Order Code RL30006
CRS Report for Congress
Received through the CRS Web
Genetic Information: Legal Issues Relating to
Discrimination and Privacy
Updated July 19, 2001
Nancy Lee Jones
Legislative Attorney
American Law Division
Congressional Research Service ˜ The Library of Congress

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Genetic Information: Legal Issues Relating to
Discrimination and Privacy
Summary
On June 26, 2000, in a special ceremony at the White House, the completion of
the “rough draft” of the human genome was announced. This milestone, which has
been compared to the discoveries of Galileo, and other advances in genetics have
created novel legal issues relating to genetic information. The Human Genome
Project, with its goal of producing detailed maps of the 23 pairs of human
chromosomes and sequencing the three billion nucleotide bases that make up the
human genome, has been instrumental in the identification of genes implicated in
various diseases including glaucoma, colon cancer, and cystic fibrosis. With the
identification of these genes comes the hope of genetic therapies to cure disease but
this scientific accomplishment is not without potential problems. For instance the
presence of a cancer causing gene may indicate a predisposition but does not
guarantee that the person will contract the disease: How should an employer or
insurer respond? The ethical, social and legal implications of these technological
advances have been the subject of significant scrutiny and concern.
The legal implications of such information have been mainly on the state level but
there are some relevant Federal statutes. The Health Insurance Portability and
Accountability Act of 1996, P.L. 104-191, is the first federal law to specifically
address discrimination and insurance issues relating to genetic discrimination. This
report discusses current federal law, state statutes, and current legislation. It will be
updated as needed.

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Contents
Background . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 1
The Health Insurance Portability and Accountability Act of 1996 . . . . . . . . . . . . 5
Executive Order . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 5
The Americans with Disabilities Act . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 7
EEOC Interpretation of the ADA Regarding Genetic Discrimination . . . . . 8
Supreme Court ADA Decisions . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 10
Privacy . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 13
State Statutes . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15
Legislation in the 106th Congress . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 15
Legislation in the 107th Congress . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . . 16

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Genetic Information: Legal Issues Relating
to Discrimination and Privacy
Background
On June 26, 2000, in a special ceremony at the White House, the completion of
the “rough draft” of sequence of the human genome was announced. More
specifically, the scientists involved in the Human Genome Project (HGP)1 reported
that this rough draft consists of overlapping fragments covering 97% of the human
genome, and a sequencing of 85%of the human genome.2 Within the next two or
three years, the entire sequence should be complete.3 These rapid advances provide
powerful tools for information about the causes, and potentially the cures, for diseases
such as diabetes, heart disease, Parkinson’s disease, bipolar illness, and asthma.
In recent testimony Dr. Francis Collins, the Director of the National Human
Genome Research Institute, described the dramatic progress of the Human Genome
Project and stated that “these revelations hold within them the promise of a true
transformation of medical practice. Quite possibly before the end of the first decade
of this new millennium, each of us may be able to learn our individual susceptibilities
to common disorders, in some cases allowing the design of a program of effective
individualized preventive medicine focused on lifestyle changes, diet and medical
surveillance to keep us healthy....These same discoveries about genetics likely will
lead us to predict who will respond most effectively to a particular drug therapy, and
who may suffer a side effect and out to avoid that particular drug.”4
1 The Human Genome Project, begun in 1990, is a 13 year effort coordinated by the U.S.
Department of Energy and the National Institutes of Health to identify all the estimated 80,000
genes in human DNA and to determine the sequences of the 3 billion chemical bases that make
up human DNA, store this information in data bases, develop tools for data analysis, and
address the ethical, legal, and social issues (ELSI) that may arise from the project. The
Human Genome Project is funded through the Department of Energy and the National
Institutes of Health. For more detailed information see “The National Human Genome
Research Institute,” [http://www.nhgri.nih.gov] and “Human Genome Research,”
[http://www.er.doe.gov/production/ober/hug_top.html]
2 “International Human Genome Sequencing Consortium Announces ‘Working Draft’ of
Human Genome,” [http://www/nhgri.nih.gov/NEWS/sequencing_consortium.html]
3 Testimony of Francis S. Collins, Director, National Human Genome Research Institute,
National Institutes of Health, Before the Senate Health, Education, Labor and Pensions
Committee (July 20, 2000).
4 Id.

