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

Published online by Cambridge University Press:  01 January 2021

Susan M. Wolf
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Extract

The current explosion of genetic knowledge and the rapid proliferation of genetic tests has rightly provoked concern that we are approaching a future in which people will be labeled and disadvantaged based on genetic information. Indeed, some have already suffered harm, including denial of health insurance. This concern has prompted an outpouring of analysis. Yet almost all of it approaches the problem of genetic disadvantage under the rubric of “genetic discrimination.”

This rubric is woefully inadequate to the task at hand. It ignores years of commentary on race and gender demonstrating the limits of antidiscrimination analysis as an analytic framework and corrective tool. Too much discussion of genetic disadvantage proceeds as if scholars of race and gender had not spent decades critiquing and developing antidiscrimination theory.

Indeed, there are multiple links among race, gender, and genetics. Dorothy Roberts has discussed the historical links between racism and genetics, while she and others have begun to map connections between gender and genetics.

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Article
Information
Journal of Law, Medicine & Ethics , Volume 23 , Issue 4 , Winter 1995 , pp. 345 - 353
Copyright
Copyright © American Society of Law, Medicine and Ethics 1995

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References

See Billings, P.R. et al., “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).Google Scholar
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. et al., “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. et al., “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.CrossRefGoogle Scholar
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, et al., 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.Google Scholar
See Roberts, D.E., “The Genetic Tie,” University of Chicago Law Review, 62 (1995): 209–73.CrossRefGoogle Scholar
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.Google Scholar
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).Google Scholar
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.Google Scholar
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).Google Scholar
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. et al., “The Efficient Use of Group Averages as Nondiscrimination: A Rejoinder to Professor Benston,” University of Chicago Law Review, 50 (1983): 222–49.CrossRefGoogle Scholar
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)).Google Scholar
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.);+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.>Google Scholar
On the history, see Rothenberg, , supra note 2; Hudson, et al., supra note 2, at 392; and NIH-DOE Working Group, supra note 1, at 18.Google Scholar
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).Google Scholar
See statutes supra note 16.Google Scholar
See Rothenberg, , supra note 2; and Hudson, et al., supra note 2.Google Scholar
Wis. Stat. § 631.89.Google Scholar
See supra note 13.Google Scholar
See Rothenberg, , supra note 2; Hudson, et al., supra note 2; and NIH-DOE Working Group, supra note 1.Google Scholar
Hudson, et al., 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.”).Google Scholar
S. 1416, 104th Cong., 1st Sess. § 2(b)(3) (1995).Google Scholar
Id. § 6(a).Google Scholar
Id. § 3(5).Google Scholar
Id. § 3(4).Google Scholar
H.R. 2690, 104th Cong., 1st Sess. (1995).Google Scholar
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).Google Scholar
NIH-DOE Working Group, supra note 1, at 8.Google Scholar
Id.Google Scholar
Billings, et al., supra note 1, at 477.Google Scholar
Id.Google Scholar
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.Google Scholar
Murray, , supra note 2, at 12.Google Scholar
Id.Google Scholar
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.Google Scholar
See supra note 4.Google Scholar
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”).Google Scholar
Finley, , supra note 4, at 1148.Google Scholar
Id. at 1143.Google Scholar
Id. at 1120.Google Scholar
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”).Google Scholar
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”).Google Scholar
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.”).Google Scholar
See O'Hara, , supra note 2; and Billings, et al., supra note 1, at 479 (“a new social class”).Google Scholar
See Rothenberg, , supra note 2.Google Scholar
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.Google Scholar
Becker, M.E., “Prince Charming: Abstract Equality,” Supreme Court Review (1987): At 212.CrossRefGoogle Scholar
See, for example, id. at 214–24.Google Scholar
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.CrossRefGoogle Scholar
See Lawrence, , supra note 4, at 322 (footnotes omitted).Google Scholar
Id. at 323–25.Google Scholar
Id. at 324.Google Scholar
Minow, , supra note 38, at 15, 64.Google Scholar
Id. (footnote omitted).Google Scholar
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).Google Scholar
See Buck v. Bell, 274 U.S. 200, 207 (1927).Google Scholar
Nelkin, Lindee, , supra note 11, at 171.Google Scholar
Id. at 174.Google Scholar
Crenshaw, (1989), supra note 4, at 140.Google Scholar
See id. at 166–67.Google Scholar
Roberts, , supra note 5, at 223.Google Scholar
Id. at 210.Google Scholar
Id. at 223.Google Scholar
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).Google Scholar
See supra note 61 and accompanying text.Google Scholar
See Rothenberg, , supra note 2; Hudson, et al., supra note 1, at 392; and NIH-DOE Working Group, supra note 1, at 8, 18.Google Scholar
Colker, , supra note 4, at 1007 (footnote omitted).Google Scholar
Id. at 1007–08 (footnote omitted).Google Scholar
MacKinnon, , supra note 4, at 40.Google Scholar
Id. at 42.Google Scholar
Id.Google Scholar
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.Google Scholar
See Lippman, , supra note 8, at 18–19 and n.16.Google Scholar
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.Google Scholar
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.Google Scholar
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.”Google Scholar

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