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94-940 PDF 2004

GENETIC NONDISCRIMINATION: EXAMINING 

THE IMPLICATIONS FOR 

WORKERS AND EMPLOYERS

HEARING

BEFORE THE

SUBCOMMITTEE ON EMPLOYER-EMPLOYEE 

RELATIONS

OF THE

COMMITTEE ON EDUCATION 

AND THE WORKFORCE 

U.S. HOUSE OF REPRESENTATIVES

ONE HUNDRED EIGHTH CONGRESS

SECOND SESSION

July 22, 2004

Serial No. 108-71

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

(

Available via the World Wide Web: http://www.access.gpo.gov/congress/house 

or 

Committee address: http://edworkforce.house.gov 

(II)

COMMITTEE ON EDUCATION AND THE WORKFORCE 

JOHN A. BOEHNER, Ohio, Chairman

Thomas E. Petri, Wisconsin, Vice Chairman 

Cass Ballenger, North Carolina 

Peter Hoekstra, Michigan 

Howard P. ‘‘Buck’’ McKeon, California 

Michael N. Castle, Delaware 

Sam Johnson, Texas 

James C. Greenwood, Pennsylvania 

Charlie Norwood, Georgia 

Fred Upton, Michigan 

Vernon J. Ehlers, Michigan 

Jim DeMint, South Carolina 

Johnny Isakson, Georgia 

Judy Biggert, Illinois 

Todd Russell Platts, Pennsylvania 

Patrick J. Tiberi, Ohio 

Ric Keller, Florida 

Tom Osborne, Nebraska 

Joe Wilson, South Carolina 

Tom Cole, Oklahoma 

Jon C. Porter, Nevada 

John Kline, Minnesota 

John R. Carter, Texas 

Marilyn N. Musgrave, Colorado 

Marsha Blackburn, Tennessee 

Phil Gingrey, Georgia 

Max Burns, Georgia 

George Miller, California 

Dale E. Kildee, Michigan 

Major R. Owens, New York 

Donald M. Payne, New Jersey 

Robert E. Andrews, New Jersey 

Lynn C. Woolsey, California 

Rube ́n Hinojosa, Texas 

Carolyn McCarthy, New York 

John F. Tierney, Massachusetts 

Ron Kind, Wisconsin 

Dennis J. Kucinich, Ohio 

David Wu, Oregon 

Rush D. Holt, New Jersey 

Susan A. Davis, California 

Betty McCollum, Minnesota 

Danny K. Davis, Illinois 

Ed Case, Hawaii 

Rau ́l M. Grijalva, Arizona 

Denise L. Majette, Georgia 

Chris Van Hollen, Maryland 

Tim Ryan, Ohio 

Timothy H. Bishop, New York

Paula Nowakowski, Staff Director 

John Lawrence, Minority Staff Director 

SUBCOMMITTEE ON EMPLOYER–EMPLOYEE RELATIONS 

SAM JOHNSON, Texas, Chairman

Jim DeMint, South Carolina, Vice Chairman 

John A. Boehner, Ohio 

Cass Ballenger, North Carolina 

Howard P. ‘‘Buck’’ McKeon, California 

Todd Russell Platts, Pennsylvania 

Patrick J. Tiberi, Ohio 

Joe Wilson, South Carolina 

Tom Cole, Oklahoma 

John Kline, Minnesota 

John R. Carter, Texas 

Marilyn N. Musgrave, Colorado 

Marsha Blackburn, Tennessee 

Robert E. Andrews, New Jersey 

Donald M. Payne, New Jersey 

Carolyn McCarthy, New York 

Dale E. Kildee, Michigan 

John F. Tierney, Massachusetts 

David Wu, Oregon 

Rush D. Holt, New Jersey 

Betty McCollum, Minnesota 

Ed Case, Hawaii 

Rau ́l M. Grijalva, Arizona 

George Miller, California, ex officio 

(III)

C O N T E N T S 

Page

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

Statement of Members: 

Andrews, Robert E., Ranking Member, Subcommittee on Employer-Employee Relations, Committee on Education and the Workforce ................ 3

Johnson, Hon. Sam, Chairman, Subcommittee on Employer-Employee Relations, Committee on Education and the Workforce ................................ 1

Prepared statement of ............................................................................... 2

Statement of Witnesses: 

Hudson, Dr. Kathy, Director, The Genetics and Public Policy Center, 

Johns Hopkins University, Washington, DC .............................................. 5

Prepared statement of ............................................................................... 8

Licata, Dr. Jane Massey, Partner, Licata & Tyrell P.C., Marlton, NJ ........ 34

Prepared statement of ............................................................................... 35

Lorber, Lawrence, Esq., Partner, Proskauer Rose LLP, Washington, DC, 

on behalf of the U.S. Chamber of Commerce .............................................. 37

Prepared statement of ............................................................................... 40

Letter answering follow-up questions ...................................................... 85

Wildsmith, Tom, Chairman, Genetic Testing Taskforce, American Academy of Actuaries, Washington, DC .............................................................. 11

Prepared statement of ............................................................................... 14

Additional materials supplied: 

Alpha–1 Association and Alpha–1 Foundation, statement submitted for 

the record ....................................................................................................... 67

American Academy of Family Physicians, statement submitted for the 

record ............................................................................................................. 69

American Academy of Pediatrics, statement submitted for the record ........ 65

American Association for the Advancement of Science, letter submitted 

for the record ................................................................................................. 68

American Cancer Society, statement submitted for the record .................... 84

American Osteopathic Association, statement submitted for the record ..... 83

American Psychiatric Association, statement submitted for the record ...... 83

American Society of Human Genetics, statement submitted for the 

record ............................................................................................................. 82

Association of Women’s Health, Obstetric and Neonatal Nurses, statement submitted for the record ..................................................................... 81

Catholic Health Association, statement submitted for the record ................ 94

CARES Foundation, Inc., letter submitted for the record ............................. 64

Coalition for Genetic Fairness, statement submitted for the record ............ 96

Digestive Disease National Coalition, statement submitted for the record 65

FORCE, statement submitted for the record ................................................. 81

Genetic Alliance, statement submitted for the record ................................... 69

Gingrich, Hon. Newt, Former Speaker, U.S. House of Representatives, 

statement submitted for the record ............................................................. 86

Gregg, Hon. Judd, a U.S. Senator from the State of New Hampshire, 

statement submitted for the record ............................................................. 61

Huntington’s Disease Society of America, statement submitted for the 

record ............................................................................................................. 94

National Breast Cancer Coalition, statement submitted for the record ...... 72

National Council on Disability, statement submitted for the record ........... 73

National Marfan Foundation, letter submitted for the record ..................... 68

National Workrights Institute, statement submitted for the record ............ 71

Ovarian Cancer National Alliance, statement submitted for the record ..... 93

Page

IV

Additional materials supplied—Continued

Slaughter, Hon. Louise McIntosh, a Representative in Congress from 

the State of New York, statement submitted for the record ..................... 87

Society for Women’s Health Research, letter submitted for the record ....... 62

The Arc of the United States, statement submitted for the record .............. 66

UJA–Federation of New York, Women’s Public Policy Task Force, statement submitted for the record ..................................................................... 62

United Cerebral Palsy, statement submitted for the record ......................... 64

United Spinal Association, statement submitted for the record ................... 95

(1)

GENETIC NON-DISCRIMINATION: EXAMINING 

THE IMPLICATIONS FOR WORKERS AND 

EMPLOYERS 

Thursday, July 22, 2004

U.S. House of Representatives 

Subcommittee on Employer-Employee Relations 

Committee on Education and the Workforce 

Washington, DC 

The Subcommittee met, pursuant to notice, at 10:30 a.m., in 

room 2181, Rayburn House Office Building, Hon. Sam Johnson 

[Chairman of the Subcommittee] presiding. 

Present: Representatives Johnson, Wilson, Kline, Carter, Andrews, Payne, McCarthy, Kildee, Holt, and Grijalva. 

Staff present: Kevin Frank, Professional Staff Member; Aron 

Griffin, Professional Staff Member; Richard Hoar, Staff Assistant; 

Donald McIntosh, Staff Assistant; Jim Paretti, Workforce Policy 

Counsel; Deborah L. Samantar, Committee Clerk/Intern Coordinator; Jo-Marie St. Martin, General Counsel; Jody Calemine, Minority Counsel, Employer-Employee Relations; Margo Hennigan, 

Minority Legislative Assistant/Labor; and Peter Rutledge, Minority 

Senior Legislative Associate/Labor. 

Chairman JOHNSON. Good morning. A quorum being present, the 

Subcommittee on Employer and Employee Relations of the Committee on Education and the Workforce will come to order. We are 

holding this hearing today to hear testimony on Genetic Non-Discrimination: Examining the Implications for Workers and Employers. Under Committee Rule 12(b), opening statements are limited 

to the Chairman and the Ranking Minority Member of the Subcommittee. Therefore, if other members have statements, they will 

be included in the hearing record. 

With that, I ask unanimous consent for the hearing record to remain open for 14 days to allow members’ statements and other extraneous material referenced during the hearing to be submitted in 

the official hearing record. Without objection, so ordered. 

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

Good morning. I want to welcome you all, and especially Mr. Andrews, our Ranking Member, and my other colleagues. When the 

NIH and Department of Energy announced they had completed a 

2

rough map of the human genome in 2000, it opened the door to a 

new era of research. The dream of detecting diseases early on, accurately treating them with minimal side effects, if not preventing 

them entirely, seemed within reach. And indeed, we move closer to 

that reality every day. 

With this unprecedented potential for discovery, however, comes 

an equally weighty challenge for public policymakers. The possibility of unjust use of genetic information about individuals and 

their families must be addressed. 

Discrimination against a potential employee because they may 

get cancer someday is not acceptable. Employment decisions should 

be based on an individual’s qualifications and ability to perform a 

job, not on the basis of factors, genetic or otherwise, that have no 

bearing on job performance. 

On the flip side, if in an effort to prevent that sort of discrimination we define genetic information too broadly, it could greatly 

upset some insurance markets, resulting in an adverse selection. 

The government has taken some measures to tackle this issue by 

expanding the Americans with Disabilities Act to include those 

that are subject to discrimination on the basis of genetic information in relation to illness, disease or other disorders. Additionally, 

the Health Insurance Portability and Accountability Act, lovingly 

referred to as HIPPA, prohibited group health plans from using genetic information to establish rules for eligibility. 

In addition, more than half of the states have enacted their own 

laws that further restrict the use of genetic information in health 

insurance underwriting and employment decisions. As this Congress continues to consider further legislation, it’s vital that we 

move only after careful deliberation. We need to know and understand the effects of current law before we attempt to take further 

steps, so as not to be surprised by any unintended consequences of 

our work to provide the right balance of privacy for Americans. 

In short, these are tough issues that have no easy answers, and 

we appreciate you all being here today to give us a more detailed 

backdrop for -discussion, your latest research and to answer any 

questions if you can. 

I now yield to the distinguished Ranking Minority Member of the 

Subcommittee, Mr. Rob Andrews, for whatever opening statement 

you wish to make, sir. 

[The prepared statement of Chairman Johnson follows:]

Statement of Hon. Sam Johnson, Chairman, Subcommittee on Employer–

Employee Relations, Committee on Education and the Workforce 

Good morning. Let me extend a warm welcome to all of you, to the ranking member, Mr. Andrews, and to my other colleagues. 

When the NIH and Department of Energy announced that they had completed a 

rough ‘‘map’’ of the human genome in 2000, it opened the door to a new era of research. The dream of detecting diseases early on, accurately treating them with 

minimal side-effects if not preventing them entirely seemed within reach, and indeed we move closer to that reality every day. 

With this unprecedented potential for discovery, however, comes an equality 

weighty challenge for public policy makers. The possibility of unjust use of genetic 

information about individuals and their families must be addressed. Discrimination 

against a potential employee because they MAY get cancer some day is not acceptable. Employment decisions should be based on an individual’s qualifications and 

ability to perform a job, not on the basis of factors, genetic or otherwise, that have 

no bearing on job performance. 

3

On the flip side, if—in an effort to prevent that sort of discrimination—we define 

‘‘genetic information’’ too broadly, it could greatly upset some insurance markets, resulting in adverse selection. 

The government has taken some measures to tackle this issue by expanding the 

Americans with Disabilities Act to include those that are subject to discrimination 

on the basis of genetic information relation to illness, disease or other disorders. Additionally, the Health Insurance Portability and Accountability Act (lovingly referred 

to as HIPAA) prohibited group health plans from using genetic information to establish rules for eligibility. 

In addition, more than half of the states have enacted their own laws that further 

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

As this Congress continues to consider further legislation, it is vital that we move 

only after careful deliberation. We need to know and understand the affects of current law before we attempt to take further steps, so as not to be surprised by any 

unintended consequences of our work to provide the right balance of privacy and 

for Americans. 

In short, these are tough issues that have no easy answers. We appreciate you 

being here today to give us a more detailed backdrop for discussion, your latest research and to answer any questions you can. 

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

Mr. ANDREWS. Good morning. Good morning, Mr. Chairman. 

Thank you for your courtesies, and welcome, ladies and gentlemen. 

We look forward to hearing from you this morning. 

We’re interested in this subject, and we’re here this morning because of people like a young woman named Kim who was a social 

worker at a human services agency. One day she went to a workshop for her staff about caring for people with chronic illnesses. 

She mentioned at the workshop that she had been the primary 

caretaker for her mother, who had died of Huntington’s Disease. It 

appears that because of her family history, this young woman, 

Kim, had a 50 percent chance of developing the disease herself. 

Kim had always received outstanding performance reviews as a 

great employee of her agency. One week later, after disclosing casually in the workshop that she had a family history of Huntington’s 

Disease, Kim was fired. 

At best under present law—at best—it is ambiguous as to whether Kim is protected by the employment discrimination laws of our 

country. She should be. And if in fact the reason for her dismissal 

was her genetic predisposition for a disease, she should be protected by the laws of this country. 

The purpose of this hearing today is to figure out exactly how to 

do that. This is one of the rare issues in the field of employment 

law where there is, at least on the surface, very broad agreement. 

One voice in this debate said this: ‘‘Genetic discrimination is unfair 

to workers and their families. It is unjustified. Among other reasons, because it involves little more than medical speculation. A genetic predisposition toward cancer or heart disease does not mean 

the condition will develop. To deny employment or insurance to a 

healthy person based only on a predisposition violates our country’s 

belief in equal treatment and individual merit.’’

I could not have said it better myself. These words were not spoken by me. They were spoken by President George W. Bush. 

4

This is an issue on which we should reach prompt agreement. 

There are many ways that we can approach this problem, and I 

would hope that the hearing this morning will explore the assets 

and liabilities of those various ways. But our goal needs to be to 

move as the Senate has moved very expeditiously in a nearly unanimous vote toward legislation—in fact, it was a unanimous vote of 

those present—toward legislation that will prohibit discrimination 

in hiring, promotion, employment status, legislation that will protect the rights of people to be free from invasive testing with respect to their genetic status. This is what we need to do. 

If a person walks into a hiring office this morning and the 

human resources director says we’re not going to hire you because 

we’re not hiring dark-skinned people or women or Catholics, if an 

H.R. director says that this morning, they’ve violated the law. And 

I think the law should be no less profound if a person walks in and 

their medical history shows that they have a predisposition toward 

leukemia or heart disease. It’s an immutable characteristic. 

The point of employment discrimination law for decades in this 

country, really longer than that if one looks at the constitutional 

law, is that people should not be judged on their immutable personal characteristics. They should be viewed, as the President stated, they should be viewed on the merit of their performance in the 

job. We should be judged by who we are, not by what our genetic 

makeup does to the color of our skin or our gender or our health 

care status. 

I think it’s very important that we move quickly toward a legislative resolution of this problem. I thank the Chairman for holding 

the hearing, and I look forward to working with him and his good 

offices to achieve a level of consensus as the Senate did to get this 

on the President’s desk and outlaw this practice. 

Thank you very much. 

Chairman JOHNSON. Thank you, Mr. Andrews. We’ve got a very 

distinguished panel of witnesses before us today, and I want to 

thank you all for coming. Dr. Kathy Hudson is the Director and 

founder of The Genetics and Public Policy Center and an associate 

professor in the Berman Bioethics Institute and Institute of Genetic Medicine, Department of Pediatrics, at Johns Hopkins University. 

Before founding the Genetics and Public Policy Center, Dr. Hudson was the assistant director of the National Human Genome Research Institute. That’s an acronym I haven’t seen. How do you 

pronounce it? 

Dr. HUDSON. It’s not possible. 

Chairman JOHNSON. NHGRI. Responsible for communications, 

legislation, planning and education activities. 

Mr. Tom Wildsmith is currently a consultant in the Hayes 

Group’s Arlington, Virginia office. Mr. Wildsmith has 21 years of 

experience dealing with all aspects of health insurance policy and 

financing, including 12 years operational experience with a commercial carrier, 9 years advocacy experience with a major health 

insurance trade organization. 

Dr. Jane Massey Licata, a biotechnology patent lawyer representing universities, biotechnology companies, and major pharmaceutical companies, Dr. Licata has been involved in the filing of 

5

numerous patent applications concerning diagnostics and therapeutics which rely upon genetic information and human genes, and 

you’ve been here before. We welcome you back. 

Mr. Lawrence Lorber, a partner in the Washington, D.C. office 

of Proskauer Rose, is an employment law practitioner who counsels 

and represents employers in connection with all aspects of labor 

and employment law. Mr. Lorber was formerly the Deputy Assistant Secretary of Labor and director in the Office of Federal Contract Compliance Programs during the Ford Administration. 

Before the witnesses begin their testimony, I want to remind 

members we will be asking questions after the entire panel has testified. In addition, the Committee Rule 2 imposes a 5-minute limit 

on all questions, and you’ve got lights down there which were used 

for he and I, and if you see the yellow light come on, we’d like you 

to try to tie it up and close it out. 

And I’ll now recognize Dr. Hudson as the first witness, and you 

may begin your testimony. 

STATEMENT OF KATHY HUDSON, DIRECTOR, THE GENETICS 

AND PUBLIC POLICY CENTER, JOHNS HOPKINS UNIVERSITY, 

WASHINGTON, DC 

Dr. HUDSON. Thank you, Mr. Chairman, Members of the Committee. Thank you for inviting me to appear before you, and thank 

you for your consideration of this important issue. 

My name is Kathy Hudson. I’m the director of the Genetics and 

Public Policy Center at Johns Hopkins University. The Center was 

created in 2002 by a grant from the Pew Charitable Trusts, and 

our mission is to provide information and analysis on genetic technologies and genetic policies for the public, the media and policymakers. 

In my current position, and in my former position at the Human 

Genome Project, I’ve had the pleasure of working with both Republican and Democratic staff to help craft genetic discrimination legislation. I’d ask that my written testimony be made a part of the 

record, and I’ll proceed to make three points about the promise of 

genetic medicine. 

Chairman JOHNSON. We’ll do that for all of you. 

Dr. HUDSON. Thank you. 

Chairman JOHNSON. If you want to submit them for the record. 

Dr. HUDSON. The threats to realizing that promise, and the need 

for public policy protections. Last year marked the completion of 

the Human Genome Project, a historic international effort to decipher letter by DNA letter the entire sequence of all human genes. 

Genes are simply instructions, instructions for the human body to 

develop and function normally, but a misspelling in those instructions can cause disease or increase the risk of disease. 

With the human genome sequence in hand, scientists can identify quickly DNA misspellings associated with disease, and it’s relatively straightforward then to develop a genetic test. 

Genetic tests provide information, information that can provide 

a diagnosis and guide treatment decisions, prognostic information 

about the future course of a disease, and probabalistic information 

about the future risk of developing a disease. 

6

Today there are over a thousand different genetic tests available, 

and that number is increasing steeply. They range from tests for 

fatal and untreatable diseases such as Huntington’s to tests for 

mutations that detect a risk for future disease such as breast cancer. 

And not only is the number of tests increasing, but the technology for testing is getting ever more powerful. It used to be that 

a genetic test looked for one DNA misspelling at a time. With new 

gene chip technology, we can look at hundreds, even thousands of 

DNA misspellings in a single test. 

As we move ahead to integrate genetics into mainstream medicine, we need to make sure that public policy keeps pace. Protections must be in place to assure people that the results of their genetic tests will not be used against them. There have been cases 

of genetic discrimination and breaches of genetic privacy. Workers 

at Burlington Northern Santa Fe Railroad were subjected to surreptitious genetic testing to determine if they had a supposed genetic basis for work-related carpal tunnel syndrome. 

More recently, Heidi Williams has shared the story of how her 

two young children were denied health insurance even though they 

were only carriers of a recessive genetic disease and would not 

themselves become ill. 