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The first apparently successful genetic therapy has been recently reported5 and
in the not too distant future, the benefits of genetic therapy have been seen by some
as little short of miraculous with potential cures of major diseases such as heart
disease, and cancer, and Alzheimer’s. However, there have been numerous ineffective
efforts at gene therapy and at Senate hearings, held following the death of a patient
involved in gene therapy, Senator Frist stated that gene therapy holds “great promise,
but because gene therapy is an experimental, high risk procedure, there is a need for
vigilant oversight to ensure patient safety.”6
These scientific advances in genetics are not without other potential problems.
The ethical, social and legal implications of genetic research have been the subject of
significant scrutiny and a portion of the funds for the Human Genome Project are set
aside for use in analyzing these issues.7 As scientific knowledge about genetics
becomes increasingly widespread, numerous researchers and commentators, including
Dr. Francis Collins, have expressed concerns about how this information is to be
used.8 In recent congressional testimony, Dr. Collins stated: “while genetic
information and genetic technology hold great promise for improving human heath,
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.”9
This concern has encompassed fears of discrimination in many aspects of life,
including employment, and health and life insurance. A study on discrimination found
that a number of institutions, including health and life insurance companies, health
care providers, blood banks, adoption agencies, the military and schools, were
5 Rick Weiss, “Genetic Therapy Apparently Cures 2,” The Washington Post A-1 (April 28,
2000).
6 Testimony of Bill Frist United States Senator Tennessee Before the Senate Committee on
Health, Education, Labor and Pensions Subcommittee on Public Health, Gene Therapy: Is
there Oversight for Patient Safety?” (February 2, 2000).
7 The group working on these issues is referred to as the Ethical, Legal and Social
Implications (ELSI) program. See [http://www.nhgri.nih.gov/ELSI].
8 Testimony by Dr. Francis Collins, Director, National Center for Human Genome Research,
Before the Senate Committee on Labor and Human Resources (March 6, 1996). See also,
Hudson, Rothenberg, Andrews, Kahn, and Collins, “Genetic Discrimination and Health
Insurance: An Urgent Need for Reform,” 270 Science 391 (Oct. 20, 1995); Annas, Glantz and
Roche, “Drafting the Genetic Privacy Act: Science, Policy and Practical Considerations,” 23
J. of Law, Medicine and Ethics 360 (1995); Gostin, “Genetic Discrimination: The Use of
Genetically Based Diagnostic and Prognostic Tests by Employers and Insurers,” 17 Am. J.
of Law & Med. 109 (1991); Rothstein, Mark, Genetic Secrets: Protecting Privacy and
Confidentiality in the Genetic Era (1997).
9 Testimony of Francis S. Collins, Director, National Human Genome Research Institute,
National Institutes of Health, Before the Senate Health, Education, Labor and Pensions
Committee (July 20, 2000).

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reported to have engaged in genetic discrimination against asymptomatic individuals.10
The discriminatory practices included allegedly treating a genetic diagnosis as a
preexisting condition for insurance purposes, refusal by an adoption agency to allow
a woman at risk for Huntington’s disease to adopt based on the woman’s genetic risk,
and termination from employment after disclosure of a risk of Huntington’s disease.11
Similarly, another study reported that twenty-two percent of the respondents
indicated that they or a family member were refused health insurance as a result of a
genetic condition.12 This study was strongly criticized by the Health Insurance
Association of America (HIAA) which has argued that there is no evidence showing
that insurers engage in genetic discrimination and that federal legislation to prohibit
discrimination based on genetic information is unnecessary.13
A joint report by the Department of Labor, the Department of Health and Human
Services, the Equal Employment Opportunity Commission and the Department of
Justice summarized the various studies on discrimination based on genetic information
and argued for the enactment of federal legislation. The report stated that “genetic
predisposition or conditions can lead to workplace discrimination, even in cases where
workers are healthy and unlikely to develop disease or where the genetic condition
has no effect on the ability to perform work” and that “because an individual’s genetic
information has implications for his or her family members and future generations,
misuse of genetic information could have intergenerational effects that are far broader
than any individual incident of misuse.”14 Concluding that existing protections are
minimal, the report went on to call for the enactment of legislation which states that
(1) employers should not require or request that employees or potential employees
take a genetic test or provide genetic information as a condition of employment or
benefits, (2) employers should not use genetic information to discriminate against,
limit, segregate, or classify employees, and (3) employers should not obtain or
disclose genetic information about employees or potential employees under most
circumstances.15 According to the Labor Department report, employers should be
able to (1) use genetic information for monitoring for the effects of a particular
10 Geller, Alper, Billings, Barash, Beckwith, and Natowicz, “Individual, Family, and Societal
Dimensions of Genetic Discrimination: A Case Study Analysis,” 2 Science and Engineering
Ethics 71 (1996). The study has been criticized by the insurance industry as relying on
anecdotal information. See American Council of Life Insurance, “Statement Regarding the
Council for Responsible Genetics ‘Study’ on Genetic Discrimination” (April 11, 1996).
11 Id.
12 Lapham, E. Virginia, Kozma, Chahira, Weiss, Joan O., “Genetic Discrimination:
Perspectives of Consumers,” 274 Science 621 (October 25, 1996).
13 “Testimony of the HIAA on Genetic Testing,” Before the Senate Committee on Labor and
Human Resources, 105th Cong., 2d Sess. (May 21, 1998), reproduced at
[http://www.hiaa.org/news/news-state/genetictesting.html]
14 Department of Labor, Department of Health and Human Services, Equal Employment
Opportunity Commission, Department of Justice, “Genetic Information and the Workplace,”
[http://www.dol.gov/dol/_sec/public/media/reports/genetics.htm] 2-3 (January 20, 1998).
15 Department of Labor, Department of Health and Human Services, Equal Employment
Opportunity Commission, Department of Justice, “Genetic Information and the Workplace,”
[http://www.dol.gov/dol/_sec/public/media/reports/genetics.htm] at 7 (January 20, 1998).

