The Human Genome Project (HGP) is a coordinated, international research effort, jointly managed by the U.S. Department of Energy and the National Institutes of Health, to analyze the structure of human DNA and to map and sequence the estimated 50,000 to 100,000 human genes. The HGP will improve technology for biomedical research and influence medicine, including reproductive planning, prenatal diagnosis and treatment, and preventive and therapeutic health treatment for a range of genetically related illnesses. Recognizing that the acquisition and use of genetic information has enormous individual and societal implications, analysis of the ethical, legal, and social implications of genetic knowledge has been an important component of the HGP research effort. For a discussion of the HGP, see, for example, National Human Genome Research Institute, The Human Genome Project (visited Oct. 27, 1998) <http://www.nhgri.nih.gov/HGP>; Patrinos, A. Drell, D.W., “Introducing the Human Genome Project: Its Relevance, Triumphs, and Challenges,” The Judges' Journal, 36 (1997): 3, 5–10; and Rothstein, M.A., “Genetic Discrimination in Employment and the Americans with Disabilities Act,” Houston Law Review, 29 (1992): At 24–25.Google Scholar

See Armour, S., “Workers Fear Genetic Discrimination,” USA Today, Feb. 25, 1998, at 4B.Google Scholar

See Joint Report of Department of Labor, Department of Health and Human Services, Equal Employment Opportunity Commission, and Department of Justice, Genetic Information and the Workplace, at 2 (Jan. 20, 1998) (unpublished) (citing Harris Poll, no. 34 (1995)).Google Scholar

See Lapham, E.V. Kozma, C. Weiss, J.O., “Genetic Discrimination: Perspectives of Consumers,” Science, 274 (1996): At 621–24 (noting that survey findings are applicable only to the group studied because volunteers for this study were recruited through genetic support groups and did not constitute a statistically representative sample). The Health Insurance Association of America, which represents approximately 200 health insurers and managed care corporations, contends that fears of genetic discrimination are “overblown,” because existing surveys of discrimination are usually self-selected, based on individual's perceptions of discrimination, and not statistically representative samples. See Swanson, K.C., “New Tests, New Concerns,” National Journal, Jan. 4, 1996, at 29; and Health Insurance Association of America, Genetic Testing: Media Kit (visited Oct. 27, 1998) <http://www.hiaa.org/newsroom/genetic.html#1> (criticizing the study by Virginia Lapham, E. Kozma, Chahira Weiss, Joanne, id., in particular).Google Scholar

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Cystic fibrosis is an inherited multisystem disorder that is characterized by abnormal functioning of the endocrine gland and results in chronic progressive disease of the respiratory system for nearly all patients. See Braunwald, E., eds., Harrison's Principles of Internal Medicine (New York: McGraw-Hill, 11th ed., 1987): At 1085–86.Google Scholar

Huntington's disease is an untreatable, hereditary autosomal disorder that is characterized by involuntary movements and progressive dementia. See id. at 2014–15.Google Scholar

See Lapham, Kozma, Weiss, supra note 4.Google Scholar

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See Rothenberg, K., “Genetic Information in the Workplace: Legislative Approaches and Policy Changes,” Science, 275 (1997): At 1755–57; Lapham, Kozma, Weiss, supra note 4, at 621 (noting that fears of genetic discrimination may affect the number of individuals willing to participate in scientific research); and Gostin, L., “Genetic Discrimination: The Use of Genetically Based Diagnostic and Prognostic Tests by Employers and Insurers,” American Journal of Law & Medicine, XVII (1991): At 113 (noting that benefits of genetic data collection will not be achieved if fear of discrimination deters people from genetic diagnoses).Google Scholar

See Kolata, G., “Advent of Testing for Breast Cancer Genes Leads to Fears of Disclosure and Discrimination,” New York Times, Feb. 4, 1997, at C1.Google Scholar

As Karen Rothenberg has noted, this lack of data is not surprising because there is an inherent problem in documenting actual genetic discrimination: Because individuals must reveal that they have, or are at risk for, genetic abnormalities in order to register a discrimination complaint, many will not file a complaint because they have too much to lose by revealing this confidential information. See Kopinsky, S.M., “Genetic Discrimination is Less Widespread than Feared,” Health Care News Server (Nov. 20, 1997) <http://www.healthcarenewsserver.com/stories/HCN1997112000021.shtml> (reporting Rothenberg's comments at an October 29, 1997 panel on Genetic Testing in the Marketplace).+(reporting+Rothenberg's+comments+at+an+October+29,+1997+panel+on+Genetic+Testing+in+the+Marketplace).>Google Scholar

