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Genetic Discrimination: The Use of Genetically Based Diagnostic and Prognostic Tests by Employers and Insurers

Published online by Cambridge University Press:  24 February 2021

Larry Gostin*
Affiliation:
American Society of Law & Medicine

Abstract

Genetic discrimination is detrimental to public health programs, as well as to society generally. Advances in genetic testing and screening, accelerated and prompted by the Human Genome Initiative, increase society's ability to detect and monitor chromosomal differences. These technologies and their resulting genomic data will enhance medical science, but may also encourage discrimination. Although few employers or insurers currently utilize genetic screening, testing or data, rising employee benefit costs and market forces create powerful incentives for usage.

Current municipal, state and federal laws, including the Americans with Disabilities Act (ADA), may not sufficiently protect employees and insureds from genetic discrimination. While municipal and state protections should not be overlooked, the ADA's sweeping scope may currently provide the most comprehensive safeguard. Federal laws banning discrimination on the basis of race or sex might also successfully redress some forms of genetic discrimination. Genetic technologies’ advent necessitates efforts to rectify state and federal statutory coverage gaps, strictly regulate employers and produce comprehensive guidelines regarding its use.

Type
Articles
Copyright
Copyright © American Society of Law, Medicine and Ethics and Boston University 1991

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Footnotes

*

An earlier version of this paper was written for the National Center for Human Genome Research, Working Group on Ethical, Legal, and Social Issues Related to Mapping and Sequencing the Human Genome. I would like to thank Alissa Spielberg for her research assistance on the project.

References

1 See Liebman, Too Much Information: Predictions of Employee Disease and the Fringe Benefit System, 1988 U. CHI. LEGAL F. 57 (reviewing the development of the anti-discrimination principle).

2 See P. Billings, M. Kohn, M. de Cuevas & J. Beckwith, Genetic Discrimination as a Consequence of Genetic Screening 6 (Oct. 24, 1990) (unpublished manuscript), to be published in AM. J. HUM. GENETICS (1991) [hereinafter Billings] (denning genetic discrimination as “differential treatment based on apparent or perceived human variation presumed to have a genetic origin“).

3 Etiology is the science of the causes or origins of diseases. STEDMAN's MEDICAL DICTIONARY 489 (4th unabridged ed. 1976). Pathophysiology is the branch of biology dealing with the functions and vital processes of disease. Id. at 1041.

4 See generally Antonarakis, , The Mapping and Sequencing of the Human Genome, 83 S. MED. J . 876, 878 (1990)Google Scholar; Goldstein & Brown, Genetic Aspects of Disease, in HARRISON's PRINCIPLES OF INTERNAL MEDICINE 285 (E. Braunwald, K. Isselbacher, R. Peterdorf.J. Wilson, J. Martin & A. Fauci eds. 1987).

5 U.S. DEP't OF HEALTH & HUM. SERVS. (Public Health Service, National Insts. of Health, National Center for Hum. Genome Res.) & U.S. DEP't OF ENERGY (Office of Energy Res., Office of Health & Envtl. Res., Human Genome Program), UNDERSTANDING OUR GENETIC INHERITANCE: THE U.S. HUMAN GENOME PROJECT: THE FIRST FIVE YEARS FY 1991-1995 vii (1990) [hereinafter THE HUMAN GENOME PROJECT].

6 Id.

7 See Hening, Body and Mind: High-Tech Fortunetelling, N.Y. Times, Dec. 24, 1989, § 6 (Magazine), at 20; Liebman, supra note 1, at 60.

8 Liebman, supra note 1, at 60 (“Suddenly the job applicant is not a member of an undifferentiated population … [but has] a statistically analyzable medical future.“). See also J. BISHOP & M. WALDHOLZ, GENOME 285-306 (1990) (describing incidences where genetic screening has been used).

9 E.g., sickle cell disease.

10 E.g., Bloom's Syndrome, Gaucher's disease (adult form), Tay-Sachs disease.

11 E.g., Familial Mediterranean fever.

12 See generally Goldstein & Brown, supra note 4, at 588 (Table 57-1: Examples of simply inherited disorders that occur with increased frequency in specific ethnic groups); see also T. DUSTER, BACKDOOR TO EUGENICS 160-62 (1990) (Appendix C: The Ethnic Distribution of Disease).

13 See Americans with Disabilities Act of 1990 (ADA), Pub. L. No. 101-336, 104 Stat. 376 (codified in scattered sections of 29 U.S.C.A., 47 U.S.C.A. and 42 U.S.C.A. §§ 12101-12213 (West Supp. 1990)).

14 See School Bd. of Nassau County v. Arline, 480 U.S. 273, reh'g denied, 481 U.S. 1024 (1987).

15 See generally Rothstein, , Employee Selection Based on Susceptibility to Occupational Illness, 81 MICH. L. REV. 1379 (1983)Google Scholar.

16 See generally Beckwith, , The Human Genome initiative: Genetics’ Lightning Rod, 17 AM.J.L. & MED. 1 (1991)Google Scholar.

17 See THE HUMAN GENOME PROJECT, supra note 5, at 20-21, 65-73 (Report of the Working Group on Ethical, Legal, and Social Issues Related to Mapping and Sequencing the Human Genome).

18 See id. at 65; 136 CONG. REC. H4996, H5003 (daily ed. July 19, 1990) (statement of Rep. Obey) (the human genome project may divide us into “two groups, those with pluperfect and imperfect genes… . Taxpayers should not be put in the position of financing government programs without protections to ensure that those programs will not in the end lead to fencing them out of jobs or reasonably priced health insurance.” We need to develop legal and ethical safeguards “before the knowledge genie is completely out of the bottle.“).

136 See 136 CONG. REC. H5003 (daily ed. July 19, 1990).

20 THE HUMAN GENOME PROJECT, supra note 5, at vii, 20.

21 See Watson, , The Human Genome Project: Past, Present, and Future, 248 SCIENCE 44 (1990)Google Scholar.

22 See generally McKusick, , Mendelian Disorders, in THE PRINCIPLES AND PRACTICE OF MEDICINE 281, 281-89 (A. Harvey, R.Johns, V. McKusick, A. Owens & R. Ross eds. 1988)Google Scholar [hereinafter THE PRINCIPLES AND PRACTICE OF MEDICINE].