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substance in the workplace under certain circumstances, and (2) disclose genetic
information for research and other purposes with the written, informed consent of the
individuals. In addition, the report states that the statutory authority of federal
agencies or contractors to promulgate regulations, enforce workplace safety and
health laws, or conduct occupational or other health research should not be limited.16
It should be emphasized that legal issues relating to genetics may vary depending
on whether insurance, employment or other types of discrimination, or medical
research are involved. Approaches to addressing the issues raised in these contexts
vary from taking no legislative action, addressing certain specific concerns (as was
done in the Health Insurance Portability and Accountability Act), or more far reaching
approaches such as comprehensive legislation on genetics or legislation focused on
all medical records, including genetics.
Generally legal issues raised regarding genetics have been based on two main
concepts: privacy and discrimination. The privacy interests of an individual in his or
her genetic information have been seen as significant and protecting these interests is
seen as making discriminatory actions based on this information less likely. However,
another approach would be to prohibit this potential misuse of the information by
prohibiting discrimination. Some statutes, like the Americans with Disabilities Act
(ADA), 42 U.S.C. §§ 12101 et seq., take a two-pronged approach to similar issues
regarding medical information about disabilities by both protecting the confidentiality
of the information and by prohibiting discriminatory acts.
Currently there are no federal laws that directly and comprehensively address the
issues raised by the use of genetic information. There are, however, a few laws that
address parts of these issues but the only federal law that directly addresses the issue
of discrimination based on genetic information is the Health Insurance Portability and
Accountability Act. On February 8, 2000, President Clinton issued an executive order
prohibiting discrimination against federal employees based on protected genetic
information. On December 20, 2000, the Department of Health and Human Services
issued final regulations on medical privacy which are not specific to genetics but cover
all personal health information.17 This rule went into effect on April 14, 2001.18 In
addition, many states have enacted laws which vary widely in their approaches to
genetic information.
16 Id.
17 65 Fed. Reg. 82460 (Dec. 20, 2000).
18 For a discussion of the rule see Gina Marie Stevens, “A Brief Summary of the Medical
Privacy Rule,” CRS Report RS20934.

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The Health Insurance Portability and Accountability
Act of 1996
P.L. 104-191, the Health Insurance Portability and Accountability Act of 199619,
has been hailed as taking “important steps toward banning genetic discrimination in
health insurance” but has also been criticized as not going far enough.20 The Act
prohibits a group health plan or issuer of a group health plan from using genetic
information to establish rules for eligibility or continued eligibility and provides that
genetic information shall not be treated as a preexisting condition in the absence of
the diagnosis of the condition related to such information. It also prohibits a group
health plan or issuer of a group health plan from using genetic information in setting
a premium contribution. However, the Act would not prohibit group health plans or
issuers of plans (i.e., insurers) from requiring or requesting genetic testing, does not
require them to obtain authorization before disclosing genetic information, and does
not prevent them from excluding all coverage for a particular condition or imposing
lifetime caps on all benefits or on specific benefits. In addition, this Act does not
address the issues of the use of genetic information in contexts other than health
insurance such as employment.21
Executive Order
On February 9, 2000, President Clinton signed Executive Order 13145
prohibiting genetic discrimination against employees in federal executive departments
and agencies. In announcing the executive order at a meeting of the American
Association for the Advancement of Science, the President stated that “This
extraordinary march of human understanding imposes on us a profound responsibility
to make sure that the age of discovery can continue to reflect our most cherished
values.”22 Many commentators lauded the executive order, and quoted with approval
its description as “preventive policy making– to put in place the kind of protections
that the public needs and deserves before we find ourselves in a needless crisis
situation.”23 However, it has also been criticized both on a philosophical level24 and
19 For a general discussion of this Act see Beth Fuchs, Bob Lyke, Richard Price, and
Madeleine Smith , “The Health Insurance Portability and Accountability Act (HIPAA) of
1996: Guidance on Frequently Asked Questions,” CRS Report 96-805.
20 Statement of Rep. Louise Slaughter Before the House Science Subcommittee on
Technology, Hearing on Technological Advance in Genetic Testing: Implications for the
Future, September 17, 1996.
21 It should also be noted the HIPAA contains certain requirements regarding the
standardization of claims that raise potential privacy issues. HIPAA addressed these issues
by requiring either congressional action or regulatory action to protect privacy. A more
detailed discussion of this issue is contained in the section on privacy.
22 “President’s Order Bars Discrimination Based on Genetics,” Investor’s Business Daily A9
(February 9, 2000).
23 Wendy R. Uhlmann, “When Genes are Decoded, Who Should See the Results?; Every one
(continued...)

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in the details of its coverage.25 The EEOC has issued guidance on the executive
order.26
The executive order defines “protected genetic information” as “(A) information
about an individual’s genetic tests; (B) information about the genetic tests of an
individual’s family members; or (C) information about the occurrence of a disease; or
medical condition or disorder in family members of the individual.” Current health
status information would not be protected under this executive order unless it was
derived from the information described above.
The executive order requires executive departments and agencies to implement
the following nondiscrimination requirements:
! the employing entity shall not discharge, fail or refuse to hire, or otherwise
discriminate against any employee because of protected genetic information or
because of information about a request for or receipt of genetic services;
! the employing entity shall not limit, segregate or classify employees in any way
that would deprive or tend to deprive any employee of employment
opportunities or otherwise adversely affect that employee’s status because of
protected genetic information or because of information about a request for or
receipt of genetic services;
! the employing entity shall not request, require, collect, or purchase protected
genetic information with respect to an employee or information about a request
for or receipt of genetic services;
! the employing entity shall not disclose protected genetic information with
respect to an employee or information about a request for or receipt of genetic
services with certain exceptions;
! the employing entity shall not maintain protected genetic information or
information about a request for or receipt of genetic services in general
23(...continued)
of us at Risk,” The New York Times F7 (February 29, 2000).
24 Michael Kinsley, editor of Slate, an online magazine, observed that “genetic discrimination
is universal, inevitable and, in some ways, essential....Practice, practice will get you to
Carnegie Hall, but only if you’ve been born on the right bus....The world would be a poorer
place if it did not distinguish between me and Yo-Yo Ma in doling out opportunities to be a
concert cellist.” Michael Kinsley, “Genetic Correctness,” The Washington Post A29 (April
18, 2000).
25 Mark A. Hall, a law professor at Wake Forest University, argues that the order’s
prohibition of considering predictive genetic information would not allow for the screening of
susceptibility to toxic exposure prior to working in such an environment and would not allow
for the use of genetic predispositions to future conditions that could effect job performance.
Mark A. Hall, “When Genes are Decoded, Who Should See the Results?; Many ‘Greatly
Overestimate the Risk’,” The Washington Post F7 (February 29, 2000).
26 [http://www.eeoc.gov/docs/guidance-genetic.html]

