mr. Coxson, you just made the statement that there should be no greater 

entitlement to rights or protection than any individual alleging discrimination on the basis 

of race, sex, religion or national origin, and that, as with other forms of employment 

discrimination, allegations of genetic discrimination should be required to be the subject 

of investigation and other procedures of the EEOC. How do currently sponsored 

legislative proposals depart from this standard, or do they in any way? 

Mr. Coxson. They do depart, Mr. Chairman. They are a form of what we would call 

genetic “exceptionalism” because they provide for unlimited punitive and compensatory 

damages. As the Chairman knows, there are caps on damages under the Americans with 

Disabilities Act and other forms of discrimination against other protected classes under 

Title VII. 

 Also, the current legislation bypasses, or circumvents the administrative remedies 

and the administrative investigatory and mediation process of the EEOC. It provides for 

a direct access to court, although it provides an alternative route, going through EEOC. 

 Our coalition thinks that like all other forms of employment discrimination, the 

processes of the EEOC can be beneficial in screening and resolving cases at an early 

stage outside of court. Therefore, those processes should be availed for genetic 

discrimination as they are under the current interpretation of the EEOC of the Americans 

with Disabilities Act. 

Chairman Johnson. Now, there are protections against total lawyer involvement here if 

we use EEOC as a base; is that true? In other words, the main difficulty that I see here is 

broadening it to the point where we are going to have a lawyer protection act instead of 

protecting the rights of the individual if we are not careful. 

Mr. Coxson. Well, Mr. Chairman, the statistics from the EEOC indicate that with 

respect to all other forms of discrimination that come before that agency, in fiscal year 

2000, only 8.8 percent of all the charges filed were found to have reasonable cause, 58.3 

percent had no reasonable cause, and 20.5 percent involved administrative closure. Now, 

that is not to say that those individuals could not go into court and, in fact, receive a right 

to sue letter and go into court. But I think the statistics speak for themselves. 

 And by the way, that 8.8 percent number in fiscal year 2000 is an all-time high. If 

you look back over the past decade, those statistics have been in the 2 percent range; 2 

percent of merit, 2 percent reasonable cause of the charges filed. 

 If, however, you bypass that procedure and allow people to go directly to court, 

you are going to inundate the courts with these types of charges, some of them frivolous, 

some of them meritorious. But you can eliminate a lot of that logjam through the 

administrative process of the EEOC. 

Chairman Johnson. Thank you, sir. I appreciate those comments. I am going to cut my 

questioning short. 
14

Mr. Andrews. 

Mr. Andrews. Thank you, Mr. Chairman. 

 Let me first say to Mr. And Mrs. Avary, thank you for your attendance and 

testimony today. I am glad you are here, but I wish you were not. I wish that the 

circumstances that led up to you being here today had not occurred. I can only say I have 

great personal respect for what you have done. I think there is no greater gift we can give 

those three daughters and that grandchild of yours than showing them what integrity is 

and by being willing to see this through, I am sure at great personal cost. You have my 

respect, and I very much appreciate you being here to tell your story. I respect all the 

witnesses and appreciate all the testimony. 

 Mr. Coxson, I note you had the good sense to grow up in the area of the country 

that I represent, and I appreciate that. I want to ask you a couple of questions. 

 If I understand the coalition's position correctly, it is essentially that the existing 

complexion of employment discrimination laws get the job done, and we don't need some 

sort of exceptional prohibition on discrimination based upon genetic information; is that 

correct?

Mr. Coxson. It is correct to the extent that we think that genetic discrimination should 

not receive preferential treatment over other forms of discrimination. We think it should 

be covered. We support the current interpretation of the EEOC, which we believe covers 

genetic discrimination. 

Mr. Andrews. Would you favor adding discrimination based upon genetic 

characterization as a protected class under the EEOC Title VII? 

Mr. Coxson. That is an issue that we have not taken up in the Coalition, so I can't speak 

for the Coalition on that. I think that Title VII has, in fact, on rare occasions provided 

protections for genetic discrimination where the genetics are linked to a particular 

protected class. 

Mr. Andrews. Tai-Sachs and sickle cell anemia are really religious and racial. 

 Here is the question that I am really getting at. If you take a set of facts like Mr. 

Avary's, let's say that an employer discharges an employee because the employer believes 

the employee is likely to have a heart attack based upon the employee's genetic profile. Is 

that decision prohibited under Title VII as it stands today? Would that be illegal? 

Mr. Coxson. No. But it is protected under the Americans with Disabilities Act, the third 

prong of the definition of "disability" where someone is regarded as disabled. As Mr. 

Andrews knows, there are three prongs to the definition of a disability.

Mr. Andrews. Not to interrupt, I do understand. I have read that. 
15

Would the Coalition favor an amendment to the ADA that would adopt the 

definition of disability that the EEOC has put forth with respect to this question? 

Mr. Coxson. The Coalition would prefer an amendment to the ADA. We think that is 

the most straightforward route. 

