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Protecting Genetic Privacy by Permitting Employer Access Only to Job-Related Employee Medical Information: Analysis of a Unique Minnesota Law

Published online by Cambridge University Press:  24 February 2021

Mark A. Rothstein ,
Betsy D. Gelb  and
Steven G. Craig
Mark A. Rothstein
Affiliation:
University of Houston; University of Pittsburgh; Georgetown University
Betsy D. Gelb
Affiliation:
University of Houston College of Business Administration; University of Missouri; University of Houston; University of Houston
Steven G. Craig
Affiliation:
University of Houston College of Social Sciences; Cornell University; University of Pennsylvania
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Extract

One of the most frequently expressed concerns about new scientific discoveries resulting from the Human Genome Project is the potential for genetic discrimination in insurance and employment. The issue of discrimination in insurance, primarily health insurance, has justifiably received widespread attention in the scholarly literature. Among other research, there has been a special task force on insurance of the Joint Working Group on Ethical, Legal, and Social Implications of the Human Genome Project, a special committee report of the National Action Plan on Breast Cancer, a special report of the American Council of Life Insurance and the Health Insurance Association of America and numerous reports and scholarly articles.

The ethical, legal and social implications of genetic discrimination in employment, although widely recognized as being very important, have received somewhat less attention than genetic discrimination in health insurance. Undoubtedly, much of the concern about genetic discrimination in employment arises from the relationship between employment and group health insurance. However, there are other problems. The disclosure of sensitive genetic information may result in invasions of privacy and breaches of confidentiality in obtaining the information and the loss of employment means denial of the opportunity to earn a livelihood for individuals determined to be at genetic risk. As a result, many at-risk individuals forego genetic testing because they fear these consequences.

Type
Articles
Information
American Journal of Law & Medicine , Volume 24 , Issue 4 , 1998 , pp. 399 - 416
Copyright
Copyright © American Society of Law, Medicine and Ethics and Boston University 1998

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Footnotes

†

Research on this Article was supported by grant number DE-FG03-97ER62353 from the United States Department of Energy. The authors are indebted to the following consultants on this project: Stephen F. Befort (Minnesota Law); Samuel J. Bresler (Human Resources); Daniel S. Hamermesh (Economics); Myron Harrison (Occupational Medicine); and Seymour Sudman (Marketing). Marsha Greenfield, Legislative Director for Minnesota State Senator Allan Spear, supplied valuable information about the legislative history of the Minnesota Human Rights Amendments of 1983, and Steve Lapinsky of the Minnesota Department of Human Rights assisted immeasurably in our review of the case filings on employment discrimination based on disability in Minnesota. Mark Rothstein would like to acknowledge the expert research assistance of Robin Caneff, J.D. 1999, University of Minnesota; and Anne Chandler, J.D. 1998, University of Houston. Betsy Gelb would like to acknowledge the assistance of Andrea Stanaland.

References

1 See NIH-DOE Working Group on Ethical, Legal, and Social Implications of Human Genome Research, Genetic Information and Health Insurance: Report of the Task Force on Genetic Information and Insurance (visited Sept. 4,1998) <http://www.nhgri.nih.gov/About_NHGRI7Der/Elsi/itf.html>.

2 See Hudson, Kathy L. et al., Genetic Discrimination and Health Insurance: An Urgent Need for Reform, 270 SCIENCE 391 (1995).CrossRefGoogle Scholar

3 See AMERICAN COUNCIL OF LIFE INSURANCE & HEALTH INSURANCE ASSOCIATION OF AMERICA, REPORT OF THE ACLI-HIAA TASK FORCE ON GENETIC TESTING (1991).

4 See, e.g., Ray Moseley et al., The Ethical, Legal, and Social Implications of Predictive Genetic Testing for Health Insurance: Policy Analysis and Recommendations (The Human Genome Insurance Project Medical Humanities Program, University of Florida College of Medicine, 1993); Nancy E. Kass, The Implications of Genetic Testing for Health and Life Insurance, in GENETIC SECRETS: PROTECTING PRIVACY AND CONFIDENTIALITY IN THE GENETIC ERA 299 (Mark A. Rothstein ed., 1997); Thomas H. Murray, Genetics and the Moral Mission of Health Insurance, HASTINGS CENTER REP., Nov.-Dec. 1992, at 12; Pokorski, Robert J., Genetic Information and Life Insurance, 376 NATURE 13 (1995)CrossRefGoogle Scholar; Rothenberg, Karen H., Genetic Information and Health Insurance: State Legislative Approaches, 23 J.L. MED. & ETHICS 312 (1995)CrossRefGoogle Scholar; Deborah A. Stone, The Implications of the Human Genome Project for Access to Health Insurance, in THE HUMAN GENOME PROJECT AND THE FUTURE OF HEALTH 133 (Thomas H. Murray et al. eds., 1996).

