Abstract
This chapter explores the debate in the US over the use of genetic information by employers and insurers. It describes the passage and content of the Genetic Information Nondiscrimination Act (GINA), discusses the Act’s definition of genetic discrimination, and provides an overview of state laws aimed at preventing genetic discrimination. The chapter then turns to the use of genetic information in the workplace and examines how GINA limits the ability of employers to obtain, and use, genetic information when making hiring and other employment decisions. The discussion of employment is followed by an analysis of GINA’s impact on the use of genetic information in the health insurance context, which is contrasted to life, long-term care, and disability insurance, all unaffected by GINA. The final section of the chapter highlights a few of GINA’s accomplishments and speculates about how current policy is likely to be affected by changes in the science of genetic testing.
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Notes
- 1.
Lowe v Atlas Logistics Grp. Retail Servs. (Atlanta), LLC, 102 F. Supp. 3d 1360 (N.D. Ga. 2015).
- 2.
Lowe v Atlas Logistics Grp. Retail Servs. (Atlanta), LLC, 102 F. Supp. 3d 1360 (N.D. Ga. 2015), p. 1361.
- 3.
Lowe v Atlas Logistics Grp. Retail Servs. (Atlanta), LLC, 102 F. Supp. 3d 1360 (N.D. Ga. 2015), pp. 1362–1363.
- 4.
Jack LOWE and Dennis Reynolds, Plaintiffs, v. ATLAS LOGISTICS GROUP RETAIL SERVICES (ATLANTA), LLC, Defendant, 2013 WL 11007237 (N.D.Ga.).
- 5.
Verdict Form, Lowe, 2015 WL 2058906 (No. 1: 13-CV-2425-AT). The court ultimately awarded each plaintiff USD 300,000. Order Denying in Part and Granting in Part Plaintiffs’ Motion for Injunctive Relief at 6, Lowe, 2015 WL 2058906 (No. 1:13-CV-2425-AT).
- 6.
42 U.S.C. § 2000ff–1.
- 7.
In accordance with administrative procedures required for discrimination claims, the plaintiffs first brought their complaint to the EEOC, which issued a Dismissal and Notice of Rights Letter that stated, “the EEOC is unable to conclude that the information obtained establishes violations of the statutes.” Lowe v Atlas Logistics Grp. Retail Servs. (Atlanta), LLC, 102 F. Supp. 3d 1360 (N.D. Ga. 2015), p. 1364.
- 8.
National Human Genome Project (2012).
- 9.
Slaughter (2013), pp. 41 and 46.
- 10.
Slaughter (2013), p. 50.
- 11.
Murray (1997), p. 62.
- 12.
- 13.
Murray (1997), pp. 64–66.
- 14.
Slaughter (2013), pp. 46–47.
- 15.
- 16.
Genetic Information Nondiscrimination Act of 2008, PL 110–233, 21 May 2008, 122 Stat 881.
- 17.
National Partnership for Women & Families (2004).
- 18.
Genetic Information Nondiscrimination Act of 2008, PL 110–233, 21 May 2008, 122 Stat 881; Slaughter (2013), p. 46.
- 19.
Genetic Information Nondiscrimination Act of 2008, PL 110–233, 21 May 2008, 122 Stat 881.
- 20.
Genetic Information Nondiscrimination Act of 2008, PL 110–233, 21 May 2008, 122 Stat 881.
- 21.
42 U.S.C. § 2000ff.
- 22.
42 U.S.C. § 2000ff.
- 23.
Dupras et al. (2018).
- 24.
The limited scope of GINA in the insurance setting is in part mitigated by state genetic nondiscrimination laws with more stringent standards than GINA, discussed in Sect. 2.2.
- 25.
Slaughter (2013), pp. 59–60.
- 26.
De Castro et al. (2016).
- 27.
- 28.
Slaughter (2013), pp. 59–60.
- 29.
Prince and Berkman (2012), p. 657.
- 30.
Klitzman (2010).
- 31.
42 U.S.C. § 2000ff–8: “[n]othing in this chapter shall be construed to (…) limit the rights or protections of an individual under any other Federal or State statute that provides equal or greater protection to an individual than the rights or protections provided for under this chapter.”
- 32.
Pub. L. No. 104–191, 110 Stat. 1936 (1996).
- 33.
Pub. L. 101–336, 104 Stat. 328; Pub. L. 110–325, 122 Stat. 3554. See also Rothstein et al. (2015), p. 526.
- 34.
Table of State Statutes Related to Genomics (2018).
- 35.
Genome Statute and Legislation Database Search: Health Insurance Nondiscrimination (2018). See e.g. ARS § 20-2301 ff (“A genetic condition is not a preexisting condition in the absence of a diagnosis of the condition related to the genetic information and shall not result in a preexisting condition limitation or preexisting condition exclusion.”); 215 ILCS 97/20 (“Genetic information shall not be treated as a [preexisting condition] in the absence of a diagnosis of the condition related to such information.”); ORS § 746.135 (“A person may not use genetic information to reject, deny, limit, cancel, refuse to renew, increase the rates of, affect the terms and conditions of or otherwise affect any policy for hospital or medical expenses (…). A person may not use genetic information about a blood relative to reject, deny, limit, cancel, refuse to renew, increase the rates of, affect the terms and conditions of or otherwise affect any policy of insurance.”).
- 36.
Genome Statute and Legislation Database Search: Health Insurance Nondiscrimination (2018).
- 37.
Genome Statute and Legislation Database Search: Health Insurance Nondiscrimination (2018).
- 38.
This division was codified in the McCarran-Ferguson Act in 1945 and has not been significantly altered since. See National Association of Insurance Commissioners (2019).
- 39.
ARS § 20-448.
- 40.
ARS § 20-448.
- 41.