Mr. Andrews. I think that is what I just said. So the answer is yes. 

Mr. Coxson. The answer is yes. 

Mr. Andrews. So the Coalition would support importing the EEOC's guideline 

definition into the statute under the ADA. 

Mr. Coxson. Because we feel it is already the EEOC's interpretation. So it is really 

codifying their existing interpretation. 

Mr. Andrews. The only other point that I would make is that I understand the data about 

very few claims being presented in this area. I think that is because the technology is still 

in its early stages. We aspire to the day when a genetic profile will be easily attained, but 

we are certainly not there yet. So if the scientists cannot provide a comprehensive 

genetic snapshot of a person, then obviously employers are not going to be using that 

snapshot for any purpose because they don't have it yet. So I think the fact that the record 

is scarce with respect to these claims being filed is more a reflection of the infant stages 

of the technology than it is the unlikelihood that the technology would be used in a way 

that might discriminate. Would you agree with that? 

Mr. Coxson. Well, Mr. Andrews, I would say that is also a reason why we should go 

cautiously in this area, because the technology is evolving so rapidly. Some States, for 

example, even though their laws have been on the books a decade, have had to revisit 

those laws already. They have had to revise them and amend them. And I would say that 

in this area, if there is going to be freestanding legislation, that freestanding legislation 

ought to be sunsetted, or there at least ought to be an opportunity for subsequent review. 

There may very well come a time, as you alluded to, when employers will want this 

information, and employees will want them to have the information for salutary purposes. 

 One of the concerns that we have with some of the existing proposals is that some 

of those salutary programs such as wellness programs that are employer-provided may be 

impeded as a result of legislation that would punish the flow of information and sanction 

the flow of information as opposed to discriminatory conduct. We think the focus should 

be on discriminatory conduct, not the flow of information. 

Mr. Andrews. I see my time is up. I would just note for the record, though, that proving 

discriminatory conduct is very often difficult to do, and I would want to steer clear of a 

situation where the burden would be on the employee to demonstrate that conduct if, in 

fact, the opportunity to exploit the information was broadly available. I think having the 

information alone is an issue. 

 I yield back. 
16

Chairman Johnson. Thank you, Mr. Andrews. 

 Mr. Calvo is there any one State that is further ahead than others on this issue? 

Mr. Calvo. It is really not a matter of who is further ahead; it is a matter of 

experimentation. There are a wide range of State laws, and some States were enacting 

laws back in 1992. Wisconsin was the first. Others have acted more recently. Michigan, 

for one, went through a very detailed, comprehensive, deliberative process a couple of 

years ago and took a different approach from others. But there is a series of models that 

are in place in the States, and because we haven't seen the use of the information by 

employers right now, legislatures are still grappling with what the issues are. But we 

haven't seen the experience by employers and going through the process to really identify 

how effectively the laws will work once that technology is more available. 

Chairman Johnson. It is evolving, isn't it? And you have made some statements that 

employers may have legitimate worry as the States begin to evolve what this legislation 

says. How have States protected employers' efforts to improve worker safety and be free 

from lawsuits that might be filed on a frivolous basis? 

Mr. Calvo. Like the ADA, most State disability laws do require an administrative 

review. They require that if you are going to file a claim, you must first file it with the 

State agency and go through an administrative process, have a fact-finding session, and 

only after that process can you go to court. That remains the case in most States. 

 For genetic legislation there is an administrative process, but the laws themselves 

also incorporate a number of limitations. Some of them are sweeping, but most of them 

do incorporate some degree of exceptions. One that has been discussed most often is a 

genetic disposition that may, in fact, limit someone's ability to do a job that could be 

some sort of toxic exposure. Health and safety exceptions have been worked into a 

number of laws as well. 

 One of the major distinctions is in defining the explicit information you are 

protecting. All States protect predictive genetic information derived from predictive 

genetic tests. That is different than a diagnostic test that is used to identify whether or not 

someone has a current illness or condition. So that is probably the most common 

limitation as well. But some States, like I said, only address predictive genetic 

information, while some add in other components like family history. A few even go so 

far as to add inherited characteristics. 

And so there is a wide variety. But most State laws do have some limitation 

worked into it, and they all, like I said, do require some sort of administrative process 

before going directly to trial. 

Chairman Johnson. Thank you, sir. 

Mr. Tiberi, do you wish to question? 

Mr. Tiberi. Thank you, Mr. Chairman. 
17

My question was also for Mr. Calvo. I am a creature of the State legislature. In 

fact, the Senate President Dick Finan has been very active in NCSL. One of the things he 

said to me after I was elected to Congress last November was, remember you came from 

the State legislature. Don't forget that. And I have noticed that Congress sometimes 

tends to forget that there are State legislatures out there. 

 Referencing your testimony, you mentioned that several States have had 

unintended consequences from the legislation that they have passed dealing with this 

issue. Can you touch on a few of those? 