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CRS-7
personnel files. Such materials shall be treated as confidential medical records
and kept separate from personnel files.
There are certain exceptions to these prohibitions. For example, the employing
entity may request or require information if such current condition could prevent the
applicant or employee from performing the essential functions of the job, or where it
is to be used exclusively to determine whether further medical evaluation is needed
to diagnose a current disease. Genetic monitoring of biological effects of toxic
substances in the workplaces are permitted in certain circumstances.
The Americans with Disabilities Act
The Americans with Disabilities Act (ADA), 42 U.S.C. § 12101 et seq., prohibits
discrimination against an individual with a disability in employment, public services,
public accommodations, and communications. The threshold issue in any ADA case
is whether the individual alleging discrimination is an individual with a disability. The
act defines the term disability with respect to an individual as having “(A) a physical
or mental impairment that substantially limits one or more of the major life activities
of such individual, (B) a record of such an impairment; or (C) being regarded as
having such an impairment.”27 Although the statutory language of the ADA does not
reference genetic traits, there was a discussion of the issue during congressional
debate.28 So far there have been no judicial decisions but one case was brought by
the EEOC and settled. In addition, Terri Seargent filed with the EEOC alleging
genetic discrimination and received a determination on November 21, 2000 that the
EEOC’s investigation supported her allegation of discrimination under the ADA.29

27 42 U.S.C. §12102.
28 Rep. Owens stated that “[t]hese protections of the ADA will also benefit individuals who
are identified through genetic tests as being carriers of a disease-associated gene. There is a
record of genetic discrimination against such individuals, most recently during sickle cell
screening programs in the 1970's. With the advent of new forms of genetic testing, it is even
more critical that the protections of the ADA be in place. Under the ADA, such individuals
may not be discriminated against simply because they may not be qualified for a job sometime
in the future. The determination as to whether an individual is qualified must take place at the
time of the employment decision, and may not be based on speculation regarding the future.
Moreover, such individuals may not be discriminated against because they or their children
might incur increased health care costs for the employer.” 136 Cong. Rec. H 4623 (daily ed.
July 12, 1990) (remarks of Rep. Owens). Similarly, Rep. Edwards and Rep. Waxman also
stated that individuals who are carriers of a disease-associated gene may not be discriminated
against under the ADA. 136 Cong. Rec. H 4625 (daily ed. July 12, 1990) (Statement of Rep.
Edwards); Id. at H 4627 (Statement of Rep. Waxman).
2 9 “Update on Terri Seargent’s Genetic Discrimination Case,”
[http://ww.alpha.org/newsmakers/index.htm]

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EEOC Interpretation of the ADA Regarding Genetic
Discrimination
The ADA has been interpreted by the Equal Employment Opportunity
Commission (EEOC) as including genetic information relating to illness, disease, or
other disorders.30 The legislative history was cited by the EEOC in its guidance to the
definition of disability for its compliance manual. In this guidance, the EEOC
examined the definition of disability under the ADA, noting that the definition was
composed of three prongs: disability means (1) a physical or mental impairment that
substantially limits one or more of the major life activities of an individual, (2) a
record of such an impairment, or (3) being regarded as having such an impairment.31
It was under the third prong that the EEOC determined that discrimination based on
genetic information relating to illness, disease, or other disorders was prohibited.32
Although this EEOC interpretation was widely heralded as a significant step for
the protection of rights for individuals whose genes indicate an increased susceptibility
to illness, disease or other disorders, it is limited in its application and may be even
more limited after the recent Supreme Court decisions on the definition of disability.33
30 Equal Employment Opportunity Commission, Compliance Manual, vol. 2, section 902,
order 915.002,902-45 (1995). It is also possible that title VII of the Civil Rights Act of
1964, 42 U.S.C. § 2000e et seq.,may provide some protection against certain kinds of genetic
discrimination since an argument could be made that discrimination based on genetic disorders
that are racially or ethnically based, such as sickle cell disease, is prohibited under title VII.
However, there are relatively few genetic conditions that have a strong connection with a
racial or ethnic group, thus limiting the scope of potential coverage.
31 42 U.S.C. §12102(2).
32 The EEOC gave the following example of its application of the third prong of the definition
to genetic discrimination.
CP’s genetic profile reveals an increased susceptibility to colon cancer. CP is currently
asymptomatic and may never in fact develop colon cancer. After making CP a conditional
offer of employment, R learns about CP’s increased susceptibility to colon cancer. R then
withdraws the job offer because of concerns about matters such as CP’s productivity,
insurance costs and attendance. R is treating CP as having an impairment that substantially
limits a major life activity. Accordingly CP is covered by the third part of the definition of
disability.
33 Prior to the Supreme Court’s decisions there were three major limitations on the EEOC
interpretation. First, the ADA specifically excludes insurance from its coverage except that
this exclusion “shall not be used as a subterfuge to evade the purposes of title I and III.” The
exact parameters of this provision, especially as it relates to genetic information, are unclear
although it would appear fair to say the nondiscrimination protections for individuals with
certain genes would be considerably stronger in the employment context than when such
individuals are being considered for insurance coverage. Second, the EEOC interpretation is
part of guidance issued in its compliance manual. Specific prohibitions of discrimination in
this area were not included in the statute and were also not part of the EEOC’s regulations.
Even if a court gives deference to the guidance as indicative of the agency’s view of the
statute, a court would not likely give such guidance the deference it would accord to statutory
or regulatory language. In addition, even assuming the ADA was found to apply, it may not
(continued...)

