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What Makes Genetic Discrimination Exceptional?

Published online by Cambridge University Press:  06 January 2021

Deborah Hellman
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Extract

Recent advances in understanding the genetic basis of disease has inspired hope but also fear. While establishing a link between a person's genetic makeup and a propensity to disease may lead to better treatment, many scientists, physicians and genetic counselors also worry that it may lead to discrimination. Although access to health insurance is the primary concern, people also fear discrimination in life and disability insurance, employment and other contexts, such as child custody decisions or adoption. In response to this concern, many state legislatures have passed laws forbidding genetic discrimination. While most of these laws focus on health insurance, some also prohibit genetic discrimination in employment or in life or disability insurance coverage.

These laws have been the subject of both praise and criticism. Defenders of the laws see them as important and necessary, though arguably incomplete. Critics view them as unjustified and unwarranted. However, the question that dominates current literature is whether genetic discrimination is meaningfully different from discrimination on the basis of general health status; or as the debate is often framed, whether anti-discrimination laws ought to be genetic or generic.

Type
Research Article
Information
American Journal of Law & Medicine , Volume 29 , Issue 1 , March 2003 , pp. 77 - 116
Copyright
Copyright © American Society of Law, Medicine and Ethics and Boston University 2003

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Footnotes

†

Associate Professor, University of Maryland School of Law. B.A., Dartmouth College; M.A. in Philosophy, Columbia University; J.D., Harvard Law School.

References

1 Most of the fifty states have passed laws prohibiting genetic discrimination in health insurance and employment. For charts depicting states and their respective legislation, see both National Conference of State Legislatures (NCSL), State Genetic Discrimination in Health Insurance Laws, available at http://www.ncsl.org/programs/health/genetics/ndishlth.htm (Aug. 7, 2002), and NCSL, State Genetics Employment Laws, available at http://www.ncsl.org/programs/health/genetics/ndiscrim.htm (Aug. 8, 2002).

2 Forty-six of the fifty states have enacted laws prohibiting such genetic discrimination by insurers. NCSL, State Genetic Discrimination in Health Insurance Laws, supra note 1. Examples of insurer practices which are prohibited include: the use of genetic information for risk selection or risk classification purposes, the establishment of eligibility rules based on genetic information and the requirement of genetic tests. Id. Many states prohibit all of the above practices in individual and group policies; however, a small number of states prohibit certain practices in group policies only. Id.

3 Thirty-one of the fifty states have enacted laws prohibiting genetic discrimination in employment. NCSL, State Genetic Discrimination in Health Insurance Laws, supra note 1. As with the prohibitions in health insurance, the scope of what is impermissible in the employment context varies widely. See id. (noting that examples of prohibitions include requesting or requiring genetic information, performing genetic tests and obtaining genetic test results). All states that have such legislation prohibit discrimination based on the results of genetic tests, and most states prohibit employers from accessing such information or conducting their own genetic tests. Id.

4 Seventeen states curtail discrimination in life or disability insurance coverage. NCSL, State Genetic Nondiscrimination Laws in Life, Disability, and Long-term Care Insurance, available at http://www.ncsl.org/programs/health/genetics/ndislife.htm (Oct. 14, 2002). These states’ laws do not expressly prohibit, but rather restrict insurer use of genetic information in some manner. See id. For example, four states prohibit discrimination in life and disability insurance without actuarial justification. Id.

5 See, e.g., Lemmens, Trudo, Selective Justice, Genetic Discrimination, and Insurance: Should We Single Out Genes in Our Laws?, 45 MCGILL L.J. 347, 383 (2000)Google Scholar (arguing that access to health insurance should not depend on health status, whether of genetic or non-genetic origin).

6 See, e.g., Diver, Colin S. & Cohen, Jane Maslow, Genophobia: What is Wrong with Genetic Discrimination?, 149 U. PA. L. REV. 1439, 1445-446 (2001)Google Scholar (arguing that laws banning genetic discrimination are unjust both because they will “cause significant welfare losses due to the distortion of allocative efficiency” and because they “selectively favor[] a single type of moral ‘bad luck,’ while concealing both the extent and the form of its intended cross-subsidies”); Richard Epstein, A., The Legal Regulation of Genetic Discrimination: Old Responses to New Technology, 74 B.U. L. REV. 1, 18 (1994)Google Scholar (stating that “the prohibition against genetic discrimination should be seen for what it is— an elaborate set of cross-subsidies that reduces the total level of social wealth as it transfers wealth between parties”); Pokorski, Robert J., Use of Genetic Information by Private Insurers, in JUSTICE AND THE HUMAN GENOME PROJECT 91, 97 (Murphy, Timothy F. & Lappé, Marc A. eds., 1994)Google Scholar (arguing that prohibiting genetic discrimination by insurers is unjust because “[t]his mandated subsidization of unfavorable risks by good risks would be tantamount to an indirect governmental tax levied solely against insurance policyholders and stockholders”).

