Position Paper on Genetic Discrimination Legislation 

March 4, 2002 

National Council on Disability 

1331 F Street, NW, Suite 850 

Washington, DC 20004 

202-272-2004 Voice 

202-272-2074 TTY 

202-272-2022 Fax 

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). 

• 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, 

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. 

2 
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 2000, they planned to 

check the genetic status of prospective employees and their dependents before making 

employment offers.8 

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). 

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). 

3 
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 

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.

4 
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 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 

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. 

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. 

5 
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 genetic-based 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 Act

30 

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 

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). 

6 
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 employer’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 

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). 

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). 

7 
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 

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 

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 AntiDiscrimination 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. 

8 
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 

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. 

9 
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 genetic 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 

50 Gostin, supra note 8, at 142. 

10 
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. 

11 
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 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 

51 See Feldblum, supra note at 39. 

12 
information, it should also ensure that if these individuals are eventually diagnosed with medical 

conditions, they will be protected against discrimination. 

13