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However, the EEOC has not withdrawn this guidance and at recent Senate hearings,
EEOC Commissioner Paul Miller stated that the ADA “can be interpreted to prohibit
employment discrimination based on genetic information. However, the ADA does
not explicitly address the issue and its protections are limited and uncertain.” In
addition, Commissioner Miller observed that even if the ADA were found to cover
genetic discrimination, the requirements of the ADA may not protect workers from
all types of genetic discrimination. He stated, “for example, the ADA does not
protect workers from requirements or requests to provide genetic information to their
employers....In addition, once the applicant is hired, the employer may request that
the employee take a medical exam, such as a genetic test, if the employer can
demonstrate that the information from that test is job related and consistent with
business necessity.”34
The first ADA case alleging genetic discrimination was filed with the EEOC by
Terri Seargent. Ms. Seargent, whose situation was extensively discussed during
Senate debate on genetic discrimination in the 106th Congress, had a promising career
as a manager for a small insurance broker in North Carolina. She had positive
performance evaluations but after medical tests determined that she had Alpha 1
Antitrypson Deficiency, a condition that affects the lungs and liver, and she began
taking expensive medication, she was terminated from her employment.35 Ms.
Seargent filed with the EEOC alleging genetic discrimination and received a
determination on November 21, 2000 that the EEOC’s investigation supported her
allegation of discrimination under the ADA.36
The EEOC settled its first court action challenging the use of workplace genetic
testing under the ADA against Burlington Northern Santa Fe Railway (BNSF). The
settlement, announced on April 18, 2001, ended genetic testing of employees who
filed claims for work-related injuries based on carpal tunnel syndrome. EEOC
Commissioner Paul Steven Miller stated “The Commission will continue to respond
aggressively to any evidence that employers are asking for or using genetic tests in a
manner that violates the ADA. Employers must understand that basing employment
decisions on genetic testing is barred under the ADA’s “regarded as” prong, as stated
in EEOC’s 1995 policy guidance on the definition of the term “disability.” Moreover,
33(...continued)
protect employees from having their employers have access to their genetic information.
Although the ADA prohibits an employer from making medical inquiries prior to a job offer,
the employer may obtain medical information in certain cases after the offer of employment
has been made. Even if the prohibitions against discrimination in the ADA would apply, it
would be difficult to prove that genetic information was the reason for discrimination. This
raises issues relating to the privacy of genetic information which are beyond the scope of this
memorandum.
34 Statement of Commissioner Paul Steven Miller, U.S. Equal Employment Opportunity
Commission, Before the Senate Committee on Health, Education, Labor and Pensions (July
20, 2000.
35 146 Cong. Rec. S6050 (daily ed. June 29, 2000)(remarks of Sen. Kennedy).
3 6 “Update on Terri Seargent’s Genetic Discrimination Case,”
[http://ww.alpha.org/newsmakers/index.htm]

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genetic testing, as conducted in this case, also violates the ADA as an unlawful
medical exam.”37
Supreme Court ADA Decisions
Although the combination of the ADA’s legislative history and the EEOC’s
guidance has led commentators to argue that the ADA would cover genetic
discrimination, the merit of these arguments has been uncertain since there have been
no reported cases holding that the ADA prohibits genetic discrimination. This
uncertainty has increased in light of recent Supreme Court decisions on the ADA.
The first Supreme Court ADA case to address the definition of disability was
Bragdon v. Abbott, a 1998 case involving a dentist who refused to treat an HIV
infected individual outside of a hospital.38 In Bragdon, the Court found that the
plaintiff’s asymptomatic HIV infection was a physical impairment impacting on the
major life activity of reproduction thus rending HIV infection a disability under the
ADA. In two 1999 cases the Court examined the definitional issue whether the effects
of medication or assistive devices should be taken into consideration in determining
whether or not an individual has a disability. The Court in the landmark decisions of
Sutton v. United Airlines39 and Murphy v. United Parcel Service, Inc,40 held,
contrary to the interpretation given by the EEOC, that the “determination of whether
an individual is disabled should be made with reference to measures that mitigate the
individual’s impairment....”41 In reaching this holding, the Court looked to the first
prong of the definition of disability (having a physical or mental impairment that
substantially limits one or more of the major life activities of an individual) and
emphasized that the phrase “substantially limits” appears in the present indicative verb
form “requiring that a person be presently — not potentially or hypothetically —
substantially limited in order to demonstrate a disability.” In Albertsons Inc. v.
Kirkingburg42 the Court held unanimously that the ADA requires proof that the
limitation on a major life activity by the impairment is substantial. The Court in
Sutton also looked at the findings enacted as part of the ADA which stated that “some
43,000,000 Americans have one or more physical or mental disabilities” and found
that this figure was inconsistent with the argument that the statute covered individuals
without looking at the mitigating effects of medications or devices. The
37 [http://www.eeoc.gov/press/4-18-01.html]
38 524 U.S. 624 (1998). For a more detailed discussion of this decision see Jones, “The
Americans with Disabilities Act: HIV Infection is Covered Under the Act,” CRS Report 98-
599 (July 10, 1998).
39 527 U.S. 471 (1999).
40 527 U.S. 516 (1999).
41 Sutton v. United Airlines. See also Murphy v. United Parcel Service, where the Court held
that the determination of whether the petitioner’s high blood pressure substantially limits one
or more major life activities must be made considering the mitigating measures he employs.
42 527 U.S. 555 (1999).

