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Predictive Health Information and Employment Discrimination under the ADA and GINA

Published online by Cambridge University Press:  01 January 2021

Mark A. Rothstein
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Type
Columns: Currents in Contemporary Bioethics
Information
Journal of Law, Medicine & Ethics , Volume 48 , Issue 3: A Bold Agenda for the Next Steps in Health Reform , Fall 2020 , pp. 595 - 602
Copyright
Copyright © American Society of Law, Medicine and Ethics 2020

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References

Rothstein, M.A., Medical Screening and the Employee Health Cost Crisis (Washington, DC: BNA Books, 1989): at 1.Google Scholar
42 U.S.C. §§ 12101-12213.Google Scholar
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Omics is increasingly useful for many diseases, including asthma, Donovan, B.M. et al., “The Current States of Omics Technologies in the Clinical Management of Asthma and Allergic Diseases,” The Current States of Omics Technologies in the Clinical Management of Asthma and Allergic Diseases, 123, no. 6 (2019): 550–557; breast cancer, G. Judes et al., “High-Throughput ‘Omics’ Technologies: New Tools for Triple-Negative Breast Cancer,” Cancer Letters 382, no. 1 (2016): 77-85; and hypertension, Currie, G. and Delles, C., “The Future of ‘Omics” in Hypertension,” Canadian Journal of Cardiology 33, no. 5 (2017): 601-610.Google Scholar
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See generally Cohen, I.G. et al., “The Legal and Ethical Concerns that Arise from Using Complex Predictive Analytics in Health Care, Health Affairs 33, no. 7 (2014): 1139–1147; Topol, E.J., “High-Performance Medicine: The Convergence of Human and Artificial Intelligence,” Nature Medicine 25, no. 1 (2019): 44-56. For an article asserting the need to regulate this technology, see Hoffman, S., “What Genetic Testing Teaches about Predictive Analytics Regulation,” North Carolina Law Review 98, no. 1 (2019): 123-163.CrossRefGoogle ScholarPubMed
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See Rothstein, M.A., “The End of the HIPAA Privacy Rule?” The End of the HIPAA Privacy Rule? 44, no. 2 (2016): 352–358. See also Rothstein, M.A. and Tovino, S.A., “Privacy Risks of Interoperable Electronic Health Records: Segmentation of Sensitive Information Will Help,” Journal of Law, Medicine & Ethics 47, no. 4 (2019): 771-777.Google ScholarPubMed
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See Rothstein, M.A., Medical Screening of Workers (Washington, DC: BNA Books, 1984).Google Scholar
See Rothstein, supra note 1.Google Scholar
Presenteeism refers to a situation where employees are physically at work, but they are unable to perform their duties adequately because of illness or injury. See Hemp, P., “Presenteeism: At Work – But Out of It,” Presenteeism: At Work – But Out of It, 82, no. 10 (2004): 49–58.Google Scholar
Discrimination against individuals because of increased health care costs would violate the Affordable Care Act and the Americans with Disabilities Act. See Roberts, J.L., “Healthism and the Law of Employment Discrimination,” Healthism and the Law of Employment Discrimination, 99, no. 2 (2014): 571–635.Google Scholar
Impaired employees are more likely to be involved in accidents causing injury to themselves or co-employees.Google Scholar
29 U.S.C. §§ 2601-2654.Google Scholar
See Hoffman, S., “Big Data and the Americans with Disabilities Act,” Hastings Law Journal 68, no. 4 (2017): 777–793, 780-784.Google Scholar
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29 U.S.C. §§ 701-796. The Rehabilitation Act applies to federal agencies (§ 501), federal government contractors (§ 503), and recipients of federal financial assistance (§ 504).Google Scholar
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See Rothstein, M.A., Roberts, J., and Guidotti, T.L., “Limiting Occupational Medical Examinations under the Americans with Disabilities Act and the Genetic Information Nondiscrimination Act,” American Journal of Law & Medicine 41, no. 4 (2015): 523–567 (2015) (discussing preplacement medical examinations).CrossRefGoogle Scholar