7 Rothstein, Mark A. & Anderlik, Mary R., What Is Genetic Discrimination, and When and How Can It Be Prevented?, 3 GENETICS MED. 354, 357 (2001)Google Scholar (arguing that laws specially targeting genetic discrimination as distinct from health status-based discrimination are both unjust and impratical); Suter, Sonia M., The Allure and Peril of Genetic Exceptionalism: Do We Need Special Genetics Legislation?, 79 WASH. U. L.Q. 669 (2001)Google Scholar (claiming that genetic information is not so qualitatively different from other medical information that it warrants special legislation and that law makers should take a more comprehensive approach to health-status discrimination); Wolf, Susan M., Beyond “Genetic Discrimination”: Toward the Broader Harm of Geneticism, 23 J.L. MED. & ETHICS 345, 347 (1995)Google Scholar (arguing that laws forbidding genetic discrimination are overly narrow because the “social practice that needs to be changed is broader than health insurers’ accurate use of genetic tests and information”).

8 See Cushing, T.H., Should There be Genetic Testing in Insurance Risk Classification?, 60 DEF. COUNS. J. 249, 253 (1993)Google Scholar (noting that insurers underwrite policies in accordance with factors known to effect life expectancy and “[f]rom the health and life insurers’ point of view, genetic testing [is] useful in assessing the risks they will underwrite.”).

9 Hellman, Deborah, The Expressive Dimension of Equal Protection, 85 MINN. L. REV. 1 (2000)Google Scholar [hereinafter Hellman, Expressive Dimension] (arguing that a state law or policy violates the Equal Protection clause if it expresses a meaning that conflicts with the government's obligation to treat each person with equal concern and respect); Hellman, Deborah, Judging by Appearances: Professional Ethics, Expressive Government and the Moral Significance of How Things Seem, 60 MD. L. REV. 653 (2001)Google Scholar (examining whether there are non-consequentialist reasons to be concerned about the appearance of impropriety).

10 See PRENATAL TESTING AND DISABILITY RIGHTS (Erik Parens & Adrienne Ashe eds., 2000) [hereinafter PRENATAL TESTING].

11 Id.

12 See, e.g., Diver & Cohen, supra note 6, at 1451; Lemmens, supra note 5, at 368-69; Murray, Thomas H., Genetic Exceptionalism and “Future Diaries”: Is Genetic Information Different from other Medical Information?, in GENETIC SECRETS 60, 68-9 (1997)Google Scholar; Rothstein & Anderlik, supra note 7, at 357.

13 See, e.g., Greely, Henry T., Genotype Discrimination: The Complex Case For Some Legislative Protection, 149 U. PA. L. REV. 1483, 1495-497 (2001)Google Scholar, Lemmens, supra note 5, at 368; Rothenberg, Karen H., Genetic Information and Health Insurance: State Legislative Approaches, 23 J.L. MED. & ETHICS 312, 317 (1995)Google Scholar.

14 See, e.g., CAL. INS. CODE ANN. § 10123.3 (West 1993); COLO. REV. STAT. § 10-3-1104.7 (2002); GA. CODE ANN. § 33-54-1 (1996); 410 ILL. COMP. STAT. 513/10–513/45 (1997); MO. ANN. STAT. §§ 375.1300–375.1312 (West 2002); N.Y. INS. LAW § 2612 (McKinney 2000 & Supp. 2003); OR. REV. STAT. § 746.135 (2001); R.I. GEN. LAWS § 27-18-52 (2002); TENN. CODE ANN. § 56-7-2701 (2000).

15 MD. CODE ANN., INS. § 27-909(c)(1) (1997 & Supp. 2002).

16 Murray, supra note 12, at 68 (explaining that the task force could not find a clear distinction between genetic and non-genetic information because in most cases “the two-bucket theory [to wit, putting specific diseases or conditions in either a genetic or non-genetic ‘bucket’] was hopelessly inadequate”).