Mr. Calvo. I don't think in many cases we have seen unintended consequences yet. As 

the technology evolves over time, they are reviewing and reevaluating things that they 

have done. 

 Probably the most notable revision occurred this year. The State of Oregon, in 

1995, passed a law that identified the rights of ownership of genetic information and 

DNA samples as the property of the individual from whom it is taken. 

 And there has been over the 6-year period a great deal of debate over linking 

genetic information with an existing body of law, like property, when dealing not only 

with statutory law but also common law, is in fact the right approach. This year, along 

with a number of other reforms, Oregon decided that that wasn't the best approach and 

actually repealed that law. The State decided there were other ways to reach the same 

protections.

 I think one of the major issues here is we really don't know what this technology 

is going to do. All we have in front of us right now are a handful of single genetic 

markers that are linked to disease, but most disease isn't a single gene. It is a 

combination of 10, 20, 30 genes and environmental factors. And we are just scratching 

the surface as to exactly what information this technology is going to ultimately reveal. 

So I think State legislators have been cautious and don't want to pass laws that are 

going to prevent potential benefits for the technology. They obviously want to resolve 

concerns, but prevent misuse. They want to make sure that if there are legitimate uses for 

this technology, that ultimately those technologies are put into place. Quite frankly, we 

would like to think that this technology will be available to actually prevent what might 

be otherwise unavoidable exposures and injuries in the workplace. 

Mr. Tiberi. I have just one follow-up question, Mr. Chairman. If you were to give us a 

piece of advice as to how to proceed based upon your knowledge in your job and what 

you have seen in other States, what would the one key piece of advice be? 

Mr. Calvo. Twenty-eight states have laws on the books that address these issues, and I 

think there is rich policy experience there. So I would encourage you to just look at what 

the States have done, and then reach your own conclusions. 

Chairman Johnson. Thank you. We appreciate those answers. 
18

Mrs. McCarthy, would you care to question? 

Mrs. McCarthy. Yes. Thank you, Mr. Chairman, and thank you for holding this 

hearing.

Mr. Avary, I am curious. In your testimony you state that you found out by 

accident that your blood work was to be genetically tested. Did you ever find out why 

they were taking blood for genetic testing? 

Mr. Avary. Well, they told me they were looking into the business necessity of it. If I 

were predisposed to carpal tunnel syndrome, they would actually put a weight-restricted 

limit on me someday that I couldn't perform my job; then they would eliminate me. 

Mrs. McCarthy. Eliminate you? 

Mr. Avary. Oh, yeah. They would eliminate me. Fired. 

Mrs. McCarthy. One of the things that I am certainly curious about, and anyone can 

certainly try and answer my question. I am looking beyond what we are talking about 

here today. In the future with genetic testing, we will hopefully see many people take 

advantage of it. But going over all your papers one of the things I am concerned about is 

did you sign any kind of release to have genetic testing done on you? 

Mr. Avary. No, ma'am. I didn't get that far. I opted not to sign anything, and that is 

where we stood our ground. Several other people did sign a consent to go give blood, but 

we did not. 

Mrs. McCarthy. All right. This is what I think we are trying to determine; what kind of 

legislation we can pass to protect people. We certainly want to have people partake of 

genetic testing, and I think that is important. My concern is, especially since we are 

going to be doing the Patients' Bill of Rights either Thursday or Friday, is that any 

company that has health care insurance is going to start doing genetic testing. If 

somebody employs you, they will make you go through the genetic testing, and then are 

you going to be turned down by the insurance plan? I am looking at it that way. 

 I don't know if that really falls into the scope of what we are talking about today, 

but as a nurse, that to me is scary, because, as you said, each and every one of us has two 

or three defaults in our genetic makeup. I want research to hopefully find cures, not 

discriminate in hiring, and health care insurance. That is what we are trying to find out 

and prevent. Start now, maybe with limited language, but send a message that we are 

watching what is going on out there. 

 Would anyone like to comment? 

Mr. Coxson. Mrs. McCarthy, I would point out that I think the situation you described 

may be covered under HIPAA. I don't know for sure, but I think it may be already 

prohibited or dealt with under HIPAA. 
19

Mrs. McCarthy. We will look into it. 

Mr. Coxson. I am referring to health insurance, obviously not employment 

discrimination. 

Mr. Avary. I would like to add one more thing.

 When you talk about opening the doors for lawsuits, it was a terrible thing that 

we couldn't have stopped this earlier. But when you have a company that uses an internal 

rule against you, where they say they have the right to compel testing without your 

consent, where do we stand? We stand in intimidation and fear of a corporation. When 

you go against an internal rule, it will lead to disciplinary action. Whether it is 30 days, 

60 days, 90 days, whatever, they will hit you in the pocketbook. 

Mrs. McCarthy. I think that is also one of the concerns that we have here. I will 

certainly look to see if patients are protected on this.