5 See, e.g., Council on Ethical and Judicial Affairs, American Medical Association, Use of Genetic Testing by Employers, 266 JAMA 1827 (1991)CrossRefGoogle Scholar; Andrews, Lori B. & Jaeger, Ami S., Confidentiality of Genetic Information in the Workplace, 17 AM. J.L. & MED. 75 (1991)Google Scholar; Gostin, Lawrence O., Genetic Discrimination: The Use of Genetically Based Diagnostic and Prognostic Tests by Employers and Insurers, 17 AM. J.L. & MED. 109 (1991)Google Scholar; Henry Greely, Health Insurance Employment Discrimination and the Genetics Revolution, in THE CODE OF CODES: SCIENTIFIC AND SOCIAL ISSUES IN THE HUMAN GENOME PROJECT 264 (Daniel Kevles & Leroy Hood eds., 1992); Orentlicher, David, Genetic Screening by Employers, 263 JAMA 1005 (1990)CrossRefGoogle Scholar.

6 See, e.g., MARK A. ROTHSTEIN, MEDICAL SCREENING AND THE EMPLOYEE HEALTH COST CRISIS 195-217 (1989) (discussing the history of employers providing health insurance coverage to employees) [hereinafter EMPLOYEE HEALTH COST CRISIS]; Rothstein, Mark A., Genetic Testing: Employ ability. Insurability and Health Reform, 17 J. NAT'L CANCER INST. MONOGRAPHS 87 (1995).Google Scholar

7 See Yesley, Michael, Protecting Genetic Difference, 13 BERKELEY TECH. L.J. 653, 658-59 (1998)Google Scholar (discussing denial of employment opportunities).

8 See, e.g., Quaid, Kimberly A. & Morris, Michael, Reluctance to Undergo Predictive Testing: The Case of Huntington Disease, 45 AM. J. MED. GENETICS 41, 44 (1993).CrossRefGoogle Scholar

9 See Yesley, supra note 7, at 655-69.

10 See Minnesota Human Rights Act, MINN. STAT. ANN. §§ 363.01-20 (West 1991 & Supp. 1998).

11 See MARK A. ROTHSTEIN, MEDICAL SCREENING OF WORKERS 191-201 (1984).

12 See EMPLOYEE HEALTH COST CRISIS, supra note 6, at 1-6.

13 The rule originated in HORACE G. WOOD, A TREATISE ON THE LAW OF MASTER AND SERVANT (1877).

14 See 2 MARK A. ROTHSTEIN ET AL., EMPLOYMENT LAW § 9.1, at 232 (1994).

15 See 1 MARK A. ROTHSTEIN ET AL., EMPLOYMENT LAW § 3.1, at 88, 109 (1994).

16 See ROTHSTEIN, supra note 11, at 73-76.

17 See FLA. STAT. ANN. § 448.075 (West 1997) (enacted 1978).

18 See LA. REV. STAT. ANN. § 352 (West 1998) (enacted 1976).

19 See N.C. GEN. STAT. § 95-28.1 (1997) (enacted 1975).

20 See N.J. STAT. ANN. § 10:5-5(y)-(cc) (West 1993 & Supp. 1998) (enacted 1981).

21 See N.Y. Civ. RIGHTS LAW §§ 48, 48-a (McKinney 1992).

22 See N.J. STAT. ANN. § 10:5-5(y)-(cc).

23 See N.Y. Civ. RIGHTS LAW § 48 (McKinney 1992). The statute specifically prohibits discrimination against those who carry the “sickle cell trait, Tay-sachs disease or carriers of Cooley's anemia.” Id. Cooley's anemia is another term for β-thalassemia. See THE MERCK MANUAL 1173 (16th ed. 1992).

24 See OR. REV. STAT. § 659.227 (1997).

25 See id. § 659.227(1), (3)(b). However, a job applicant or employee can consent to a genetic test as provided by Oregon law, if the test is “administered solely to determine a bona fide occupational qualification.” Id. § 659.227(6).

26 See id. § 659.700(6). A “[g]enetic test means a test for determining the presence or absence of genetic characteristics in an individual, including tests of nucleic acids such as DNA, RNA and mitochondrial DNA, chromosomes or proteins in order to diagnose a genetic characteristic.” Id.