17 Greely, supra note 13, at 1502-503.

18 Id. at 1502.

19 Id. at 1502-503.

20 Id. at 1497.

21 Greely admits that the distinction may be complicated to implement as many genetic predispositions are manifest in the body in ways that are not harmful before they cause disease. Id. at 1503-504. To delineate which conditions count as discrimination on the basis of phenotype, and are therefore permitted, and which are discrimination on the basis of genotype, and are therefore prohibited, Greely proposes the concept of the “medically significant symptoms.” Id. at 1504. As I understand his proposal, if the phenotypic difference is medically significant as a symptom of the illness to come, then discrimination on the basis of that difference is permitted.

22 Paul R. Billings defines “genetic discrimination” as “discrimination against an individual or against members of that individual's family solely because of real or perceived differences from the normal genome of that individual. Genetic discrimination is distinguished from discrimination based on disabilities caused by altered genes by excluding, from the former category, those instances of discrimination against an individual who at the time of the discriminatory act was affected by the genetic disease.” Billings, Paul R. et al., Discrimination as a Consequence of Genetic Testing, 50 AM. J. HUM. GENETICS 476, 477 (1992)Google Scholar.

23 Greely, supra note 13, at 1503.

24 Geneticists use the term “penetrance” to describe this characteristic of a genetic disease. Sharp, Richard R., The Evolution of Predictive Genetic Testing: Deciphering Gene-Environment Interactions, 41 JURIMETRICS J. 145, 148 (2001)Google Scholar. If a genetic mutation is 100 percent penetrant, then all who carry that mutation will develop the disease if they live long enough to do so. NORMAN V. ROTHWELL, UNDERSTANDING GENETICS: A MOLECULAR APPROACH 63 (1993). Huntington's chorea is an example of a genetic disease that is nearly 100 percent penetrant. Id.

25 See supra note 3 and accompanying text.

26 The American Society of Human Genetics (ASHG), together with the American College of Medical Genetics (ACMG), report that there is anecdotal evidence that prospective adoptive parents and adoption agencies are requesting “a wider range of genetic tests before, during, or immediately after the adoption process.” ASHG/ACMG Statement, Genetic Testing in Adoption, 66 AM. J. HUM. GENETICS 761, 761 (2000). In response, the two groups have issued proposed guidelines to govern when genetic tests are performed on newborns and children during the adoption process. Id. In brief, the ASHG and ACMG:

support genetic testing in the adoption process if it is (1) consistent with preventive and diagnostic tests performed on all children of a similar age, (2) generally limited to testing for medical conditions that manifest themselves during childhood or for which preventive measures or therapies may be undertaken during childhood, and (3) not used to detect genetic variations within the normal range. Id. at 766.

27 Parents can avoid the birth of a child with certain genetic abnormalities in two ways. The first method combines genetic testing with selective abortion. See Cynthia Powell, The Current State of Prenatal Genetic Testing in the United States, in PRENATAL TESTING, supra note 10, at 47-48. The pregnant woman would undergo amniocentesis at approximately sixteen to eighteen weeks gestation to test the developing fetus for specific genetic abnormalities. Id. The second method, called “preimplantation genetic diagnosis,” uses in-vitro fertilization. See Roberts, Jason Christopher, Customizing Conception: A Survey of Preimplantation Genetic Diagnosis and the Resulting Social, Ethical, and Legal Dilemmas, 2002 DUKE L & TECH. REV. 12, 12 (2002)Google Scholar. The fertilized embryos are then tested for the genetic abnormality and only ones that are free of the relevant mutation are transferred to the womb of the mother. Id. There are variations on these two methods but these two procedures capture most of the ways that genetic testing is used in the prenatal context.

28 Coined by Thomas H. Murray, the term “genetic exceptionalism” refers to the view that genetic information is different from other health information in ways that warrant different treatment. Murray, supra note 12, at 61.

29 Gostin, Larry, Genetic Discrimination: The Use of Genetically Based Diagnostic and Prognostic Tests by Employers and Insurers, 17 AM. J.L. & MED. 109, 113-15 (1991)Google Scholar (arguing that discrimination on the basis of genetic information is likely to be irrational because the degree of uncertainty surrounding how predictive of future illness a genetic mutation may be); Greely, supra note 13, at 1500 (offering the opportunity “to protect those people who are at risk for irrational and ill-informed genetic discrimination” as one reason to support legislation prohibiting genetic discrimination in health insurance).