From what I understand in reading your testimony, you had a union to back you 

up. There are an awful lot of jobs throughout this country that don't have unions to back 

you up and fight for you. Where is the little guy going to go? The little guy is going to 

sign those papers and not even know what his or her rights are. So that is something else 

that we have to look into. 

Mrs. Avary. That is why this was handled in that manner. The employees of that 

company had no idea when they were asked to go to this medical exam exactly what it 

entailed until they got to the doctor. That is where they may have signed a paper. As you 

know, when you go to the laboratory for any type of testing, you have to fill out 

paperwork giving permission that this information will be sent to your insurance 

company for payment. That is where these employees may have first signed for 

permission for them to have this blood work. But yet, in signing, it was probably not 

explicitly detailed that they were drawing seven vials of blood to genetically test. No, it 

was described as routine laboratory tests, which, to most people, are just common 

everyday testing. 

 What most people don't realize is that even routine testing requires some 

preparation for accurate test results. So when they were talking to me about the fact that 

it would be routine blood testing, I wondered why people weren’t told to fast or given 

specific instructions to follow 24 hours before the testing? So were they actually curious 

and really wanted to know the results of these tests, or did they have something else in 

mind? 

 So the employee knew nothing when they went. They just knew that they were 

following rules set down by their employer; go see this specialist, and we will determine 

from that whether it is a workplace injury or not. And not only do they go one time, they 

are sent five or six times until they finally get to this blood testing. 
20

Mrs. McCarthy. I thank you for that answer. Unfortunately, the majority of people are 

not married to nurses who know how to do the research, but we are working on that. 

Mr. Calvo. A number of States have also passed explicit laws that require stronger 

informed consent provisions for genetic testing versus other types of medical testing. 

One of the big issues out there is that genetic testing may have more profound and 

significant implications. Therefore, a number of States, including Massachusetts, which I 

believe is where some of the tests in the Burlington case were performed, does have 

explicit written consent requirements that may or may not apply in this particular 

instance. 

Chairman Johnson. Thank you, Mrs. McCarthy. 

Mr. Fletcher, you may inquire. 

Mr. Fletcher. Thank you, Mr. Chairman. I appreciate your holding this hearing.

Medicine and technology seems to move ahead of legislation in a lot of areas. 

Chairman Johnson. Are you going to add this to the Patients' Bill of Rights? 

Mr. Fletcher. Actually we had a portion of it in there. 

Chairman Johnson. I thought you might answer that way. 

Mr. Fletcher. Once we started looking at the issue and realizing how complex it was, 

we didn't want to make it any more complex than it is. We think it is important for us to 

hear this. Changes in technology, protecting workers, and the privacy rights they have is 

very important. 

We need to do it in a way that not only protects health, because there are some 

things that are predictive. We are already capable, for example, to do some things that are 

very important in colon cancer and breast cancer. And if there is a genetic test that 

proves very, very good on colon cancer, it is a disease that we can screen for, target and 

help prevent. So that is going to be very important to have. We do, however, need to 

strike a balance where we protect patients regarding discrimination, but we also need to 

protect them in screening to make sure we can help them both ways. 

 Let me direct this question to Mr. Coxson. I believe in the attachments to your 

testimony, you reference the terms "predictive" and "protective" genetic information. 

What is the significance of the term "predictive," and is the term "predictive genetic 

information" the most scientifically accurate definition we can use in legislating against 

discrimination? 

Mr. Coxson. Yes, I believe it is. At least it is the best-understood term in the scientific 

community. People understand what you are talking about when you say "predictive 

genetic information." When you say "protective genetic information," it is a catchall. 

What is protective genetic information? It is an open-ended term in a sense, and 

therefore we are concerned about its use in pending legislation. 
21

Mr. Fletcher. Okay. Mr. Avary, I was looking through some information that we have 

on this case, and it does seem that they were looking for something that probably would 

have no likelihood of occurring. I think somebody sold them a test, and they didn't know 

exactly what they were doing. 

 So let me ask you, was there any time that you were made aware of the fact that 

you may have some genetic disorder that you might need to know about that would help 

you in the future or anything? 

Mr. Avary. No. Part of the paperwork, including when they sent that to us, related to 

finding anything else wrong after extensive laboratory X-ray nerve conduction testing 

was done and the private physician would be given the results. So in other words, in 

return, I think they were going to find out if I was carrying the gene potential for colon 

cancer, and they would be nice enough to let my physician know that I might acquire that 

disease.

Mr. Fletcher. Do you know if they were going to do comprehensive genetic testing? It 

would absolutely cost a tremendous amount. It looks like they were going to test for some 

hereditary neuropathy, which may manifest as carpal tunnel syndrome usually at a much 

earlier age. Not that we are going to question how old you. 

Mr. Avary. I think anytime you take seven vials of blood, when that diagnostic lab in 

Massachusetts said they only needed two vials, I just don't understand it. We just haven't 

come to a clear-cut reason why so many vials of blood were needed. We had people go 

in and they gave five vials of blood, and they called them back in because they needed to 

get to that number seven. So instead of taking two, they took five more from one 

gentleman and they ended up with ten. 