Should a person’s job be dependent on whether they may or may 

not develop a disease at some point in the future, or should the 

ability to land a keep a job be based on whether the person can 

do the job today? 

A number of steps, as the Chairman mentioned, have been taken 

to put limited protections in place. HIPPA includes some restrictions on the use of health-related information and explicitly includes genetic information. The privacy regulations afford the same 

privacy protection for genetic information as other health-related 

information, and the EEOC has issued guidance that genetic information should be protected under the Americans with Disabilities 

Act, though the extent of those protections remains largely untested and unclear. 

As the Chairman noted, a key challenge in drafting genetic discrimination legislation is getting the definitions right. The key definitions are genetic tests and genetic information. Definitions that 

are inexact will undermine an otherwise well-intentioned effort. In 

crafting a definition that is neither too broad nor too narrow, it’s 

also important to ensure that the definition is not rooted in genetic 

testing technologies of the present time that will rapidly become 

obsolete. So the definitions need to be able to accommodate new innovations in genetics and genetic testing. 

Finally, I want to share with you results from new research conducted by the Genetics and Public Policy Center to look at what 

the public knows, thinks, and feels about genetic testing. We completed a very large survey in April and found that Americans are 

generally very optimistic about the future of genetic testing and its 

potential for improving human health, but they are also very concerned about who is going to have access to these test results. An 

overwhelming majority, 92 percent, oppose employers having access 

to genetic information. Similarly, 80 percent oppose health insurVerDate 0ct 09 2002 19:05 Dec 05, 2004 Jkt 000000 PO 00000 Frm 00010 Fmt 6633 Sfmt 6602 H:\DOCS\94940 EDUWK PsN: NNIXON
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ance companies having access to that information. Opposition is 

growing since we asked an identical question in 2002. 

In conclusion, the need for protections against genetic discrimination grows with every new test developed and with every new 

patient who decides to forego or delay genetic testing because of 

their concerns about genetic discrimination. 

I am confident that as you chart a path forward, you will be able 

to meet the needs of scientists, health care providers, insurers, employers, and most importantly, of patients. 

Thank you. 

[The prepared statement of Dr. Hudson follows:]

8

Statement of Dr. Kathy Hudson, Director, The Genetics and Public Policy 

Center, Johns Hopkins University, Washington, DC


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Chairman JOHNSON. Thank you, Dr. Hudson. 

Mr. Wildsmith, you may begin. 

STATEMENT OF THOMAS F. WILDSMITH, CHAIRMAN, GENETIC 

TESTING TASK FORCE, AMERICAN ACADEMY OF ACTUARIES, 

WASHINGTON, DC 

Mr. WILDSMITH. Chairman Johnson, Ranking Member Andrews, 

and distinguished Members of the Committee, I thank you for this 

opportunity to testify on behalf of the American Academy of Actuaries. My name is Tom Wildsmith, and I currently serve as the vice 

chairperson of the Academy’s Federal Health Issues Committee. 

I’ve also served as the chairperson of the Academy’s Task Force 

on Genetic Testing in Health Insurance. The Academy is a nonpartisan public health policy organization for actuaries of all specialties. 

Scientific understanding of human genetics is advancing rapidly, 

and the technology continues to evolve. It’s difficult to predict the 

impact this technology will ultimately have on the health insurance 

system. There are several key factors to consider in the public policy debate over the proper regulation of genetic information, especially with respect to health insurance. 

First, basing premiums and eligibility for coverage on a specific 

person’s own health is a characteristic of the voluntary individual 

health insurance market, not the employer-sponsored group insurance market. Thus, while possible future use of genetic information 

for medical underwriting is a potentially significant issue in the individual medical expense insurance market, it’s not a significant 

concern in the group insurance market. 

Second, medical expense coverage is unique, because beyond the 

questions related to the use of genetic information, it involves the 


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question of whether the direct cost of genetic testing and treatment 

will be covered. 

Third, innovative disease management and prevention programs 

depend on the ability to identify patients and high risk individuals 

for appropriate interventions. It’s important that rules governing 

the use of genetic information not hamper the ability of such programs to improve care. 

Finally, all personal health information is, as it should be, protected. Applying special rules to genetic information would increase 

the complexity of an already quite complicated health care system. 

I’d like to discuss each of these in turn. 

Information on the health status of individual program participants is not used to determine eligibility for participation in employer-sponsored health insurance coverage, which covers nine out 

of ten privately insured Americans. Private group and individual 

health insurers do not currently require applicants for insurance to 

undergo genetic testing or use genetic testing to limit coverage for 

preexisting conditions. 

Of course, the debate is really over the future. The impact of genetic information on the health insurance system will change over 

time as the technology develops and may often be overshadowed by 

broader societal concerns about the meaning and significance of the 

information. 

Employers will have to decide whether or not to pay for new genetic tests and treatments. It’s unclear whether genetic technology 

will increase or decrease overall lifetime spending on medical care, 

and what the timing of those changes may be. We expect genetic 

tests that aid in the diagnosis of disease and genetic treatments for 

disease to be gradually recognized and covered by medical expense 

plans. Unless these new tests and treatments produce an offsetting 

reduction in other medical expenses, they may produce an overall 

increase medical care cost. As the use of genetic technology becomes routine, the question of how to pay for it will become more 

important. 

Employers are increasingly turning to a variety of targeted programs to prevent the development of disease in high risk individuals and to manage its progression in those who are already ill. To 

be successful, all of these programs depend on information. As we 

attempt to ensure that personal health information is not used 

against employees, it is important that we not inadvertently preclude its beneficial use on their behalf. 

There is broad agreement that patients’ privacy must be protected and the confidentiality of sensitive health information must 

be secured. Underwriting and pricing for group insurance has historically focused on the overall makeup of the eligible group, rather 

than on the health of any particular individual. And HIPPA prohibits employers from using health status to deny coverage to an 

employee or to make an employee pay more than a coworker. 

Genetic information is subject to the same confidentiality rules 

as other forms of health information. Separate rules governing genetic information could increase complexity in a system that’s already quite complicated. 

I would also note that the definitions in the first genetic information legislation to be enacted would likely set an important preceVerDate 0ct 09 2002 19:05 Dec 05, 2004 Jkt 000000 PO 00000 Frm 00016 Fmt 6633 Sfmt 6602 H:\DOCS\94940 EDUWK PsN: NNIXON
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dent for the future. As genetic science advances, additional legislation will be needed to address future issues that we can’t predict 

in advance. Legislation in this area should be drafted carefully and 

try and capture what is unique about the newly emerging genetic 

technologies. 

Again, I thank you for the opportunity to testify on behalf of the 

Academy. 

[The prepared statement of Mr. Wildsmith follows:]

14

Statement of Thomas F. Wildsmith, Chairman, Genetic Testing Taskforce, 

American Academy of Actuaries, Washington, DC


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Chairman JOHNSON. Thank you, Mr. Wildsmith. We appreciate 

your comments. 

Dr. Licata, you may proceed. 


94940.024
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STATEMENT OF DR. JANE MASSEY LICATA, PARTNER, LICATA 

& TYRRELL P.C., MARLTON, NJ 

Dr. LICATA. Good morning. When the Federal Government first 

began really trying to address the issue of genetic privacy and nondiscrimination it was around 1995, and at that time, I was pregnant with my youngest child. In September of 2001, I came before 

this Committee on his very first day of kindergarten, and was 

slightly late, and thank you for your indulgence. And at that time, 

we were beginning to really take a serious attack on the issue, figuring out how to create a balance that fairly allocated the risks and 

obligations between all the players in this very complex situation. 

And here we are today, a few years later. He’s getting ready to 

start the third grade in a few weeks, and some things have 

changed, and we’ve progressed, and we actually have a much more 

complex proposal before us, but it actually is very well crafted and 

very well balanced. So I would just very quickly like to talk about 

what the risks and obligations that we need to address are, and 

how the—some of the suggestions that are currently before us that 

have been very well stated in the Senate proposal, could be considered by this Committee and hopefully the House. 

We’ve talked about HIPPA and all the wonderful things that 

HIPPA does. It’s a very important legislation. The Act has done a 

lot for Americans, but it does not prevent insurers from collecting 

genetic information or limit the disclosure of genetic information 

about individuals to insurers, and it does not prevent insurers from 

requiring applicants to undergo genetic testing. 

We have the ADA. And although the law is a very important law 

and we have guidance, it does not explicitly address genetic information in all cases or deal with unaffected carriers of a disease 

who may never get the disease themselves, individuals with late 

onset genetic disorders who may be identified through genetic testing as being at risk of developing a disease, or others identified 

through family history as being at risk for developing the disease. 

It does not protect workers from requirements or requests to provide genetic information to their employers. 

And we also have Title VII of the Civil Rights Act, which could—

and I’m a law professor, so I’m always looking for good arguments—provide a basis that genetic discrimination based on racially or ethnically linked genetic disorders constitutes unlawful 

race or ethnicity discrimination. But there’s only really a few markers where that would be relevant. The two that have actually been 

addressed in most stages of legislation are Tay-Sachs and sickle 

cell anemia. 

Forty-one states have actually enacted some sort of legislation on 

genetic discrimination in health insurance, and 31 have enacted 

legislation on genetic discrimination in the workplace. So we’ve 

come a long way. there’s been good progress. There’s been a great 

public debate. 

But we’re at a critical point now where we need to create a basis 

for all the players in the market. When I speak of all the players, 

I’m talking about the individuals who clearly have a privacy interest to protect themselves and their families; the researchers, who 

want to continue this important research who need to recruit subjects and be able to have as much information as possible to really 

35

get the right answer as to the relevance of the marker and the correlation to a particular disease or condition. 

We need to talk about business, and not just the people that are 

insuring through self-insurance and providing this as a benefit to 

their employees, but the companies that need to get investors, particularly in the biotechnology and medical industries where people 

are very concerned about this as an issue because it creates unpredictability and risk. 

We’re talking about unpredictability in a genetic marker and 

how you interpret it; it’s even worse if you’re a biotechnology company and you’re trying to raise money, and the thought of whether 

if you even could come up with a good genetic diagnostic or a good 

genetic therapy, how that would play out in the marketplace, given 

people’s fears that they’re afraid of what is going to happen to the 

information once it’s created, because you’re opening literally a 

Pandora’s box. 

And we’re also looking at the broader economy. OK, we’re looking 

at the issue of the cost to the employer and the cost in the workplace of protecting this information. But there’s a greater cost in 

the overall economy for not taking the opportunities for the best 

medical care, for not allowing people to get the information and use 

the information to preserve their health and to be able to actually 

maybe even reduce health care costs overall, and also basically to 

be able to compete in a worldwide economy where we are the leaders right now in genetic research. 

So asking to create a basis where we really have a fair apportionment of risk and also responsibility is what the bill that we’re currently considering is all about. We’re looking at what is the job of 

the employer and what is the rights of the individual. And the perspective on the individual is terrific, because we are giving the autonomy to the individual to give the consent as to how their information is used, and we’re putting the responsibility on the company to protect that information and preserve the public trust. 

Thank you. 

[The prepared statement of Dr. Licata follows:]

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

Marlton, NJ 

With the completion of the first map of the human genome, we now have a basis 

for determining our unique genetic makeup and probable medical future and to permit personal diagnostics and therapeutics to be created for us. This is no longer the 

stuff of science fiction. Everyday new genetic markers are identified and correlated 

with human biology and disease. The future of medicine lies in genomics. Worldwide, university and pharmaceutical company researchers alike are mining databases of genetic information and rapidly identifying new drug targets, diagnostic 

markers and creating a basis for novel therapies. Tests designed to determine the 

presence or version of genes that cause diseases or conditions carry with them the 

most intimate details of our biological past and future as well as a devastating potential for discrimination. Analysis of our genetic material also provides information 

about our parents, siblings and children which impacts not only on ourselves but 

on family privacy. The potential for misunderstanding or misuse of this information 

is so great, however, that it is essential that we establish a national policy for the 

protection of an individual’s privacy interest in their genetic information. 

The Genetic Information Non-discrimination Act is an important and timely legislative initiative to prohibit health insurance and employment discrimination against 

individuals and their family members on the basis of predictive genetic information 

or genetic services. Predictive genetic information is information about an individual’s genetic tests (i.e., the analysis of human DNA, RNA, chromosomes, proteins, 

36

and certain metabolites in order to detect genotypes, mutations, or chromosomal 

changes); information about genetic tests of family members; or information about 

the occurrence of a disease or disorder in family members. Information about the 

sex or age of the individual, information about chemical, blood, or urine analysis of 

the individual, unless these analysis are genetic tests, and information about physical exams and other information relevant to determining the current health status 

of the individual are specifically excluded from the definition of predictive genetic 

information. Genetic services are health services, including genetic tests, provided 

to obtain, assess, or interpret genetic information for diagnostic and therapeutic 

purposes, and for genetic education and counseling. 

An insurer may not deny eligibility or adjust premium or contribution rates for 

a group on the basis of predictive genetic information or information about a request 

for or receipt of genetic services. An insurer may also not request or require genetic 

testing. Further, the insurer may not request, require, collect or purchase such predictive genetic information. The insurer may also not disclose predictive genetic information or a request for genetic services; disclosures to the Medical Information 

Bureau and the individuals’s employer or plan sponsor are specifically prohibited. 

However, with respect to payments for genetic services, the insurer may request evidence that such services were performed (but not the results) and if the evidence 

is not provided, may deny payment. An insurer may also request that an individual 

provide predictive genetic information so long as such information is used solely for 

the payment of a claim and limited to information that is directly related to and 

necessary for the payment of the claim (i.e. the claim would otherwise be denied). 

Disclosure is limited to individuals within the plan who need access to the information for payment of the claim. 

Prior, knowing, voluntary, written authorization for the collection or disclosure of 

predictive genetic information is provided for. Disclosures between health care providers for the purpose of providing treatment are exempted. 

Civil actions for legal and equitable relief including civil attorney fees and the 

costs of expert witnesses are provided for. Civil penalties, payable to the United 

States Treasury, are also provided for. Further, it is provided that these provisions 

shall not be construed to supersede any State law provision that more completely 

protects confidentiality or privacy or protects against discrimination with respect to 

such information. 

Further, employers, employment agencies and labor organizations are prohibited 

to fail or refuse to hire, discharge or otherwise discriminate on the basis of predictive genetic information. Employees may also not be classified on the basis of predictive genetic information or a request for genetic services. Employers may not request, require, collect or purchase predictive genetic information about employees 

for genetic monitoring without prior, knowing, voluntary and written authorization 

by the employee and without informing the employee of the monitoring results. Genetic monitoring is the periodic examination of employees to evaluate changes in 

their genetic material (e.g. chromosomal damage or evidence of increased occurrence 

of mutations) that may have developed during the course of employment due to exposure to toxic substances in the workplace in order to deal with adverse environmental exposures in the workplace. Any monitoring must conform to OSHA or 

FMSHA requirements. Further, the results of the monitoring may not disclose the 

identity of an employee. Any predictive information about an employee must be 

treated or maintained as part of the employee’s confidential medical records. A Federal or State court may award any appropriate legal or equitable remedy which may 

include payment of attorney’s fees and costs, including the costs of experts. The 

EEOC may also enforce. 

This bill is a well considered proposal. It addresses some of the most significant 

privacy and nondiscrimination issues in a thoughtful and balanced manner. 

Many genetic marker are not conclusively diagnostic but rather may indicate a 

predisposition to a disease or condition or may presently be believed to have a correlation with a disease or condition. In such cases it would be especially troublesome 

if the information were relied upon to make employment or insurance decisions. 

However, there are well established genetic markers which can be diagnostic. It is 

therefore important that the definitions of genetic information and information relevant to determining the current health status of an individual not allow for inadvertent access to some genetic information or test results. There is also an exception 

concerning sharing of information between health care providers for treatment. 

Again, I would suggest that health care providers are accustomed to dealing with 

sensitive, confidential information, for example HIV status, and accordingly a blanket exception is not required. The individual’s prior written consent to make the information available between health care providers should not be an undue burden 

and helps identify the information as sensitive and confidential. Further, there is 

37

an exception for information for payment of a claim. This provision places individuals in the position of paying for the genetic test themselves or risking the disclosure. While there are provisions that restrict the scope of the disclosure and to 

whom the information would be disclosed, I would suggest that the results never 

be disclosed an insurer or employer. I would also suggest that there be clarification 

as to what would be sufficient evidence that the services were performed, i.e. a receipt from a licensed laboratory or health care professional that a genetic test was 

performed should be sufficient. 

Unfortunately it is those seeking individual health insurance protection who may 

be at the greatest risk for discrimination. While there are provisions that cover individual policies in some instances, individuals require the same protections as group 

participants. Also, while there are provisions for civil suits and administrative actions, I would suggest that there should be significant penalties for any knowing 

violation by an insurer or employer. Under the current scheme, the employee or insured, who may not have reasonable access to legal representation, may not be able 

to effectively protect their privacy interests. I would therefore suggest the Government take a proactive role and that there be substantial civil penalties provided for 

in the event there is any violation. Clearly, this is provided for to some extent under 

the proposed legislation, however, strengthening the role for government enforcement could be helpful. 

While some states, like my state, New Jersey, have enacted genetic privacy acts, 

I believe it is essential to establish a consistent, national policy to protect against 

genetic discrimination in employment and insurance and to protect the privacy of 

this most sensitive and personal information. These issues cross state boundaries 

and affect all of our citizens. New Jersey’s Genetic Privacy Act which was enacted 

in 1996 declared that genetic information is personal information that should not 

be collected, retained or disclosed without the individual’s authorization. The Act 

prohibits discrimination by employers against employees carrying genetic markers 

of diseases or behavioral traits. It is unlawful for an employer to refuse to hire or 

employ, or to discharge or require to retire, an employee because of the employee’s 

genetic information, or atypical hereditary cellular or blood trait, or because the employee refused to submit to a genetic test or make available the results of a genetic 

test to the employer. It also prohibits the use of genetic information in the fixing 

of rates or withholding of life insurance and bans the use of genetic information to 

establish the amount of insurance premiums, policy fees, or rates charged for a 

health insurance contract. The penalties for violation of the provisions of the Act 

include fines and prison terms. Actual damages, including economic, bodily or emotional harm proximately caused, may also be recovered for wanton disclosure of genetic information. The New Jersey Act is an important first step in controlling the 

flow of genetic information, however, Federal legislation is still needed. 

The time is now for the Genetic Information Nondiscrimination Act. This legislation addresses some of the most urgent needs in protecting an individual’s privacy 

and in assuring access to genetic testing and services. Until recently, access to this 

type of testing was limited to those who could afford to pay for it privately. By paying it for it themselves, they could also have greater assurance of confidentiality 

concerning the testing and the results. While wider acceptance of the need and validity of genetic testing has made insurers more comfortable with reimbursement for 

this type of service, there is a huge risk to the insured or employee that very sensitive information, which could easily be subject to misinterpretation may be widely 

distributed as a part of the insurance information system. I would suggest erring 

on the side of making such information as inaccessible as possible to third parties 

since the risk of misunderstanding or misuse is so great. 

Chairman JOHNSON. Thank you, ma’am. Appreciate your testimony, too, and thank you for coming back. 

Mr. Lorber, you may begin your testimony now. 

STATEMENT OF LAWRENCE Z. LORBER, ESQ., PARTNER, 

PROSKAUER ROSE LLP, WASHINGTON, DC, ON BEHALF OF 

THE U.S. CHAMBER OF COMMERCE 

Mr. LORBER. Thank you, Mr. Chairman and Members of the 

Committee. My name is Lawrence Lorber. I am a partner in the 

Washington office of the Proskauer Rose law firm and have practiced labor law in government and private practice for over 30 

38

years. I am here testifying on behalf of the United States Chamber 

of Commerce. We are honored to be invited to this extremely important hearing. 

At the Chamber, I am chairman of the Equal Employment Opportunity Subcommittee of the Chamber’s Labor Relations Committee. The Chamber also serves as co-chair of the Genetics Information Nondiscrimination in Employment Coalition, the GINE coalition, which is a group of trade associations and professional organizations formed to address concerns about workplace discrimination based on employees’ genetic information. 

I have served as a technical adviser to the coalition with respect 

to the various genetics bills introduced in the House and Senate. 

And briefly, as the Chairman noted, in my prior government experience, I was the Director of the Office of Federal Contract Compliance Programs at the Department of Labor and issued the first regulations under Section 503 of the Rehabilitation Act, which prohibited discrimination and required affirmative action with respect to 

then called handicapped or disability discrimination. Those regulations established the principle of job relatedness in the area of disability discrimination, and they also set the standards for pre- and 

post-offer employment medical inquiries of employees. 

And I was honored to be appointed to the first board of directors 

of the Office of Compliance, the congressional office which interprets and enforces the Congressional Accountability Act, which, as 

you know, applies 11 labor and employment laws, including the 

ADA, to the Congress and congressional instrumentalities. 