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individualized nature of the inquiry into whether an individual was an individual with
a disability was emphasized.
Although the Court’s decision in Sutton did not turn on the third prong of the
definition of disability (being “regarded as having such an impairment”) the Court did
address the interpretation of this part of the definition. There are two ways, the Court
stated, that an individual can fall within the “regarded as” prong: (1) a covered entity
mistakenly believes that a person has a physical impairment that substantially limits
one or more major life activities, or (2) a covered entity mistakenly believes that an
actual impairment substantially limits one or more major life activities. The Court
found that, on its own, the allegation that an entity has a vision requirement in place
does not establish a claim that the entity regards an individual as substantially impaired
in the major life activity of working. The term “substantially limits” was regarded as
significant. It requires “at a minimum, that plaintiffs allege they are unable to work
in a broad class of jobs.” The Court emphasized that it was “assuming without
deciding” that working is a major life activity and that the EEOC regulations
interpreting “substantially limits” are reasonable and found that even using the EEOC
interpretation, the plaintiffs in Sutton failed to allege adequately that their vision is
regarded as an impairment that substantially limits them in a major life activity. Being
precluded from being a global airline pilot was not sufficient since they could obtain
other, although less lucrative jobs, as regional pilots or pilot instructors.
The “regarded as” prong was directly at issue in Murphy. In Murphy the Court
held that the fact that an individual with high blood pressure was unable to meet the
Department of Transportation (DOT) safety standards was not sufficient to create an
issue of fact regarding whether an individual is regarded as unable to utilize a class of
jobs. Like Sutton, the holding in Murphy emphasized the numerous other jobs
available to the plaintiff.
The Supreme Court’s decisions on the ADA did not directly address genetic
discrimination and it is possible that the ADA could be interpreted to cover a
particular genetic defect. However, the reasoning used in the Court’s recent decisions
appears to make it unlikely that an ADA claim based on genetic discrimination would
be successful. There are several factors that lead to this conclusion.
First, the Supreme Court in Sutton specifically struck down an interpretation by
the EEOC regarding the use of mitigating factors and raised questions concerning the
validity of the EEOC’s interpretation. The Court also found no statutory authority
for agency interpretation of the definition of disability. The EEOC had taken the
position that whether or not an individual has a disability should be determined by
what his or her condition would be without medication or an assistive device.
Rejecting this EEOC interpretation, in Sutton the Supreme Court noted that no
agency was given the authority to interpret the term “disability” but that because both
parties accepted the regulations as valid “we have no occasion to consider what
deference they are due, if any.” Similarly, in Murphy the Court clearly stated that its
use of the EEOC regulations did not indicate that the regulations were valid.
However, in its earlier decision in Bragdon v. Abbott, the Court had found its
conclusion that HIV infection was covered by the ADA to be “reinforced by
administrative guidance issued by the Justice Department....” The cases subsequent
to Bragdon did not examine this seeming contradiction so exactly how a future

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decision would view EEOC regulations and guidance is uncertain. This issue is
especially important regarding potential cases of genetic discrimination since the
EEOC has published guidance indicating that the ADA covers genetic
discrimination,43 and there are no reported cases.
Similarly, the Supreme Court showed little indication to examine the legislative
history of the ADA. The Court in Sutton held that it was not necessary to consider
the legislative history of the ADA regarding the issue of whether individuals should
be examined in their uncorrected state or with the use of mitigating medications or
devices. It found that the statutory language was sufficient to support its holding on
this issue. Although the issue regarding genetic discrimination is distinct from that of
the use of mitigating medications and devices, the Court’s general reluctance to
examine legislative history in Sutton may indicate that the language on genetic
discrimination quoted above from the congressional debates also would not be
examined.
The Court’s reliance in Sutton upon the findings in the ADA that 43,000,000
Americans have one or more physical disabilities also indicates that the Court may not
find genetic defects to be covered. The number of individuals cited in the findings as
having a disability was seen by the Court as inconsistent with the argument that the
statute covered individuals whose disabilities were mitigated by medications or
devices. Since the prevalence of genetic defects is believed to be widespread,
coverage of genetic defects could arguably include almost every individual. Thus, it
is possible that the Court could use the same rationale as in Sutton to find genetic
defects not included.
In Bragdon v. Abbott, where the Court found that HIV infection was covered
under the ADA, the majority opinion spent considerable time discussing the
immediate physiological effects of the infection. This would appear to be consistent
with the holding in Sutton that the “substantially limits” definitional language requires
that the substantial limitation not be potential or hypothetical. This reasoning could
be contrasted to the situation presented by genetic defects which in many cases do not
ever manifest. Interestingly, in his dissenting opinion in Bragdon v. Abbott, Chief
Justice Rehnquist, who was in the majority in Sutton, stated that the argument
regarding coverage of HIV infection “taken to its logical extreme, would render every
individual with a genetic marker for some debilitating disease ‘disabled’ here and now
because of some possible future effects.” Whether the Court would now share the
Chief Justice’s view that such coverage of genetic discrimination is an invalid
interpretation of the definition is uncertain, especially since the Court in Bragdon was
discussing the first prong of the definition, not the “regarded as” prong which is the
most likely basis for coverage of genetic defects.
In its recent cases the Court provided considerable guidance concerning the
“regarded as” prong of the definition of disability, the most likely aspect of the
definition to be used to find coverage of genetic defects. Including the requirement
that the individual be regarded as “substantially limited” in a major life activity, the
Court found that this language meant that being precluded from a particular job was
43 EEOC Compliance Manual, Vol. 2, section 902, order 915.002,902-45 (1995).

