Beyond “Genetic Discrimination”: Toward the Broader Harm of Geneticism

See Billings P.R. , “Discrimination as a Consequence of Genetic Testing,” American Journal of Human Genetics, 50 (1992): 476–82. See generally 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 (NIH Pub. No. 93-3686, May 10, 1993).

In the insurance domain alone, analysis includes Rothenberg K.H. , “Genetic Information and Health Insurance: State Legislative Approaches,” Journal of Law, Medicine & Ethics, 23 (1995): 312–19; Hudson K.L. , “Genetic Discrimination and Health Insurance: An Urgent Need for Reform,” Science, 270 (1995): 391–93; Ad Hoc Committee on Genetic Testing/Insurance Issues, “Background Statement: Genetic Testing and Insurance,” American Journal of Human Genetics, 56 (1995): 327–31; Cushing T.H. , “Should There be Genetic Testing in Insurance Risk Classification?,” Defense Counsel Journal, Apr. (1993): 249–63; NIH-DOE Working Group, supra note 1; Ostrer H. , “Insurance and Genetic Testing: Where Are We Now?,” American Journal of Human Genetics, 52 (1993): 565–77; O'Hara S. , “The Use of Genetic Testing in the Health Insurance Industry: The Creation of a ‘Biological Underclass’,” Southwestern University Law Review, 22 (1993): 1211–28; Murray T.H. , “Genetics and the Moral Mission of Health Insurance,” Hastings Center Report, 22, no. 6 (1992): 12–17; Obinata N. , “Genetic Screening and Insurance: Too Valuable an Underwriting Tool to be Banned from the System,” Computer & High Technology Law Journal, 8 (1992): 145–67; Gostin L. , “Genetic Discrimination: The Use of Genetically Based Diagnostic and Prognostic Tests by Employers and Insurers,” American Journal of Law & Medicine, XVII (1991): 109–44; Lowe R. , “Genetic Testing and Insurance: Apocalypse Now?,” Drake Law Review, 40 (1991): 507–32; Pokorski R. , “Genetic Screening and the Insurance Industry,” Yale journal of Biology and Medicine, 64 (1991): 53–57; and Miller J.M. , Comment, “Genetic Testing and Insurance Classification: National Action Can Prevent Discrimination Based on the ‘Luck of the Genetic Draw’,” Dickinson Law Review, 93 (1989): 729–57.

See, for example, Epstein R.A. , “The Legal Regulation of Genetic Discrimination: Old Responses to New Technology,” Boston University Law Review, 74 (1994): 1–23; Smith G.P. II Burns T.J. , “Genetic Determinism or Genetic Discrimination?,” Journal of Contemporary Health Law and Policy, 11 (1994): 23–61; NIH-DOE Working Group, supra note 1, at 9; Billings , supra note 1; Rothstein M.A. , “Genetic Discrimination in Employment and the Americans with Disabilities Act,” Houston Law Review, 29 (1992): 23–84; and Gostin , supra note 2. Dan Brock acknowledges that there are different understandings of “equality,” but he focuses on a different question than I: “whether equality of opportunity can be fully realized despite … [differences] in … genetically based cognitive ability.” Brock D.W. , “The Human Genome Project and Human Identity,” Houston Law Review, 29 (1992): At 8, 11.

I focus on writing on race and gender rather than on disability because of the far more developed discussion of antidiscrimination theory in work on race and gender. However, for attention to equality theory and disability, see, for example, Parmet WE , “Discrimination and Disability: The Challenges of the ADA,” Law, Medicine & Health Care, 18 (1990): 331–44.

See Roberts D.E. , “The Genetic Tie,” University of Chicago Law Review, 62 (1995): 209–73.

See, for example, id.; Asch A. Geller G. , “Feminism, Bioethics, and Genetics,” in Wolf S.M. , ed., Feminism & Bioethics: Beyond Reproduction (New York: Oxford University Press, 1996): 318–50.

See, for example, Roberts , supra note 5, at 211 n.8 (“The concept of race—like the meaning of the genetic tie—is a cultural artifact.”). See also Fausto-Sterling A. , Myths of Gender: Biological Theories about Women and Men (New York: Basic Books, 1985).

See Dreyfuss R. Nelkin D. , “The Jurisprudence of Genetics,” Vanderbilt Law Review, 45 (1992): At 315–17 (comparing to race and gender); Lippman A. , “Prenatal Genetic Testing and Screening: Constructing Needs and Reinforcing Inequities,” American Journal of Law & Medicine, XVII (1991): 15–50; and Hubbard R. , The Politics of Women's Biology (New Brunswick: Rutgers University Press, 1990): 70–86.

See Minow M. , “Introduction: Finding Our Paradoxes, Affirming Our Beyond,” Harvard Civil Rights-Civil Liberties Law Review, 24 (1989): At 2–4, citing Frug M.J. , Feminist Histories (1987, unpublished manuscript).