The issue before the Congress is whether a new Federal law regulating employer collection and use of information about an individual’s genetic predisposition to disease or disorders is necessary 

at this time, and if so, what form should the law take. However, 

the Congress and certainly this Committee must be aware of a very 

salient fact. It must be acknowledged today that the workplace is 

already subject to extensive and complex statutory and regulatory 

oversight by Federal, state and local government. This has created 

a confusing matrix of overlapping laws and regulations and imposes a significant cost on our economy. And while in many cases 

providing important protections, also opens the door to abusive, 

frivolous and costly litigation. 

Therefore, as a matter of sound pubic policy, there ought to be 

a reluctance to add to this mass of regulation and a requirement 

that any law address a real issue which is not dealt with by the 

existing body of employment law. Therefore, I believe it is critical 

to make one salient point. There is simply little or no evidence of 

employer collection or misuse of genetic information in today’s 

workplace. This is despite continued predictions that in the absence 

of new law, the fear of increased insurance costs, absenteeism and 

low productivity will inevitably drive vast numbers of employers to 

genetic testing of the workforce and employment discrimination or 

exclusion based upon genetic makeup. 

Well, whether it’s due to the threat of liability under the extensive existing protections, fear of public backlash, moral concerns or 

simply a lack of interest, employer collection and misuse of genetic 

information remains largely confined to the pages of science fiction. 

As my testimony makes abundantly clear, the current body of FedVerDate 0ct 09 2002 19:05 Dec 05, 2004 Jkt 000000 PO 00000 Frm 00042 Fmt 6633 Sfmt 6602 H:\DOCS\94940 EDUWK PsN: NNIXON
39

eral law, including the ADA, Title VII of the Civil Rights Act, 

HIPPA and other Federal laws are more than ample to deal with 

any misuse of genetic information. 

And even if there were some lapse in Federal law, 32 states have 

laws specifically prohibiting employment discrimination based upon 

management makeup. Twenty-six have laws specifically regulating 

employer acquisition and disclosure of genetic information, and 25 

states have laws regulating the privacy of genetic information. 

Forty-nine states have laws similar to the ADA. 

I would like to discuss the development of the reported cases in 

these states except for one problem—there isn’t any. In states such 

as California, which has, as we all well know, an extensive employment litigation docket, there are no reported cases. In New Jersey, 

which also has a vigorous state employment litigation practice, 

there are no cases under the genetic privacy law. 

Employment plaintiff lawyers are not the proverbial potted 

plants, nor are they shy about attempting to extend the parameters 

of the law. Yet there are no reported cases. If the states are 

deemed to be the laboratories for the Federal Government in this 

area, the Petri dishes have grown no cultures. 

Perhaps it is because there is no problem, or perhaps it is because there are sufficient causes of action under existing law to 

temper the enthusiasm of any employer which for whatever reason 

may wish to exclude someone because of their genetic makeup. 

We would also note that the EEOC, the Federal Government’s 

primary agency dealing with issues of employment discrimination, 

has already taken the position that discrimination on the basis of 

genetic information violates the ADA, and in the one reported case, 

the EEO swiftly and effectively dealt with the issue, enjoined the 

practice and secured a multi-million-dollar settlement for the alleged victims. 

In conclusion, as the representative of employers and as a leader 

in the effort to increase health insurance coverage, the Chamber of 

Commerce is excited about the potential of genetic science leading 

to more effective treatments and early interventions. However, we 

just as strongly believe that an additional broad workplace regulatory scheme is unnecessary at this time. Science is not assisted 

by overregulation and frivolous litigation. 

We appreciate the opportunity to highlight the extensive existing 

protections against genetic discrimination as well as the complete 

lack of evidence that employers are engaged in the collection and 

misuse of genetic information. 

Thank you. 

[The prepared statement of Mr. Lorber follows:]

40

Statement of Lawrence Z. Lorber, Esq., Partner, Proskauer Rose LLP, 

Washington, DC, on behalf of the U.S. Chamber of Commerce


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Chairman JOHNSON. Thank you, sir. You know, in your written 

testimony, I think you mention two concerns that have not been 

mentioned in the past. Would you detail those a little bit further? 

Mr. LORBER. Well, there have been some concerns, and as pointed out by another member of this panel, that there may be a lapse 

in the ADA. There may be a gap in the ADA’s coverage with respect to testing. And we don’t believe that’s the case the EEOC has 

taken that position, and I think that nevertheless, if there is such 

a gap, if it’s identified, we believe the EEOC in the first instance 

could deal with it, and second, to the extent to which even after 

that experience is examined, perhaps there might be some need for 

limited targeted legislation. 

But beyond that, as I indicate in a broad discussion in the testimony, there are a plethora of laws to deal with it, and indeed, Congressman Andrews, in your instance, I believe that individual 

would have a cause of action under Section 504 of the Rehabilitation Act as well as the ADA if she were a public employee. So that 

I don’t believe there simply is a gap that necessitates this very expansive legislation. 

Chairman JOHNSON. Could you maybe give me a hypothetical example about how an employer without trying to discriminate might 

inadvertently run afoul of the proposed law this coming out? 

Mr. LORBER. Oh sure. Well, the proposed laws, we must understand, don’t only deal with genetic testing, and that’s an issue 

that’s front and center. The genome studies are indeed studying 

and mapping genetic information. The proposed laws deal with genetic history, and indeed the proposed laws have no limit on the 

length, the extent to which genetic history or family history could 

be found. 

Indeed, it’s been stated that if there were a descendant of the 

Plantagenets working in the United States today and somebody 

read one of their histories, an employer could be found guilty because it knew that someplace in the far distant past there might 

be a condition which might be indicative of a genetic marker. 

So there is no limit in the proposed legislation with respect to 

what the scope of it is. We’re not talking about genetic testing. 

We’re talking about family history. If an employer sends flowers to 

somebody because a parent died of a condition which might be indicative of a genetic marker, that employer could be deemed to 

have genetic information. 

So I think that we’re looking at laws that are so broadly framed 

that there is no exclusion. And indeed, the legislation before the 

House, I might add, is the unique situation of having no limits on 

damages, no requirement to go to an administrative agency. This 

problem, which is a problem perhaps in the future, is dealt with 

more severely than the problems of racial discrimination, disability 

discrimination and gender discrimination in which the laws have 

been carefully tailored to strike a balance between the remedy and 

the harm. 

Chairman JOHNSON. I might add that anytime you all have a 

comment to make, we would let you do that. That’s one of the benefits of running a Committee. Dr. Hudson, we hear the terms ‘‘predictive’’ and ‘‘protected’’ genetic information used. Can you tell us 

about the significance of those two terms? 

50

Dr. HUDSON. Predictive and protected. Predictive genetic information generally refers to when a genetic test result gives information that provides a probability that the individual will develop a 

disease at some point in the future. That information is usually 

based on a person will have a 50 percent increased likelihood of developing a certain disease by age 60, for example. So it’s imprecise 

information, but it’s valuable in the health context because an individual and their doctor can put in place preventive measures to decrease that risk. 

Protected genetic information is not used in the medical context, 

but is used in the legal context and has been variably defined. And 

in fact, how that term is defined is really the crux of good genetic 

discrimination legislation. If that definition is too narrow, then the 

bill will be meaningless, and in fact that’s the case in many states 

that do have genetic discrimination legislation. The definition is so 

narrow as to make it virtually meaningless. And in other cases, the 

definition is so broad that it includes virtually anything. 

For example, the definition of genetic information in the HIPAA 

regulations starts out with a fine definition of genetic information—results of genetic tests, analysis of DNA. And then it goes on 

to say it’s information from medical examinations. Well, of course, 

that brings in almost the entire universe. So somewhere in between 

is a nice, precise definition that will work legislatively. 

Chairman JOHNSON. Thank you very much. Mr. Andrews, do you 

care to question? 

Mr. ANDREWS. I want to thank each of the witnesses for their efforts, outstanding testimony. I especially want to welcome Dr. 

Licata back. And I think that your remarks about balance are correct. I appreciate the contribution that you and your colleagues and 

the many groups that support this legislation made in trying to 

strike that balance. 

Mr. Lorber, I want to ask you some questions. I understand that 

part of your position is that existing law would deal with any problem that might manifest itself. Is that a fair statement? 

Mr. LORBER. That’s correct. 

Mr. ANDREWS. I want to walk through the existing law as I understand it. The EEOC has given an interpretation or issued a 

guideline I suppose it is, that says that a genetic predisposition if 

used in a discriminatory way, violates the ADA, correct? 

Mr. LORBER. That’s correct. 

Mr. ANDREWS. But the EEOC’s position is not binding on the 

courts, is it? 

Mr. LORBER. Well, it’s an agency interpretation. As you well 

know, in the Burlington Northern case, it acted upon and enforced 

that interpretation. 

Mr. ANDREWS. But the court was not compelled to accept that interpretation, correct? 

Mr. LORBER. It’s an interpretation that was issued—I would 

think it would fall within the Chevron protections of agency interpretations, but then again, Mr. Congressman, the courts sometimes 

don’t accept—

Mr. ANDREWS. But under ADA, it doesn’t flow from a rulemaking 

or from an adjudicatory proceeding, so it’s not due any specific 

51

legal deference, other than what the courts in their discretion want 

to give it, right? 

Mr. LORBER. The EEOC guidelines have, and I would add that 

the impact of the guidelines obviously affects a charge filed with 

the EEOC. And if the charge raises those issues, the EEOC district 

office will act upon that guidelines and issue probable cause determination. The individual then could be represented by the EEOC. 

Mr. ANDREWS. But you don’t take the position that those guidelines bind a court, do you? 

Mr. LORBER. Courts could—obviously, courts interpret regulations and guidelines as they see fit, as we well know. 

Mr. ANDREWS. Is that a no? 

Mr. LORBER. And they interpret statutes, as well. 

Mr. ANDREWS. We’ll take that as a no. With respect to Title VII, 

you point to a couple of cases where there is a disproportionate racial or gender impact which gives rise to a Title VII claim. What 

about cases where the condition or disease does not give rise to 

such an impact? For example, my understanding of dementia, of 

Alzheimers, is that it cuts across racial and gender lines rather 

equally. So if someone was denied employment because they had 

a genetic predisposition toward dementia, are they protected under 

Title VII? 

Mr. LORBER. Well, I think they’d be protected under the ADA, because remember, the ADA—

Mr. ANDREWS. I understand your position on ADA. 

Mr. LORBER. Well, but let me—

Mr. ANDREWS. What about Title VII? 

Mr. LORBER. Let me talk about Title VII cases, and indeed Mr. 

Wildsmith must be aware of the Manhart and the Norris cases involving sex-based actuarial tables. And the Supreme Court said, regardless of what the actuarial tables may show, the reliance upon 

them to the detriment of somebody who we certainly don’t know 

when they will die, violated Title VII. That same analogy, because 

the ADA brings into its ambit job-relatedness, would apply to the 

ADA. So you cannot parse these laws. 

Mr. ANDREWS. I asked you about Title VII, and I asked you about 

a case where someone has a predisposition toward dementia, where 

there is to my knowledge no evidence of any disparate racial impact. Does that lay out a claim of violation in Title VII? 

Mr. LORBER. Well, it may not. But again, we’re talking about the 

Congress knows a plethora of employment laws, and you can’t 

parse one and not the other. 

Mr. ANDREWS. I didn’t ask about the plethora. I asked about 

Title VII. 

Mr. LORBER. Well, lawyers deal with the plethora, and that’s 

their problem. 

Mr. ANDREWS. I know that. But does this lay out a claim—is it 

your position that it doesn’t lay out a claim under Title VII? 

Mr. LORBER. It depends how the employer and what the underlying data would show. To the extent to which, for example—

Mr. ANDREWS. If the underlying data say that there is no disparate racial impact for dementia does it lay out a claim under 

Title VII? 

52

Mr. LORBER. If hypothetically it doesn’t and there’s no gender impact, then perhaps not. But as I said—

Mr. ANDREWS. The list of state privacy protections that you cited, 

that you went through, aren’t these privacy protections preempted 

by ERISA? So if someone is in an ERISA plan—

Mr. LORBER. That’s not been litigated. I don’t know that they 

are, and—

Mr. ANDREWS. Is it your position that it is or it isn’t? 

Mr. LORBER. Well, I would suggest that it may be helpful to have 

one body of employment law and not have employers subject to 32 

state laws and a Federal law. So if you’re talking about preemption, if you’re talking about this law preempting all of these state 

laws, and if this law is carefully tailored, and if we don’t find employers whipsawed, then maybe there are areas of discussion. 

Mr. ANDREWS. I would never want to prejudge the position of any 

group, least of all the Chamber, but the Chamber pretty consistently has argued for a broad ERISA preemption, and I’d be surprised if the Chamber didn’t argue for a rather broad ERISA preemption here. If it touches the concerns—

Mr. LORBER. But would this Committee recognize preemption of 

the legislation before it with respect to all of these state laws? 

Mr. ANDREWS. I think the state laws are valid. But for those who 

favor a broad ERISA preemption, it seems to me that you have to 

draw the conclusion that state laws don’t protect the millions of 

people who are in ERISA plans, do they? 

Mr. LORBER. Well, I don’t believe that’s—and again, that’s an 

area of legislation we know about the Delta Airlines case, which 

goes one way—

Mr. ANDREWS. So can we count on the Chamber to argue in favor 

of upholding these state privacy laws against an ERISA preemption claim? 

Mr. LORBER. If and when those are litigated, we’ll have to see 

what the matter is before the court. 

Mr. ANDREWS. We eagerly await your position. Thank you very 

much. 

Dr. LICATA. Could I interject a data point? 

Chairman JOHNSON. You may. 

Dr. LICATA. Just in case you’re interested in knowing, is that I’ve 

actually looked at most of these state laws, and if you’re trying to 

sort of get a feel for where perhaps the House version and the Senate compromise version sort of would place you, is that there’s only 

basically—less than the number of state laws I could count on one 

hand. I’m not sure whether it’s four or five. I could double check 

for you—that would actually have more stringent requirements. 

The position that the Federal legislation is considering is very well 

balanced and has taken a lot of these issues into consideration, so 

that—most states in fact are much narrower and have a lot of gaps 

in them, so that if your concern is what would be the impact of preemption, is that right now, the Federal Government is extremely 

on target in addressing a broad base of concerns. 

Chairman JOHNSON. Thank you. Mr. Carter, you are recognized 

for 5 minutes. 

Mr. CARTER. Thank you, Mr. Chairman. Mr. Wildsmith, on page 

2 of your testimony, you claim that basing premiums and eligibility 

53

coverage on specific person’s own health is not a characteristic of 

the employer-sponsored group insurance market. Why is that? 

Mr. WILDSMITH. If you think about an IBM, for instance, they 

have tens of thousands of employees. They have millions of dollars 

in medical expense each year. It’s very easy to predict what their 

costs will do from year to year. Whether any particular employee 

gets sick or not is not going to move the number appreciably at all. 

With group insurance with any employer of any size, you’re dealing with the aggregate cost for all of the employees and all of the 

dependents. So you look at the age, the gender makeup. You look 

at the claims from last year, and that gives you the information 

you need to predict what next year’s costs are going to be. It’s simply not cost effective to ask every member of the group to undergo 

medical testing or to pull medical records on them, because it’s the 

aggregate costs that count. 

Mr. CARTER. But you will—I used to be in county government, 

and we were self-insured. 

Mr. WILDSMITH. Yes. 

Mr. CARTER. And we would hear the argument as our costs went 

up, they could individually say it was the money that was spent 

by that sick person and by that sick person and by that sick person, and, you know, we’ve got these many people that seem to be 

headed for being chronically ill and this, that and the other. And, 

therefore, the price of poker is going up. But it’s still not—they still 

don’t look at it that it—they’re making the argument to us as county employees, they certainly made that argument on an individual 

health basis. 

Mr. WILDSMITH. If you look at the projections, what’s generally 

going on is you have X million dollars in claims in fiscal year 2003. 

You’re projecting them forward to 2004. If you have a truly catastrophic claim, a really nasty trauma case or a really nasty neonatal case, that will cause a blip in your experience, and many employers buy stop loss insurance to protect against that. 

But it’s not generally good practice to base your pricing on an act 

of God in 1 year, because you purely don’t know whether that’s 

going to reoccur in the next year. 

Mr. CARTER. You mentioned in your testimony that HIPPA already prohibits discrimination against the individual members of a 

health insurance plan on the basis of current health status or on 

the basis of some future predisposition to a particular disease. 

Mr. WILDSMITH. Yes. 

Mr. CARTER. How do these protections work? 

Mr. WILDSMITH. The easiest way to think of them is to think 

about yourself as a new employee with the company and what the 

employer can or cannot do. If you meet the requirements, you’re a 

full time employee, whatever it is to qualify for the medical benefits, when the open enrollment comes around, the employer cannot 

say, eh, you can’t come in because you’ve got cancer or because 

your wife had cancer or because you have a genetic predisposition. 

The employer also can’t say, well, the contribution is 40 bucks a 

month for everybody else, but for you, it’s 60 because you’re getting 

a little older, you’re a little sicker. We think you’re going to have 

bad things happen. At core, those are what the HIPPA protections 

do. 

54

Mr. CARTER. How do the HIPPA privacy regulations address the 

de-identification of medical information? 

Mr. WILDSMITH. I can talk to you about how the information is 

used in pricing. I’m not an attorney, so the details of the privacy 

rules, I need to step away from. 

Mr. CARTER. That’s fair enough. Thank you, Mr. Chairman. I 

yield back my time. 

Chairman JOHNSON. Thank you, Mr. Carter. Mrs. McCarthy, do 

you care to question? You are recognized for 5 minutes. 

Mrs. MCCARTHY. Thank you, Mr. Chairman, and I thank the 

Committee for bringing this subject to this debate. I think it’s extremely important. 

First, I’d like to say that I believe decisions about generic testing 

and what to do with the results should be made by patients and 

their health care providers without fear of negative consequences, 

such as an employer choosing not to hire them because they carry 

a gene for a disease. Whether or not this discrimination is actually 

happening already, I do believe that it is happening. But whether 

you believe it’s happening or not, the fact is that people fear that 

it’s happening or it can happen to them, and I think that’s the part 

we have to really start to address there, and therefore will opt out 

not to get the testing done unless we in Congress take a definite 

stance against this type of discrimination. 

There’s a family that I’ve be working with on Long Island who 

came to me because they lost their son to a disease called Long QT, 

which is a genetic disorder. After this boy’s death, each one of the 

immediate family members was genetically tested for the disease, 

and it was found that some were carriers of the gene that caused 

the disease, and one child is actually having the disease. The child 

with the disease is now being monitored and treated, so the genetic 

testing in this case has prevented the family from possibly losing 

another child. 

In New York, we already have some legislative protections 

against genetic discrimination, health insurance and in the workplace. And yet this family still experienced concerns about whether 

they or their kids would be discriminated against once people knew 

they had these genes, and they aren’t the only ones. 

Since I introduced my bill to help screen people with genetic cardiac disease, I have gotten calls from people from all over the country with this disorder, but also expressing to me their concerns 

about genetic discrimination. In January when I reintroduce this 

bill, because my bill is not going to go anywhere this year—we’ve 

just run out of time—I plan to add a clause with regards to the discrimination. 

About 40 other states besides New York have taken action to 

protect, but as you have mentioned, it’s a web, and it is a web. 

We’ve looked at that. 

I guess my question to all of you would be, in the Senate version, 

which has already passed overwhelmingly, the genetic discrimination bill, when a health care plan or an employer misuses an individual’s genetic information, what can a person do? Can you compare for me what rights the individual has in the same circumstances under the House version which Louise Slaughter has 

been trying to get passed for I believe over 5 years? I’m not sure 

55

if you’re even familiar with it. It’s H.R. 1910, which is a lot more 

in detail. And I think, Dr. Hudson, more to the point of where it’s 

not too wide and it’s not too narrow from everything that I know, 

and I believe she’s been working with a lot of the groups that do 

the genome research and everything, and I have a place on Long 

Island, Cold Spring Harbor, that’s doing genome research, and I’m 

very involved with them on that issue, too. 

Our world is changing tremendously because of the medical technology that’s out there. But I have to say with that, we are going 

to have to start looking at things because, you know, when you do 

the genetic testing or if you—I’m working with Dr. Watson, who is 

doing—looking into cancer, so we can have the markers. And so it’s 

going to be a new world probably within 5 years even more advanced than what we have out there today. 

So I appreciate any insight any of you have on that. 

Dr. HUDSON. Well, you’re exactly right that the fear of the misuse of this information is very widespread. We’ve been doing town 

halls around the country this summer and talking to citizens in cities across the United States. And recurrently, the biggest concern 

that they share with us is their fear if they have this test results, 

it may be misused. 