 Now, these guys are scared. I mean this one guy was prepping for his carpal 

tunnel surgery and they needed to check his blood in case he was a bleeder. So as soon 

as they came with the needle to take his blood, he ran out of the hospital. He had to come 

back in the next day for the surgery. 

Mr. Fletcher. Let me ask you a question. You went through the EEOC procedures. Did 

that process provide you with protection from what the employer was doing? Were you 

protected against possible discrimination if they had uncovered something genetic that 

would have demonstrated a propensity towards the disease? 

Mr. Avary. I have to praise the EEOC for what they have done. It was just a broad 

gamut of trouble. 

Mr. Fletcher. My time is up. But if there were some changes to be under the EEOC that 

had to do with genetic discrimination how would we define it? What do you think would 

help cover the workers under this circumstance? 

Mr. Avary. The language could say no genetic testing, unless it was with the consent of 

the person. 
22

Mr. Fletcher. Thank you. 

Mr. Avary. Thank you. 

Chairman Johnson. Mr. Kildee. 

Mr. Kildee. Thank you, Mr. Chairman. 

Mr. Calvo, I spent 12 years in the Michigan legislature and was involved in your 

organization at that time. Many of our businesses are interstate or international in nature. 

We do have control over interstate commerce under Article I, Section 8 of the 

Constitution. 

Wouldn’t it be better to have a uniform Federal law, if that much of our business 

is interstate, than 50 States with different laws, particularly now? When the economy 

becomes tight, very often employees are transferred from one part of a company to 

another. Would it not be better to have a uniform law to address this issue? 

Mr. Calvo. As I mentioned in my opening remarks NCSL does not have an official 

position, so I have to decline to answer the question. We have mechanisms in place to 

take positions on Federal matters, and we have not done so in this instance. 

Mr. Kildee. When you do, would you let us know? 

Mr. Calvo. I am sure we will. 

Mr. Kildee. That might be very helpful to us. You might bring it up in the next meeting. 

I used to go to those meetings. 

Mr. Coxson. Mr. Kildee, may I interject a point, because I am also a member of the 

National Conference of State Legislatures' blue ribbon panel on human genetic 

technology, and I followed the Michigan law that was developed. In fact when I testified 

last year in the Senate, I held up the Michigan law, at least the process, as a model 

process.

 As you know, when the Michigan law was passed, it was passed unanimously, 

strictly bipartisan. That is what we hope to achieve here today. Speaking for our 

Coalition in the business community, we hope to be able to achieve a bipartisan dialogue 

in this area. 

Mr. Kildee. That is good. I do think that happens in Michigan from time to time. Not 

regularly. We didn't do that in redistricting.

You mentioned, Mr. Coxson that if we carried over the language of Title 7 of the 

EEOC to ADA that that might address the problem. Does that indicate that what Ms. 

Slaughter is seeking to achieve is something good to achieve? 

Mr. Coxson. Mr. Kildee, don't misunderstand me. I did not suggest that Title 7 should 

be amended. What I suggested was that perhaps the Americans with Disabilities Act
23

should be amended. 

Mr. Kildee. I suggest that perhaps the concept of Title 7 could be carried over from 

EEOC and the language used to amend the ADA. 

Mr. Coxson. I must make one point on that. 

 Mr. Andrews, I perhaps exceeded my authority a moment ago when I committed 

the Coalition or bound the Coalition to support an ADA amendment. I suspect they 

would, but I don't have the authority to commit them at this point. 

 With respect to Mrs. Slaughter, I want to commend Mrs. Slaughter, Mrs. Morella 

and others, who worked tirelessly on this issue in a number of sessions of Congress. They 

are to be commended for that. We think in principle she is right. We have perhaps 

problems with the wording and some of the provisions of her bill, such as unlimited 

punitive and compensatory damages, and direct access to court without exhaustion of 

remedies before the EEOC, and with some of the definitions that we think may result in 

unintended consequences. 

 And if I may, briefly, we feel under an interpretation of her bill that such 

normative behavior as visiting the sick and consoling the bereaved, which our traditions 

and social mores and laws should encourage, may in fact give the employer illicit 

knowledge that could then become the subject of litigation. We think that is wrong, and 

that she believes that is wrong too. We may be able to work on that, but that is the 

problem with broad definitions. 

Mr. Kildee. No law, let alone legislation offered here, is offered on Mount Sinai. This is 

Capitol Hill. 

 Let me ask Mr. Avary a question, and I do appreciate your testimony. Not 

everyone in America is guided, protected, or has the resources of a labor union behind 

him or her. Has it been helpful in your case to have a labor union that could give you 

some guidance and direction and protection? 

Mr. Avary. Yes, it has. It really has. You have another contact, another person to call, 

to lean on, who can guide you with a purpose like we are here today. If it weren’t for the 

Brotherhood of Maintenance of Way, a private individual out there without the union, 

would have nobody to turn to. You would have to have people listen to you individually.