30 KENNETH S. ABRAHAM, DISTRIBUTING RISK: INSURANCE, LEGAL THEORY, AND PUBLIC POLICY 93 (1986).

31 As Henry Greely and others have pointed out, while a small number of genetic mutations are highly penetrant, the scientific community knew of their penetrance well before the recent boom in genetic knowledge. Their high penetrance made them readily observable in family medical histories before scientists were to identify the specific gene mutation responsible. Therefore, what scientists are likely to discover in the future will be cases where the genetic component of the disease is much less significant. Greely, supra note 13, at 1487 (explaining that “the logic of the discovery process means that the strong associations [between gene mutations and disease] are likely to be rare; the less-rare associations are likely to be weak”).

32 Id.

33 The most common means of state regulation of actuarially supported insurance rates are “standard valuation laws,” under which all insurers must submit to the state insurance commissioner actuarial data supporting their insurance premiums. For example, the State of Alabama's Insurance Code requires that:

Every life insurer doing business in this state shall annually submit the opinion of a qualified actuary as to whether the reserves and related actuarial items held in support of the policies and contracts specified by the commissioner by regulation are computed appropriately, are based on assumptions which satisfy contractual provisions, are consistent with prior reported amounts, and comply with applicable laws of this state. The commissioner, by regulation, shall define the specifics of this opinion and add any other items deemed to be necessary to its scope.

ALA. CODE § 27-36-7 (1986); see also ALASKA STAT. § 21.18.110 (2002); ARK. CODE ANN. §§ 23-84-101 to 23-84-113 (Lexis 1999); CAL. INS. CODE § 10489.1-10489.10 (West 1988 & Supp. 2003); CONN. GEN. STAT. ANN. § 38a-78 (West 2000); DEL. CODE ANN. tit. 18, § 1113 (1999); D.C. CODE ANN. § 31-4701 (2001); FLA. STAT. ANN. § 625.121 (West 1996 & Supp. 2003); GA. CODE ANN. § 33-10-13 (2000); HAW. REV. STAT. ANN. § 431:5-307 (Michie 2001); IDAHO CODE § 41-612 (Michie 1998 & Supp. 2002); 215 ILL. COMP. STAT. ANN. 5/223 (2000); IOWA CODE ANN. § 508.36 (West 1998 & Supp. 2002); KAN. STAT. ANN. § 40-409 (2001); KY. REV. STAT. ANN. § 304.6-120 (Michie 1997); ME. REV. STAT. ANN. tit. 24-A, §§ 951–958-A (2000); MD. CODE ANN., INS. §§ 5-301–5-312 (1997 & Supp. 2002); MINN. STAT. ANN. § 61A.25 (West 1996 & Supp. 2003); MISS. CODE ANN. § 83-7-23 (1999); MONT. CODE ANN. §§ 33-2-521–33-2-529 (2000); NEV. REV. STAT. ANN. § 688A.325 (2001); N.H. REV. STAT. ANN. § 410 (1998); N.J. STAT. ANN. § 17:19-8 (West 2001 & Supp. 2002); N.M. STAT. ANN. § 59A-8-5 (Michie 2000); N.C. GEN. STAT. § 58-58-50 (2001); N.D. CENT. CODE §§ 26.1-35-01 to 26.1-35-10 (2001); OKLA. STAT. ANN. tit. 36, § 1510 (West 2002); OR. REV. STAT. §§ 733.300 to 733.322 (2001); R.I. GEN. LAWS §§ 27-4.5-1 to 27-4.5-12 (2002); TENN. CODE ANN. § 56-1-403 (2000); TEX. INS. CODE ANN. § 3.28 (Vernon 2002); UTAH CODE ANN. §§ 31A-17-501 to 31A-17-513 (2002); VT. STAT. ANN. tit. 8, §§ 3781–3789 (2001); WASH. REV. CODE ANN. § 48.74 (West 1999); W. VA. CODE ANN. § 33-7-9 (Michie 2000 & Supp. 2002); WIS. STAT. ANN. § 623.06 (West 1995 & Supp. 2002).