Indeed, the doctrinal effort to develop law to restrict the use of genetic information by insurers can benefit from comparison to the law curbing the use of race and sex in insurance. On the latter body of law, see, for example, Austin R. , “The Insurance Classification Controversy,” University of Pennsylvania Law Review, 131 (1983): 517–83; and Brilmayer L. , “The Efficient Use of Group Averages as Nondiscrimination: A Rejoinder to Professor Benston,” University of Chicago Law Review, 50 (1983): 222–49.

In the domain of health insurance, there is growing agreement (as I discuss below) that antidiscrimination measures merely prohibiting insurers from using genetic test results will not prevent them from gleaning genetic information from the rest of the medical record. See Rothenberg , supra note 2; and NIH-DOE Working Group, supra note 1, at 8 (“much of the information in the [medical] record about risk factors, diseases, diagnostic tests and treatments will in fact reveal genetic information to the astute reader of that record”).

Nelkin Compare Lindee , supra note 11, at 2 (“In one sense the gene is a biological structure…. But it has also become a cultural icon…. The biological gene … has a cultural meaning independent of its precise biological properties.” (footnote omitted)).

See Cal. Health & Safety Code § 1374.7 (West Supp. 1995), and Cal. Ins. Code §§ 10123.3, 11512.95 (West Supp. 1995), all as amended by 1995 Cal. Leg. Serv. ch. 695 (West); Colo. Rev. Stat. § 10-3-1104.7 (1994); Ga. Code Ann. §§ 33-54-1 to −8 (Supp. 1995); Minn. Stat. § 72A.139 (Supp. 1995); N.H. Rev. Stat. Ann. ch. 141-H (1995); Ohio Rev. Code Ann. §§ 1742.42–.43, 3901.49, 3901.491, 3901.50, 3901.501 (Baldwin 1995); 1995 Or. Laws 680; and Wis. Stat. Ann. § 631.89 (West 1995). Bills have been introduced in other states. See, for example, 1995 Mass. H. 4485, 179th Gen. Ct., 1st Ann. Sess.; and 1995 Tex. H. 343, 74th Reg. Sess.

The Americans with Disabilities Act (ADA), 42 U.S.C.A. §§ 12101–213 (West 1995), has also been analyzed by these latter sources for its potential effects on insurers' use of genetic information. The ADA states that it does not prohibit underwriting or risk classification, but that underwriting cannot be used as a subterfuge for prohibited employment discrimination. See 42 U.S.C.A. § 12201(c). This has been interpreted to mean that an employer may not single out an individual for discriminatory treatment, but may structure an entire benefits plan using risk classifications. See, for example, Ostrer et al., supra note 2, at 573. However, the ADA says nothing specific about genetics. It clearly covers manifested disabilities, whether or not genetics has played an underlying role. As to ADA coverage of asymptomatic genetic susceptibilities, a March 1995 pronouncement by the Equal Employment Opportunity Commission clarified that they were included in the category of protected disabilities. Equal Employment Opportunity Commission, Compliance Manual, Vol. II: Definition of the Term “Disability” (1995): At § 902.8.

On the history, see Rothenberg , supra note 2; Hudson , supra note 2, at 392; and NIH-DOE Working Group, supra note 1, at 18.

See Md. Ann. Code art. 48A, § 223(b)(4) (1994); Cal. Health & Safety Code § 1374.7 (West 1990); and Cal. Ins. Code § 10123.3(a) (West 1993), § 11512.95(a) (West 1988).

See statutes supra note 16.

See Rothenberg , supra note 2; and Hudson , supra note 2.

Wis. Stat. § 631.89.

See supra note 13.

See Rothenberg , supra note 2; Hudson , supra note 2; and NIH-DOE Working Group, supra note 1.

Hudson , supra note 2, at 392. Some of the statutes indicate as much. See, for example, Colo. Rev. Stat. § 10-3-1104.7(2)(b) (“‘Genetic testing’ includes only such tests as are direct measures of … [genetic] alterations rather than indirect manifestations thereof.”).

S. 1416, 104th Cong., 1st Sess. § 2(b)(3) (1995).

Id. § 6(a).

Id. § 3(5).

Id. § 3(4).

H.R. 2690, 104th Cong., 1st Sess. (1995).

H.R. 2748, 104th Cong., 1st Sess. § 2(a) (1995). As is similar to the prior two bills, “genetic information” is defined as “information about genes, gene products, or inherited characteristics.” Id. § 2(e)(3). “Genetic services” are then defined as “health services to obtain, assess, and interpret genetic information for diagnostic and therapeutic purposes, and for genetic education and counseling.” Id. § 2(e)(4).

NIH-DOE Working Group, supra note 1, at 8.

Billings , supra note 1, at 477.

See, for example, Murray , supra note 2, at 12; and Kass N.E. , “Insurance for the Insurers: The Use of Genetic Tests,” Hastings Center Report, 22, no. 6 (1992): 6–11.

Murray , supra note 2, at 12.

As Nancy Kass argues, “The greatest protection for those with a genetic predisposition … would be to return to a community-rated system.” Kass , supra note 33, at 10.

See supra note 4.

See, for example, Minow M. , “The Supreme Court 1986 Term, Foreword: Justice Engendered,” Harvard Law Review, 101 (1987): At 38–45 (on “The Unstated Norm”).