I would say having the union is a luxury. 

Mr. Kildee. Thank you very much. Thank you, Mr. Chairman. 

Chairman Johnson. Thank you. Ms. Rivers. 

Ms. Rivers. Thank you, Mr. Chair. I apologize to the panel for not being here earlier. I 

was coming from another event. 
24

I have a number of questions, because in my other role in Congress on the Science 

Committee, I have had an opportunity to do a lot of research on this issue. As someone 

said earlier technology may not be as advanced as people think it is. 

 I think however, it is in fact much more advanced than people understand. And 

the question of whether or not six or seven vials of blood are taken really pales in face of 

the fact that as of each of you walk away from the table today, there is probably enough 

DNA on each of the cups that you have lifted to your lips, to perform the kind of 

diagnostic tests that we are talking about here. 

 So there are ways to do these kinds of tests without an employee having any idea 

that they are being done. It is no longer an issue of simply having blood taken. It can be 

a tissue thrown aside in the workplace, a half-eaten sandwich put away in the trash, it can 

be a glass that someone has sipped from. 

 I am very concerned particularly since there was an announcement made a couple 

of months ago that the largest security company in the country has just purchased the 

largest DNA laboratory. This was done because there is recognition, that employers’ 

interest in having information on their employees is so great that it is seen as a growth 

industry. So I hope as we think about this issue, we do it with a very clear understanding 

of where we are headed in terms of the usefulness of the information. 

 Mr. Coxson, you said that you believed that limitations on the use of this 

technology by employers could keep employees from doing things that could have a 

salutary effect on them. Where would you see that happening? Where would it not be 

wise to have a voluntary agreement for the flow of information? Give me an example in 

which voluntary wouldn't be enough. 

Mr. Coxson. Again, it relates to specific definitions in the existing legislation, which 

cause us concern. Whether or not such things as employer-provided wellness programs, 

which I would consider salutary, would in fact be prohibited or impaired or impeded as a 

result of legislation, the reason being the genetic information received through those 

types of programs, family medical histories, and things like that. These could be imputed 

to the employer for purposes of litigation. 

Ms. Rivers. That is why I said voluntary. 

Mr. Coxson. I think I would have to say that if we are talking about voluntary consent of 

an employee to release or reveal genetic information, we would be supportive of that. 

We think it should be with informed consent. 

Ms. Rivers. There are wellness programs in existence now and most employers, I have 

to assume the vast majority of employers, do not collect DNA or genetic information 

from those wellness programs. If they choose not to, do you read the law as saying the 

employers could not offer wellness programs if they don't collect that kind of 

information? 
25

Mr. Coxson. Well, the question is not whether they test, because some perhaps do and 

some don't, but most wellness programs have as baseline information relating to family. 

Ms. Rivers. This is information that the individual gives, right? 

Mr. Coxson. Included under the proposed legislation is the definition of predictive 

genetic information or protective genetic information, which could trigger the type of 

potential liability and certainly litigation that I think we want to avoid. 

Ms. Rivers. So if the employee goes into the company gym and sits down with the 

fitness expert, and the fitness expert asks if there is any heart disease in the family, or any 

diabetes, you would see that as triggering some sort of liability for the employer under 

the law? 

Mr. Coxson. Under the legislation. 

Ms. Rivers. Under the proposed law. 

Mr. Coxson. In fact, you hit on a very good point that illustrates the type of water-cooler 

conversations on the job or off the job, in which an employee reveals that there is a 

problem in his or her family with respect to a particular illness. If that conversation is 

imputed to the employer and gives the employer this, “illicit knowledge”, yes, I think that 

it could potentially trigger litigation and liability. 

Ms. Rivers. This could happen of course, if and only if the employer then does 

something that appears to be discriminatory after receiving the information. 

Mr. Coxson. That is exactly right. However, speaking as a management-side lawyer 

who has represented employers before juries in employment discrimination matters, it is 

very, very difficult. Once you get to a jury and you have an individual such as Mr. Avary 

and his lawyer sitting on the other side with obviously a very sympathetic story and one 

that everyone is sympathetic to, it is very difficult. Even if a decision had been made that 

was based on performance and not based on genetic information, it is very hard to 

convince the jury. Employers don't want to take that risk. So they will settle out of court 

at all cost in order to avoid the runaway jury awards. 

Ms. Rivers. Then why do employers try to get this genetic information? Why does this 

company feel it is such a growth market out there that they will purchase a lab? If you 

are saying that the decisions are performance based, why get genetic information, ever? 

Mr. Coxson. First of all, I am not convinced or I don't know whether the reason they 

purchased it is for use in employment decisions. It could be because the scientific 

research involved is expanding and therefore it is a good investment for that reason. I 

can't explain. 

 In the surveys carried out by the AMA and SHRM, employers don't generally 

require this information. I can’t explain the circumstances under which it is required.