2S Wilfond, & Fost, , The Cystic Fibrosis Gene: Medical and Social Implications for Heterozygote Detection, 263 J. A.M.A. 2777, 2779 (1990)Google Scholar. A genetic condition such as Cystic Fibrosis (CF) is caused by mutations in the DNA which produce the disease. Tests for CF seek to identify the known mutations. J. BISHOP & M. WALDHOLZ, supra note 8, at 289-290. Screening for CF is now very much on the public agenda, despite cautionary statements by the Public Health Service and professional organizations. The American Society of Human Genetics Statement on Cystic Fibrosis Screening, 46 AM. J. HUM. GENETICS 393 (1990); Statement from the National Insitutes of Health Workshop on Population Screening for the Cystic Fibrosis Gene, 323 NEW ENG. J. MED. 70 (1990) [hereinafter NIH Consensus Statement].

24 Wilfond & Fost, supra note 23, at 2779.

25 Id. at 2781. Professor Billings and his colleagues recount a case of a family with a child who has CF and received care through an HMO. When a second pregnancy occurred, a prenatal DNA test was positive for two copies of the CF gene. The HMO considered withdrawal of coverage if the family proceeded with the pregnancy. Threats of legal action were required before the HMO agreed to continue coverage. Billings, supra note 2, at 18.

26 De Long & Moses, Disorders of Movement, in THE PRINCIPLES AND PRACTICE OF MEDICINE, supra note 22, at 1057, 1069.

27 McKusick, supra note 22, at 286-87.

28 See generally McKusick, Multifactorial Disorders: The Genetics of Common Diseases, in THE PRINCIPLES AND PRACTICES OF MEDICINE, supra note 22, at 303.

29 See, e.g.. OFFICE OF TECH. ASSESSMENT, U.S. CONG., GENETIC MONITORING AND SCREENING IN THE WORKPLACE 171-88 (1990) [hereinafter OTA 1990 REPORT]; OFFICE OF TECH. ASSESSMENT, U.S. CONG., THE ROLE OF GENETIC TESTING IN THE PREVENTION OF OCCUPATIONAL DISEASE 33-46 (1983) [hereinafter OTA 1983 REPORT]. Genetic testing includes a number of technologies to detect genetic traits, changes in chromosomes, or changes in DNA. The OTA distinguishes between two different kinds of genetic testing: examining persons for evidence of induced change in their genetic material (monitoring) and identifying individuals with particular inherited traits or disorders (screening). OTA 1990 REPORT, supra, at 3-6. The OTA terminology is somewhat confusing from a public health perspective since testing usually refers to case identification of an individual, while screening involves more systematic application to whole populations. See Gostin, , Curran, & Clark, , The Case Against Compulsory Casefinding in Controlling AIDS: Testing, Screening and Reporting, 12 AM. J.L. & MED. 7, 1011 (1987)Google Scholar.

30 OTA 1990 REPORT, supra note 29, at 175-76.

31 Id. at 176, 178. But note that “[t]he increase in the number of'current users’ in 1989 could reflect slight differences in question wording between the two surveys.” Id. at 176.

32 OTA 1983 REPORT, supra note 29, at 34.

33 OTA 1990 REPORT, supra note 29, at 178, 183.

34 Brownlee & Silberner, The Assurances of Genes, U.S. NEWS Be WORLD REP., July 23, 1990, at 57.

35 R. POKORSKI, THE POTENTIAL ROLE OF GENETIC TESTING IN RISK CLASSIFICATION (American Council of Life Ins. 1990). See Sit, Will Genetic Mapping Threaten Workers’ Privacy?, Boston Globe, Aug. 21, 1990, at 23, col. 1.

36 J. Payne, Working Group on Genetic Testing (Health Insurance Ass'n of Am. 1990).

37 OTA 1983 REPORT, supra note 29, at 36. The OTA found, however, that none of the genetic tests evaluated at that time met established scientific criteria for routine use in an occupational setting. OTA 1990 REPORT, supra note .29, at 8. The chasm in perception between the OTA and industry appears to be the employer's willingness to assume that if tests are sufficiently reliable for clinical use, they can safely be used in occupational settings. See Prediction and Prejudice: Forging a New Underclass, 55 CONSUMER REP. 483 (1990).

38 A comprehensive OTA report on testing in health insurance documents the substantial rise in testing, including prospects for genetic testing. OFFICE OF TECH. ASSESSMENT, U.S CONG., MEDICAL TESTING AND HEALTH INSURANCE (1988) [hereinafter MEDICAL TESTING AND HEALTH INSURANCE].

39 The commercial appeal of genetic testing is revealed in a staff background paper to the OTA 1990 Report, supra note 29. M. Hewitt & N. Holtzman, The Commercial Development of Tests for Human Genetic Disorders (Feb. 1988) (unpublished manuscript). This paper reviews predictions of the market value of genetic tests from the following sources: ROBERT S. FIRST, INC., GENETIC TESTING IN THE USA 1986-1990 (1986) ($550 million by 1990); Arthur D. Little Projects a $5.7 Billion Clinical Diagnostic Market in 1990, GENETIC ENGINEERING NEWS, Mar. 1987, at 13 ($300 - $500 million by 1995); Disease Disposition Screening, BIOMEDICAL BUS. INT'L 230, 230-32 (1986) (U.S. current market value of genetic tests estimated at $210 million); DNA Probes Nudge Monoclonals in the Race to Exploit the Medical Diagnostics Market, GENETIC ENGINEERING NEWS, Sept. 1986, at 1, 12, 13, 21 ($500 million market value by 1993); Market for DNA Probe Tests for Genetic Diseases, GENETIC TECH. NEWS, Nov. 1986, at 6-7 ($950 - $1000 million market value by 1992). More recently, Business Week predicted a $200 million-a-year market for genetic tests being actively sought after by prominent bio-technology companies. Carey, The Genetic Age, Bus. WEEK, May 28, 1990, at 68.