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not sufficient to be substantially limited in the major life activity of working if other
jobs in the same class could be obtained. And when this specific issue was raised in
Murphy, the plaintiff was not found to be regarded as substantially limited in the
major life activity of working. The main point of this rather complicated discussion
is that making the case that one is regarded as substantially limited in a major life
activity, particularly the major life activity of working, is likely to be difficult.
The Supreme Court’s recent decisions do not directly address ADA coverage of
genetic discrimination. They emphasize an individualized approach to the
determination of whether an individual has a disability under the ADA. Although an
argument could be made that the ADA would cover individuals with genetic defects
in certain cases, the Court’s most recent decisions, particularly Sutton and Murphy,
use reasoning that would make it unlikely that most ADA claims based on genetic
discrimination would be successful.
In addition, even assuming the ADA was found to apply, it may not protect
employees from having their employers have access to their genetic information.
Although the ADA prohibits an employer from making medical inquiries prior to a job
offer, the employer may obtain medical information in certain cases after the offer of
employment has been made. Assuming that the prohibitions against discrimination in
the ADA would apply, it is difficult to prove that genetic information was the reason
for discrimination. This raises issues relating to the privacy of genetic information.
Privacy
Although the Constitution does not expressly provide for a right to privacy, the
Supreme Court has found some right to informational privacy.44 However, these
rights are limited by judicial deference to government’s need to acquire the
information and by the fact that such a constitutional right would be limited to state
action. As a practical matter, this would mean that federal or state collections of
information may receive some constitutional protection but the collection and use of
information by private health plans or organizations would not be covered.45 Certain
federal statutes may provide some privacy protection for medical records. The
Privacy Act of 1974, 5 U.S.C. § 552a, prohibits the disclosure of records maintained
on individuals by federal government agencies except under certain conditions.
Subsection 552a(f)(3) allows agencies to establish special procedures for individuals
who wish to access their medical records. The intent of this provision as described
in the House report was to ensure rules so that an individual who would be adversely
affected by the receipt of such data may be apprized of it in a manner which would not
cause such adverse effects.46
44 See e.g., Whalen v. Roe, 429 U.S. 589 (1977).
45 For a more discussion of this issue see Gostin, “Genetic Privacy,” 23 J. of Law, Medicine
& Ethics 320 (1995).
46 H.Rept. 93-1416. 93d Cong., 2d Sess. 16-17 (1974).

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The Freedom of Information Act (FOIA), 5 U.S.C. §§ 552 et seq., establishes
a right of access to records maintained by agencies within the executive branch of the
federal government. It contains several exemptions, including one for “personnel and
medical files and similar files the disclosure of which would constitute a clearly
unwarranted invasion of personal privacy.”47 Both the Privacy Act and FOIA may,
then, provide some privacy protections for genetic information but they are limited
in their scope and would not encompass information held by a private entity.48
The Health Insurance Portability and Accountability Act (HIPAA) contains
requirements for the standardization of electronically transmitted health insurance
financial claims and administrative transactions, such as the submission of claims,
processing of enrollments, verification of insurance eligibility, and payment and
remittance advice. HIPAA required the Secretary of Health and Human Services
(HHS) to make recommendations to Congress by August 1997 concerning the
protection of privacy of individually identifiable health information and Congress had
until August 1999 to enact legislation on this issue. If Congress did not enact
legislation, HIPAA requires the Secretary of HHS to promulgate regulations on
privacy protections. The Secretary of HHS issued final regulations on December 20,
2000.49
The final privacy regulations, which became effective on April 14, 2001, apply
to health insurers, providers, and health care clearinghouses and require patient
consent for most sharing of personal health information. The final regulations cover
all personal health information in paper, oral or electronic form and limit disclosure
of personal health information to the minimum amount necessary for the purposes of
the disclosure except where medical records are transferred for the purposes of
treatment. Companies that sponsor health plans are prohibited from accessing
personal health information for employment purposes unless the patient consents.
Civil money penalties are provided and egregious violations carry federal criminal
penalties of up to $250,000 and ten years in prison. Although these regulations are
general and not specific to genetics, they will have an effect on genetic information.
In the comments to the regulations, the Department noted that many commentators
requested additional protections for sensitive information, including genetic
information. In response, the Department noted that generally the regulations do not
differentiate among types of protected health information.50
47 5 U.S.C. §552(b)(6).
48 For a discussion of recent developments in medical records privacy see Stephen Redhead,
“Medical Records Privacy: Questions and Answers on the December 2000 Federal
Regulation,” CRS Report RS20500.
49 65 Fed. Reg. 82461 (Dec. 20, 2000). For a more detailed discussion see Stephen Redhead,
“Medical Records Privacy: Questions and Answers on the December 2000 Federal
Regulation,” CRS Rept. RS20500 and Gina Marie Stevens, “A Brief Summary of the
Medical Privacy Rule,” CRS Report RS20934.
50 65 Fed. Reg. 82731 (Dec. 20, 2000).