Finley , supra note 4, at 1148.

Id. at 1143.

Id. at 1120.

See, for example, Crenshaw (1988), supra note 4, at 1370–74; compare Roberts , supra note 5, at 211 n.8 (race as “a cultural artifact”).

Brock Compare , supra note 3, at 18–22 (speculating on the challenges that genetic therapy for enhancement may pose to our concept of the “normal”).

See President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Screening and Counseling for Genetic Conditions (Washington, D.C.: U.S. Government Printing Office, 1983): App. B, at 111 (“Every human being inherits about six or seven deleterious mutations that under certain circumstances can cause serious illness.”).

See O'Hara , supra note 2; and Billings , supra note 1, at 479 (“a new social class”).

See Rothenberg , supra note 2.

See Freeman A. , “Antidiscrimination Law: The View from 1989,” in Kairys D. , ed., The Politics of Law: A Progressive Critique (New York: Pantheon, rev. ed., 1982): 121–50.

Becker M.E. , “Prince Charming: Abstract Equality,” Supreme Court Review (1987): At 212.

See, for example, id. at 214–24.

See Krieger L.H. , “The Content of Our Categories: A Cognitive Bias Approach to Discrimination and Equal Employment Opportunity,” Stanford Law Review, 47 (1995): 1161–248.

See Lawrence , supra note 4, at 322 (footnotes omitted).

Id. at 323–25.

Id. at 324.

Minow , supra note 38, at 15, 64.

Id. (footnote omitted).

On the history of eugenics, see, for example, Kevles D.J. , In the Name of Eugenics: Genetics and the Uses of Human Heredity (New York: Knopf, 1985).

See Buck v. Bell, 274 U.S. 200, 207 (1927).

Nelkin Lindee , supra note 11, at 171.

Id. at 174.

Crenshaw (1989), supra note 4, at 140.

See id. at 166–67.

Roberts , supra note 5, at 223.

Id. at 210.

Id. at 223.

See, for example, Proctor R.N. , Racial Hygiene: Medicine Under the Nazis (Cambridge: Harvard University Press, 1988); and Lifton R.J. , The Nazi Doctors: Medical Killing and the Psychology of Genocide (New York: Basic Books, 1986).

See supra note 61 and accompanying text.

See Rothenberg , supra note 2; Hudson , supra note 1, at 392; and NIH-DOE Working Group, supra note 1, at 8, 18.

Colker , supra note 4, at 1007 (footnote omitted).

Id. at 1007–08 (footnote omitted).

MacKinnon , supra note 4, at 40.

Id. at 42.

Abby Lippman also cites past uses of “geneticizing” (“to refer to the tendency to label as ‘genetic’ diseases and disorders” with “‘scant or no genetic evidence”’) and “‘construction’ of genetic disease.” Lippman , supra note 8, at 18 n.16, citing Edlin G.J. , “Inappropriate Use of Genetic Terminology in Medical Research: A Public Health Issue,” Perspectives in Biology and Medicine, 31 (1987): At 48; and Yoxen E.J. , “Constructing Genetic Diseases,” in Wright P. Treacher A. , eds., The Problem of Medical Knowledge: Examining the Social Construction of Medicine (Edinburgh: Edinburgh University Press, 1982): 144–61. All of this is in defense of her choice of “geneticization” to describe a process that goes further. But none of these terms either embraces the range of phenomena I capture under “geneticism” or explicitly establishes the relationship to “racism” and “sexism.”

MacKinnon's critique of the term “sexism” might be construed to cast doubt on my suggestion of geneticism. However, her complaint is that “sexism” suggests the problem is merely bad treatment of women, rather than a system of dominance that seizes on gender as a means of subordination. See id. My article meets that complaint by using “geneticism” more comprehensively to embrace a system of genetic disadvantage based on supposed deviation from a fictive genetic norm.

See Lippman , supra note 8, at 18–19 and n.16.

See Dreyfuss Nelkin , supra note 8, at 316–21. “Genetic essentialism posits that personal traits are predictable and permanent, determined at conception, ‘hard-wired’ into the human constitution…. [T]his ideology minimizes the importance of social context.” Id. at 320–21. Nelkin and Lindee also develop the idea of “genetic essentialism” in the DNA Mystique, supra note 11, at 2, 149–68. “Genetic essentialism reduces the self to a molecular entity, equating human beings, in all their social, historical, and moral complexity, with their genes.” Id. at 2.

See, for example, Kevles D.J. , “Out of Eugenics: The Historical Politics of the Human Genome,” in Kevles D.J. Hood L. , eds., The Code of Codes: Scientific and Social Issues in the Human Genome Project (Cambridge: Harvard University Press, 1992): 3–36. For an analysis of the link between geneticism and racism, see Roberts , supra note 5.

I am grateful to Eric Juengst for raising the terminological concern that the analogue to “racists” and “sexists” cannot be “geneticists” (because we already use that to refer to certain professional specialists), and so requires a different term, perhaps “geneticizers.”