40 Billings, supra note 2, at 8.

41 See, e.g., MacDonald, Ethical Eye on Insurers’ Genetic Tests, Daily Telegraph, July 15,1990, at 9 (describing an engineer who “was refused health or life insurance because he had haemochromatosis — excessive absorption and storage of iron — despite having been treated and declared fit by his doctor“).

42 OTA 1983 REPORT, supra note 29, at 37.

43 OTA 1990 REPORT, supra note 29, at 182.

44 See Shapiro, Dangers of DNA: It Ain't Just Fingerprints, N.Y.LJ.,Jan. 23, 1990, at 1 (quoting Dr. Phillip Bereano) (” ‘The Armed Forces for many years have followed a policy of excluding the carriers of sickle cell disease, despite the fact that these individuals are not themselves impaired… . ‘ “); see also Matthewman, , Title VII and Genetic Testing: Can Your Genes Screen You Out of a Job﹜, 27 How. L.J. 1185, 1199 (1984)Google Scholar; Raymann, , Sickle Cell Trait and the Aviator, 50 AVIATION SPACE & ENVTL. MED. 1170 (1979)Google Scholar.

45 See, e.g., Billings, supra note 2, at 11 (man found to be an unaffected carrier of Gaucher Disease was denied a government job because he was told he was a “ ‘carrier, like [of] sickle cell.’ “).

46 See T. DUSTER, supra note 12, at 41-42 (“trait” is a term normally applied to carriers of autosomal dominant disorders; “the best known of these … are Tay-Sachs disease, betathalassemia, sickle cell anemia, and cystic fibrosis“).

47 See Shaw, Genetic Gains Raise Fear of a New Kind of Bias, Philadelphia Inquirer, Nov. 23, 1990, at 1-A, col. 1 (describing the case of a Chicago woman, turned down for a j ob after her prospective employer learned that her mother was schizophrenic; employer feared schizophrenia was inherited).

48 Billings, supra note 2, at 13-14; Brownlee & Silberner, supra note 34, at 57.

49 See, e.g., Billings, supra note 2, at 20-21 (reporting the case of a person with hereditary hemochromatosis who, despite the absence of symptoms, was consistently denied insurance); see also Brownlee & Silbemer, supra note 34, at 57 (quoting Dr. Neil Holtzman).

50 Griffin & Cornblath, Peripheral Neuropathies, in THE PRINCIPLES AND PRACTICE OF MEDICINE, supra note 22, at 1092, 1095-96 (weakness, particularly footdrop, foot deformity and hand weakness are the most severe manifestations of Charcot-Marie-Tooth disease (CMT)).

51 Billings, supra note 2, at 10-11.

52 Id. at 10.

53 See MacDonald, supra note 41, at 9. Hemochromatosis is characterized by an excessive absorption and storage of iron and can be controlled. See THE PRINCIPLES AND PRACTICE OF MEDICINE, supra note 22, at 289, 862-63.

54 See Billings, supra note 2, at 18; see also supra note 25 for a description of this incident.

55 See infra notes 171-96 and accompanying text.

56 Federal legislation provides protection to persons with disabilities in several areas. E.g., Education for All Handicapped Children Act of 1975 (EAHCA), Pub. L. No. 94-142, 89 Stat. 773 (codified as amended in scattered sections of 20 U.S.C.) (giving all school-aged children with disabilities the right to a free public education in the least restrictive environment appropriate to their needs) (note that in order to reflect progressive language Congress renamed EAHCA the Individuals with Disabilities Education Act, Act of Oct. 30, 1990, Pub. L. No. 101-476, 104 Stat. 1142); Fair Housing Amendments Act of 1988, Pub. L. No. 100-430, 102 Stat. 1619 (codified, among other places, at 42 U.S.C. §§ 3601-3614a (Supp. 1990)).

57 Civil Rights Act of 1964, Pub. L. No. 88-352, 78 Stat. 241 (codified at 42 U.S.C. § 1981 (1988)).

58 The Rehabilitation Act of 1973, Pub. L. No. 93-112, 87 Stat. 355 (codified as amended at 29 U.S.C. §§ 701-794 (1988)), survives the subsequent enactment of the ADA, and continues to be the prime legislation affecting persons with-disabilities working for the federal government. See 42 U.S.C.A. § 12209(a), (b) (West Supp. 1990) (Coverage of Congress and the agencies of the Legislative Branch).

59 NATIONAL GAY RIGHTS ADVOCATES, PROTECTION AGAINST DISCRIMINATION UNDER STATE HANDICAP LAWS: A FIFTY STATE ANALYSIS (1989). See B. BRIDGHAM & M. ROWE, AIDS AND DISCRIMINATION - A REVIEW OF STATE LAWS THAT AFFECT HIV INFECTIONS 1983-1988 (1989).

60 See, e.g., Raytheon Co. v. Fair Employment & Hous. Comm'n, 212 Cal. App. 3d 1242, 261 Cal Rptr. 197 (1989).

61 The ADA also encourages “the use of alternative means of dispute resolution, including settlement negotiations, conciliation, facilitation, mediation, factfinding, minitrials, and arbitration.” 42 U.S.C.A. § 12212 (West Supp. 1990).

62 R. STEELE, S. KARSTEN, B. LORENZ & J. RITTER, IDENTIFICATION AND ASSESSMENT OF STATE AND LOCAL STRATEGIES TO PREVENT DISCRIMINATION (1989).

63 E.g., CAL. HEALTH & SAFETY CODE § 150(f) (West 1990) (“[c]arriers of most deleterious genes should not be stigmatized and should not be discriminated against by any person“).

64 E.g., 1990 N.Y. LAWS 900 (persons with sickle cell trait and carriers of Tay-Sachs disease or Cooley's anemia may not be denied opportunities for employment unless their disorder would prevent them from performing the job).