27 See ARIZ. REV. STAT. 41-1463(B)(3) (West 1992 & Supp. 1997) (enacted 1997).

28 See 1998 Cal. Legis. Serv. 99 (West), (including genetic characteristics as part of the definition of “medical condition” referenced in CAL. GOV't CODE § 12,926 (West 1998)).

29 See 1998 Conn. Legis. Serv. 98-180 (West) (enacted 1998).

30 See DEL. CODE ANN. tit. 18, § 2317 (1998) (enacted 1998).

31 See IOWA CODE ANN. § 729.6 (West 1993) (enacted 1992).

32 See N.H. REV. STAT. ANN. § 141-H:3.I(b) (1997) (enacted 1995).

33 See 1998 N.M. Adv. Legis. Serv. ch. 77 (enacted 1998).

34 See N.Y. EXEC. LAW § 296(1)(a) (Consol. 1998) (enacted 1996).

35 See N.C. GEN. STAT. § 95-28.1A (1997) (enacted 1997).

36 See OKLA. STAT. tit. 36, § 3614.1 (1998) (enacted 1998).

37 See R.I. GEN. LAWS § 28-6.7-1 (1995) (enacted 1992).

38 See TEX. LAB. CODE ANN. §§ 21.401-.402 (West Supp. 1998) (enacted 1997).

39 See VT. STAT. ANN. tit. 18, § 9333(a) (1998) (enacted 1998).

40 See Wis. STAT. ANN. § 111.372 (West 1997) (enacted 1992).

41 See, e.g., IOWA CODE ANN. § 729.6 (West 1993) (defining genetic testing as “a test of person's genes, gene products, or chromosomes … .”).

42 See N.J. STAT. ANN. § 10:5-12 (West 1998).

43 See id. § 10:5-12(a) (stating it shall be unlawful “[f]or an employer, because of … genetic information … or because of the refusal to submit to a genetic test or make available the results of a genetic test to an employer, to refuse to hire or employ or to bar or to discharge or require to retire, unless justified by lawful considerations other than age, from employment such individual or to discriminate against such individual in compensation or in terms, conditions or privileges of employment.…”).

44 See id.

45 See id. § 10:5-5(oo).

46 See id. §§ 10:5-44 to :5-45 (West Supp. 1998). These statutes typically grant an employer access to an employee's medical records and genetic information through a signed employee authorization. See id.

47 The broadest reading of the New Jersey law would prohibit employers from discriminating against individuals based on a history of a medical condition, such as epilepsy or diabetes, that may be influenced by genetic factors. In some situations, employing individuals with uncontrolled medical conditions creates a risk to the safety of the individual, coworkers or the public.

48 See generally Mark A. Rothstein, Genetic Secrets: A Policy Framework, in GENETIC SECRETS: PROTECTING PRIVACY AND CONFIDENTIALITY IN THE GENETIC ERA 451, 475-79 (Mark A. Rothstein ed., 1997) (discussing the possibility of amending the Americans with Disabilities Act (ADA) to protect employees from discrimination based on genetic abnormalities and/or promulgating statutes, using the ADA as a model of proper construction, to control third-party access to employees’ genetic information).

49 By creating laws to address specific conditions, whatever they may be, an inference is created that they are somehow worse than similar conditions that have not been singled out. It is this negative inference that this approach seeks to avoid.

50 42 U.S.C. §§ 12101-12213 (1994 & Supp. 1996).

51 See 1 R0THSTE1N ET AL., supra note 15, § 3.39, at 323-30 (comparing state antidiscrimination laws with the ADA); 1 ROTHSTEIN ET AL., EMPLOYMENT LAW, § 3.38, at 67 (Supp. 1998).

52 See 42 U.S.C. § 12111(5)(A). However, there are a few exceptions to this general rule. See id. §12111(5)(B).

53 See 1 ROTHSTEIN ET AL., supra note 15, § 3.39, at 328.

54 See 42 U.S.C. § 12201(b) (“Nothing in this chapter shall be construed to invalidate or limit the remedies, rights, and procedures of any Federal law or law of any State or political subdivision of any State or jurisdiction that provides greater or equal protection for the rights of individuals with disabilities than are afforded by this chapter … .”).

55 See id. § 12112(a) (“No covered entity shall discriminate against a qualified individual with a disability because of the disability of such individual in regard to job application procedures, the hiring, advancement, or discharge of employees, employee compensation, job training, and other terms, conditions, and privileges of employment.”).

56 See id. § 12102(2).

57 See id.

58 See Rothstein, Mark A., Genetic Discrimination in Employment and the Americans with Disabilities Act, 29 Hous. L. REV. 23, 39 (1992)Google Scholar.