Mr. Lorber raised the issue of, well, there’s not really a whole lot 

of genetic discrimination cases being brought. But in those that 

have been brought, it has not been a normal American. It has been 

extraordinary individuals who have learned about this discrimination and pursued it. 

Because in these cases, the employers aren’t saying, oh, and by 

the way, we’re doing these genetic tests. This was secretive genetic 

testing, and the fact that it was uncovered at all is a fairly remarkable testament to the individuals who were involved in that case. 

So it is not widespread cases, but the cases that have been 

brought should reflect to us that it’s not unheard of that these 

cases are happening. So I agree with you there. 

The other point I’d like to make is that even without widespread 

discrimination, the fear that citizens have is going with them into 

their doctor’s office and influencing their decisions of whether or 

not to have a genetic test and whether or not to participate in genetic research. We know this is happening. It’s damage now, it’s 

damage today, it’s damage that we can do something to prevent. 

Mrs. MCCARTHY. And just to follow up, I’d like to go backwards, 

because I always like to go back in history, especially medical history. It wasn’t that long ago, 30 years ago, when we started discovering more and more women were getting breast cancer, and no 

one in the family would even talk about cancer, mainly because 

they felt they would be discriminated against. 

We got over that. We did pass laws to make sure that someone 

couldn’t be discriminated against, and this is what we’re dealing 

with now, because we’re into a different world of medicine. 

Dr. LICATA. If you’d like the answer to the question about the individual’s remedies, there’s actually in terms of this concept I’m 

trying to promote about if people understand, everybody understands the rules that we’re playing under and what’s important to 

each stakeholder, that you can come up with good solutions, is that 

the currently pending House version took a more traditional litigaVerDate 0ct 09 2002 19:05 Dec 05, 2004 Jkt 000000 PO 00000 Frm 00059 Fmt 6633 Sfmt 6602 H:\DOCS\94940 EDUWK PsN: NNIXON
56

tion mindset. So if you were wronged, what could you do as the employee? Well, you could go to court, and the court could award appropriate legal or equitable relief and attorney’s fees, including the 

cost of expert witnesses, which you would definitely need in a case 

like this. In cases where your plan sponsor or your insurer violated 

any of the provisions. It was a very broad, general type term you 

see in Federal legislation. 

And there was provision also for civil penalties that were fairly modest, $50,000 for a first violation, $100,000 for subsequent violations, and it was paid to the government, and there was provisions 

for private right of action. So basically, if something happened that 

the law was violated, you had—you basically would have to be one 

of these extraordinary individuals to basically be able to go through 

all of this litigation. 

What I particularly think is a great provision is what are people 

afraid of? I’m going to lose my health insurance. 

Mrs. MCCARTHY. Right. 

Dr. LICATA. Right? Isn’t that the issue? 

Mrs. MCCARTHY. Yes. 

Dr. LICATA. All right. What does the compromise bill do? It establishes additional enforcement for violations by allowing the participant or the beneficiary the right to benefits that they do under the 

plan without exhausting administrative remedies if doing so would 

cause irreparable harm to their health. 

OK. Right when you have the risk, when they need their doctor’s 

counsel, when they need the health services to possibly even mitigate downstream health issues, they would be able to keep their 

insurance or get it back fairly quickly. Great remedy. 

In addition, the court can reinstate the coverage retroactive to 

the date of violation. OK. There might be a period where the family 

can suffer, but they might not be forced into bankruptcy over these 

issues. It allows the Department of Labor—and this is great from 

my standpoint too—is I think the best way to get people to comply 

with the law is to let them know what the rules are and then say 

it’s a compliance issue. Build it into your cost of doing business. 

But frankly, it’s cheaper to do this than to contemplate litigation. 

What happens? You’re in violation. A hundred dollar a day fine. 

What’s your cap? Half a million dollars. OK, a business can deal 

with that. They can factor that in, and it would be stupid for them 

not to make a relevant plan of doing business that takes into consideration protection of this information. They do it for HIV. They 

do it for other very sensitive information. It’s something businesses 

know how to do. 

So here you have a rational proposal that allows the business to 

make good decisions, allows investors to make good investments in 

the health care industry going forward for the next decade, gives 

autonomy and protection to the individual. I mean, what a perfect 

balance. 

Mrs. MCCARTHY. Thank you. 

Chairman JOHNSON. The gentlelady’s time has expired. Mr. 

Payne, you’re recognized for 5 minutes. 

Mr. PAYNE. Thank you very much. This is a very interesting 

topic. I’m sorry I missed the testimony, and I might ask a question 

that may have been covered in the testimony. But I’d like to ask 

57

Ms. Hudson, Dr. Hudson, the principles of any generic nondiscrimination bill. 

Could you just briefly articulate the principles that any generic 

nondiscrimination legislation should encompass? And this business 

about core definitions. I didn’t get a chance to go through it, but 

I know that you highlighted the important of core definitions for 

any generic discrimination bill, and I wonder if you could comment 

on the existing definition, how many fall short in your opinion. 

Dr. HUDSON. So the definition in my view of a genetic test should 

incorporate analysis of DNA, of RNA, of proteins, of chromosomes, 

and also include beyond that the genetic test of information from 

family members. And the broad definition of genetic information 

really needs to include the family medical history information. 

So in talking about how that information can be used, I think we 

would all agree that it would be unjust if an individual’s employment was conditioned on the health of some blood relative. I think 

we would agree that it would be unjust if their employment were 

conditioned on whether or not they carried a genetic mutation that 

predisposed them to some genetic disease in the future. 

This does not restrict an employer’s ability to use information 

about a person’s current health that interferes with their ability to 

currently perform the essential functions of that job. So we’re not 

altering the ability of employers to make sure that their workforce 

is able to do the job. 

Mr. PAYNE. Thank you. Yes? 

Mr. LORBER. Well, I would just point out that Dr. Hudson talked 

about blood relative. H.R. 1910 is not restricted to blood relatives. 

It is absolutely not restricted to blood relatives. And indeed, I think 

1053 has the same infirmity. So that the extent to which we’re 

looking at genetic information which is genetically passed down 

through blood relatives, the bills don’t go beyond that, and that’s 

one of the problems. The bills are expanded beyond what science 

seems to think is appropriate. 

Mr. PAYNE. Dr. Licata, and then we could hear from Dr. Hudson 

again. 

Dr. LICATA. I think it’s a really important issue, because my initial position when I first started thinking about this issue, was as 

a scientist. And when I looked at it as a scientist, I said, why 

would you ever consider outside of someone that has a genetic link? 

Because that’s the relevant information. 

And it was pointed out to me something very important which 

completely altered my understanding of why the bill is crafted as 

it is, which is that we’re in the employment context, OK, we’re in 

the health care context for a family. If this information is available 

that someone in the family has a particular genetic marker, the 

record does not necessarily and probably would not reflect if that 

family member was adopted. 

So that what’s happening is the whole family, without a complex 

explanation or actually even—revealing even more private information, that a child was adopted or something, you know, there was 

some relationship in a family that was not as it might have appeared to be. 

They’re still going to have this issue of discrimination in the 

workplace, the health care issue, without explanation. What hapVerDate 0ct 09 2002 19:05 Dec 05, 2004 Jkt 000000 PO 00000 Frm 00061 Fmt 6633 Sfmt 6602 H:\DOCS\94940 EDUWK PsN: NNIXON
58

pens to them during that gap period? So I think that it makes a 

lot of sense to put the burden not on the individual but the burden 

on the employer, and then you can balance it out. But the information, it can still be explained, but the immediate reaction is it covers everybody without asking all of those underlying questions. 

Chairman JOHNSON. Mr. Lorber, do you care to follow up? 

Mr. LORBER. Yeah. The burden we’re talking about is the burden 

of litigation. And I simply want to point that out. And second, to 

the extent to which we’re talking about symptomatic conditions, 

they are covered by the ADA. To the extent we’re talking about 

asymptomatic conditions, the Supreme Court in the Bragden case 

talked about an 8 percent correlation between carrying an HIV 

gene and being HIV positive. Yet they found that sufficient to find 

coverage under the ADA. 

The point we’re trying to make is not that this is an issue which 

should be ignored. The point we’re simply trying to make is that 

this is an issue which we believe is susceptible to the vast body of 

law today, and the extent to which we’re dealing with a real problem, I don’t know that it’s sound public policy to pass yet another 

law to have another 18-month period before the law takes effect, 

which once the new law is passed, it will presumption that the old 

laws don’t cover this situation, have yet a new body of regulations. 

This doesn’t make any sense when we believe and we’ve stated 

in our testimony, and I think we’ve taken an expansive view, as 

Congressman Andrews noted, an expansive view, of what the ADA 

covers. We believe that this is the situation which should be protected against, but we believe that this is a situation which is protected against. And that’s the problem we’re dealing with. 

Do you really want yet another law on top of all the other laws 

and have some court, with all due respect, whether they’ll adopt 

one regulation or another regulation. Then we’re going to have the 

courts parsing or triaging among all these laws to determine what 

little niche this problem fits in. It doesn’t make any sense. And for 

the employers, the problems that Dr. Licata are talking about are 

problems of litigation, and they are very expensive. They are a disincentive to hiring, and they are a disincentive to providing the 

basic level of benefits that we want employers to provide. 

Mr. PAYNE. Let me just—I guess reclaiming my time, I guess I 

might have about 2 minutes left since you preempted my time—

I assume you’ll give me my time back. Thank you. I’m not a lawyer. I didn’t know the rules now. 

[Laughter.] 

Mr. PAYNE. Let me ask Dr. Licata if you would like to just comment briefly on that, and then I’d like to hear from Dr. Hudson and 

then one last short question. 

Dr. LICATA. And I guess the point is, is that I’m really concerned 

and what I think is the importance of this legislation is it is a way 

of managing information. It’s information that is very precious, and 

it’s information where we have to set forth a national public policy 

about how we’re going to do business with this type of information, 

and how we’re going to respect this information that belongs and 

can have such a huge impact on a personal interest. 

So what I suggest, and if you look at the problem, it’s how to 

properly manage the information in a business context. We know 

59

how to do that. And it’s by creating a scheme that has a basis of 

good regulations built on a good, rational law that allow people to 

know what the ground rules are. Once they know that, they will 

comply with the law so the rare case that’s going to be litigated is 

not what you should be afraid of. We should be worried about the 

huge cost of doing business and the huge cost to our medical economy, our health care economy, if we don’t step in and make some 

rational decisions now. 

Mr. PAYNE. Thank you very much. And Dr. Hudson? Thanks, Dr. 

Licata. 

Dr. HUDSON. Thank you. I’d like to respond to Mr. Lorber’s argument that it should be crystal clear to all of us that the ADA covers 

genetic discrimination based on predictive genetic information. He 

uses in support of that argument a Supreme Court case, Bragden 

v. Abbott. That was an HIV case. There is no HIV gene. There are 

a number of interesting correlations between the rationale that was 

used in that case. It was not a genetics case, and we have not tested whether or not the ADA does or does not cover genetic information. 

There are cases that are being brought under the ADA where 

people who have cancer are not being considered disabled under 

the ADA. The notion that somebody who is at risk of developing 

cancer would be covered under the ADA I think leaves a lot of uncertainty and thus the concern among the American public. 

Mr. PAYNE. Thank you. My time is probably—Mr. Lorber, I just 

want to ask a simple question. You could probably give another little response, so it’s giving you an opportunity. Let me just ask you, 

does the Chamber support the predisposition, that genetic disposition should be a disability under the ADA? 

Mr. LORBER. We believe it is. We believe the agency has stated 

that it is. 

Mr. PAYNE. And therefore the Chamber would support that? 

Mr. LORBER. The agency has taken that position. And we’ve endorsed that position in the testimony. 

Mr. PAYNE. And they agree with the ADA? 

Mr. LORBER. That the ADA covers this issue, yes. 

Mr. PAYNE. OK. Thank you. 

Chairman JOHNSON. Thank you, Mr. Payne. If you all have additional comments, we would accept them in writing. Mr. Lorber, let 

me just ask you one quick question. Do you know of any employer 

that is considering—that asks people that question about genetic 

history before they hire them? 

Mr. LORBER. Mr. Chairman, absolutely not. As I said, I’m Chairman of the Chamber’s EEO committee. We asked the Chamber 

members, we surveyed the Chamber members, does any employer—and there are a lot of employers who are members of the 

Chamber—conduct genetic testing, as for genetic information, want 

to have genetic information—let me go beyond the Chairman’s 

question. And the response was no, they don’t want it. They don’t 

need it. They don’t know what to do with it, and they’re afraid if 

they have it, they’re going to be sued under all the laws we’ve 

talked about. 

Chairman JOHNSON. Thank you. 

60

Mr. ANDREWS. Mr. Chairman, if I may, I have three unanimous 

consent requests—two unanimous consent requests. 

Chairman JOHNSON. Go ahead. 

Mr. ANDREWS. One is I’d like to enter into the record a list of 

23 national health care and advocacy organizations that are in support of genetic non-discrimination legislation. The second is, I have 

statements from our colleague, Congresswoman Slaughter, who has 

introduced an excellent bill, and from Senator Gregg, who championed the bill in the Senate. I’d ask that those be entered into the 

record. 

The final, if I could make one more—

Chairman JOHNSON. Without objection, so ordered. 

Mr. ANDREWS. Thank you. Let’s be careful when we talk about 

employers asking for information to also understand that health insurers may ask for information, which is where the rubber really 

meets the road. 

Mrs. MCCARTHY. Mr. Chairman, may I ask one question that I’m 

confused on? I know you want to leave. 

Chairman JOHNSON. Go ahead, Mrs. McCarthy. 

Mrs. MCCARTHY. I’ll go down there and talk to—

Chairman JOHNSON. I might add, you’ve had 4 minutes already. 

We’ll give you one more. 

Mrs. MCCARTHY. Well, there’s only a few of us here. 

Chairman JOHNSON. One for the road. 

Mrs. MCCARTHY. Let me understand something. Let’s just say I 

go to the dentist and obviously they basically ask me for my medical history, has anything changed, and I say no, whatever. But 

supposing I did tell them, all right, I’ve just discovered I have this. 

Now when I go outside, each and every one of us nowadays has to 

sign a form that says that we are—the Privacy Act—that we are 

doing this. I’m not so concerned about my doctor having all the information in the world. But I also know if I’m going to a new insurance company, they are going to research my past history of health 

care, wherever I have been in the last two, three, 5 years. Now if 

I come up, just say, with something genetic and I’m going to tell 

my doctor that because I wanted him to know, you know, what I’m 

dealing with, then eventually, if I change insurance companies and 

another insurance company gets the information from my doctor, 

how do we protect our patients? 

Mr. WILDSMITH. Actually, in the group market, if you get your 

coverage through an employer, they are not going to go back and 

pull your medical history. 

Mrs. MCCARTHY. That’s actually the part I wanted to know. I 

never was clear on that issue. 

Chairman JOHNSON. We’ll call you ‘‘ten minute McCarthy.’’ 

Thank you, ma’am. 

Listen, I want to thank the witnesses for their valuable time and 

your testimony and both the witnesses and members for their participation and let you know that if you have something to hand us 

in writing, we’ll take it. 

If there’s no further business, the Committee stands adjourned. 

[Whereupon, at 11:41 a.m., the Subcommittee was adjourned.] 

[Additional material submitted for the record follows:]

61

Statement of Hon. Judd Gregg, a U.S. Senator from the State of New 

Hampshire, Submitted for the Record 

The rapid advances in the science of genetics are creating opportunities for all of 

society that must not be hindered. At the same time, these same advances, and the 

prospects for legislating in this area, rightly raise serious challenges and concerns 

that must be fully understood and addressed. I commend Chairmen Boehner and 

Johnson for holding this hearing to review the important implications of genetic 

non-discrimination for workers and employers. 

Last year we celebrated the 50-year anniversary of the now fabled discovery by 

Watson and Crick of the double helix. Also last year, the Scientists at the NIH 

Human Genome Project completed the sequencing of human DNA. These are major 

historical developments that will permanently change the course of biological 

science. 

As the science has progressed, so too have reservations with what we will do with 

this new information we are uncovering. This new understanding of the genetic 

basis of disease holds dangers as well as opportunities. Although we have yet to see 

proof of widespread discrimination, it is difficult to ignore the few, albeit egregious, 

cases that have been publicly documented. 

Further, we know that individuals are afraid to get genetic tests or seek genetic 

counseling out of fear that they will lose their health insurance or face discrimination in their employment. The medical progress made possible by genetic research 

is dependent on the willingness of study volunteers and patients to undergo genetic 

testing. However, such consent can be difficult to obtain today. Fears about the possible misuse or unauthorized disclosure of genetic information appear to adversely 

impact the desire of individuals to participate in genetic research. Such fears also 

extend to clinical practice, discouraging both patients and providers from taking full 

advantage of genetic tests and technologies. For instance, a national telephone survey of more than 1,000 people found that 63 percent of respondents said they would 

not take genetic tests if health insurers or employers could get access to the results. 

Because our public policies lag behind the science, the promise of the Human Genome Project is going unfulfilled. Fear of discrimination, or even potential discrimination, threatens society’s ability to use new genetic technologies to improve human 

health and the scientific community’s ability to conduct research needed to understand, treat, and prevent disease. 

After six years of dialogue, numerous hearings, and hours of deliberation, I am 

pleased that the Senate adopted important legislation in this field which was unanimously reported out the Health, Education, Labor, and Pensions Committee. I am 

also pleased that the first civil rights legislation adopted under my Chairmanship 

deals with an issue of true 21st Century concerns. This is the first civil rights act 

of the 21st Century. 

Summary of S.1053, the Genetic Information Nondiscrimination Act 

The Genetic Information Nondiscrimination Act, which passed the Senate on October 14, 2003 by a vote of 95 to 0, establishes in federal law basic legal protections 

that prohibit discrimination in health insurance or employment based on genetic information. It is our belief that establishing these protections will allay concerns 

about the potential for discrimination and encourage individuals to participate in 

genetic research and to take advantage of genetic testing, new technologies, and 

new therapies. 

I want to acknowledge that in drafting this legislation we encountered many challenges. There are numerous, and sometimes conflicting, statutes in both the health 

and employment fields that had to be reconciled. Likewise, we devoted considerable 

attention to crafting definitions that matched the developing science of genetics, as 

well as fit with the realities of the workplace and benefits practices. 

The legislation provides substantive protections to those individuals who may suffer from actual genetic discrimination now and in the future. Further, it establishes 

clear, common sense rules that will prevent confusion, litigation, and, most importantly, discrimination. 

• A key component of the legislation is its privacy provisions. Although current 

law already contains medical privacy rules covering genetic information, this 

legislation addresses some additional concerns and closes loopholes that are 

unique to genetics. For instance, it protects the privacy of genetic information 

at work and prohibits the use of genetic information in health insurance underwriting. 

• This bill prohibits an employer from making employment decisions (hiring, firing, etc.) based on genetic information, or even the fact that an individual or 

family member requested or received genetic services. 

62

• This bill prohibits health insurance plans from denying eligibility or enrollment 

in the health plan based on genetic information. And it prohibits health insurance plans from charging higher premiums based on an individual’s—or his or 

her family member’s—genetic information. • Most importantly, the legislation recognizes that all individuals, whether they 

are healthy or sick, and ALL medical information, whether genetic or otherwise, 

should be afforded the same protections under law. 

While genetic discrimination may not be widespread at this point in time, this legislation ensures that discriminatory practices will never become common practice. 

From the past we have learned that employees, employers, insurers and others all 

work best together when the rules are clear and opportunities for personal achievement and health are available. This legislation tells everyone what is expected of 

them and avoids the trip wires and uncertainty of some of our existing laws. 

Unlocking our genetic code unleashes new power. And power produces new responsibilities in protecting the privacy of our genetic information and protecting it 

from misuse. It is my sincere belief that any concerns about new regulations on employers or health plans are far outweighed by the benefits of scientific advances that 

will further revolutionize the medical field. With no silver bullet solution in sight 

to cure what ails our expensive and troubled health care system, I believe all stakeholders—employees, insurers, health providers, as well as the employers that provide the health care benefits—will welcome reasonable legislation that fosters medical advances that can lead to the prevention and cure of disease. 

Statement of the Society for Women’s Health Research, Submitted for the 

Record 

The Society for Women’s Health Research supports a ban on discrimination by 

health insurers and employers on the basis of predictive genetic information. For 

several years the Society has endorsed genetic nondiscrimination legislation. Today 

we urge the House Education and the Workforce committee to consider and pass 

S. 1053, the Genetic Information Nondiscrimination Act. S. 1053 passed the Senate 

unanimously and is supported by the Administration. 