65 Compare this restraint with the flood of HIV-specific anti-discrimination state legislation. See Gostin, , The AIDS Litigation Project: A National Review of Court and Human Rights Commission Decisions, Part II: Discrimination, 263 J. A.M.A. 2086 (1990)Google Scholar; GOSTIN, , Public Health Strategies for Confronting AIDS: Legislative and Regulatory Policy in the United States, 261 J. A.M.A. 1621 (1989)Google Scholar [hereinafter Public Health Strategies for Confronting AIDS].

66 Letter from Rep. Steny Hoyer to Alexander Capron, Chairman of the Biomedical Ethics Advisory Committee 2 (Aug. 1, 1990) (on file with American Journal of Law & Medicine).

68 136 CONC. REC. H4614, 4623 (daily ed. July 12, 1990) (statement of Rep. Hawkins).

69 Id. at H4624 (statement of Rep. Don Edwards); id. at 4626 (statement of Rep. Henry Waxman).

70 42 U.S.C.A. § 12102(2) (West Supp. 1990). “The term physical or mental impairment does not include simple physical characteristics, such as blue eyes or black hair.… [nor does it include] environmental, cultural, and economic disadvantages” in and of themselves. S. REP. No. 116, 101st Cong., 1st Sess. 22 (1989). The question may arise as to why genetic traits for sickle cell or cystic fibrosis ought to be covered in the ADA, but not the genetic determinants for blue eyes or black hair. The reason is simply that Congress has designated disability, but not general personal characteristics, under civil rights. Id.

71 42 U.S.C.A. § 12102(2) (West Supp. 1990). The definition of disability in the ADA is comparable to the term “handicap” in older legislation. Rehabilitation Act of 1973, 29 U.S.C. § 706(7)(B) (1988); Fair Housing Amendments Act of 1988, 45 U.S.C. § 3602(h) (Supp. 1990). Congress intended that regulations implementing the Rehabilitation Act and the Fair Housing Amendments Act apply to the term “disability” in the ADA. The use of the term “disability” instead of “handicap” represents currently acceptable terminology. See S. REP. No. 116, supra note 70, at 21.

72 See Southeastern Community College v. Davis, 442 U.S. 397, 406 (1979) (“[a]n otherwise qualified individual is one who is able to meet all of a program's requirements in spite of his handicap“).

73 S. REP. No. 116, supra note 70, at 23.

74 Id.

75 Id. See School Bd. of Nassau County, Fla. v. Arline, 480 U.S. 273, 284 (1987).

76 See Bowen v. American Hosp. Ass'n, 476 U.S. 610, 648 (1986) (White, J., dissenting) (clearly characterizing Down syndrome as a protected handicap). The Senate Committee on Labor and Human Resources drew attention to a “New Jersey zoo keeper who refused to admit children with Downs Syndrome because he feared they would upset the chimpanzees.” S. REP. No. 116, supra note 70, at 7.

77 S. REP. No. 116, supra note 70, at 22.

78 Id. (“a person with lung disease will have a substantial limitation in the major life activity of breathing“). See Gerben v. Holsclaw, 692 F. Supp. 557, 563 (E.D. Pa. 1988) (cystic fibrosis is “clearly” a handicap under the Rehabilitation Act of 1973); Department of Educ. v. Katherine D., 531 F. Supp. 517, 519 (D. Haw. 1982) (cystic fibrosis is a handicap under the Education for All Handicapped Children Act of 1975).

79 S. REP. No. 116, supra note 70, at 7, 22, 24. The Arline court quoted Senator Mondale's discussion of a woman “crippled by arthritis,” who was denied a job simply because college trustees thought “ ‘normal students shouldn't see her,’ “ not because she could not do the work. Arline, 480 U.S. at 283 (citing 118 CONG. REC. 36761 (1972)). See Doe v. Region 13 Mental Health-Mental Retardation Comm'n, 704 F.2d 1402 (5th Cir. 1983) (mental illness qualifies as a handicap under the Rehabilitation Act of 1973).

80 E.g., Arline, 480 U.S. at 273. Persons with minor or trivial impairments, such as a simple infected finger, are not disabled within the meaning of the Act. H.R. REP. No. 485, 101st Cong., 2d Sess. pt. 2, at 152, reprinted in 1990 U.S. CODE CONG. & ADMIN. NEWS 426, 435. However, if a defendant discriminates because she regards or perceives the genetic condition as more serious than it actually is, the person is protected under the third prong of the definition. See supra text accompanying note 71.

81 Cf. S. REP. No. 116, supra note 70, at 24 (citing the example of a severe burn victim as a disabled person under the ADA). Technically, the effects of one's disfigurement on others could be classified under the third prong of the definition. See id.

82 Arline, 480 U.S. at 282. While the Arline court was concentrating on infectious disease, its conclusion is equally applicable to genetic discrimination: “It would be unfair to allow an employer to seize upon the distinction between the effects of the disease on others and the effects of a disease on a patient, and use that distinction to justify discriminatory treatment.“ Id. at 282.

83 See Human Genetics Committee of the Council for Responsible Genetics, Position Paper on Genetic Discrimination, GENEWATCH, May 1990, at 3. See also supra notes 47-49 and accompanying text.

84 42 U.S.C.A. § 12102(2)(c) (West Supp. 1990).

85 See supra note 75 and accompanying text.

86 136 CONG. REC. H4614, 4623 (daily ed. July 12, 1990).

87 Id. at 4626 (statement of Rep. Waxman). See also id. at 4624 (statement of Rep. Edwards).

88 See Neeld v. American Hockey League, 439 F. Supp. 459 (W.D.N.Y. 1977) (concern for future harm to player with one eye); Kimmel v. Crowley Maritime Corp., 23 Wash. App. 78, 596 P.2d 1069 (1979) (knee injuries suggested future harm); Dairy Equip. Co. v. Department of Indus., 95 Wis. 2d 319, 290 N.W.2d 330 (1980) (employer feared an exacerbated Future injury from a fall because employee had only one kidney). But see Burgess v. Joseph Schlitz Brewery Co., 298 N.C. 520, 259 S.E.2d 248 (1979) (disability refers to present, non-correctable loss of vision, not potentially disabling conditions, so that correctable glaucoma was not a handicap under the state statute).