59 See 2 EEOC Compl. Man. (CCH) ¶ 6880, at 5303 (Mar. 14, 1995).

60 See id. ¶ 6888, at 5325.

61 See id. at 5325-26.

62 See 42 U.S.C. § 12112(d).

63 See id. 12112(d)(2)(A).

64 See id. § 12112(d)(3).

65 See id.

66 See id.

67 See id.

68 See id.

69 See id. § 12112(d)(3)(B)(i)-(iii).

70 See id. § 12112(b)(6) (“[T]he term ‘discriminate’ includes … other selection criteria that screen out … an individual with a disability … unless the … selection criteria, as used by the [employer], is shown to be job-related for the position in question and is consistent with business necessity.”); id. § 12112(d)(4)(A) (“[An employer] shall not require a medical examination [nor inquire of an employee as to the extent of his or her disability] unless such examination or inquiry is shown to be job-related and consistent with business necessity.”).

71 See id. § 12112(d)(3)(B)-(C); Norman-Bloodsaw v. Lawrence Berkeley Lab., 135 F.3d 1260, 1273 (9th Cir. 1998) (stating the “ADA imposes no restriction on the scope of entrance examinations; it only guarantees the confidentiality of the information gathered, and restricts the use to which an employer may put the information.”).

72 See 42 U.S.C. § 12112(d)(3)(A)-(C).

73 See id. § 12113(a).

74 See id. § 12112(b)(6), (d)(4)(A).

75 See id. § 12112(d)(3)(A)-(C).

76 See EEOC Technical Assistance Manual on the Employment Provisions (Title I) of the ADA, at VI-2 (1992); 56 Fed. Reg. 35,726, 35,751 (1991) (interpreting 29 C.F.R. § 1630.14(b) as permitting employers to condition employment offers on results of medical examinations, provided that all entering employees in the same job category are subjected to the same examination regardless of disability); Norman-Bloodsaw, 135 F.3d at 1273.

77 See Rothstein, Mark A., Legal and Ethical Aspects of Medical Screening, 11 OCCUP. MED.: STATE OF THE ART REVS. 31, 37 (1996)Google Scholar.

78 See id. at 35. Under the ADA, a covered entity may require a medical examination after an offer of employment has been made. See 42 U.S.C. § 12112(d)(3). As part of the medical examination, medical histories may be taken. See id. § 12112(d)(4)(B).

79 See Rothstein, supra note 77, at 37.

80 See 136 CONG. REC. H2599 (daily ed. May 22, 1990); Feldblum, Chai R., Medical Examinations and Inquiries Under the Americans with Disabilities Act: A View from the Inside, 64 TEMP. L. REV. 521,531-33,537-38 (1991)Google Scholar.

81 Cf Feldblum, supra note 80, at 535-38 (1991) (alluding generally to employer concerns that restrictions would be expensive and that further costs would arise from not permitting employers to screen those unable to perform “essential job functions” safely).

82 See 42 U.S.C. § 12112(d)(2)-(3) (1995) (the ADA specifically addresses only pre-offer and preplacement situations).

83 See id. § 12112(d)(2).

84 See id. § 12112(d)(3).

85 See Quaid & Morris, supra note 8, at 44.

86 135 F.3d 1260 (9th Cir. 1998).

87 See id. at 1265.

88 See id. at 1264-66.

89 See id. at 1266.

90 See id.

91 See id.

92 See id. at 1261.

93 See id. at 1267-68.

94 See id. at 1275.

95 See id. at 1269.

96 See id. at 1272.

97 See id.

98 See id. at 1273-74.

99 See MINN. STAT. ANN. § 363.01-.20. (West 1991 & Supp. 1998).

100 See id. § 363.02(1)(9).

101 See id. § 363.02(1)(9)(i)(a)-(b).

102 Interview with Marsha Greenfield, Legislative Director for Minnesota State Senator Allan Spear (January 29, 1998).

103 See STATE OF MINNESOTA, JOURNAL OF THE SENATE: SEVENTY-THIRD LEGISLATURE 329 (1983); 1 STATE OF MINNESOTA, JOURNAL OF THE HOUSE OF REPRESENTATIVES: 1982 THIRD SPECIAL SESSION AND INDEX OF THE LEGISLATURE 597 (1983).

104 Legislative hearings are not available in published text form, rather they are available on audio tape. There are five tapes from the Minnesota Senate and five tapes from the Minnesota House of Representatives on this particular legislation.