See, for example, Billings, P.R., “Discrimination as a Consequence of Genetic Screening,” American Journal of Human Genetics, 50 (1992): 476–82 (describing anecdotal evidence of discrimination against individuals based on “apparent or perceived” genetic abnormalities); Armour, supra note 2, at 4B (citing statements by that director of National Center for Genome Resources that people have lost jobs because of genetic discrimination).Google Scholar

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See Page, S., “White House: Ban Gene Bias in Workplace,” USA Today, Jan. 20, 1998, at A1.Google Scholar

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See Kopinsky, supra note 13 (citing results of survey by Dorothy Wertz and colleagues at the Shriver Center for Mental Retardation, in Massachusetts).Google Scholar

See id.Google Scholar

Americans with Disabilities Act, 42 U.S.C. §§ 1211112117 (1994).Google Scholar

See id. § 12112(a).Google Scholar

See id. § 12102(2).Google Scholar

See id. § 12112(b)(5).Google Scholar

See id. § 12111(5)(A).Google Scholar

See, for example, Harris v. H & W Contracting Co., 102 F.3d 516 (11th Cir. 1997) (noting that an individual with Graves disease is covered by the Americans with Disabilities Act (ADA)); Gilday v. Mecosta County, No. 96–1571, 1997 U.S. App. LEXIS 33306 (6th Cir. Sept. 2, 1997) (noting that an individual with diabetes is covered by the ADA); and Matczak v. Frankford Candy and Chocolate Co., 136 F.3d 933 (3rd Cir. 1997) (noting that an individual with epilepsy is covered by the ADA).Google Scholar

See Olick, R.S., “Genes in the Workplace: An Ethical and Legal Analysis of Genetic Discrimination Under the Employment Provisions of the Americans with Disabilities Act,” Obermann Summer Seminar, 10 (1997) (unpublished) (on file with author); and Dichter, M.S. Sutor, S.E., “The New Genetic Age: Do Our Genes Make Us Disabled Individuals Under the Americans with Disabilities Act?,” Villanova Law Review, 42 (1997): 613–33.Google Scholar

See Olick, , id. at 10. The U.S. Supreme Court recently held in Bragdon v. Abbott, No. 97–156, 1998 WL 332958, at *5–*11 (U.S. June 25, 1998), that a person with asymptomatic human immunodeficiency virus (HIV) is an “individual with a disability” covered under the ADA. The Court reasoned that asymptomatic HIV is, in fact, a “physical impairment” that substantially limits the major life activity of reproduction. Because the Court found HIV to constitute a physical impairment in that it causes abnormalities in an infected person's hemic and lymphatic systems from the moment of infection, the reasoning of this case does extend to asymptomatic genetic conditions. An individual with a genetic predisposition is a person with a genetic marker for a particular trait, who may or may not develop the trait, disorder, or disease. Compare 1998 WL 332958, at *23 (Rehnquist, C.J., concurring in part and dissenting in part). For further analysis of Bragdon v. Abbott, see Parmet, W.E., “The Supreme Court Confronts HIV: Reflections on Bragdon v. Abbott,” Journal of Law, Medicine & Ethics, 26 (1998): 225–40.Google Scholar

See 2 EEOC Compliance Manual (CCH), § 902 (Mar. 14, 1995).Google Scholar

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Id. §§ 902–46.Google Scholar

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See id. at 630–31; and EEOC Compliance Manual, supra note 29, at §§ 902–45.Google Scholar

The sickle cell trait originates through inheritance of an unstable hemoglobin variant (Hb S). The abnormality occurs almost exclusively in persons of color. About 8 percent of black Americans are heterozygous for Hb S. Although the genetic abnormality may give rise to congenital hemolytic anemia, Hb S carriers generally have minimal clinical problems. See Braunwald, supra note 7, at 1519. See also Jones v. Inter-County Imaging Ctrs., 889 F. Supp. 741, 744 (S.D.N.Y. 1995) (holding that the plaintiff stated a valid claim under the ADA when he alleged that he was terminated by his employer because the employer believed that his sickle cell condition would adversely affect future work attendance).Google Scholar

See, for example, Anderson v. Gus Mayer Boston Store, 924 F. Supp. 763, 769 (E.D. Tex. 1996); 889 F. Supp. at 744; and Sawinski v. Bill Currie Ford, Inc., 866 F. Supp. 1383, 1387 (M.D. Fla. 1994).Google Scholar

See, for example, Dichter, Sutor, supra note 27 (arguing that courts should refrain from interpreting the ADA to provide protection to individuals with genetic disorders that are currently asymptomatic).Google Scholar