89 Dairy Equip. Co., 95 Wis. 2d at 331, 290 N.W.2d at 335 (employee who had only one kidney was “handicapped” within the meaning of the state Fair Employment Act).

90 State Div. of Hum. Rts. v. Xerox Corp., 65 N.Y.2d 213, 219, 480 N.E.2d 695, 698, 491 N.Y.S.2d 106, 109 (1985).

91 See Kimmel, 23 Wash. App. at 78, 596 P.2d at 1069 (knee injury that might pose future safety risk at sea).

92 Opinion of Charles J. Cooper, Assistant Attorney General, Office of Legal Counsel, for Ronald E. Robertson, General Counsel, Department of Health and Human Services, June 23, 1986.

93 The Justice Department reversed its opinion in 1988. Memorandum for Arthur Calvahouse, Jr., Counsel to the President, from Douglas W. Kamiec, Acting Assistant Attorney General, Office of Legal Counsel, re Application of Section 504 of the Rehabilitation Act to HIV-infected Individuals, Sept. 27, 1988.

94 See, e.g.. Civil Rights Restoration Act of 1987, Pub. L. No. 100-259, 102 Stat. 28 (codified at 29 U.S.C.A. § 706(8)(C) (West Supp. 1990)).

95 See, e.g.. Doe v. Centinela Hosp., 57 U.S.L.W. 2034 (CD. Cal. 1988) (asymptomatic carrier of AIDS virus protected under Rehabilitation Act).

96 See Genetic Testing 99 See School Bd. of Nassau County, Fla. v. Arline, 480 U.S. 273, 284 (1987) (“society's accumulated myths and fears about disability and disease are as handicapping as are the physical limitations that flow from actual impairment“).

100 See Burns, , Rationality Review and the Politics of Public Health, 34 VILL. L. REV. 933, 978-81 (1989)Google Scholar; Gostin, , The Future of Public Health Law, 12 AM. J.L. & MED. 461, 467 (1987)Google Scholar.

101 See supra text accompanying note 75 (discussing individuals “regarded” as disabled).

102 Vickers v. Veterans Admin., 549 F. Supp. 85 (W.D. Wash. 1982).

103 Id. at 87.

104 Dodd, Who Decides Health Risk is Too High?, USA Today, Oct. 5, 1990, at Cl, col. 1.

105 See Neeld v. American Hockey League, 439 F. Supp. 459 (W.D.N.Y. 1977) (denial of plaintiff with sight in only one eye an opportunity to play professional hockey would result in irreparable harm).

106 See, e.g.. Peoples v. City of Salina, Kan., No. 88-4280-S, 1990 U.S. Dist. LEXIS 4070 (D. Kan. March 20, 1990). Employers, however, can take action if the person's condition renders him unqualified for the job or would pose a direct threat to others in the workplace. 42 U.S.C.A. § 12111(3) (West Supp. 1990).

107 Letter from Nachama L. Wilker & Ruth Hubbard, Council for Responsible Genetics, to Rep. Steny Hoyer (June 27, 1990) (on file with American Journal of Law & Medicine).

108 42 U.S.C.A. §§ 12112(a), 12132 (West Supp. 1990).

109 Title I requires qualification standards, employment tests, or other selection criteria to be “job-related” and “consistent with business necessity.” Id. at § 12112(b)(b). Title II requires the disabled person to meet the “essential eligibility requirements for the receipt of services or the participation in programs or activities.” Id. at § 12131(2).

110 Id. at § 12113(b). “Direct threat” means “a significant risk to the health or safety of others that cannot be eliminated by reasonable accommodation.” Id. at § 12111(3).

111 Id. at § 12112(b)(5).

112 Id. at § 12131(2).

113 Id. at § 12112(b)(5)(A). See Southeastern Community College v. Davis, 442 U.S. 397, 410, 412 (1979) (this exception requires “fundamental alteration in the nature of the program” or “undue financial and administrative burdens“). “Undue hardship” is carefully defined as “requiring significant difficulty or expense” when considered in light of many enumerated factors. 42 U.S.C.A. § 12111(10)(A).

114 136 CONG. REC. H4614, 4626 (daily ed.July 12, 1990) (statement of Rep. Waxman). See also id. at 4614 (statement of Rep. Hawkins).

115 See, e.g., Joint Explanatory Statement of the Committee of Conference para. 2 (“direct threat“) and para. 13 (“health and safety“); S. REP. No. 116, supra note 70, at 27.

116 H.R. REP. No. 596, supra note 80, at pt. 3, 11, reprinted in 1989 U.S. CODE CONG. & ADMIN. NEWS at 566. In the House, the standard of “direct threat” was extended by the Judiciary Committee to all individuals with disabilities, and not simply those with contagious diseases or infections. H.R. REP. No. 485, supra note 80, pt. 3, at 34, reprinted in 1990 U.S. CODE CONG. & ADMIN. NEWS at 457.

117 Joint Explanatory Statement of the Committee of Conference, para. 10 (“pre-employment inquiries“).

118 42 U.S.C.A. §§ 12112(c)(3), 12113(b) (West Supp. 1990).

119 Id. at § 12113(b) (“Qualification standards“).

120 See School Bd. of Nassau County, Fla. v. Arline, 480 U.S. 273, 285 (1987).

121 See Joint Explanatory Statement of the Committee of Conference, para. 10.

122 42 U.S.C.A. §§ 12111(3), 12113(b).

122 See, e.g., H.R. REP. No. 485, supra note 80, at pt. 2, 56-57, reprinted in 1990 U.S. CODE CONG. & ADMIN. NEWS, at 339.

124 The legislative record is replete with statements rejecting decision-making based upon ignorance, misconceptions and patronizing attitudes. See, e.g., id., pt. 2, at 7, 121; id., pt. 3, at 52, 153; id., pt. 4, at 38; S. REP. No. 116, supra note 70, at 27.