For example, in the situation of Burlington Northern, I can't explain it. 
26

But there are exceptions, even in the pending legislation, with respect to safety 

and health monitoring under Federal and State laws and things such as that. So there are 

instances where employers not only would want this information for nondiscriminatory 

purposes, but also are required by law to monitor or collect this information under 

OSHA.

Ms. Rivers. Collect genetic information? 

Mr. Coxson. Well, for example, exposure to particular substances in the workplace that 

are regulated by OSHA. Some of these standards require employer monitoring. 

Ms. Rivers. For damage? 

Mr. Greenberg. Ms. Rivers, when we did our follow-up phone calls and interviews to 

human resources managers whose companies indicated in our questionnaire that they did 

genetic testing, we found a manufacturing company that used chemical coatings that had 

changed to a different kind of chemical coating. The company had some concerns as to 

whether or not there would be a reaction among workers dealing with this stuff. 

 They went to OSHA and voiced these concerns, and it was OSHA who 

recommended that this company do genetic testing on their employees. 

Ms. Rivers. Genetic testing for predisposition to a particular metal? 

Mr. Greenberg. To a particular set of chemicals, as I understood it. So there are, 

arguably, instances where this kind of information is taken with an eye solely towards the 

health and safety of the employee. 

Ms. Rivers. Thank you. 

Chairman Johnson. Your time has expired Ms. Rivers. 

 Mr. Payne. 

Mr. Payne. Thank you very much. As you know, I missed most of the testimony and 

was quickly looking over a memo regarding this. 

 I am a cosponsor of H.R. 602, legislation introduced by Mrs. Slaughter and Mrs. 

Morella to prohibit genetic discrimination with respect to employee health insurance 

under Title 1. 

 I do think we are getting into a dangerous area. I wonder how we were able to 

make it all these years as a Nation that has exceeded other countries in the world? We 

came into World War II without having ships and planes, and within a year we had the 

greatest fleets and the best flying planes. We had men and women working to defeat the 

Axis to prevent Europe from being overrun. I don't remember these kinds of genetic tests 

and X-rays and fingerprints during that time. 
27

First of all, I just think that it is a way to discriminate. In my opinion because the 

workplace is going to shrink, as we know it, a certain number of people simply are not 

going to be necessary. Just as we throw away diapers and cans and bottles today, we 

throw away society; so we throw away people. 

 We want to make sure we are perfectly right. As a matter of fact, we are talking 

about genetically altering foods, and I guess the next thing will be people, too. So I think 

it is overdone. I think that it is an intrusion. I think it is wrong. I think it is immoral, 

actually, and I will stand strongly against discrimination based on anything. 

 I think that employers should hire a person, or not, based on whether they can do 

the job; and then the person should take the physical. I think the physical should not be a 

discriminating part of employment. 

 Now, let me ask a question of the insurance people. If a person has had a 

mastectomy, does a company have a right to discriminate against hiring that person Mr. 

Coxson? 

Mr. Coxson. Actually, we don't represent the insurance industry, so I can't speak from 

the insurance perspective. But I believe that would be prohibited currently under the 

Americans with Disabilities Act. 

Mr. Payne. Someone was mentioning that OSHA feels it is necessary to do some of 

these tests. Was that you, Mr. Greenberg? 

Mr. Greenberg. Not for a minute would I suggest that this is a widespread practice at 

OSHA. This is a single instance that our researchers became familiar with when these 

calls were made in 1998. A company described its experience to us with a change of a 

chemical nature of the coating that they used in their manufacturing process, and were 

concerned about the effect that this new mixture might have on their employees. One 

action that OSHA recommended to address these concerns was to perform genetic testing 

to see whether or not there was some kind of propensity towards a bad reaction to these 

particular chemical mixtures. So not for a minute am I suggesting this is a widespread 

practice. This is an instance that we found out about in our research. 

Mr. Coxson. Mr. Payne, you raise a broader and a more profound point, I think, than 

OSHA. And that is, the very genetic information that is being censored today in this type 

of legislation, may very likely be information that a few years from now must be shared 

to help someone delay the onset of a disease or to avoid it entirely. 

 The science is evolving so quickly that I think if we act precipitously in 

legislation, we may find ourselves saying no, no, no in a few areas in which we don't 

want to prohibit disclosure of that information. We think you must disclose it because it 

is in an individual's interest to know, and the employer's interest at that time to know, 

what types of conditions will accelerate the onset of disease. I think we need to be 

careful for that reason. 

Mr. Calvo. Mr. Payne, you also mentioned one additional point I think is very 

important. You mention the post-offer physicals that are somewhat common in 
28

employment practice. I think it is important that the ADA does permit under certain 

circumstances, with conditions in place, unlimited medical testing and inquiries after you 

offer a job but before that person takes their job. So the ADA, in this one instance, 

doesn't allow employers to conduct genetic tests without any significant restrictions.