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State Statutes
Although there is limited federal law relating to the use of genetic information,
many states have enacted statutes dealing with various aspects of these issues. Early
state statutes focused on particular genetic conditions. The first statute to prohibit
discrimination based on a genetic trait was enacted in North Carolina and prohibited
employment discrimination based on the sickle cell trait. In 1991 Wisconsin became
the first state to enact a comprehensive law to prohibit discrimination based on genetic
test results. Currently, the states vary in their provisions with some prohibiting
discrimination in employment while others deal solely with discrimination in
insurance. A recent survey of state law found that twenty-eight states have enacted
genetic nondiscrimination in employment laws.51 A related survey found that thirty-
four states have passed laws strictly prohibiting the use of genetic information for risk
selection and risk classification purposes.52 One of the most contentious aspects of the
state legislation has been the definition of genetic information. Some states, like
Michigan, limit nondiscrimination protections to the results of genetic tests. On the
other hand, New Jersey prohibits the use of information about genes, gene products
or inherited characteristics that may derive from an individual or family member. This
would include information such as family history which is often used in insurance
underwriting.
Although these state statutes do provide some types of coverage, they do not
cover employer self-funded plans providing private health insurance for employees
and their dependents. These plans are exempt from state insurance laws due to the
preemption provision in the federal Employee Retirement Income Security Act
(ERISA).53 Since it has been estimated that over one-third of the nonelderly insured
population obtains its coverage through self-funded plans and these types of plans are
increasing, the ERISA exemption limits the application of state laws significantly.54
Legislation in the 106th Congress
Although legislation specifically relating to genetic discrimination and privacy
was not enacted during the 106th Congress, a provision relating to health insurance
was considered in the conference on H.R. 2990. The Senate amended H.R. 2990 as
passed by the House, striking all the language after the enacting clause and
51 National Conference of State Legislatures Genetics Tables, State Genetic
N o n d i s c r i m i n a t i o n i n E m p l o y m e n t L a w s ,
[wysiwyg://25/http://www.ncsl.org/programs/health/genetics/ndiscrim.htm]
52 National Conference of State Legislatures Genetics Tables, State Genetic
N o n d i s c r i m i n a t i o n i n H e a l t h I n s u r a n c e L a w s ,
[wysiwyg://28/http://www.ncsl.org/programs/health/genetics/ndishlth.htm]
53 29 U.S.C. §§ 1001-1145.
54 Hudson, “Genetic Discrimination and Health Insurance: an Urgent Need for Reform,” 270
Science 391 (1995); Rothenberg, “Genetic Information and Health Insurance: State
Legislative Approaches,” 23 J. of Law, Med. & Ethics 312 (1995).

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substituting the language in S. 1344. This Senate bill would have amended ERISA,
the Public Health Services Act and the Internal Revenue Code to prohibit health plans
or health insurance issuers, in both group and individual markets, from using
predictive genetic information to set premiums. It also contained confidentiality
provisions.55
Senator Daschle had offered a more comprehensive amendment to the FY 2001
Labor-HHS Appropriations bill, S. 2553. It would have prohibited insurance
companies from raising premiums or denying coverage on the basis of genetic tests
and would have also barred employers from using predictive genetic information to
make employment-related decisions. The amendment was defeated by a vote of 54-
44.
Legislation in the 107th Congress
Legislation relating to genetic discrimination and privacy has continued to be a
major issue in the 107th Congress. The Senate version of the Patient Protection Act,
S. 1052, which passed the Senate on June 29, 2001, contains an amendment
prohibiting certain genetic discrimination by group health plans and health insurance
issuers. It also contains a provision relating to confidentiality.56
Other Senate legislation has taken various approaches. S. 318, introduced by
Senator Daschle, would prohibit genetic nondiscrimination in health insurance and
employment. S. 19, the Protecting Civil Rights for all Americans Act introduced by
Senator Daschle, contains nondiscrimination provisions relating to insurance and
employment. Senator Snowe has introduced S. 382, the Genetic Information
Nondiscrimination in Health Insurance Act of 2001, which would prohibit
discrimination in insurance. S. 450, the Financial Institution Privacy Protection Act
of 2001 introduced by Senator Nelson, contains provisions protection the privacy of
health information, including genetic information.57
In the House, Representative Slaughter has introduced H.R. 602, the Genetic
Nondiscrimination in Health Insurance and Employment Act, which would prohibit
genetic discrimination in insurance and employment.
55 For a more detailed discussion see Judy Hearne and Hinda Chaikind, “Side-by-Side
Comparison of H.R. 2990 and the Senate Amendment for Patient Protection,” CRS Report
RL30144.
56 For a more detailed discussion of the Patient Protection Legislation see Jean Hearne,
“Patient Protection and Managed Care: Legislation in the 107th Congress,” CRS Issue Brief
IB98017.
57 For a more detailed discussion of this legislation see M. Maureen Murphy, “Privacy
Protection for Customer Financial Information,” CRS Report RS20185.

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