125 Hall v. United States Postal Serv., 857 F.2d 1073, 1079 (6th Cir. 1988) (quoting School Bd. of Nassau County, Fla. v. Arline, 772 F.2d 759, 764-65 (11th Cir. 1985)). See also Mantolete v. Bolger, 767 F.2d 1416 (9th Cir. 1985); Strathe v. Department of Transp., 716 F.2d 227 (3d Cir. 1983).

126 See Peoples v. City of Salina, Kan., No. 88-4280-S, 1990 U.S. Dist. LEXIS 4070 (D. Kan. Mar. 20, 1990).

127 See supra notes 104-05 and accompanying text.

128 See Jackson v. Johns-Manville Sales Corp., 781 F.2d 394 (5th Cir. 1986) (whether an individual exposed to asbestos but not currently symptomatic can recover today for the likelihood of future cancer).

129 See supra text accompanying notes 101-06.

130 Fetal protection policies involve excluding women from the workplace because of potential harms to the fetus. This sets up an express class based upon gender. See, e.g., International Union, UAW v. Johnson Controls, Inc., 886 F.2d 871 (7th Cir. 1989), rev'd, 1991 US LEXIS 1715.

131 42 U.S.C.A. §§ 12111(3), (9), 12112(b)(5) (West Supp. 1990).

132 Id. at § 12111(9)(A).

133 Vickers v. Veterans Admin., 549 F. Supp. 85 (W.D. Wash. 1982).

134 442 U.S.C.A. § 12111(10) (West Supp. 1990).

135 Id. at § 12111(10)(B). Congress explicitly rejected the implication of the Supreme Court in TWA v. Hardison, 432 U.S. 63 (1977), that an employer need not expend more than a de minimis amount for the accommodations. S. REP. No. 116, supra note 70, at 36.

136 S. REP. No. 116, supra note 70, at 35.

137 See, e.g., International Union, UAW v. Johnson Controls, 886 F.2d 871 (7th Cir. 1989), rev'd, 1991 US LEXIS 1715; see abo supra notes 128-29 and accompanying text.

138 42 U.S.C.A. § 12112(b)(7), (8) (West Supp. 1990).

139 See Rothstein, supra note 15, at 1409-21.

140 See S. REP. No. 116, supra note 70, at 39.

141 42 U.S.C.A. § 12112(c)(2)(A) (West Supp. 1990). For the purposes of the ADA, drug testing is not considered a medical examination, and employers are not prohibited from taking action against a person who is currently engaging in the illegal use of drugs. Id. at § 12114(d)(1).

142 Id. at § 12112(c)(1)(4)(A).

143 Id. at § 12112(c)(3)(A)-(C).

144 Id. at § 12112(c)(4)(A).

145 S. REP. No. 116, supra note 70, at 39.

146 The Employee Retirement Income Security Act of 1974 (ERISA) may provide an additional source of law to remedy discrimination based purely on cost factors. 29 U.S.C. §§ 1001-1461 (1988). Section 510 of ERISA makes it unlawful for an employer to “discriminate against a participant or beneficiary for exercising any right to which he is entitled under the provisions of any employer benefit plan… or any right to which such participant may become entitled under [such benefit] … plan.” Id. at § 1140.

ERISA allows a participant or beneficiary to bring a civil action in order to recover benefits due him or clarify or enforce his rights under the plan. Id. at § 1132(a)(1)(B). The term participant refers to an “employee or former employee of an employer, or any member or former member of an employee organization, who is or may become eligible to receive benefits.” Id. at § 1002(7). A beneficiary is “a person designated by a participant, or by the terms of an employee benefit plan.” Id. at § 1002(8). Apparently, one can only become a participant and thus eligible (through the automatic operation of a benefit plan or through self-selection) to designate beneficiaries, once one is hired. Indeed, courts have thus far restricted entitlement under ERISA to current or discharged employees. See Liebman, supra note 1, at 87-88. Thus, ERISA may provide a remedy for persons with genetic conditions or pre-dispositions once they are hired.

While ERISA does not require employers to provide benefit plans at all, it does prohibit employers from discriminating against employees because they may disproportionately burden a benefit plan now or in the future. See Folz v. Marriot Corp., 594 F. Supp. 1007, 1014-15 (W.D. Mo. 1984) (discharge of an employee after revelation to employer that the employee suffered from multiple sclerosis and where no complaints of employee's job performance existed, violated ERISA); see also Vogel, , Containing Medical and Disability Costs by Cutting Unhealthy Employees: Does Section 510 of ERISA Provide a Remedy﹜, 62 NOTRE DAME L. REV. 1024, 1028-29, 1029 n.29 (1987)Google Scholar.

147 OTA 1990 REPORT, supra note 29, at 181-82.

148 See generally Liebman, supra note 1, at 84-85; Vogel, supra note 146, at 1024 & n.l, 1029-39 (1987).

149 See Vogel, supra note 146, at 1028-29.

150 Liebman, supra note 1, at 82.

151 See generally S. REP. No. 116, supra note 70.

152 136 CONG. REC. H4614, 4627 (daily ed. July 13, 1990) (statement of Rep. Waxman).

153 See State Div. of Hum. Rts. v. Xerox Corp., 65 N.Y.2d 213, 219, 480 N.E.2d 695, 697-98, 491 N.Y.S.2d 106, 108, (1985); Shawn v. Legs Co. Partnership, Sup. Ct. N.Y. Cty., AIDS Lit. Rptr., March 10, 1989.

154 Mosby v. Joe's Westlake Restaurant, No. 86-5045 (Cal. Super. Ct., San Francisco County).

155 Cronan v. New Eng. Tel., 41 Fair Empl. Prac. Cas. (BNA) 1273 (Mass. 1986).

156 Shannon v. Charter Red Hosp., Admin. Complaint, Dallas, Tex., April 28, 1986.

157 Shawn, Sup. Ct. NY, AIDS Lit. Rptr., March 10, 1989.

158 Representative Owens stated: “Allowing the fact of such increased costs to justify employment discrimination would effectively gut the protections of the ADA for individuals with disabilities.” 136 CONG. REC. H4614, 4623 (daily ed. July 13, 1990).