Over the past several years, remarkable advances have been made in the field of 

human genetics that hold extraordinary promise for improving the health and quality of life for millions of Americans. Scientists can use predictive genetic testing to 

determine an individual’s susceptibility to illnesses such as breast and ovarian cancer, colon cancer, amyotrophic lateral sclerosis (ALS), and Alzheimer’s disease. The 

availability of this information can help people make informed decisions about prevention and treatment options, and allow them to live longer and healthier lives, 

However, the ability to determine genetic predisposition to disease can also have 

negative repercussions. Many people who might be helped by genetic testing are 

afraid to take advantage of this medical technology because of tears that their genetic information will be used against them. Health insurers may deny coverage to 

individuals who carry genetic mutations that may cause theta to develop serious or 

debilitating diseases later in their lives. As a result, many individuals choose not 

to undergo genetic testing or to take part in medical research. 

The Society is particularly concerned about the impact of genetic discrimination 

on the participation of women in clinical trials. For over a decade, the Society has 

worked to secure the inclusion of women in medical studies, and to encourage them 

to take part in this research. However, women will be reluctant to enroll in clinical 

trials if they fear that their medical information will be used against them by health 

insurers and employers. Without a guarantee of protection from genetic discrimination, all of the progress which has been made in ensuring that women have access 

to clinical trials will be of little value, and both women and research will suffer. 

The Society encourages the passage of S. 1053, the Genetic Information Nondiscrimination Act, which will allow Americans to utilize the enormous potential of 

genetic testing and further medical research. 

Statement of the UJA–Federation of New York, Women’s Public Policy Task 

Force, Submitted for the Record 

The UJA–Federation of New York Women’s Public Policy Task Force submits this 

testimony to with regards to The Genetic Information Nondiscrimination Act of 2003 

(S. 1053). This historic act will prohibit discrimination as a result of genetic information with regard to health insurance and employment. 

UJA–Federation of New York is an umbrella organization that raises funds 

through an annual campaign of more 77,000 donors and distributes the funds to a 

63

network of more than 100 member agencies serving the greater metropolitan area 

of New York. The Women’s Public Policy Task Force of UJA–Federation of New 

York is an advocacy group comprised of volunteers and professionals seeking to 

work with state and federal legislative bodies in an effort to improve the lives of 

women and thus strengthen all communities. 

The issue of genetic testing has become increasingly relevant as the mapping of 

the Human Genome has been completed and as new advances in science and technology are continuously being discovered. Many potentially life-saving genetic tests 

have been developed, allowing people to identify their personal risk profile for developing certain diseases in the future. While the findings of most tests do not guarantee the development of a disease, the knowledge that a genetic predisposition exists gives a person the opportunity to take steps that may prolong or enhance the 

quality of life. 

The genetic testing issue has specific relevance to the Jewish community. Specific 

mutations of two genes, commonly known as BRCA1 and BRCA2, have been proven 

to indicate a greater risk of developing breast cancer (it is strongly suspected by the 

medical community that both of these mutated genes could also cause prostate/colon 

cancer). These genes are prevalent among Ashkenazi Jewish women. As early detection leads to the highest breast cancer survival rates, it is beneficial for a woman 

to find out whether she is at increased risk; having that knowledge would allow her 

to be vigilant and ensure early detection. Women should be free to use this genetic 

technology without fear of discriminatory ramifications. 

Despite the potential benefits of this genetic test, studies have shown that women 

are not likely to undergo a genetic test, regardless of whether the test would be for 

their own health reasons or as part of a scientific research project. The reason why 

people are shying away from genetic testing is a pervasive fear of discrimination. 

Many people genuinely believe that their eligibility for health insurance or employment opportunities may be compromised based on their genetic information. 

Underlying the fear of discrimination is the issue of privacy and the fact that people feel that their private genetic information is not protected and can be disclosed 

to any employer or insurer. While protections relating to health insurance, employment and privacy do exist to some extent, they are clearly not sufficient to allow 

people to be tested with confidence that there will be no negative repercussions. Discovering an increased risk of disease is traumatic enough without having to worry 

about losing employment or insurance coverage. Existing protections must be improved and better communicated to the public. It is unacceptable to allow important 

research to falter and to let life saving genetic advances go to waste. 

The bipartisan Genetic Information Nondiscrimination Act of 2003 (S. 1053) addresses these legitimate fears. This legislation will establish strong protections 

against discrimination based on genetic information both in health insurance and 

employment. Support for the bill has come from a wide range of organizations representing patients, medical professionals, families and employees. We should give 

all Americans the comprehensive protections against genetic discrimination in 

health insurance and employment they deserve by enacting this important legislation. 

With regard to health insurance discrimination, the Act will: 

• Prohibit enrollment restriction and premium adjustment on the basis of genetic 

information or genetic services. 

• Prevent health plans and insurers from requesting or requiring that an individual take a genetic test. 

• Prevent health plans and insurers from pursuing or being provided information 

on predictive genetic information or genetic services prior to enrollment—the 

time when this information is most likely to be used in making enrollment decisions. 

• Cover all health insurance programs, including those regulated by the federal 

government under ERISA, state-regulated plans, Medigap, and the individual 

market. 

With regard to employment discrimination, the Act will: 

• Prohibit discrimination in hiring, compensation, and other personnel processes. 

• Prohibit the collection of genetic information. 

• Require genetic information possessed by employers to be confidentially maintained and disclosed only to the employee or under other tightly controlled circumstances. 

• Cover employers, employment agencies, labor organizations, and training programs. 

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We are happy to support The Genetic Information Nondiscrimination Act of 2003 

(S.1053), legislation that will protect people from the threat that their genetic information can be used against them in any way. We hope that Members of the House 

will join Members of the Senate in passing this historic legislation. 

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

July 20, 2004

The Honorable Sam Johnson 

Committee on Education and the Workforce 

Subcommittee on Employer–Employee Relations 

House of Representatives 

Washington, DC 20515

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

On behalf of the CARES (Congenital Adrenal Hyperplasia Education and Support 

) Foundation, Inc., I thank you for holding this hearing on genetic nondiscrimination 

policies. This is an issue of great importance to people with Congenital Adrenal 

Hyperplasia (CAH) and their parents. 

CAH is a genetic condition which results in the body’s failure to produce either 

or both of two critical hormones, cortisol and aldosterone. With diagnosis and proper 

treatment, people with CAH can lead normal and healthy lives. In its classical form, 

it affects 1 in 12–15,000. In its non-classical form, it affects 1 in 100. It is one of 

the most common genetic diseases identified to date. 

As you know, genetic testing holds enormous promise to prevent health problems 

and help people cope more effectively with conditions that are unavoidable. In the 

case of CAH, genetic testing can determine whether parents are carriers of the gene 

variants that cause CAH. In addition, genetic testing of a fetus can help begin treatment for this condition even before birth. 

Unfortunately, the same technologies that predict disease through genetic testing 

and family history can be used to open the door to discrimination. Currently there 

is no federal standard in place to prevent to use of genetic information to deny people with CAH jobs or insurance coverage. 

This is of personal concern, as my six-year-old son has classical CAH. Not that 

anyone could tell; he is a healthy, active, and intelligent child. But because of his 

genetic condition, he is at risk of facing discrimination from employers and insurers; 

as parents, we already worry about our family insurance coverage. 

As Senate Majority Leader Frist stated on the Senate floor about genetics nondiscrimination legislation: ‘‘As we greet the future, as we look at new technology, 

this is just one example of this body acting proactively, acting preemptively, so that 

such potential use in a discriminatory fashion of medical advances is kept from 

hurting the American people. We must take care to protect our body politic, and this 

legislation does just that.’’

Thank you again for holding this hearing, and the CARES Foundation, Inc. urges 

you to support the enactment of genetics nondiscrimination legislation in order to 

protect our children.

Sincerely,

Mark Engman 

Member of the Board of Trustees 

CARES Foundation, Inc. 

(Congenital Adrenal Hyperplasia Research, Education and Support) 

Statement of United Cerebral Palsy, Submitted for the Record 

United Cerebral Palsy (UCP) thanks you, Mr. Chair, for conducting this hearing 

on the crucial issue of discrimination based on genetic information, and urges you 

to give the issue further serious consideration for meaningful action by the House 

before this Session of Congress ends. 

For 50 years, UCP has been committed to change and progress for persons with 

disabilities. The national organization and its nationwide network of 105 affiliates 

in 37 states strive to ensure the inclusion of persons with disabilities in every facet 

of society—from the Web to the workplace, from the classroom to the community. 

As one of the largest health charities in America, UCP’s mission is to advance the 

independence, productivity and full citizenship of people with cerebral palsy and 

other disabilities, through our commitment to the principles of independence, inclusion and self-determination. An integral, and often overriding, part of our mission 

65

is to ensure that people who experience disability are free from discrimination in 

all facets of American society, most especially in the workplace and in the health 

care and health insurance arenas. 

Clearly, at the dawn of the 21st Century, medical and scientific advancements, 

including genetic testing, can improve our lives. Genetic testing can provide information on how we can prevent future health problems and cope more effectively 

with unavoidable conditions. As advocates for people who daily face discrimination 

on many fronts simply because they have a disability, however, we are concerned 

that the ability to predict disease and disability through genetic testing and family 

history, as valuable as it is, opens the door for yet another form of discrimination 

in those extremely sensitive areas of employment and health care. Employers, for 

instance, finding that there is a genetic marker for disease or disability (e.g. breast 

cancer, diabetes, some forms of dwarfism, certain learning disabilities, might refuse 

to hire a person, assuming there may be an impact on the business, and the ‘‘bottom 

line,’’ if the person actually contracts the disease or disability in the future. Insurance companies might refuse to cover people with genetic markers for ‘‘high-cost’’ 

conditions, or impose restrictions on coverage. 

We were extremely gratified and encouraged when the Senate worked hard, 

achieved a compromise and passed the Genetic Information Non–Discrimination 

Act, S. 1053, in October of 2003. We have also been happy to see that President 

Bush has expressed strong support for the legislation and promised to sign a bill 

that mirrors the Senate’s provisions. We are further encouraged that this Subcommittee is holding a hearing on the issue. 

Now it is up to the House of Representatives to pass S. 1053, or similar legislation, in order to protect American citizens from the vulnerability experienced by 

those who are discriminated against for characteristics, in this case literally imperceptible genetic characteristics, over which they have no control. 

We ask you, as a follow-up to this hearing, to support a vote on S. 1053, or to 

move similar legislation through the House as soon as possible. 

Statement of the Digestive Disease National Coalition, Submitted for the 

Record 

The Digestive Disease National Coalition (DDNC) applauds Chairman John 

Boehner (R–OH) and the members of the House Committee on Education and the 

Workforce for initiating this important hearing on Genetic Discrimination. 

Established in 1978, the Digestive Disease National Coalition (DDNC) is a national non-profit advocacy organization comprised of the major gastrointestinal voluntary patient organizations and professional societies. Currently there are 26 

member organizations that belong to the DDNC. The mission of the Digestive Disease National Coalition (DDNC) is to work cooperatively to improve access to and 

the quality of digestive disease health care in order to promote the best possible 

medical outcome and quality of life for current and future patients with digestive 

diseases. The DDNC has supported and advocated for genetic non-discrimination 

legislation for many years 

The Digestive Disease National Coalition enthusiastically endorses the passage of 

H.R. 1910, The Genetic Nondiscrimination in Health Insurance and Employment 

Act as well as S. 1053, the Genetic Information Nondiscrimination Act of 2003. The 

DDNC urges the committee to pass these bills quickly so that Congress can finally 

address an issue that has dangerous repercussions for millions of Americans families. H.R. 1910, is bipartisan legislation introduced by Congresswoman Louise 

Slaughter (D–NY) with currently 241 cosponsors including 27 members of the Education and the Workforce committee. S. 1053 was introduced by Senator Olympia 

Snowe (R–ME) and passed the Senate unanimously in October 2003. 

This legislation has the potential to assist families, with inherited chronic and 

catastrophic disorders, to be able to live without fear of losing their health insurance 

coverage or their jobs. Without safeguards in place employers and health insurance 

providers could subvert science to meet their financial bottom line. 

The DDNC calls on Chairman Boehner and members of the committee to pass 

H.R. 1910, The Genetic Nondiscrimination in Health Insurance and Employment 

Act and S. 1053, The Genetic Information Nondiscrimination Act of 2003 as quickly 

as possible. 

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

July 20, 2004

66

The Honorable Sam Johnson, Chairman 

Employer–Employee Relations Subcommittee 

Committee on Education and the Workforce 

U.S. House of Representatives 

Washington, DC 20515

Dear Chairman Johnson:

The American Academy of Pediatrics urges prompt passage of federal legislation 

that would prevent genetic discrimination, thereby allowing continued progress in 

prevention efforts through genetic screening and ensuring that all children have access to health insurance coverage. The American Academy of Pediatrics is an organization of 60,000 primary care pediatricians, pediatric medical subspecialists and 

pediatric surgical specialists dedicated to the health and well being of all infants, 

children, adolescents, and young adults. 

The American Academy of Pediatrics strongly supports efforts to enhance, improve and expand the ability to provide newborn screening, counseling and health 

care services. Advances in genetic research promise great strides in the diagnosis 

and treatment of many childhood diseases, detected as early as the newborn period 

or later in childhood. With early identification and timely intervention, we have the 

ability to significantly reduce morbidity, mortality and associated disabilities in infants and children affected with certain genetic, metabolic and infectious conditions. 

With these opportunities, however, we also have a responsibility to ensure that 

careful consideration is given to the testing and screening of children so that emerging technologies are used in ways that promote the best interest of patients and 

their families. Potential benefits of genetic screening and testing are limited by the 

risks of harm that may be done by gaining certain genetic information, including 

potential for discrimination by insurers and employers. For this reason the American Academy of Pediatrics supports passage of legislation that protects children 

and families from genetic discrimination. 

Furthermore, the American Academy of Pediatrics is concerned that genetic discrimination is a barrier for families to access health insurance for their children. 

More than 9 million children are currently uninsured in this country, and millions 

more are underinsured. We will never achieve our goal of ensuring that every child 

has health insurance coverage if genetic discrimination is permitted. The American 

Academy of Pediatrics therefore urges Congress to pass legislation that protects 

American families from genetic discrimination.

Sincerely,

Carden Johnston, M.D., FAAP 

President 

American Academy of Pediatrics 

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

The Arc of the United States thanks the House Committee on Education and the 

Workforce Subcommittee on Employer–Employee Relations for holding this important hearing on the crucial issue of discrimination based on genetic information. We 

urge you to give the issue serious consideration for action by the House before the 

close of the 108th Congress. 

The Arc of the United States (The Arc) is the national organization of and for people with mental retardation and related developmental disabilities and their families. Through its approximately 900 state and local chapters, The Arc is devoted to 

promoting and improving supports and services for people with mental retardation 

and their families. The association also fosters research and education regarding the 

prevention of mental retardation in infants and young children. An integral part of 

our mission is to ensure that people who experience mental retardation or related 

disabilities are free from discrimination in all facets of society, including in the 

workplace and in the health care and health insurance arenas. 

As you know, genetic testing can improve our lives by providing information on 

how we can prevent future health problems and cope more effectively with unavoidable conditions. As advocates for people with mental retardation who daily face discrimination, however, we are concerned that the ability to predict disease and disability through genetic testing and family history, as valuable as it is, opens the 

door for yet another form of discrimination in the extremely sensitive areas of employment and health care coverage. 

We are very concerned about the possible misuse of genetic information for families where mental retardation or related disabilities are present or predicted. With 

evidence of genetic markers for impairments (such as Down Syndrome, Fragile X 

67

1 The ACT Trial is funded by the Alpha–1 Foundation and conducted at the Medical University of South Carolina under the direction of Dr. Charlie Strange, Program Director. The ACT 

Trial offers a free and confidential finger-stick test that can be completed at home with results 

mailed directly to the participants. The test is administered through a research study which 

evaluates perceived risks and benefits of genetic testing. For more information or a test kit 

please email the Registry Coordinator at alphaone@musc.edu, or call toll free at 1–(877)–886–

2383. 

Syndrome, and others) in individuals or their children, insurance companies might 

refuse to cover people with potential for ‘‘high-cost’’ conditions, or impose restrictions 

on coverage for ‘‘pre-existing conditions’’. In addition, employers, finding that there 

is a genetic marker for a disability, might refuse to hire a person, assuming there 

may be an impact on the company’s health insurance premiums, absenteeism, or 

other costs of doing business, if the employee should give birth to a child with the 

disability in the future. 

Last fall, the Senate, achieved a compromise and passed the Genetic Information 

Non–Discrimination Act, S. 1053. President Bush has expressed strong support for 

the legislation and promised to sign a bill that mirrors the Senate’s provisions. We 

are encouraged that the Subcommittee on Employer–Employee Relations is holding 

this hearing on the issue. 

We urge the Subcommittee and the full House of Representatives to pass S. 1053, 

or similar legislation, in order to protect American citizens from the vulnerability 

experienced by those who are discriminated against for genetic characteristics. We 

would be happy to assist the Subcommittee regarding the issues that could affect 

people with disabilities and their families. 

Statement of the Alpha–1 Association and the Alpha–1 Foundation, 

Submitted for the Record 

Last fall the Senate passed the Genetic Information Nondiscrimination Act of 

2003 by a vote of 95 to 0 giving us great hope that federal protections against the 

misuse of genetic information would finally be put into place. The Alpha–1 Association and Alpha–1 Foundation support S. 1053 and H.R. 1910 believing there is a 

great need to protect all Americans from genetic discrimination. 

We need to live without fear of retribution in the form of genetic discrimination. 

In the absence of federal legislation, states have implemented a patchwork of laws 

that shield individuals from employment and insurance discrimination. We need national policy to ensure that all Americans have the same protections. Genetic testing 

allows individuals to exercise preventative health measures, seek appropriate therapies, and engage in essential life planning. Unfortunately, this same information 

may be used to discriminate against individuals who have no control over their inherited condition. S. 1053 and H.R. 1910 protect individuals who fear that genetic 

information could be misused to ruin job opportunities, forcing them to choose between the benefit of testing and the risk of losing employment or insurance. 

Why are S. 1053 and H.R. 1910 important to individuals with Alpha–1? 

• As a genetic condition, those with Alpha–1 or seeking Alpha–1 testing may face 

health and employment insurance discrimination. Fear of genetic discrimination 

may also significantly impact individual and family decision making. • The Alpha–1 Foundation’s Ethical Legal and Social Implications (ELSI) Working Group, has continued to discourage general population screening in absence 

of protective legislation. • Those concerned about the ethics of genetic testing have recommended Targeted 

detection for Alpha–1 for those currently suffering from defined lung disease 

such as COPD or a family history of Alpha–1. 

• The Alpha–1 Coded Testing Trial1 has offered individuals an opportunity to receive confidential test results since September of 2001; to date over 2,400 test 

kits have been requested. Of those returning the test kits and responding to the 

survey questionnaire: 

- Over 30% report fear of losing insurance as the reason for seeking confidential testing; 

- 34% report concern about facing higher health care costs if results were 

public; 

- 85% seek testing for the Genetic Knowledge. In fact, this was the most 

popular response to the perceived benefits of seeking testing. 

Alpha–1 Antitrypsin Deficiency is an inherited genetic disorder that can result in 

devastating and fatal lung disease that is often misdiagnosed as asthma or Chronic 

Obstructive Pulmonary Disease. Alpha–1 afflicts an estimated 100,000 individuals in 

68

the US with fewer than 6,000 accurately diagnosed. Alpha–1 is a major cause for 

lung transplantation in adults and the second leading cause of pediatric liver transplants. 

Letter from the National Marfan Foundation, Submitted for the Record 

July 21, 2004

The Honorable Sam Johnson, Chair 

House Education and Workforce Committee, Subcommittee on Employer–Employee 

Relations 

2181 Rayburn House Office Building 

United States House of Representatives 

Washington, DC 20515

The Honorable Robert E. Andrews, Ranking Member 

House Education and Workforce Committee, Subcommittee on Employer–Employee 

Relations 

2181 Rayburn House Office Building 

United States House of Representatives 

Washington, DC 20515

Dear Chairman Johnson and Ranking Member Andrews:

On behalf of the National Marfan Foundation, I would like to submit this statement on Genetic Non–Discrimination. The National Marfan Foundation represents 

approximately 20,000 members throughout the United States. Marfan syndrome is 

a life threatening genetic disorder that results in weakening of the aorta, the main 

artery that carries blood away from the heart. With time, progressive enlargement 

of the aorta causes leakage of the aortic valve or tears in the aorta wall, which in 

some instances can cause death within a few minutes. 

In 1991, researchers discovered the gene responsible for Marfan syndrome, 

fibrillin–1. This was a dramatic step to help understand the underlying causes of 

the syndrome and the hope to finding treatments that may cure this disorder. Individuals with Marfan syndrome now face the fear of being labeled as having a genetic disorder, a label which employers and health insurers may use to deny their 

access to employment and healthcare. This discrimination causes under utilization 

of genetic tests that may be used to help diagnose other members of the family and 

ultimately save their lives. 