See Miller, F.H. Huvos, P.A., “Genetic Blueprints, Employer Cost-Cutting, and the Americans with Disabilities Act,” Administrative Law Review, 46 (1994): At 375–77).Google Scholar

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See Olick, supra note 27, at 14–16; and Rothenberg, supra note 11.Google Scholar

See 42 U.S.C. § 12112(d)(2)(A) (1994).Google Scholar

See id. § 12112(d)(2)(B).Google Scholar

See id. § 12112(d)(3)(A).Google Scholar

Id. § 12112(d)(4)(A).Google Scholar

See id. § 12112(d)(3)(B).Google Scholar

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Civil Rights Act of 1964, 42 U.S.C. § 2000e (1994).Google Scholar

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Tay-Sachs disease is a relatively common inborn error of metabolism with thousands of documented cases. The trait is associated with a deficiency of hexosaminidase A, a protein activator. The features are similar in all carriers, beginning in the third to sixth month of infancy with rapid neurological deterioration. Ashkenazi Jews are about 100 times more likely than other ethnic groups to carry the Tay-Sachs trait. See Braunwald, supra note 7, at 1667–68. See, for example, Smith v. Olin Chemical Corp., 555 F.2d 1283, 1284–85 (5th Cir. 1977) (claiming that the plaintiff's dismissal was due to suspected sickle cell disease; alleging disparate impact race discrimination in violation of Title VII); and Peoples v. City of Salina, No. 88-42800-S, 1990 U.S. Dist. LEXIS 4070, at *1 (D. Kan. Mar. 20, 1990) (claiming dismissal based on employer's fears of sickle cell trait). One commentator has even suggested that discrimination in employment based on late-onset genetic conditions could constitute disparate impact age discrimination, in violation of the Age Discrimination in Employment Act, 29 U.S.C. §§ 621–634. See Rothstein, supra note 1, at 32 n.44.Google Scholar

See Gostin, supra note 11, at 138.Google Scholar

See id.; Rothstein, supra note 1, at 32; and Deyerle, K.A., “Genetic Discrimination in the Workplace: Employer Dream, Employee Nightmare—Legislative Regulation in the United States and the Federal Republic of Germany,” Comparative Labor Law Journal, 18 (1997): At 568 (citing Olin Chemical, 553 F.2d 1283).Google Scholar

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Norman-Bloodsaw v. Lawrence Berkeley Laboratory, 135 F.3d 1260 (9th Cir. 1998).Google Scholar

See id. at 1267–68.Google Scholar

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See id. at 1273–74.Google Scholar

See id. at 1273. Under the ADA, an employer may condition an offer of employment based on the results of a medical examination if (1) the examination is given to all entering employees; (2) the results are kept confidential; and (3) the examination is not used to discriminate against individuals with disabilities, unless the results make the individual unqualified for the job. See 42 U.S.C. § 12112(c)(3) (1994).Google Scholar

Mayfield v. Dalton, 109 F.3d 1423 (9th Cir. 1997).Google Scholar

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For a discussion of the issue of gathering and use of medical information in general, see Turkington, R.C., “Medical Record Confidentiality: Law, Scientific Research, and Data Collection in the Information Age,” Journal of Law, Medicine & Ethics, 25 (1997): At 122–26.CrossRefGoogle Scholar

Arizona, Florida, Illinois, Iowa, Louisiana, New Hampshire, New Jersey, New York, North Carolina, Oregon, Rhode Island, Texas, and Wisconsin. See discussion below for specific statutes.Google Scholar

See Fla. Stat. Ann. § 448.075 (1998).Google Scholar

See N.C. Gen. Stat. § 95–28.1 (1997). The hemoglobin C trait (Hb C) is related to sickle cell disorders. Although the gene frequency for Hb C is only one-fourth that for Hb S, the prevalence of sickle cell-related symptoms and illness is far greater. The tendency of sickle cell red cells to sickle, compared with sickle cell traits, can be explained by two phenomena: Increased intercellular hemoglobin concentration and significantly higher percentage Hb S. See Braunwald, supra note 7, at 1522–23.Google Scholar

See La. Rev. Stat. Ann. § 23:352 (West 1998).CrossRefGoogle Scholar

See N.J. Stat. Ann. §§ 10:5–5(x),: 5–12 (West 1998). The thalassemias are a diverse group of congenital disorders in which there is a defect in the synthesis of one (or more) of the subunits of hemoglobin. As a result of the decreased production of hemoglobin, the red blood cells are microcytic and hypochromic. Thalassemias can lead to a variety of conditions, from subtle abnormalities to life-threatening disease. The two types of thalassemias are classified as α-chain thalassemia and β-chain thalassemia. Normal individuals inherit two α-chain genes from each parent. The great majority of cases of α-chain thalassemia result from deletion or impaired production of α-chain genes. See Braunwald, supra note 7, at 1525–26.Google Scholar