They cannot, according to the ADA, discriminate on the basis of that information; but 

they can conduct those tests, and that is an issue that many States have grappled with. 

Mr. Payne. My time has probably expired, but I think you mentioned, Mr. Coxson, that 

in the future it might even get worse. I think if there was a certain amount of security, or 

people felt confident in the employer, then there wouldn’t be this question of will I be 

discriminated against or not. 

But in this age of health care concerns about the cost of it, the lack of it, the 

HMOs trying to keep from paying bills, pushing people out of hospitals and “drive-by” 

hospital stays, do we have to pass a Federal law to allow a person to stay in the hospital 

up to 48 hours when they have delivered a child, and not be rolled out in 24 hours with 

bottles and tubes attached to them? There is no reluctance on the part of the average 

person to feel that the employer isn’t necessarily looking out for the employee 

but that the employer of course is concerned about liability and the cost of insurance. 

 I think that is where the skepticism comes in, and I think it is just past practices, 

past behavior, and the history of employment exploitation through the years that gives 

some of us gray-haired men and women a little trepidation at a new surge of 

discriminatory practice. 

 Thank you for the your generosity with the time, Mr. Chair. 

Chairman Johnson. Thank you, Mr. Payne. I have just a couple of comments. 

 Mr. Avary, we appreciate you being here. I understand the situation that you 

were put under. I am glad that the government rules that are in place helped you. I think 

that in the future we are going to have to look at this issue very closely. 

Mr. Coxson, answer just one more question, if you would. What is a reasonable 

expense incurred to defend a case of this nature, even if it is won, for the employer? 

Mr. Coxson. If it is an individual case, I think you are talking about, in legal defense 

fees, probably $20,000 or more if it goes into Federal court litigation. I think that despite 

the legal costs, because of the potential exposure to liability, you will find many 

employers, even if they believe that the charge is frivolous and not meritorious, will settle 

out of court for $25, 000 to $50,000. 

Chairman Johnson. What kind of impact would that have on a small business, or even 

an employee himself? 

Mr. Coxson. It is disruptive for any business, but for a small business it could be 

ruinous. But then so could a runaway jury award. 
29

Chairman Johnson. Bankrupt? 

Mr. Coxson. It could potentially bankrupt a small employer. Getting back to the point 

about conversations and inadvertent ways of discovering this information, Mr. Chairman, 

it is not uncommon for employees to share family problems with co-workers, supervisors, 

and business owners, or even to seek their assistance in times of trouble, especially in 

small business workplaces. And that is the type of thing that could be impeded, because 

the employer doesn't want to possess this information. 

 We tell our clients, you don't want this information because you can't do anything 

with it. It is too remote, and too speculative to make any present employment decisions 

with and can only get you in trouble. That is what we counsel our clients. 

Chairman Johnson. Thank you. Mr. Andrews? 

Mr. Andrews. Thank you, Mr. Chairman. 

Mr. Greenberg, to the extent of your confidentiality obligations to those whom 

you survey, we would be interested in hearing more about this one episode in which 

OSHA counseled the use of genetic testing.

Mr. Greenberg. We will go back to the notes that our interviewers made in 1998 and 

supply you with everything we have, so long as we can be assured of confidentiality. 

Mr. Andrews. Sure. I appreciate that. 

 If I may also echo something Mr. Kildee said about the importance of a uniform 

standard. It is my understanding that in Mr. Avary's case, his test results would have 

been sent to a lab in Massachusetts for analysis, and Massachusetts has a statute that 

requires consent by the person being tested. But there wasn't any effort by the 

Massachusetts lab to ask for consent, because Mr. Avary is not a citizen of 

Massachusetts. It is a query whether or not they are required to do that, because he is not 

a citizen of Massachusetts. So I think it is important to have a uniform national standard 

in this regard. 

Mr. Chairman, I yield back. 

Chairman Johnson. Thank you, sir. 

 I want to thank the witnesses for their valuable time and testimony and all 

Members for their participation. There being no further business, this Subcommittee 

stands adjourned. 

Whereupon, at 3:34 p.m., the Subcommittee was adjourned. 
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Table of Indexes 

Chairman Johnson, 2, 4, 5, 7, 9, 11, 13, 16, 17, 20, 22, 23, 26, 28, 29 

Mr. Andrews, 14, 15, 29 

Mr. Avary, 7, 18, 19, 21, 22, 23 

Mr. Calvo, 5, 16, 17, 20, 22, 27 

Mr. Coxson, 13, 14, 15, 18, 19, 20, 22, 23, 24, 25, 26, 27, 28, 29 

Mr. Fletcher, 20, 21, 22 

Mr. Greenberg, 26, 27, 29 

Mr. Kildee, 22, 23 

Mr. Osborne, 4, 5 

Mr. Payne, 26, 27, 28 

Mr. Tiberi, 16, 17 

Mrs. McCarthy, 18, 19, 20 

Ms. Rivers, 23, 24, 25, 26