Although the defendant's rationale clearly implicates the “direct threat” language of the ADA, see Chevron U.S.A. Inc. v. Echazabal, 536 U.S. 73 (2002), it is not clear that medical evidence would substantiate the fear of sudden incapacitation. Nevertheless, other cases have decided the “future risk” issue without the need to assert sudden incapacitation. See the cases cited in notes 39-40 infra.Google Scholar
Richardson v. Chicago Transit Authority, 926 F.3d 881 (7th Cir. 2019). ADA coverage for obesity remains unresolved, but some state disability discrimination statutes clearly apply to individuals with obesity. See Taylor v. Burlington Northern Railroad Holdings, Inc., 444 P.3d 606, 608 (Wash. 2019) (“obesity always qualifies as an impairment” under Washington law).Google Scholar
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EEOC Compliance Manual § 902.8, 2009 WL 4782113. This interpretation was adopted in 1995, the year an earlier version of GINA was first introduced in Congress and 13 years before GINA's enactment. In the interest of full disclosure, in 1995 I served as Special Legislative Counsel to NIH and worked with the late EEOC Commissioner Paul Steven Miller and his staff to develop this interpretation.Google Scholar
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See Rothstein, M.A., “GINA, the ADA, and Genetic Discrimination in Employment,” GINA, the ADA, and Genetic Discrimination in Employment, 36, no. 4 (2008): 837–840 (arguing that gaps remain in the coverage of genetic-related impairments).Google Scholar
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See Prince, AE.R. and Berkman, B.E., “When Does an Illness Begin: Genetic Discrimination and Disease Manifestation,” When Does an Illness Begin: Genetic Discrimination and Disease Manifestation, 40, no. 3 (2012): 655–664.Google Scholar
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See supra note 48 (discussing gaps in coverage of GINA and the ADA).Google Scholar
See generally Roberts, J.L. and Weeks, E., Healthism: Health-Status Discrimination and the Law (New York, NY: Cambridge University Press, 2018) (discussing health-status discrimination in various contexts).CrossRefGoogle Scholar
See Rothstein, L., “Would the ADA Pass Today?: Disability Rights in an Age of Partisan Polarization,” Would the ADA Pass Today?: Disability Rights in an Age of Partisan Polarization, 12, no. 2 (2019): 271–309.Google Scholar
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GINA was enacted so that individuals would not be reluctant to undergo genetic testing, participate in genetic research, or avail themselves of genetic services. GINA § 2(5), 42 U.S.C. § 2000ff note. See Roberts, J.L., “Preempting Discrimination: Lessons from the Genetic Information Nondiscrimination Act,” Preempting Discrimination: Lessons from the Genetic Information Nondiscrimination Act, 63, no. 2 (2010): 439–490.Google Scholar
See Murray, T.E., “Genetic Exceptionalism and ‘Future Diaries’: Is Genetic Information Different from Other Medical Information?” in Roth stein, M.A., ed., Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era (New Haven, CT: Yale University Press, 1997): 60–73; Rothstein, M.A., “Genetic Exceptionalism and Legislative Pragmatism,” Hastings Center Report 35, no. 4 (2005): 27-33.Google Scholar
See Evans, J.P., Burke, W., and Khoury, M., “The Rules Remain the Same for Genomic Medicine: The Case Against ‘Reverse Genetic Exceptionalism,’” The Rules Remain the Same for Genomic Medicine: The Case Against ‘Reverse Genetic Exceptionalism,’ 12, no. 6 (2010): 342–343 (arguing that some special treatment of genetic information is warranted, such as genetic links to mental illness); Rothstein, M.A., “Time to End the Use of Genetic Test Results in Life Insurance Underwriting,” Journal of Law, Medicine & Ethics 46, no. 3 (2018): 794-801 (arguing that banning genetic test results in life insurance underwriting will save lives because some genetically at-risk individuals decline beneficial testing and follow-up because they are worried about being excluded from life insurance coverage).Google Scholar