See N.Y. Civ. Rights Law §§ 48, 48–a (Consol. 1998). Normal individuals inherit only a single β-chain gene from each parent. In persons who inherit the genetic β-thalassemia trait, the β-chains have normal structure but are produced at greatly reduces rates. The gene frequency for β thalassemia approaches 0.1 in southern Italy and certain Mediterranean islands. Beta thalassemia is also encountered quite commonly in central Africa, Asia, and the south Pacific. See Braunwald, supra note 7, at 1525–27.Google Scholar

See Ariz. Rev. Stat. Ann. § 41–1463(B) (West 1998); Iowa Code Ann. § 729.6 (West 1997); N.H. Rev. Stat. Ann. § 141–H:3.I(b) (1997); Or. Rev. Stat. § 659.036(1) (1997); R.I. Gen. Laws § 28–6.7–1(a) (1997); Tex. Lab. Code Ann. §§ 21.401(2), .402(a)(1) (West 1998); and Wis. Stat. § 111.372 (1997).Google Scholar

See Iowa Code Ann. § 729.6.2.a; N.H. Stat. Ann. § 141–H:3.I(a); Or. Rev. Stat. § 659.227(1); R.I. Gen. Laws § 28–6.7–1(a)(1); Tex. Lab. Code Ann. § 21.402(a)(2); and Wis. Stat. § 111.372(1)(a).Google Scholar

See Iowa Code Ann. § 729.6.4; N.H. Stat. Ann. § 141–H:3.III; and Wis. Stat. § 111.372(3).Google Scholar

See Iowa Code Ann. § 729.6.2.b; R.I. Gen. Laws § 28–6.7–1(a)(2); and Wis. Stat. § 111.372(1)(b).Google Scholar

See Iowa Code Ann. § 729.6.7; N.H. Stat. Ann. § 141–H:3.IV; and Wis. Stat. § 111.372(4).Google Scholar

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N.J. Stat. Ann. § 10:5–12 (West 1998).CrossRefGoogle Scholar

Id. § 10:5–5(oo).Google Scholar

N.Y. Exec. Law § 296 (Consol. 1998); and N.C. Gen. Stat. § 95–28.1A (1997).Google Scholar

See N.Y. Exec. Law § 292.21–b (‘“Genetic predisposition’ shall mean the presence of a variation in the composition of the genes of an individual or an individual's family member which is scientifically or medically identifiable and which is determined to be associated with an increased statistical risk of being expressed as either a physical or mental disease or disability in the individual or having offspring with a genetically influenced disease, but which has not resulted in any symptoms of such disease or disorder.” (emphasis added)); and N.C. Gen. Stat. § 95–28.1A(b) (similar).Google Scholar

For example, Florida regulates genetic testing and prohibits genetic testing except with the informed consent of the individual to be tested, and provides that the results of such tests may not be disclosed without the consent of the tested individual. See Fla. Stat. Ann. § 760.40(2)(a) (1998). See also 410 Ill. Comp. Stat. § 513/15–30 (West 1998) (Illinois statute regulating confidentiality and disclosure of genetic information); Tex. Lab. Code Ann. § 21.403 (West 1998) (prohibiting disclosure of genetic information unless specifically authorized by the individual); and Wis. Stat. § 942.07 (1997) (prohibiting employers, labor organizations, employment agencies, and licensing agencies from disclosing the results of an individual's genetic test without individual's written informed consent).Google Scholar

See Fla. Stat. Ann. § 760.40(2)(a). See also 410 Ill. Comp. Stat. § 513/15–30.Google Scholar

In addition to the bills discussed below, see also, H.R. 3299, 105th Cong. (1998) (establishing limits on use of genetic information in health insurance coverage and employment, introduced by Representative Linda Smith (R. Wash.)).Google Scholar

See Genetic Justice Act, S. 1045, 105th Cong. (1997); and Genetic Employment Protection Act of 1997, H.R. 2275, 105th Cong. (1997).Google Scholar

See Genetic Nondiscrimination in the Workplace Act, H.R. 2215, 105th Cong. (1997).Google Scholar

See Genetic Confidentiality and Nondiscrimination Act of 1997, S. 422, 105th Cong. (1997); and Genetic Privacy and Nondiscrimination Act of 1997, H.R. 2198, 105th Cong. (1997).Google Scholar

See Report, Joint supra note 3, at 8–9; and Harris, C., “Gore Pushes Bill to Outlaw Genetic Bias,” Federal Times, Mar. 2, 1998, at 4.Google Scholar