The National Marfan Foundation urges you to consider federal legislation that 

contains strong genetic discrimination protections as described by the Coalition of 

Genetic Fairness. Passage of legislation this year would greatly benefit the millions 

of people affected with a genetic disorder.

Sincerely,

Josephine Grima, Ph.D. 

Director of Research and Legislative Affairs 

National Marfan Foundation 

Letter from the American Association for the Advancement of Science, 

Submitted for the Record 

July 20, 2004

The Honorable Sam Johnson 

U.S. House of Representatives 

1211 Longworth House Office Building 

Washington, DC 20515

Dear Representative Johnson:

On behalf of the American Association for the Advancement of Science (AAAS), 

I am writing to bring to your attention the conclusions of a AAAS working group 

concerning the need to protect against genetic discrimination. 

The completion of the human genome sequence has raised hopes of a medical revolution, but to take full advantage of this momentous achievement, we must ensure 

the highest levels of public confidence that genetic information will be used appropriately to improve health and not to discriminate unfairly against people. The Senate has taken a great stride toward this goal by passing S. 1053, the Genetic Information Nondiscrimination Act, which is consistent with the conclusions of our working group. AAAS encourages the House to consider similar action as it deliberates 

on H.R. 1910. 

69

The working group released a statement in 1999 which included the following conclusions: • Individuals should be able to gain information about their genetic makeup, but 

should be able to protect themselves against discrimination by controlling access to such information. • Genetic information should be used only to enhance, not undermine, an individual’s quality of life. Society, therefore, in pursuit of the common good, has a responsibility to protect citizens against the misuse of genetic information. • Policies should be adopted to ensure opportunities for people to participate in 

research studies and clinical trials without fear that their genetic information 

could adversely affect their health insurance status. 

Founded in 1848, AAAS is the world’s largest general scientific society and publisher of the journal, Science. The Association serves some 262 affiliated organizations in more than 130 countries, serving some 10 million individuals. The non-profit AAAS is open to all and fulfills its mission to ‘‘advance science and serve society’’ 

though initiatives in science policy and more. 

The complete genetic discrimination working group statement is available on the 

AAAS website at http://www.aaas.org/spp/dser/bioethics/resources/gdiscrim.shtml. 

For further information, please do not hesitate to contact Joanne Padron Carney of 

the AAAS Center for Science, Technology, and Congress at 202/326–6798, or you 

may call my office.

Sincerely,

Alan I. Leshner 

Statement of the Genetic Alliance, Submitted for the Record 

The Genetic Alliance is an alliance of genetic disease advocacy groups, which represent millions of individuals. We understand the promise of advanced medical research and are appalled that many families and individuals have experienced genetic discrimination. 

We urge the House of Representatives to consider and pass the Genetic Information Nondiscrimination Act [S. 1053], to prohibit discrimination on the basis of genetic information with respect to health insurance and employment. We believe that 

all genetic information, including family history, deserves strong and enforceable 

protections against misuse in health insurance and employment. Such safeguards 

will protect the rights, privacy and confidentiality of the individual and their family. 

This is an exciting and hopeful time for medicine. It is imperative, however, that 

we, the public, be able to take full advantage of new medical advances that could 

help prevent disease before it develops. Genetic nondiscrimination legislation will 

reduce the likelihood of genetic information being misused in health insurance or 

employment decision-making. Genetic information is merely predictive information. 

Simply having a positive genetic test does not mean one will develop a disease—

thus this information should not be used to make decisions about insurance coverage or employment. 

As biomedical research advances, genetic testing will become a critical tool in the 

provision of healthcare. As a result, many more people will know about their own 

genetic makeup, putting them at risk of genetic discrimination. People who would 

like to avail themselves of genetic testing already have enough to worry about. They 

should not have the additional burden of genetic discrimination. 

And so, on behalf of thousands of consumers and patient groups, we urge Speaker 

Hastert to move S. 1053 off the desk and bring it to a vote. President Bush has 

said he’ll sign it. Public policy must keep pace with scientific advances, and provide 

those advances with a climate conducive to their translation into health benefits for 

all Americans. 

Statement of the American Academy of Family Physicians, Submitted for 

the Record 

The 93,700 member American Academy of Family Physicians submits this statement for the record in support of HR 1910/S 1053, the Genetic Information Nondiscrimination Act of 2003, which would prohibit genetic discrimination in health 

insurance and employment. The AAFP strongly supports effectively translating genetic advances to the practices of primary care physicians, who provide most of the 

health care the majority of Americans receive. Primary care physicians will need to 

receive appropriate education and training, and research translation needs to include the development of primary care tools for delivering the fruits of genetic adVerDate 0ct 09 2002 19:05 Dec 05, 2004 Jkt 000000 PO 00000 Frm 00073 Fmt 6633 Sfmt 6621 H:\DOCS\94940 EDUWK PsN: NNIXON
70

vances to all Americans. Nevertheless, Americans must be legally protected from 

discrimination based on their genetic make up, which is the goal of this legislation. 

Background 

Completion of the sequencing of the human genome of April 2003, inaugurated 

an era in which genetic information will become an increasingly indispensable part 

of quality health care. Researchers predict the advent of individualized treatment, 

ranging from preventive strategies to ‘‘designer drugs,’’ specifically formulated for a 

patient’s genetic makeup. 

With these potential benefits, however, comes potential for the abuse of personal 

information in non-healthcare settings such as insurance and in the workplace, 

abuses that the above measures have been designed to address. For example, HR 

1910/S 1053 would forbid insurance companies from restricting enrollment or changing premiums based on an individual’s genetic makeup. The bill also would ban discrimination based on genetic information in the workplace. Underpinning these 

issues are patients’ concerns about the privacy of their genetic information and informed consent. In short, with the proliferation of new genetic information, lawmakers must determine how to protect this sensitive health data. 

Relationship to Primary Care 

In addition to concerns about discrimination, family physicians are keenly interested in the impact that genetic information will have on their individual practices. 

Specifically, family physicians want genetic research translated into information 

that can be used to help their patients. Family physicians do address patients’ illnesses, but more importantly, they help patients integrate information about all of 

their health conditions with their particular life goals. This important family practice function will need new tools to deal with genetic information, including the ability to perform diagnostic genetic tests in the physician’s office. 

Currently, family physicians conduct almost 200 million office visits each year, 

which is 73 million more visits than any other medical specialty. In addition, according to ‘‘The Ecology of Medical Care Revisited,’’ (New England Journal of Medicine, 

2001, 344:2021–25) more than 12 times as many people are seen in the offices of 

primary care physicians as in hospitals. The sheer number of visits to family physicians, as well as to other primary care doctors, means that most Americans will approach them first about questions on genetic information. We wish to be able to 

counsel our patients about these issues without fear that this information could 

somehow be used against them in insurance or employment. 

Education and Training 

Education and training of primary care physicians in genetic information, testing 

diagnosis and counseling is also critical. Long the province of subspecialists, the Genetics in Primary Care Initiative (GPC), supported by three federal agencies (Health 

Resources and Services Administration; National Human Genome Research Institute and the Agency for Healthcare Research and Quality) was established to ‘‘plan, 

implement, and evaluate outcomes of training programs in genetics.’’

As W. Burke, et al., point out, (‘‘Genetics in Primary Care,’’ Community Genetics, 

2002; 5:138–146) ‘‘Genetic tests have become increasingly accurate in diagnosing 

both chromosomal and single gene disorders and predictive tests have begun to 

emerge—’’ Primary care physicians need to be trained to administer and interpret 

these tests so that they can provide appropriate counseling and referrals. 

In addition, the Advisory Committee on Training in Primary Care Medicine and 

Dentistry, which Congress established to review primary care training programs 

that support family medicine, general internal medicine and pediatrics, general dentistry and physician assistants, also recognized the emerging field of genetic training. Its November 2001 report states, ‘‘Primary care training programs are ideally 

positioned to react quickly to meet ever-changing health care needs and issues, 

whether they are related to HIV/AIDS, growing numbers of elderly with chronic illnesses, implications of the modern genetics revolution, the threat of bioterrorism, 

or other issues that will continue to emerge and demand rapid educational intervention.’’

Conclusion 

While genetics is still a relatively young field, now is the time for developing the 

plan to deliver genetic testing and treatment discoveries to all Americans. There is 

no better mechanism for applying these discoveries than the primary care workforce, but this workforce will need new and special preparation and tools. The lag 

between discovery and delivery in healthcare is typically 17 years, and the primary 

care workforce-training pipeline is 7 or more years. The federal government will 

71

1 American Management Association. ‘‘Summary of key findings.’’ 2001 AMA Survey on Workplace Testing: Medical Testing 2 Harris poll, 1995, 34

3 E. Virginia Lapham. Et al. ‘‘Genetic Discrimination: Perspectives of Consumers.’’ Science, October 25, 1996, p.622 4 National Center for Genome Resources unpublished survey, 1997. Cited in Department of 

Labor ‘‘Genetic Information and the Workplace’’, January 20, 1998. 5Genetic Engineering News (GEN) Website poll (www.genengnews.com). 

need to be proactive in its planning and support if Americans are to realize the 

fruits of genetic discoveries in the next decade. 

Statement of the National Workrights Institute, Submitted for the Record 

THE NEED FOR GENETIC NONDISCRIMINATION LEGISLATION 

During the past several decades, our understanding of genetics has multiplied as 

procedures for identifying, analyzing and manipulating DNA have advanced. Among 

the many benefits of these efforts are the ways they may influence preventive 

health, reproductive planning and eventually therapies to cure illnesses with a genetic component. No one can deny that this knowledge may be a blessing in finding 

cures to diseases with genetic origins, including Alzheimer’s, Huntington’s and 

many forms of cancer. Nevertheless, the ability to identify individuals based on genetic characteristics necessarily predates the ability to use this information in the 

treatment of the corresponding diseases and therefore the immediate consequences 

of such advances have and will continue to lead to a number of forms of individual 

discrimination. 

Genetic Discrimination in the Workplace: 

Employers are beginning to acquire and use genetic information. In a 2001 survey 

of U.S. firms almost 2% were currently conducting genetic tests for Sickle Cell and 

Huntington’s Disease, 14% were acquiring genetic information during workplace 

susceptibility testing and 20% reported requesting family medical histories containing information on the likelihood of disease.1

As the acquisition of genetic information by employers increases there have been 

numerous examples of discrimination. Consider: 

* In a 1996 Georgetown University study of 332 families belonging to genetic disease support groups, 22% of the respondents stated that they that they had 

knowingly been refused health insurance and 13% stated that they had knowingly been terminated from their jobs because of the perceived risks attributed 

to their genetic status. 

* Lawrence Berkeley Laboratories conducted testing of their employees for sickle 

cell trait throughout the 1990’s without their knowledge and consent for decision-making purposes. 

* In 1999 Terri Sargent, despite excellent past performance reviews was fired 

from her job for having the genetic predisposition to Alpha–1 disease though 

she remained asymptomatic. 

* In 2001 Burlington Northern Railroad conducted genetic testing of their employees for carpal tunnel syndrome for purposes of refuting workers compensation claims. 

Public Concern: 

There has been continuing widespread concern in this country about the potential 

for misuse of genetic information. Consider: 

* A Harris Poll taken in 1995 of the general public finds 86% of those surveyed 

indicated they were very concerned or somewhat concerned that employers and 

insurers might have access to and use genetic information.2

* A 1996 study finds 87% of respondents would not want their employers to know 

that they were tested and found to be at a high risk of a genetic disorder.3

* In 1997 a survey finds that 63% of participants reported they would not take 

genetic tests for disease if employers and health insurers could access the results.4

* In a 2000 CNN/Time Magazine Poll 80% of those surveyed did not believe employers or insurers should have access to genetic information. 

* A 2003 poll found 69% of respondent surveyed were very worried or somewhat 

worried that employers and insurers would discriminate using genetic information.5

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Restrictions must be placed on the accumulation and use of genetic information 

by employers before discrimination becomes rampant. There is a pressing need for 

Congress to pass genetic nondiscrimination legislation to address this issue. The 

overwhelming demand by the American public for such legislation is clear. Without 

meaningful privacy safeguards and protections against discrimination, the benefits 

of genetic testing will ultimately be lost as individuals avoid tests in the fear of adverse consequences. Indeed, if one really doubts this growing trend of genetic discrimination consider asking an employer the following question: ‘‘If an inexpensive 

and accurate test existed that would indicate that an individual had a predisposition 

to a particular illness that would cost thousands of dollars to treat and limit their 

ability to perform would you be interested conducting and using such testing?’’

Statement of the National Breast Cancer Coalition, Submitted for the 

Record 

I am Fran Visco, a breast cancer survivor, a wife and mother, a lawyer, and President of the National Breast Cancer Coalition (NBCC). On behalf of NBCC, and the 

more than 3 million women living with breast cancer, I would like to thank you for 

the opportunity to provide this testimony. 

The National Breast Cancer Coalition is a grassroots advocacy organization made 

up of more than 600 organizations and tens of thousands of individuals and has 

been working since l99l toward the eradication of breast cancer through advocacy 

and action. NBCC supports increased funding for breast cancer research, increased 

access to quality health care for all women, and increased influence of breast cancer 

activists at every table where decisions regarding breast cancer are made. 

With the knowledge of the human genome expanding exponentially, the National 

Breast Cancer Coalition (NBCC) believes strongly that legislative and regulatory 

strategies must be established to address the protection of individuals from the misuse of their genetic information at the national, state and local levels of government. 

Genetic information is uniquely private information that should not be disclosed 

without authorization by the individual. Improper disclosure can lead to significant 

harm, including discrimination in the areas of employment, education, health care 

and insurance. 

In 1996, the Health Insurance Portability and Accountability Act (HIPAA, 

P.L.104–191), also known as HIPAA, was the first federal law that took some significant steps toward extending protection with regard to genetic discrimination in 

the health insurance arena. HIPAA mandated the Department of Health and 

Human Services (HHS) to create privacy standards to prevent unwarranted disclosures of medical information if Congress did not enact privacy legislation by August 

1999. After this deadline passed, HHS established the standards for privacy of individually identifiable health information (known as the ‘‘privacy regulation’’). While 

the privacy regulation establishes some guidelines for the methods of disclosure and 

access to medical information by health plans and providers, it does not specifically 

address the issue of genetic discrimination. Moreover, even within the health care 

arena, the privacy regulation does not extend to all group plans. 

The time is now to extend protections against genetic discrimination to everyone. 

The release of the working draft of the human genome sequence in June 2000 and 

the development of new genetic tests necessitate legislative and regulatory strategies to address the issue of how to protect individuals from the misuse of their genetic information. 

Furthermore, the fear of potential discrimination threatens both a woman’s decision to use new genetic technologies and to seek the best medical care from her physician, and the ability to conduct the research necessary to understand the cause 

and find a cure for breast cancer. Fear of discrimination can also prevent individuals from enrolling in clinical trials and forgoing possible life-saving treatment. 

NBCC strongly supports the enactment of legislation that would protect millions 

of individuals against discrimination not only in health insurance but also in the 

workplace, and that would provide strong enforcement mechanisms that include a 

private right of action. For these reasons, NBCC supports H.R. 1910 (Slaughter) the 

Genetic Nondiscrimination in Health Insurance and Employment Act. This legislation prohibits health plans from: 

• Requesting, requiring, collecting or disclosing genetic information without prior 

specific written authorization of the individual; 

• Using genetic information, or an individual’s request for genetic services, to 

deny or limit any coverage for established eligibility, continuation, enrollment 

or contribution requirements; 

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• Establishing differential rates or premium payments based on genetic information, or an individual’s request for genetic services. 

This legislation also prohibits employers from: 

• Using genetic information to affect the hiring of an individual or to affect the 

terms, conditions, privileges, benefits or termination of employment, unless the 

employment organization can prove this information is job related and consistent with business necessity; 

• Requesting, requiring, collecting or disclosing genetic information prior to a conditional offer of employment; or under all other circumstances, requesting or requiring collection or disclosure of genetic information unless the employment organization can prove this information is job related and consistent with business necessity; 

• Accessing genetic information contained in medical records released by individuals as a condition of employment, in claims filed for reimbursement for health 

care costs, and other services; 

• Releasing genetic information without specific prior written authorization of the 

individual. 

Most importantly, H.R. 1910 contains strong enforcement language and provides 

individuals with a private right of action to go to court for legal and equitable relief 

if they are a victim of genetic discrimination, whether they are subject to discrimination by their health plan or their employer. 

NBCC does not support the Genetic Nondiscrimination in Health Insurance and 

Employment Act (S.1053) passed by the Senate on October 14, 2003 because it does 

not contain sufficient enforcement provisions. Unlike H.R. 1910, S. 1053 does not 

provide individuals with a private right of action should they become a victim of genetic discrimination in the individual insurance market. 

NBCC’s number one legislative priority if guaranteed access to quality health 

care. However, the only way to guarantee patients have access to the care they deserve is to provide strong enforcement. If health care providers, employers, and insurance companies comply with the law, then those enforcement mechanisms will 

never have to be used. But as patients, we need to know that they are in place for 

our protection. 

NBCC believes that a right with no enforcement is really no right at all. It is for 

that reason that no matter how carefully a bill is worded, no matter how much effort is put into including ‘‘protections’’ that breast cancer patients need—if that bill 

does not have a strong enforcement mechanism, then NBCC simply will not support 

it. 

I urge you to consider and pass legislation that will protect individual’s privacy 

and guarantee them access to quality health care by passing legislation to prevent 

genetic discrimination that includes meaningful enforcement provisions, such as 

H.R. 1910. Thank you for the opportunity to share the views of the National Breast 

Cancer Coalition. 

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

PRINCIPLES FOR GENETIC DISCRIMINATION LEGISLATION

Protections for Individuals with Actual Health Conditions: The same interpretations that make the ADA difficult to enforce by individuals with genetic markers 

make it difficult to enforce by individuals with a range of health conditions. When 

Congress considers protections for individuals who experience discrimination based 

on genetic information, it should also ensure that if these individuals are eventually 

diagnosed with medical conditions, they will be protected against discrimination. 

Workplace Discrimination: Employers must not be permitted to use predictive genetic information as a basis for taking any employment actions or as a term or condition of employment. Nor should employers be permitted to use this information 

to limit, segregate or classify employees or job applicants. 

Employers’ Collection of Information: Employers should be permitted to request 

predictive genetic information only: (1) to monitor effects of toxic substances in the 

workplace upon an employees’ written consent to such monitoring, with the employer receiving only aggregate results and not results for particular employees, or 

(2) to provide genetic services to employees upon the employees’ written consent. In 

either case, results should be provided only to the employee. 

Employers’ Disclosure of Information: Genetic information must be kept strictly 

confidential and maintained separately from personnel files and other employee information. It should be disclosed only to the employee, officials enforcing this legislation, or as required by other federal laws. 

74

Insurance Discrimination: Insurers must not be permitted to make decisions 

about enrollment in health, life, disability, or other types of insurance based on genetic information. They must also be prohibited from using genetic information in 

determining premium or contribution rates, or other terms or conditions of coverage. 

They must be barred from requesting or requiring genetic tests. 

Collection of Information by Insurers: Insurers must not be permitted to request, 

require, collect or buy genetic information except for the limited purpose of paying 

for claims for genetic testing or other genetic services. Strict protections must ensure that when such information is requested, it is not used to affect an individual’s 

enrollment, premiums, or terms or benefits of coverage. 

Disclosure of Information by Insurers: Insurers must be prohibited from disclosing 

genetic information to employers, entities that collect or disseminate insurance information, or health plans or health insurance issuers except in the limited circumstance of payment for claims. 

Health Care Discrimination: Legislation must bar health care providers from refusing treatment to individuals, or treating them differently, based on genetic information. 

Collection of Information by Health Care Providers: Legislation must prohibit 

health care providers from requiring, requesting, or collecting genetic information 

about individuals who are seeking treatment. Providers may only collect this information for the purpose of providing genetic testing or other genetic services. 

Disclosure of Information by Health Care Providers: Health care providers must 

not be permitted to disclose genetic information except to the patient, to insurers 

only for the limited purpose of seeking payment for genetic testing or genetic services rendered, to officials enforcing this legislation, or as required by other federal 

laws. 

Education and Technical Assistance: Funding should be provided for education 

and technical assistance in order to ensure that individuals affected by the legislation are aware of its requirements. 

Effective Enforcement: A private right of action to enforce genetic discrimination 

legislation must be included. The EEOC should have authority to investigate and 

resolve complaints relating to employment. The full range of remedies, including attorney’s fees, must be available. 

Relationship to Other Laws: Legislation must not preempt existing state or federal laws to the extent that they provide greater protections for individuals who experience genetic discrimination. 