105 See Minnesota Senate Judicial Civil Law Tape, Side B (Mar. 23, 1983).

106 Undoubtedly, this is a reference to Section 504 of the Rehabilitation Act of 1973, which prohibits the federal government, government contractors and recipients of federal financial assistance from discriminatory employment practices. See Rehabilitation Act of 1973, Pub. L. No. 93-112, § 504, 87 Stat. 355, 394. The entire amendment, not merely the medical examination provisions, were intended to incorporate into Minnesota law the provisions of the Rehabilitation Act.

107 See Minnesota Senate Judicial Civil Law Tape, supra note 105.

108 See STATE OF MINNESOTA, JOURNAL OF THE SENATE, supra note 103, at 2750.

109 See 1 STATE OF MINNESOTA, JOURNAL OF THE HOUSE OF REPRESENTATIVES, supra note 103, at 3940.

110 See STATE OF MINNESOTA, JOURNAL OF THE SENATE, supra note 103, at 4451.

111 See MINN. STAT. ANN. § 363.03(2) (West Supp. 1998).

112 See id. §363.06.

113 See MDHR No. ER 19940952 (May 26, 1994).

114 See MDHR No. 271222 (Mar. 21, 1997).

115 See MDHR No. ER 19951085 (July 25, 1995); MDHR No. ER 19931523 (Aug. 30, 1993).

116 Huisenga v. Opus Corp., 494 N.W.2d 469 (Minn. 1993), is the only case dealing with the relevant statutory provision. The Minnesota Supreme Court held that where an employer asked unlawful questions on the employment application regarding the physical condition and health of the applicant, extending beyond an inquiry into the applicant's ability to perform essential job functions, an applicant's false answers could not be used to deny that applicant's subsequent workers’ compensation claim. See id. at 471-74.

117 Interviews with various employment lawyers, at the University of Minnesota School of Law and at a Continuing Legal Education Program on the ADA sponsored by the Minnesota Institute of Legal Education (Jan. 29, 1998).

118 The survey was administered by Mark A. Rothstein on January 29, 1998, in St. Paul, Minnesota.

119 The 1996/1997 Membership Directory of the American College of Occupational and Environmental Medicine lists 113 members from Minnesota, excluding retired members. It is not known how many practice full time in occupational and environmental medicine.

120 Comments to this effect were made to the investigator, Mark A. Rothstein, during a discussion period after completion of the survey instrument.

121 During the Society of Human Resource Managers (SHRM) conference held on September 22-23, 1997, in Duluth, Minnesota, questionnaires were placed in a sealed envelope in the packet of each registrant and labeled: “Please don't open this envelope until asked to do so.” At an early plenary session, Betsy D. Gelb, a principal investigator, asked those present to open the envelope and complete the questionnaire immediately. The short time to complete the questionnaire minimized possible discussion of the issues and increases the probability that the registrants’ answers are their own opinions.

122 Data from the Ohio SHRM conference, held on October 15-17, 1997, in Akron, Ohio, were collected by University of Houston researcher Andrea Stanaland, who followed a procedure similar to that used at the Minnesota SHRM conference.

123 See Kapur, Kanika, The Impact of Health on Job Mobility: A Measure of Job Lock, 51 IND. & LAB. REL. REV. 282, 282 (1998)CrossRefGoogle Scholar.

124 See id.

125 See Schwartz, Paul M., Privacy and the Economics of Personal Health Care Information, 76 TEX. L. REV. 1, 33 (1997)Google Scholar (finding job lock “introduces significant distortions in the labor market” which in turn adversely affect the economy).

126 Every year, Americans “turn down better jobs because they know if they take the better job, they will lose their health insurance.” 140 CONG. REC. H28 (1994) (President Clinton's January 25, 1994 State of the Union Address), reprinted in 1994 U.S.C.C.A.N. D3, at D9.

127 See Schwartz, supra note 125, at 8.

128 See id. at 26.

129 See id.

130 The Current Population Survey is a monthly survey of about 50,000 households conducted by the Bureau of the Census for the Bureau of Labor Statistics. It should be noted that the federal Health Insurance Portability and Accountability Act, 42 U.S.C. §§ 300gg to gg-1 (1998), was enacted specifically to address the problem of job lock. See Health Insurance Portability and Accountability Act of 1996, H.R. CONF. REP. No. E1502 (1996) (extension of remarks by Hon. Gary A. Franks). Because the law was enacted in 1996, it does not affect the economic analysis in this section.

131 The regression procedure used was ordinary least squares. For more information on this procedure, see DAVIDS. HUANG, REGRESSION AND ECONOMIC METHODS 16, 33, 57, 127, 136 (1970).