159 ERISA pre-empts state laws that “relate to any employee benefit plans,” except state laws regulating insurance. 29 U.S.C § 1144(a), (b)(2) (1988). Employers who self-insure can avoid these state laws. See Vogel, supra note 146, at 1028 & n.24.

160 H.R. REP. No. 485, supra note 80, pt. 2, at 136-38, reprinted in 1990 U.S. CODE CONG. & ADMIN. NEWS, at 419-21.

161 42 U.S.C. § 12201(c) (West Supp. 1990).

162 The Employment Retirement Income Security Act (ERISA) regulates employee benefits (including self-insured plans), effectively preempting the states, and specifically leaves insurance regulation to the states. Metropolitan Life Ins. v. Massachusetts, 471 U.S. 724 (1985). ERISA's exemption of self-insured plans from state insurance regulation is not affected by the ADA. 42 U.S.C. § 12201(c). See, e.g., H.R. REP. No. 485, supra note 80, pt. 3, at 137, reprinted in 1990 U.S. CODE CONG. & ADMIN. NEWS, at 420 (“Concerns had been raised that [portions of the ADA] could be interpreted as affection [sic] the preemption provision of ERISA. No such implication is intended.“). The problem with ERISA's preemption provision is that self-insured plans cannot be required by states to provide certain benefits or to contribute to risk pools. Since an estimated 60% of all covered workers are under self-insured plans, a significant limitation is placed on the states that seek to rectify inequitable coverage. MEDICAL TESTING AND HEALTH INSURANCE, supra note 38, at 114.

163 See, e.g., S. REP. No. 116, supra note 70, at 29 (“The ADA does not, however, affect pre-existing condition clauses included in insurance policies offered by employers … . so long as such clauses are not used as subterfuge to evade the purposes of this legislation.“). Nor can employee benefit plans be found to violate the ADA under impact of every person with a disability, for example, additional sick leave or medical coverage. “In sum, [ § 12201(c)] is intended to afford to insurers and employers the same opportunities they would enjoy in the absence of this legislation to design and administer insurance products and benefit plans in a manner that is consistent with basic principles of insurance risk classification.” H.R. REP. No. 485, supra note 80, pt. 2, at 137, reprinted in 1990 U.S. CODE CONG. & ADMIN. NEWS, at 420-21. See Alexander v. Choate, 469 U.S. 287 (1985).

164 See generally MEDICAL TESTING AND HEALTH INSURANCE, supra note 38.

165 42 U.S.C.A. § 12201(c) (West Supp. 1990).

166 Congress rejected the Supreme Court's restrictive reading of the term “subterfuge” in Public Employment Retirement Sys. of Ohio v. Betts, 492 U.S. 158 (1989). The Court in Belts held that subterfuge required some malicious or purposeful intent to evade. See 136 CONG. REC. H4614, 4623 (daily ed. July 13, 1990) (statement of Rep. Hawkins); id. at 4627 (statement of Rep. Waxman).

167 See H.R. REP. No. 485, supra note 80, pt. 2, at 82-83, reprinted in 1990 U.S. CODE CONG. & ADMIN. NEWS, at 364-66; id., pt. 3, at 35-36, reprinted in 1990 U.S. CODE CONG. & ADMIN. NEWS, at 457-59.

168 42 U.S.C.A § 12201(c)(2) (West Supp. 1990).

169 Adverse selection refers to “[t]he tendency of persons with poorer than average health expectations to apply for or continue insurance to a greater extent than persons with average or better health expectations.” MEDICAL TESTING AND HEALTH INSURANCE, supra note 38, at vi.

170 See supra notes 9-12 and accompanying text; see also T. DUSTER supra note 12, at 160- 62.

171 42 U.S.C. §§ 2000e - 2000e-15 (1988).

172 See Smith v. Olin Chem. Corp., 555 F.2d 1283 (5th Cir. 1977).

173 Arizona Governing Coram, v. Norris, 463 U.S. 1073, 1108 (1983) (O'Connor, J., concurring).

174 42 U.S.C. § 2000e (1988).

175 Hayes v. Shelby Memorial Hosp., 726 F.2d 1543 (11th Cir. 1984); Wright v. Olin Corp., 697 F.2d 1172 (4th Cir. 1982). In 1989 the Supreme Court held that the plaintiffhas the ultimate burden of proof, and that the employer need not demonstrate that the challenged practice is “essential” or “indispensable” to show business necessity. Wards Packing Co. v. Antonio, 490 U.S. 642 (1989). Congress has been trying, so far unsuccessfully, to repudiate the holding in Wards Cove.

176 Sickle cell lawsuits have been brought under many other theories which are not germane to employment discrimination. See Williams v. Treen, 671 F.2d 892 (5th Cir. 1982) (state prison officials’ denial of treatment to persons with sickle cell anemia raises a constitutional issue); Taylor v. Flint Osteopathic Hosp., 561 F. Supp. 1152 (E.D. Mich. 1983) (finding against plaintiff who argued that black patients were discriminated against by being denied reimbursement for “unnecessary” medical treatments especially helpful for typically black problems); Ross v. Bounds, 373 F. Supp. 450 (E.D.N.C. 1974) (black inmates seeking injunctive relief if they had sickle cell anemia or trait did not state a cognizable claim under the Civil Rights Act).

177 See EEOC v. Greyhound Lines, 635 F.2d 188 (3d Cir. 1980) (African American employee sued under Title VII alleging that no-beard policy adversely impacted black workers because of a skin condition particular to African Americans).

Sickle cell anemia … is a devastating hereditary blood disorder, found almost exclusively in black populations, that can be traced to a defect in a single gene. Homozygotes, who inherit two copies of the mutant gene from their parents, suffer from painful, often life-threatening symptoms of sickle cell anemia. Heterozygotes, who inherit one mutant and one normal gene, are considered to have sickle cell trait … . [and] they show no clinical symptoms of sickle cell anemia.