Cal. Insurance Code § 10146 ff.
- 42.
Cal. Insurance Code § 10140 ff.
- 43.
Genome Statute and Legislation Database Search: Other Lines of Insurance Nondiscrimination (2018).
- 44.
CRS § 10-3-1104.7.
- 45.
IC § 41-1313.
- 46.
ORS § 746.135.
- 47.
VSA 8 § 4724; 18 V.S.A. § 9334.
- 48.
Genome Statute and Legislation Database Search: Privacy (2018). See e.g. FS § 760.40 (“DNA analysis may be performed only with the informed consent of the person to be tested, and the results of such DNA analysis, whether held by a public or private entity, are the exclusive property of the person tested, are confidential, and may not be disclosed without the consent of the person tested.”); NYCL (CVR) 79-l (“No person shall perform a genetic test on a biological sample taken from an individual without the prior written informed consent of such individual (…). Any further disclosure of genetic test results to persons or organizations not named on the informed consent shall require the further informed consent of the subject of the test.”).
- 49.
Genome Statute and Legislation Database Search: Privacy (2018).
- 50.
Rothstein (1997a), p. 288.
- 51.
Rothstein (1997a), p. 288.
- 52.
Rothstein (1997a), p. 288.
- 53.
Slaughter (2008).
- 54.
See Norman–Bloodsaw v Lawrence Berkeley Laboratory, 135 F.3d 1260 (9th Cir. 1998).
- 55.
Norman–Bloodsaw v Lawrence Berkeley Laboratory, 135 F.3d 1260 (9th Cir. 1998), p. 1265.
- 56.
Norman–Bloodsaw v Lawrence Berkeley Laboratory, 135 F.3d 1260 (9th Cir. 1998), p. 1269.
- 57.
U.S. Equal Employment Opportunity Commission (2002).
- 58.
Schulte and Lomax (2003).
- 59.
U.S. Equal Employment Opportunity Commission (2001).
- 60.
Because state statutes vary in the protections they offer and there are no high-profile cases that have been brought under state law, this analysis focuses on federal genetic discrimination claims. Given how few claims make it to court, the jury verdict in the case of the devious defecator is particularly notable.
- 61.
EEOC conventions refer to employee reports of discrimination as “charges,” but we will refer to them as complaints in order to use consistent language throughout different sections.
- 62.
U.S. Equal Employment Opportunity Commission (2018a).
- 63.
U.S. Equal Employment Opportunity Commission (2018b).
- 64.
U.S. Equal Employment Opportunity Commission (2018b).
- 65.
U.S. Equal Employment Opportunity Commission (2018c).
- 66.
Rothstein et al. (2015), pp. 552–554.
- 67.
Rothstein et al. (2015), pp. 552–554. Recent searches performed by the authors returned results consistent with these findings. In many instances the plaintiff alleged discrimination based on disability or race but included GINA as a basis for their suit.
- 68.
- 69.
U.S. Equal Employment Opportunity Commission (2016a).
- 70.
U.S. Equal Employment Opportunity Commission (2014a).
- 71.
No. 3:13-CV-222, 2015 WL 914440 (S.D. Ohio 3 March 2015) p ∗1.
- 72.
No. 3:13-CV-222, 2015 WL 914440 (S.D. Ohio 3 March 2015) p ∗11.
- 73.
U.S. Equal Employment Opportunity Commission (2017).
- 74.
U.S. Equal Employment Opportunity Commission (2017).
- 75.
Genetic Information Nondiscrimination Act, 29 CFR § 1635 (2016).
- 76.
Genetic Information Nondiscrimination Act, 29 CFR § 1635 (2016).
- 77.
See AARP v United States Equal Employment Opportunity Comm’n, 267 F.Supp.3d 14 (D.D.C. 2017).
- 78.
AARP v United States Equal Employment Opportunity Comm’n, 267 F.Supp.3d 14 (D.D.C. 2017), p. 34.
- 79.
AARP v United States Equal Employment Opportunity Comm’n, 267 F.Supp.3d 14 (D.D.C. 2017), p. 29.
- 80.
AARP v United States Equal Employment Opportunity Comm’n, 292 F.Supp.3d 238 (D.D.C. 2017).
- 81.
- 82.
Prince (2017), pp. 630–633.
- 83.
- 84.
- 85.
Rawls (1971).
- 86.
Rothstein and Anderlik (2001), p. 356.
- 87.
Gaulding (1995), pp. 1658–1660.
- 88.
- 89.
- 90.
- 91.
One study found that patients who learn that they have a high risk of developing Alzheimer’s disease are more likely to purchase long-term care insurance. See Taylor et al. (2010).
- 92.
Farr (2016).
- 93.
- 94.
Joly et al. (2013).
- 95.
Joly et al. (2013).
- 96.
Joly et al. (2013), pp. 5–8.
- 97.
Joly et al. (2013), pp. 10–11.
- 98.
Joly et al. (2013), pp. 10–11.
- 99.
Pollitz et al. (2007), p. 350.
- 100.
Pollitz et al. (2007), p. 350.
- 101.
Pollitz et al. (2007), p. 350.
- 102.
- 103.
Dupras (2018).
- 104.
- 105.
42 U.S.C. §2000ff (7).
- 106.
Prince and Berkman (2012), pp. 657–661.
- 107.
Prince (2017).
- 108.
Prince (2017).
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Feldman, E.A., Quick, E. (2020). Genetic Discrimination in the United States: What State and National Government Are Doing to Protect Personal Information. In: Khoury, L., Blackett, A., Vanhonnaeker, L. (eds) Genetic Testing and the Governance of Risk in the Contemporary Economy. Ius Comparatum - Global Studies in Comparative Law, vol 34. Springer, Cham. https://doi.org/10.1007/978-3-030-43699-5_15
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