POSITION PAPER ON GENETIC DISCRIMINATION LEGISLATION

Introduction 

The National Council on Disability (NCD) is an independent federal agency that 

advises the President and Congress on issues affecting 54 million Americans with 

physical and mental disabilities. NCD’s fundamental purpose is to promote policies, 

programs, practices, and procedures that guarantee equal opportunity for all individuals with disabilities, regardless of the nature or severity of the disability; and 

to empower individuals with disabilities to achieve economic self-sufficiency, independent living, inclusion, and integration into all aspects of society. 

For a number of years, NCD has recognized the harmful effects of discrimination 

based on individuals’ genetic information and supported the need for federal legislation prohibiting genetic discrimination as well as the enforcement of existing legislation that may prohibit certain types of genetic discrimination. It has addressed the 

issue of genetic discrimination in several reports, including the following: 

• Achieving Independence: The Challenge for the 21st Century. July 26, 1996 (expressing serious concern about the quandaries and implications of obtaining and 

using genetic information; calling for further examination of the interface of genetic testing practices with antidiscrimination law and access to health insurance for people with disabilities). 

• National Disability Policy: A Progress Report. July 26, 1996 Oct. 31, 1997 (noting the potential for discrimination based on genetic information in employment, health care and other areas, and urging the President to work with Congress to enact legislation outlawing genetic discrimination and restricting access 

to genetic information by employers, insurance carriers and others). 

• National Disability Policy: A Progress Report. Nov. 1999 Nov. 2000 (applauding 

the Clinton Administration for issuing an executive order prohibiting certain 

types of genetic discrimination by federal employers, and urging the prompt reintroduction of legislation prohibiting genetic discrimination by employers and 

health insurers). 

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1 Deborah Gridley, Note, Genetic Testing Under ADA: A Case for Protection from Employment Discrimination, 89 Georgetown Law Journal 973, 976 (2001). 2 Id. at 975; Testimony of Mary Davidson, Executive Director of Genetic Alliance, before U.S. 

House of Representatives Subcommittee on Commerce, Trade and Consumer Protection of the 

Committee on Energy and Commerce (July 11, 2001). 3 Testimony of Mary Davidson, supra note 2. 4 Congressional Research Service, Genetic Information: Legal Issues Relating to Discrimination and Privacy, Report No. RL30006 (July 19, 2001) (hereafter ‘‘Congressional Research Service Report’’), at 2. 5 Department of Labor, Department of Health and Human Services, Equal Employment Opportunity Commission, Department of Justice, Genetic Information and the Workplace (Jan. 20, 

1998) (hereafter ‘‘Joint Government Report’’), at 3. 6 Id. 7 E. Virginia Lapham et al., Genetic Discrimination: Perspectives of Consumers, 274 Science 

621 (1996). 

• Promises to Keep: A Decade of Federal Enforcement of the Americans with Disabilities Act. June 27, 2000 (supporting the U.S. Equal Employment Opportunity Commission’s (EEOC) position on genetic discrimination in its guidance 

on the definition of disability, which considered an individual discriminated 

against based on a genetic predisposition to disease or disability to be a person 

with a disability protected by the Americans with Disabilities Act (ADA) by virtue of being ‘‘regarded as’’ substantially limited in a major life activity; calling 

for technical assistance from federal agencies in emerging areas of ADA policy 

and enforcement such as genetic discrimination). 

NCD’s interest in genetic discrimination legislation stems partly from the fact 

that the need for this legislation arises due to narrow judicial interpretations of 

ADA, and these same interpretations also create the need for legislation to restore 

protections for individuals who have actually developed health conditions. NCD believes that the concerns of individuals with actual health conditions have not been 

fully addressed in the dialogue about legislative proposals to address genetic discrimination. 

The Need for Federal Legislation Prohibiting Genetic Discrimination 

Recent Advances in Genetic Research Have Brought Increasing Potential for Genetic 

Discrimination 

Recent years have brought dramatic scientific advances in the study of human genetics. Scientists have mapped out DNA sequences in the human body and have 

identified many genes that cause disease. Consequently, they have been able to use 

genetic testing to identify individuals who may be susceptible to many diseases that 

are genetically linked.1 Tests now exist that are able to detect genetic predispositions for many diseases and illnesses, such as Huntington’s Disease, breast cancer, 

cystic fibrosis, Alzheimer’s disease, colon cancer, and Parkinson’s disease.2 The 

number of conditions that may be detected by genetic tests is rapidly growing.3

While these genetic advances hold tremendous potential for early identification, prevention and treatment of disease, they also create opportunities for discrimination 

against individuals based on their genetic information, even where individuals have 

no symptoms of disease. 

In recent testimony before Congress, Dr. Francis Collins, Director of the National 

Human Genome Research Institute at the National Institutes of Health, observed: 

while genetic information and genetic technology hold great promise for improving human health, they can also be used in ways that are fundamentally unjust. Genetic information can be used as the basis for insidious discrimination. . . . The misuse of genetic information has the potential to be 

a very serious problem, both in terms of people’s access to employment and 

health insurance and the continued ability to undertake important genetic 

research.4

Genetic Discrimination is a Historical and Current Reality 

Discrimination based on genetic information is not a new phenomenon. During 

the early 1970s, employers used genetic screening to identify and exclude African 

Americans carrying a gene mutation for sickle cell anemia.5 These individuals were 

denied jobs despite the fact that many of them were healthy and never developed 

the disease.6 During the same time period, individuals who were carriers of sickle 

cell anemia were also discriminated against by several insurance companies despite 

the fact that they were asymptomatic.7

Genetic discrimination by employers and insurers has continued to be a systemic 

problem. According to a 1989 survey conducted by Northwestern National Life Insurance Company, 15 percent of the companies surveyed indicated that by the year 

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8 Larry Gostin, Genetic Discrimination: The Use of Genetically Based Diagnostic and Prognostic Tests by Employers and Insurers, 17 American Journal of Law & Medicine 109, 116 

(1991). 9 Joint Government Report, supra note 5, at 2. 10 Id. 11 Congressional Research Service Report, supra note 4, at 3. 12 Lapham et al., supra note 7, at 622. 13 Id. at 624. 14 Id. at 626. 15 Id. 16 Gostin, supra note 8, at 113. 17 Lapham et al., supra note 7, at 622. 18 Joint Government Report, supra note 5, at 2. 19 Id. 20 Genetic Alliance, The Insured, the Underinsured, and the Uninsurable: the Role of Genetics in Health Care Coverage (Oct. 2001) (unpublished), at 2–3. 

2000, they planned to check the genetic status of prospective employees and their 

dependents before making employment offers.8

A 1996 survey of individuals at risk of developing a genetic condition and parents 

of children with specific genetic conditions indicated more than 200 instances of genetic discrimination reported by the 917 respondents. The discrimination was practiced by employers, insurers, and other organizations.9 Another survey of genetic 

counselors, primary care physicians, and patients identified 550 individuals who 

were denied employment or insurance based on genetic information.10 A study on 

genetic discrimination, published in 1996, found that health and life insurance companies, health care providers, blood banks, adoption agencies, the military, and 

schools engaged in genetic discrimination against asymptomatic individuals.11

Science magazine reported that in a study of 332 individuals with one or more 

family members with a genetic disorder who are affiliated with genetic support 

groups, 40 percent of the respondents recalled being specifically asked about genetic 

diseases or disabilities on their applications for health insurance.12 Twenty-two percent of the respondents said they or a family member were refused health insurance 

as a result of the genetic condition in the family.13 Fifteen percent of the respondents reported that they or affected family members had been asked questions about 

genetic diseases or disabilities on employment applications.14 Thirteen percent reported that they or a family member had been denied a job or fired from a job because of a genetic condition in the family, and 21 percent reported being denied a 

job or fired due to their own genetic disorder.15

In addition to these and other studies, numerous anecdotal examples of genetic 

discrimination by employers and insurers have been detailed in testimony before 

Congress in hearings about genetic discrimination. 

Genetic Discrimination Undermines the Purposes of Genetic Research and Testing 

The misuse of genetic information not only excludes qualified individuals from 

employment and denies insurance coverage to individuals without justification, but 

also undercuts the fundamental purposes of genetic research. Such research has 

been undertaken with the goals of early identification, prevention and effective 

treatment of disease. These goals will be undermined if fear of discrimination deters 

people from genetic diagnosis and prognosis, makes them fearful of confiding in physicians and genetic counselors, and makes them more concerned with loss of a job 

or insurance than with care and treatment.16

The fears engendered by genetic discrimination fears of disclosure of genetic information to physicians and of participation in genetic testing and research have been 

well documented in numerous studies. In one study, 83 percent of the participants 

indicated that they would not want their insurers to know if they were tested and 

found to be at high risk for a genetic disorder.17 In a 1997 survey of more than 

1,000 individuals, 63 percent of the participants reported that they would not take 

genetic tests for diseases if health insurers or employers could get access to the results.18 Additionally, researchers conducting a Pennsylvania study to determine how 

to keep women with breast cancer gene mutations healthy reported that nearly one 

third of the women invited to participate in the study declined out of fear of discrimination or loss of privacy.19 The results of a national survey released by the 

California HealthCare Foundation in 1999 indicate that 15 percent of adults surveyed took steps to keep genetic information private, such as paying for testing out 

of pocket rather than using their insurance coverage, constantly switching doctors 

to avoid the compilation of a comprehensive medical history, refusing to seek needed 

medical care, and/or providing false or incomplete information to physicians.20 Another study showed that 57 percent of surveyed individuals at risk for breast or 

ovarian cancer had chosen not to take a needed genetic test, and 84 percent of those 

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21 Caryn Lerman et al., BRCA1 testing in families with hereditary breast-ovarian cancer. A 

prospective study of patient decision making and outcomes, 275 Journal of American Medical 

Ass’n 1885 (1996). In another study, concern about health insurability was the leading reason 

for individuals’ decisions to decline cancer genetic counseling services. Katherine P. Geer et al., 

Factors Influencing Patients’ Decisions to Decline Cancer Genetic Counseling Services, 10 Journal of Genetic Counseling 25 (2001). 22 Lapham et al., supra note 7, at 622. 23 Id. 24 Joint Government Report, supra note 5, at 3. 25 Gostin, supra note 8, at 113. 26 Id. at 114. 27 Id. 28 Joint Government Report, supra note 5, at 1; Elaine Draper, The Screening of America: 

The Social and Legal Framework of Employers’ Use of Genetic Information, 20 Berkeley Journal 

of Employment & Labor Law 286, 290–91 (1999). 29 Draper, supra note 28, at 290. 30 The analysis of ADA’s application to genetic discrimination in employment also applies to 

Section 504 of the Rehabilitation Act, which applies to federal employers and entities receiving 

federal funds. Section 504 has the same definition of disability as that contained in ADA. 31 42 U.S.C. § 12102(2). 32 136 Cong. Rec. H4627 (statement of Rep. Waxman). 33 Joint Government Report, supra note 5, at 6; EEOC Compliance Manual § 902, Order 

915.002, 902–45 (1995). 

individuals who had decided to forego the test cited fear of genetic discrimination 

as a major reason for their decision.21

These fears eliminate people’s opportunities to learn that they are not at increased risk for the genetic disorder in the family or to make lifestyle changes to 

reduce risks.22 They may also affect the number of people willing to participate in 

scientific research.23

Genetic Test Information Has Little Value for Purposes of Making Employment Decisions and Insurance Decisions 

There is no consensus on the scientific validity of genetic tests or their usefulness 

for predicting an individual’s susceptibility to exposure.24 The results of geneticbased diagnosis and prognosis are uncertain for many reasons. First, the sensitivity 

of genetic testing is limited by the known mutations in a target population. Many 

individuals with a genetic predisposition for a particular disease will not be identified because these markers are not among the known genetic mutations.25 Secondly, 

many individuals are falsely labeled ‘‘at risk’’ due to the genetic screening of family 

members.26 Thirdly, genetic markers are generally not valid predictors of the nature, severity and course of disease. For most genetic disease, the onset date, severity of symptoms, and efficacy of treatment and management are highly variable, 

with some people identified by screening remaining symptom-free and others progressing to disabling illness.27 Genetic tests alone cannot predict with certainty 

whether an individual with a particular genetic error will actually develop a disease.28 These tests evaluate people according to stereotypes of future ability to function and the probability that disease will occur, rather than evidence of actual disease and ability.29

Existing Laws Are Insufficient to Protect Individuals from Genetic Discrimination 

There are existing laws that may prohibit genetic discrimination in some contexts. 

However, these laws do not reach much of the discrimination that occurs and, in 

some cases, may be interpreted not to apply to genetic discrimination at all. 

The Americans with Disabilities Act30

The Americans with Disabilities Act (ADA), an anti-discrimination law, protects 

individuals who have an impairment that substantially limits them in a major life 

activity, who have a record of such an impairment, or who are regarded as having 

such an impairment.31 Congress intended ADA to cover individuals with a broad 

range of diseases, and some members of Congress explained at the time of ADA’s 

passage that it would protect people who experience discrimination on the basis of 

predictive genetic information where those individuals were regarded as having a 

disability.32 ADA has also been interpreted by EEOC to prohibit some forms of genetic discrimination. In 1995, the EEOC issued enforcement guidance advising that 

an employer who takes adverse action against an individual on the basis of genetic 

information may regard the individual as having a disability and, therefore, may be 

violating ADA.33 EEOC recently settled its first court action challenging an employVerDate 0ct 09 2002 19:05 Dec 05, 2004 Jkt 000000 PO 00000 Frm 00081 Fmt 6633 Sfmt 6621 H:\DOCS\94940 EDUWK PsN: NNIXON
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34 EEOC v. Burlington Northern Santa Fe Railroad, Civ. No. 01–4013 MWB (N.D. Iowa Apr. 

23, 2001) (Agreed Order). The Railroad, which had tested for carpal tunnel syndrome propensity, 

agreed to stop requiring genetic tests, using genetic information relating to its employees, and 

disclosing such information to the public. 35 Congressional Research Service Report, supra note 4, at 9 (describing complaint filed by 

Terri Sergeant alleging a violation of ADA based on her termination after being diagnosed with 

Alpha 1 Antitrypson Deficiency). 36 Id. 37 527 U.S. 471, 473–74 (1999). 38 527 U.S. 516, 516–17 (1999). 39 For a discussion of how the courts have interpreted ADA far more restrictively than Congress intended, see Chai Feldblum, Definition of Disability Under Federal Anti–Discrimination 

Law: What Happened? Why? And What Can We Do About It?, 21 Berkeley Journal of Labor 

& Employment 91 (2000). 40 Sutton v. United Airlines, Inc., 527 U.S. at 481–88; Murphy v. United Parcel Service, 527 

U.S. at 521. 41 524 U.S. 624 (1998). 42 42 U.S.C. § 12112(c); Congressional Research Service Report, supra note 4, at 13. 

er’s use of genetic testing34 and also issued a finding of cause in an administrative 

complaint filed by a woman who was terminated based on a genetic test result.35

Nonetheless, ADA is a highly problematic vehicle for fully addressing genetic discrimination. At recent Senate hearings, EEOC Commissioner Paul Steven Miller 

testified that while ADA could be interpreted to prohibit employment discrimination 

based on genetic information, it ‘‘does not explicitly address the issue and its protections are limited and uncertain.’’36

ADA could be interpreted to protect individuals with genetic markers for disease 

in two ways. First, as described above, such individuals may be protected if they 

are regarded as substantially limited in a major life activity B for example, if they 

are regarded as substantially limited in working due to their genetic predisposition. 

However, recent Supreme Court cases discussing what it means to be regarded as 

substantially limited in working suggest that such claims are extremely unlikely to 

succeed. In Sutton v. United Airlines, Inc.37 and Murphy v. United Parcel Service, 

Inc.,38 the Court stated that a job requirement excluding individuals based on their 

impairments does not necessarily establish that the employer regards individuals 

excluded by this requirement as substantially limited in working. To be covered 

under the ‘‘regarded as’’ prong, the plaintiffs would have to prove that they were 

regarded as substantially limited in performing a broad class of jobs, not merely 

their own jobs. It may prove extremely difficult for plaintiffs with genetic markers 

who are denied employment due to an employer’s concern about health insurance 

premiums or productivity losses to show that the employer regarded them as substantially limited in performing not only the job in question but a broad class of 

other jobs as well. 

Individuals who experience genetic discrimination may also be covered under ADA 

if they are regarded as substantially limited in other major life activities besides 

working. It is unlikely that most plaintiffs will be able to establish the requisite 

proof to prevail on such claims. Most courts have interpreted ‘‘substantially limited’’ 

so restrictively that an individual must be extremely debilitated.39 Moreover, the 

courts have interpreted ADA to require consideration of any measures that an individual takes to control the effects of her limitations.40 Thus, it is unlikely that an 

individual with a genetic predisposition for a disease, but who has not actually developed the disease, will be able to show that he was regarded as substantially limited in any major life activity. 

An individual who experiences genetic discrimination may also be covered by ADA 

under the first prong of the definition of disability—that is, by showing that she has 

an actual impairment that substantially limits her in a major life activity. In 

Bragdon v. Abbott,41 the Supreme Court held that an individual with asymptomatic 

HIV was covered under the first prong because she was substantially limited in reproduction due to the risk of transmitting HIV to a fetus. The Court found that the 

asymptomatic HIV was a physical impairment based on the physiological effects of 

the infection. It is unclear, however, whether courts would find a genetic marker 

to constitute an actual impairment. 

Even assuming ADA did apply, in many situations it might not prevent employers 

from accessing genetic information. While ADA does bar medical inquiries before a 

conditional offer of employment is made, it would permit employers to request genetic information if they could establish that the information was job-related and 

consistent with business necessity.42

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43 29 U.S.C. § 1182(a)(1), 1182(b)(1). 44 Id. § 1182(a)(2)(B). 45 See Gostin, supra note 8, at 109; Congressional Research Service Report, supra note 4, at 

30 n.8. 46 Gostin, supra note 8, at 138. 47 Id. at 138–39. 48 Joint Government Report, supra note 5, at 8. 49 Gridley, supra note 1, at 980–81. 50 Gostin, supra note 8, at 142. 

The Health Insurance Portability and Accountability Act 

The Health Insurance Portability and Accountability Act (HIPAA) prohibits genetic discrimination by insurers in very limited circumstances. It prohibits group 

health plans from using any health status-related factor, including genetic information, as a basis for denying or limiting coverage or for charging an individual more 

for coverage.43 However, a plan may still establish limitations on the amount, level, 

extent or nature of benefits or coverage provided to similarly situated individuals.44

Thus, plans may still provide substantially fewer services even though they may not 

charge more for coverage. In addition, privacy regulations issued pursuant to 

HIPAA require patient consent for most sharing of personal health information by 

health insurers, providers, and health care clearinghouses. Companies that sponsor 

health plans are prohibited from accessing personal health information for employment purposes unless the patient consents. These provisions do little to prevent genetic discrimination in the workplace and, while they do prohibit some forms of genetic discrimination by insurers, that protection is extremely limited. 

Title VII 

Race and gender discrimination laws may apply to certain forms of genetic discrimination as well.45 For example, Title VII of the Civil Rights Act of 1964, which 

prohibits employment discrimination based on race or gender, may prohibit employers from denying employment based on genetic markers linked to race, such as that 

for sickle cell anemia, or linked to gender, such as those for breast or ovarian cancer. Some courts have said in dicta that employment classifications based on sickle 

cell anemia would create a disparate impact on African Americans, but no lawsuit 

has successfully been brought challenging such classifications under Title VII.46 At 

least one court has rejected such a claim.47

State Laws 

A number of states have passed state laws that prohibit certain forms of genetic 

discrimination. These laws, however, vary widely in the scope of their protection.48

Many are narrowly targeted to particular genetic conditions, some prohibit only certain types of screening but do not prohibit adverse employment actions based on genetic information, and some only address genetic counseling and confidentiality.49

These laws have been described as ‘‘a patchwork of provisions which are incomplete, 

even inconsistent, and which fail to follow a coherent vision for genetic screening, 

counseling, treatment and prevention of discrimination.’’50

In light of the inadequacies of federal and state law to address genetic discrimination issues, comprehensive federal legislation that specifically addresses these issues 

is necessary. 

Principles for Genetic Discrimination Legislation 

NCD believes that it is crucial for any proposed legislation addressing genetic discrimination to reflect the following principles: 

Workplace Discrimination: 

Any proposed legislation must provide effective prohibitions against discrimination by employers based on genetic information. Employers must not be permitted 

to use predictive genetic information as a basis for hiring, firing, or taking any other 

employment action, or as a term or condition of employment. Nor should an employer be permitted to use this information, or be permitted to limit, segregate or 

classify employees or job applicants. This information should not be permitted to 

play a role in an employment agency’s referral of individuals for employment; in decisions by a labor organization about admission to its membership; or in admission 

to or employment by a training program. 