See Garrison, N. et al., “Genomic Contextualism: Shifting the Rhetoric of Genetic Exceptionalism,” Genomic Contextualism: Shifting the Rhetoric of Genetic Exceptionalism, 19, no. 1 (2019): 51–63 (arguing that as policy focus shifts from genetics to genomics, contextualism rather than exceptionalism is a better analytic approach).Google Scholar
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See Rothstein, M.A., “Genetics and the Workforce of the Next Hundred Years,” Genetics and the Workforce of the Next Hundred Years, 3, no. 3 (2000): 371–402 (proposing optional, confidential genetic testing and monitoring at both the preplacement and periodic stages of employment).Google Scholar
See Rothstein, M.A., “Legal Conceptions of Equality in the Genomic Age,” Legal Conceptions of Equality in the Genomic Age, 25, no. 2 (2007): 429–463.Google Scholar
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See 29 C.F.R. § 1630.2(i) (defining major life activities).Google Scholar
42 U.S.C. § 2000e(k).Google Scholar
Pregnant women are not entitled to reasonable accommodation under Title VII. Young v. United Parcel Service, Inc., 135 S. Ct. 1338 (2015). See Hébert, L.C., “Disparate Impact and Pregnancy: Title VII's Other Accommodation Requirement,” Disparate Impact and Pregnancy: Title VII's Other Accommodation Requirement, 24, no. 1 (2015): 107–173.Google Scholar
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29 C.F.R. § 1630.2(o)(4).Google Scholar
Another way of broadening the coverage of the ADA to include future health risks while also providing for reasonable accommodation is to amend section 3(2) of the ADA by adding a fourth prong to the definition of disability: “(D) having a risk of a future physical or mental impairment that would substantially limit one or more of the major life activities of such individual, having a record of such a risk, or being regarded as having such a risk.” See Rothstein, M.A., “Genetic Secrets: A Policy Framework,” Genetic Secrets: Protecting Privacy and Confidentiality in the Genetic Era, Rothstein, M.A., ed. (New Haven: Yale University Press, 1997): 451–495, 477.Google Scholar
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This provision would not apply to seasonal or temporary employment, and thus an employer might be required to hire short-term employees with more immediate future impairments. On the other extreme, the six-month rule should be a presumption that can be rebutted by an employer upon a showing that the job requirement (e.g., one-year stay at a remote location) or training period (during which time the individual is unable to obtain certification or make significant contributions to the enterprise) extends beyond six months.Google Scholar
42 U.S.C. § 12112(d)(3). The current provision does not limit the scope of medical examinations and inquiries, but if a conditional offer is withdrawn based on an “employment entrance examination,” the exclusion must be job-related and consistent with business necessity. 42 U.S.C. §12112(b)(6).Google Scholar
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For example, GINA defines a genetic test as “an analysis of human DNA, RNA, chromosomes, proteins, or metabolites, that detects genotypes, mutations, or chromosomal changes.” 42 U.S.C. § 2000ff(7)(A). By focusing on “DNA and RNA” it omits epigenetic testing, see Rothstein, M.A., “Epigenetic Exceptionalism,” Journal of Law, Medicine & Ethics 41, no. 3 (2013): 733–736, and by limiting coverage to “human” DNA and RNA, excludes microbiome testing, see Schlaberg, R., “Microbiome Diagnostics,” Clinical Chemistry 66, no. 1 (2020): 68-76.CrossRefGoogle ScholarPubMed
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See Rothstein, supra note 62.Google Scholar
State laws prohibiting discrimination on the basis of disability or genetic information generally follow the framework of federal legislation and therefore ought to be amended in a similar fashion.Google Scholar