D. SUZUKI & P. KNUDTSON, GENETHICS: THE CLASH BETWEEN THE NEW GENETICS AND HUMAN VALUES 144 (1989).

179 See Narragansett Elec. Co. v. Rhode Island Comm'n for Hum. Rts., 118 R.I. 457, 374 A.2d 1022 (1977) (a sickle cell screen would clearly be discriminatory since no racial explanation was possible). Cf. General Electric Co. v. Gilbert, 429 U.S. 125, 153 n.5 (1977) (Brennan, J., dissenting) (under the majority opinion the employer could exclude sickle cell-related disabilities from its disability benefits plan and not violate Title VII).

180 Smith v. Olin Chem. Corp., 555 F.2d 1283 (5th Cir. 1977). See Peoples v. City of Salina, Kan., No. 88-4280-S, 1990 U.S. Dist. LEXIS 4070 (D. Kan. March 20, 1990) (rejecting claim of racial discrimination when a firefighter with sickle cell anemia was dismissed because of the heightened risk of sickle cell crisis; plaintiff was not qualified for the position).

181 Muller v. Oregon, 208 U.S. 412, 422 (1908).

182 See Fair Labor Standards Act, 29 U.S.C. §§ 201 - 219 (1988); Occupational Safety and Health Act, 29 U.S.C. §§ 651 - 687 (1988).

183 Pub. L. No. 95-555, 92 Stat. 2076 (codified as amended at 42 U.S.C. § 2000e(k) (1988)).

184 Women affected in pregnancy, childbirth, or related medical conditions shall be treated the same as others who are “similar in their ability or inability to work.” 42 U.S.C. § 2000e(K) (1988).

185 International Union, UAW v. Johnson Controls, Inc., 1991 US LEXIS 1715.

186 The pre-set levels were: (1) where any employee recorded a blood lead level exceeding 30ug/dl during the preceding year; or (2) the work site yielded an air sample during the preceding year in excess of 30ug/dl. International Union, UAW v. Johnson Controls, Inc., 886 F.2d 871, 876 & nn.7, 9 (7th Cir. 1989), rev'd, 1991 US LEXIS 1715.

189 Id. at 901.

188 Id. at 885-901. See Hayes v. Shelby Memorial Hosp., 726 F.2d 1543 (11th Cir. 1984); Wright v. Olin Corp. 697 F.2d 1172, 1186 (4th Cir. 1982) (“the problem presented by a fetal protection policy involved motivations and consequences most closely resembling a disparate impact case“).

189 Johnson Controls, 886 F.2d at 888, 899-901. See also Hayes, 726 F.2d at 1543.

190 Johnson Controls, 1991 US LEXIS 1715, *19.

191 Id. at *22.

192 Id. at *32.

193 Id. at *33.

194 See Berlin, Fix the Job, Not the Worker, L.A. Times, Nov. 27, 1989, § B, at 7, col. 1.

195 Occupational Safety and Health Act (OSHA), 29 U.S.C. § 655(b)(5) (1988). “OSHA has statutory authority to protect the fetuses of lead exposed working mothers … . Harm to fetuses is a material impairment of the reproductive systems of parents.” United Steelworkers of Am. v. Marshall, 647 F.2d 1189, 1256 n.96 (D.C. Cir. 1980), cert, denied, 453 U.S. 913 (1981).

196 CAL. HEALTH & SAFETY CODE §§ 150, 151, 155, 309, 341 (West 1990); 1990 Cal. Senate Bill 1008 (ch. 26); FLA. STAT. § 385.206 (1989); Illinois 1990 Public Act 86-1028; IOWA CODE § 136A.2 (1989); LA. REV. STAT. ANN. § 46.2254 (West 1982); MD. HEALTH-GEN. CODE ANN. § 13-101; MO. REV. STAT. § 191 (1989); NJ. REV. STAT. § 26:5B-3 (1987); 1990 N.Y. LAWS 900; VA. CODE ANN. § 32.1-68. (1990).

197 CAL. HEALTH & SAFETY CODE § 150 (West 1990).

198 See, e.g., id; N.J. REV. STAT. § 26:5B (1987); N.J. STAT. ANN. § 10:5-12a (West Supp. 1990) (any “atypical hereditary or blood trait“).

199 CAL. HEALTH & SAFETY CODE § 150 (West 1990).

200 FLA. STAT. § 448.075 (1989) (prohibits testing for sickle cell but no other genetic trait or disease); id. at § 385.206 (1989) (singles out sickle cell and hemophilia for medical care grants); LA. REV. STAT. ANN. § 46.2254 (West 1982) (prohibits employment discrimination only with regard to sickle cell).

201 See Mo. REV. STAT. § 191.3 (Supp. 1991) (defines genetic and metabolic disease programs to include those concerning cystic fibrosis, hemophilia, and sickle cell); 1990 N.Y. LAWS 900 (including sickle cell, Tay-Sachs or Cooley's anemia).

202 CAL. HEALTH & SAFETY CODE § 150 (West 1990).

203 See, e.g., N.J. STAT. ANN. § 10:5-12a (West Supp. 1990).

204 See, e.g., FLA. STAT. ANN. § 448.075 (1981) (“No person, firm, corporation, … state agency, … or any public or private entity shall deny or refuse employment to any person or discharge any person from employment solely because such person has the sickle cell trait.“).

205 Illinois 1990 Public Act 86-1028, S.B. No. 1466.

206 Id.

207 E.g., FLA. STAT. ANN. § 448.075 (West 1988) (prohibiting testing for sickle cell).

208 E.g., id. at § 385.206 (1989); IOWA CODE § 136A.2 (1989).

209 Ill. 1990 Public Act 86-1028, S.B. No. 1466.

210 Mo. ANN. STAT. §§ 191.317, 191.320 (Vernon Supp. 1991).

211 See generally D. NELKIN & L. TANCREDI, DANGEROUS DIAGNOSTICS: THE SOCIAL POWER OF BIOLOGICAL INFORMATION (1989).

212 See Public Health Strategies for Confronting AIDS, supra note 65, at 1621.