Collection and Disclosure of Genetic Information by Employers: 

Any proposed legislation must contain strict limits on the collection and disclosure 

of genetic information by employers so as to prevent that information from being 

used for discriminatory purposes. Employers must not be permitted to collect geVerDate 0ct 09 2002 19:05 Dec 05, 2004 Jkt 000000 PO 00000 Frm 00083 Fmt 6633 Sfmt 6621 H:\DOCS\94940 EDUWK PsN: NNIXON
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netic information except under very limited circumstances that will be used only to 

benefit employees and only on a voluntary basis. 

Specifically, employers should be permitted to request predictive genetic information only: (1) for the purpose of monitoring effects of toxic substances in the workplace, and only if an employee has provided written consent to such monitoring, the 

employee is informed of the results, the monitoring conforms to national standards, 

and the employer does not receive results for particular individuals but rather receives only aggregate results for all individuals monitored; and (2) for the purpose 

of providing genetic services to employees, but only if such services are provided 

with the employee’s written consent and only the employee receives the results. 

Additionally, employers must maintain strict confidentiality of genetic information 

of applicants or employees that is in the employers’ possession. Genetic information 

should be kept confidential and maintained separately from personnel files and 

other non-confidential information. It should be disclosed only to the employee, to 

officials enforcing this legislation, or as required by other federal laws. 

Insurance Discrimination: 

Any proposed legislation should contain comprehensive protection against genetic 

discrimination by providers of health, life, disability, and other types of insurance. 

Legislation must bar insurers from making decisions about enrollment based on genetic information. It must also prohibit insurers from using genetic information in 

determining premium or contribution rates, or other terms or conditions of coverage. 

Finally, it must bar insurers from requesting or requiring an individual to undergo 

genetic testing. 

Collection and Disclosure of Genetic Information by Insurers: 

Any proposed legislation must prohibit insurers from requiring, requesting, collecting, or buying genetic information about individuals who are covered or seeking 

coverage. 

Insurers should be permitted, however, to obtain this information only for the limited purpose of paying for claims for genetic testing or other genetic services. Strict 

protections must be in place to ensure that when such information is requested, it 

is not used to affect an individual’s enrollment, premiums, or terms or benefits of 

coverage. 

Insurers must also be prohibited from disclosing genetic information to health 

plans or issuers of health insurance (except in the limited circumstances described 

above where the information is used for purposes of payment of claims), employers, 

and entities that collect and disseminate insurance information. 

Health Care Provider Discrimination: 

Any proposed legislation should protect against genetic discrimination by health 

care providers. Health care providers must not be permitted to refuse treatment to 

individuals, or treat them differently, based on genetic information. For example, 

‘‘futile care’’ policies, under which medically indicated treatments may be denied 

based on determinations that such treatments would be ‘‘futile’’ in light of an individual’s expected quality of life, should be prohibited to the extent that they result 

in denials of treatment based on genetic information. 

Collection and Disclosure of Genetic Information by Health Care Providers: 

Any proposed legislation must prohibit health care providers from requiring, requesting, or collecting genetic information about individuals who are seeking treatment. Providers may only collect this information for the purpose of providing genetic testing or other genetic services. 

Health care providers must not be permitted to disclose genetic information except to the patient, to insurers only for the limited purpose of seeking payment for 

genetic testing or genetic services rendered, to officials enforcing this legislation, or 

as required by other federal laws. 

Education and Technical Assistance: 

Any proposed legislation should include funding to permit education and technical 

assistance to be provided by appropriate organizations in order to ensure that individuals affected by the legislation are aware of its requirements. Such assistance is 

important to ensure effective enforcement of the legislation. 

Effective Enforcement Mechanisms: 

Any proposed legislation must contain a private right of action for individuals to 

enforce its provisions. Additionally, EEOC should have the authority to investigate 

and resolve complaints of violations of the employment provisions of the law. In 

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51 See Feldblum, supra note at 39. 

order to be effective, the legislation must provide for the full panoply of legal remedies, including attorney’s fees. 

Relationship to Other Laws: 

Any proposed legislation must serve as a set of minimum standards that do not 

preempt more stringent standards that may exist in other laws. Thus, the legislation must not preempt stronger state laws. Similarly, it must not preempt other federal laws that may be applicable where those laws provide stronger protection 

against genetic discrimination. 

Addressing Protections for Individuals with Actual Health Conditions: 

As discussed above, courts have interpreted ADA in a number of ways that severely restrict the number of people protected.51 They have interpreted ADA to protect only individuals who are so limited in major life activities that they are extremely debilitated, and to exclude protection for many individuals who take mitigating measures to control the effects of their impairments. They have made it extraordinarily difficult for individuals to establish that an employer regards them as 

substantially limited in working. These interpretations of ADA have resulted in far 

more limited protection than Congress envisioned when it passed ADA. 

The same interpretations that make ADA difficult to enforce by individuals with 

genetic markers make it difficult to enforce by individuals with a range of health 

conditions. When Congress considers protections for individuals who experience discrimination based on genetic information, it should also ensure that if these individuals are eventually diagnosed with medical conditions, they will be protected 

against discrimination. 

Statement of FORCE, Submitted for the Record 

FORCE: Facing Our Risk of Cancer Empowered is a national organization representing the concerns of the estimated 500,000 Americans with hereditary predisposition to breast and ovarian cancer. Our organization urges the House to vote 

on S.1053, the Genetic Information Nondiscrimination Act. Our members are concerned citizens who have been impacted by hereditary cancer. They favor passage 

of this comprehensive bill to protect individuals from insurance and employment 

discrimination on the basis of predictive genetic test results. 

Current laws such as HIPAA do not go far enough to protect citizen’s rights. The 

general population still feels vulnerable to the possibility of discrimination. By passing this bill, Congress will be making a strong statement that discrimination based 

on genetic information is unacceptable. As genetic research progresses and more disease-predisposing genes are identified, it is important that genetic discrimination is 

outlawed. Individuals who have already had gene testing and those who might 

choose to be tested in the future must be protected from possible discrimination. 

Genetic testing is improving the lives of thousands of Americans, providing information on how to prevent future health problems, and cope more effectively with 

unavoidable conditions. Nevertheless, under current law, many people are afraid to 

be tested or to participate in research that will lead to better prevention and treatment of diseases. They fear that their genetic information will be misused by employers and health insurers. 

Our organization strongly endorses the passage of a comprehensive federal legislation to prohibit genetic discrimination in health insurance and employment. We 

urge the House of Representatives to call a house vote on S1053. Passage of a nondiscrimination bill will save lives by removing a significant barrier to patients 

availing themselves to genetic testing. 

Thank you in advance for your consideration of this matter. We hope that you will 

keep the best interests of your constituents in mind and take immediate action to 

pass this bill. 

Statement of the Association of Women’s Health, Obstetric and Neonatal 

Nurses, Submitted for the Record 

The Association of Women’s Health, Obstetric and Neonatal Nurses (AWHONN) 

appreciates the opportunity to comment on the issue of Genetic Discrimination. 

AWHONN is a membership organization of 22,000 nurses whose mission is to promote the health of women and newborns. 

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1 Mary Davidson testimony—cancers, Alzheimers. For CF, see i.e http://odp.od.nih.gov/consensus/cons/106/106statement.htm. 

AWHONN members are registered nurses, nurse practitioners, certified nursemidwives, and clinical nurse specialists who work in hospitals, physicians’ offices, 

universities and community clinics across North America as well as in the Armed 

Forces around the world. 

Last October the United States Senate took historic action when it passed S.1053, 

the ‘‘Genetic Information Nondiscrimination Act’’ by a margin of 95–0. The bill’s 

passage was the result of years of hard work and bi-partisan compromise. The legislation establishes strong protections against discrimination based on genetic information both in health insurance and employment. 

The bill prohibits health insurance enrollment restriction and premium adjustment on the basis of genetic information and prevents health plans and insurers 

from requesting or requiring than an individual take a genetic test. The bill also 

prohibits discrimination in hiring, compensation and other personnel processes, prohibits the collection of genetic information and covers employers, employment agencies, labor organizations and training programs. 

The benefits of genetic testing are enormous and science is revealing genetic 

markers for many different ailments at an increasing rate. Research has already 

identified genetic markers for conditions including cancer, diabetes, Alzheimer’s disease, Huntington’s Disease and cystic fibrosis.1 Unfortunately, the same science that 

can help reveal an individual’s predisposition to certain health problems may also 

open the door to discrimination. No individual should have to choose between the 

benefits of genetic testing and keeping a job or health insurance. 

The House needs to take immediate steps to act on this legislation—the fear of 

genetic discrimination has prompted many Americans to avoid genetic tests that 

could literally save their lives. By providing patients with this type of health information, we empower them to seek appropriate treatment options and/or lifestyle 

changes that can prevent disease onset. As a nursing organization whose mission 

is advancing women and newborn health, AWHONN recognizes the need for comprehensive federal legislation that protects individuals from genetic discrimination 

and believes that the ‘‘Genetic Information Nondiscrimination Act’’ passed by the 

Senate will provide strong protection against access to and misuse of genetic information. 

The House must act now and take action on the Senate version of the ‘‘Genetic 

Information Nondiscrimination Act’’ to help secure the health and well-being of all 

Americans. 

Thank you for the opportunity to submit testimony on this crucial legislation. 

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

Record 

The American Society of Human Genetics (ASHG) has endorsed the passage of 

federal legislation to prohibit discrimination in health insurance and employment on 

the basis of genetic information. ASHG commends the bipartisan enthusiastic passage of S. 1053 last year in the Senate, and urges similar House action. 

ASHG is the primary professional organization for human genetics in the Americas, representing nearly 8000 researchers, physicians, laboratory practice professionals, genetic counselors, nurses, and trainees actively engaged in genetics discovery, teaching and the development of health care applications and services derived from research findings. 

Our members are keenly aware of the challenges faced by individuals and families 

involved in genetic evaluation and diagnostic procedures at the rapidly evolving 

interface between biomedical research and health care. Many of us have personally 

experienced cases in which testing or its outcome led to adverse effects on insurance 

or employment. While the number of publicly documented cases of discrimination 

based on genotype may be considered small at this time, the rapid advances being 

made in genetics will provide more opportunities for persons to be adversely affected 

by test results. The potential misuse of genetic information by insurance companies 

and employers has also been an impediment in recruiting subjects for some research 

studies. 

From the geneticist’s point of view, the absence of a federal standard that prohibits employment and health insurance discrimination based on genetic information results in: 

1. difficulty in recruiting subjects into genetic research studies 

2. patient avoidance of genetic services 

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3. underutilization of genetic testing 

4. difficulty in obtaining insurance coverage when attempted 

5. several cases recognized that have not resulted in legal action 

6. significantly increased time and effort in genetic evaluation and counseling sessions resulting in increased service costs 

Many states have enacted some form of genetic non-discrimination legislation, but 

the laws are quite varied in their focus and scope. Federal legislation would assure 

individuals and families in our mobile society that neither health care coverage nor 

employment status would be jeopardized by their participation in genetic testing. 

Such protection will eliminate some of the concerns (real or perceived) that have deterred participating in genetic research studies or seeking genetic testing. This protection will speed the progress in understanding genetic disease and how we can 

prevent or treat these disorders. 

We appreciate the opportunity to comment on this important issue, and will work 

with you and your staff on any details necessary to accomplish the task. 

Statement of the American Osteopathic Association, Submitted for the 

Record 

The American Osteopathic Association (AOA) represents the nation’s 54,000 osteopathic physicians. The AOA is pleased that the Subcommittee on Employer–Employee Relations of the House Committee on Education and the Workforce is holding 

a hearing on genetic nondiscrimination. It is an issue that will increasingly affect 

patients and physicians as further advances are made in the field of genetic testing. 

In 1997, the AOA House of Delegates adopted a policy prohibiting discrimination 

in employment, insurance, coverage, and access to care based on genetic information. The policy was reaffirmed in 2002. 

The completion of the Human Genome Project and genetic testing are contributing 

to advances in medical knowledge that hold great promise for the future in diagnosis, management, and treatment of the human condition. However, such knowledge can also provide the basis for unethical and discriminatory behavior in employment and insurance coverage. 

It is the position of the AOA that access to health care should not be restricted 

on the basis of genetic testing and that discrimination in employment on the basis 

of genetic testing should be prohibited. Furthermore, health care plans should be 

prohibited from restricting or denying coverage or raising premiums on the basis of 

genetic testing. 

We believe that patients must be able to discuss genetic testing options with their 

osteopathic physicians without fear of discrimination from employers, potential employers, or health care plans for having undergone such genetic testing or participating in clinical trials to test new therapies. We are concerned that there is no law 

on the books to prevent such discrimination. 

For the past several years, the AOA sent letters in support of genetic nondiscrimination legislation. Most recently, letters were sent to Senator Snowe (R–

ME) in support of S.1053 that passed the Senate last year and Representative 

Slaughter (D–NY) in support of H.R.1910. 

As physicians, we understand the value of genetic research, testing, and therapy 

in the diagnosis and treatment of certain diseases. Our patients should not forego 

genetic testing or promising therapy out of fear of discrimination. We urge the 

House of Representatives to pass genetic nondiscrimination legislation. President 

Bush stated publicly that he supports S.1053 and is committed to enacting legislation to prohibit genetic discrimination in health insurance and employment. 

The President and the Senate have acted. It is now time for the House to act. 

Statement of The American Psychiatric Association, Submitted for the 

Record 

The American Psychiatric Association (APA), the national medical specialty society, founded in 1844, whose over 35,000 psychiatric physician members specialize 

in the diagnosis and treatment of mental and emotional illnesses and substance use 

disorders, appreciates the opportunity to provide a statement on genetic non-discrimination. We thank the Committee for allowing us to provide this statement. 

Genetic testing offers tremendous promise in identifying current and potential future health risks. At the same time, we have significant concerns that Americans’ 

genetic information could be misused. Our concerns are shared by a strong majority 

of Americans: a U.S. Department of Labor survey showed that 63 percent of reVerDate 0ct 09 2002 19:05 Dec 05, 2004 Jkt 000000 PO 00000 Frm 00087 Fmt 6633 Sfmt 6621 H:\DOCS\94940 EDUWK PsN: NNIXON
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spondents would refuse to take a genetic test if insurers or employers could access 

their private results. 

We believe Congress can help by passing the strongest possible enforceable genetic non-discrimination legislation. Employers and insurers should not be permitted to discriminate on the basis of a person’s genetic profile and family history. 

Our concerns extend beyond patients’ reluctance to take a genetic test. Such reluctance means that people are disinclined to participate in clinical studies that require 

genetic testing, hurting our efforts to identify causes and new treatments for diseases, including mental illnesses. Worse, some patients’ reluctance could keep them 

from getting a proper diagnosis today, as well as potentially life-saving treatment. 

Perhaps the most pernicious potential consequence of not enacting a ban on genetic 

discrimination is that Americans could lose their jobs or their health insurance, 

based simply on their family history. 

Protecting patients’ genetic information is essential to providing the highest quality medical care. We believe a patient’s genetic information should only be used or 

disclosed by a health care plan, provider, or clearinghouse with the informed, voluntary, and non-coerced consent of the patient. As our knowledge of genetics grows, 

especially through the Human Genome project, the possible misuses of genetic information will expand unless enforceable safeguards are enacted. 

The U.S. Senate voted 95–0 to pass the ‘‘Genetic Information Non-discrimination 

Act of 2003’’ (S. 1053), with the support of President Bush. Similar but stronger legislation (H.R. 1910) is now cosponsored by 241 members of the House. Both bills 

would ban employers and insurers from discriminating on the basis of a person’s 

genetic profile and family history. APA urges Congress to pass and the President 

to sign the strongest possible enforceable genetic non-discrimination legislation into 

law. 

Thank you for this opportunity to deliver this statement. Please call on the APA 

as a resource, as we would be happy to assist the Committee on the vital issue of 

genetic non-discrimination in any way. 

Statement of the American Cancer Society, Submitted for the Record 

Genetic research is one of the most exciting areas of scientific advancement today. 

As our knowledge about the genetic basis of common disorders grows, however, so 

does the potential for discrimination in health insurance and employment. This possibility can have a dramatic and chilling impact on patient care and research. For 

example, a genetic test exists for inherited breast cancer that allows healthy, highrisk women to find out whether they carry the altered gene so they can determine 

with their doctor whether to pursue available medical options. Unfortunately, many 

of these women may choose not to be tested for fear that the information could be 

used to deny them the health insurance coverage they need to fight disease or to 

deny them future employment. 

We need legislation that allows medical research to advance, while at the same 

time protects the rights and needs of patients and their family members. The American Cancer Society endorses the ‘‘Genetic Nondiscrimination in Health Insurance 

and Employment Act’’ now pending in the House (H.R. 1910) and its companion 

‘‘Genetic Information Nondiscrimination Act’’ (S. 1053) in the Senate. These bills 

support the goal of allowing people to benefit from advances in genetic testing without fear of losing their heath insurance or job opportunities. 

Specifically, the legislation prohibits health insurance companies from denying or 

canceling health coverage on the basis of genetic information, using genetic information to determine insurance rates, and requesting or requiring genetic information 

or genetic tests. Decisions about genetic testing and results from genetic testing 

should be made by patients and their health care providers, without fear of negative 

consequences. The bills also provide important workplace protections, prohibiting 

employers and employment organizations from using genetic information as a 

means to deny or limit employment for individuals who they suspect may have an 

inherited predisposition to disease. 

The Senate has already taken a strong stand on the need for this type of legislation, passing S. 1053 overwhelmingly by 95–0 vote in October 2003. The American 

Cancer Society urges the House to take prompt action on this important legislation 

to ensure that critical patient protections are enacted before the end of this Congress. 

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Letter from Lawrence Lorber Answering Follow-Up Questions, Submitted 

for the Record


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Statement of Hon. Newt Gingrich, Former Speaker, U.S. House of 

Representatives, Submitted for the Record


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Statement of Hon. Louise McIntosh Slaughter, a Representative in 

Congress from the State of New York


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Statement of the Ovarian Cancer National Alliance, Submitted for the 

Record


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Statement of the Catholic Health Association, Submitted for the Record 

The Catholic Health Association (CHA), the national leadership organization of 

more than 2,000 Catholic health care sponsors, systems, facilities, and related organizations, would like to commend the House Education and Workforce Subcommittee on Employer–Employee Relations, and its chairman, Representative Sam 

Johnson, for holding a hearing on the problem of genetic nondiscrimination. 

As the Subcommittee is no doubt aware, last year the United States Senate overwhelmingly passed the Genetic Information Nondiscrimination Act of 2003 (S 1053). 

CHA strongly supports this legislation, which we believe would serve as an important compliment to other federal and state laws that recognize the need to protect 

an individual’s genetic information from being used in a discriminatory manner in 

the health insurance and employment markets. 

Specifically, the bill would: 

• Prohibit health insurers from restricting enrollment or adjusting fees on the 

basis of predictive genetic information 

• Bar health insurers and employers from requiring genetic testing and from obtaining predictive genetic information 

• Prevent employers from discriminating based on genetic information in all 

areas of employment, including hiring and compensation 

Genetic science has seen marvelous growth over the past several years, and 

Catholic social teaching validates its use when respect for personal dignity, the defense of human life, and support of the common good is its goal. CHA believes that 

S 1053 reflects this principle. It is our hope that today’s hearing will be the first 

step toward passage of the legislation by the House of Representatives before the 

end of the 108thCongress. 

Statement of the Huntington’s Disease Society of America, Submitted for 

the Record 

As staunch supporters of legislation banning genetic discrimination in the workplace and by health insurers, the Huntington’s Disease Society of America (HDSA) 

urges Congress to schedule immediate House action on the ‘‘Genetic Information 

Nondiscrimination Act’’ (S.1053), which was unanimously passed by the Senate in 

November 2003. 

HDSA believes Genetic Nondiscrimination legislation must include strong and enforceable protections against wrongful discrimination in health insurance and employment so that individuals may utilize genetic testing in order to make critical 

life decisions as well as to be able to participate in clinical research without fear 

of consequence for themselves or their families. Individuals at risk for Huntington’s 

Disease (HD) often elect to pay for testing out of pocket for fear of genetic discrimination. 

The Huntington’s Disease Society of America urges Congress to pass comprehensive federal legislation prohibiting genetic discrimination. Genetic testing can improve our lives by providing information on how we can prevent future health problems, and cope more effectively with unavoidable conditions. But the ability to predict disease through genetic testing and family history opens the door for genetic 

discrimination, particularly in employment and health insurance.

Sincerely,

Huntington’s Disease Society of America 

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Statement of the United Spinal Association, Submitted for the Record


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


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