34 Compare Frontiero v. Richardson, 411 U.S. 677, 690-91 (1973) (striking down a federal law that provided male married armed service members an automatic dependency allowance, but which required female married members to prove the dependency of their spouses) with Reed v. Reed, 404 U.S. 71, 76 (1971) (striking down an Idaho law that gave a preference to men over women as estate administrators on the ground that it was “arbitrary”).

35 Richard Epstein is the most forceful advocate of this position. See EPSTEIN, RICHARD, FORBIDDEN GROUNDS: THE CASE AGAINST EMPLOYMENT DISCRIMINATION LAWS 42 (1992)Google Scholar (arguing that “there are natural curbs against irrational contracting behavior” and thus that “the legal system normally has no need to superintend the wisdom of bargains”); see also Epstein, supra note 6.

36 Greely, supra note 13, at 1483 (contending that “[g]enetic discrimination is a much greater threat in people's fears than it is in reality, today or in the foreseeable future, for both scientific and social reasons”); Rothstein & Anderlik, supra note 7, at 357 (pointing out that “[t]o date, the evidence of genetic discrimination has been anecdotal (Billings et al. 1992; Geller et al. 1996) or derived from studies with methodological weaknesses such as reliance on self-report (Lapham et al. 1996)” and that, therefore, “a recent study combining in-person interviews with health insurers and a direct market test has attracted considerable attention (Hall and Rich 2000)” because it found that “a person with a serious genetic condition but asymptomatic for disease would have little or no difficulty obtaining individual health insurance under current market conditions”). But see Virginia Lapham, E. et al., Genetic Discrimination: Perspectives of Consumers, 274 SCIENCE 621, 623 (1996)Google Scholar (finding that “43% of the respondents reported that they or members of their family have experienced genetic discrimination in one or more of the three areas” of health insurance, life insurance and employment). This study is based on the type of statistical self-reporting that Rothstein and Anderlik critique. See Rothstein & Anderlik, supra note 7, at 357. Lapham and her co-authors define genetic discrimination to include cases in which the individual discriminated against is already symptomatic for the disease, whereas Hall and Rich looked for evidence of cases in which discrimination occurred when the person has a genetic predisposition but no manifest disease. Compare Virginia Lapham, E. et al., Genetic Discrimination: Perspectives of Consumers, 274 SCIENCE 621 (1996)Google Scholar with Hall, Mark A. & Rich, Stephen S., The Impact on Genetic Discrimination of Laws Restricting Health Insurers’ Use of Genetic Information, 66 AM. J. HEALTH GENETICS 293 (2000)Google Scholar; see also infra note 70-75. This definitional difference may, in part, explain the wide disparity of results.

37 See, e.g., CHEMERINSKY, ERWIN. CONSTITUTIONAL LAW: PRINCIPLES & POLICIES 551 (1997)Google Scholar (explaining that one of the three central reasons that the Supreme Court scrutinizes the use of some legal classifications closely is the fact that the trait at issue is immutable). As Chemerinsky articulates the moral intuition behind this strand of law, “[i]t is unfair to discriminate against people for a characteristic that is acquired at birth and cannot be changed.” Id.

38 See Gostin, supra note 29, at 110-11 (arguing that because genetic conditions are “neither subject to the person's control, nor the result of willful behavior,” genetic discrimination ought to be prohibited).

39 For an interesting examination of the complexities of the merit principle, see Lichtenberg, Judith & Luban, David, The Merits of Merit, 17 REP. FROM INST. FOR PHIL. & PUB. POL’Y 21 (1997)Google Scholar.

40 Cf. Hellman, Deborah S., Is Actuarially Fair Insurance Rating Actually Fair?: A Case Study In Insuring Battered Women, 32 HARV. C.R.-C.L. L. REV. 355, 364-69 (1997)Google Scholar (arguing the ability to control one's own health is not in itself enough to justify responsibility for it).

41 Greely, supra note 13, at 1500.

42 Id.

43 Lemmens, supra note 5, at 373 (reporting that “in the U.S., from 8% to 10% of African- Americans are carriers of the sickle-cell trait, and 1 in 400 to 600 has sickle-cell anaemia”).

44 Id. (citing Hodgson, S.V. et al., Risk Factors for Detecting Germline BRCA1 and BRCA2 Founder Mutations in Ashkenazi Jewish Women with Breast or Ovarian Cancer, 36 J. MED. GENETICS 369 (1999)Google Scholar).

45 See Dolgin, Janet L., Personhood, Discrimination and the New Genetics, 66 BROOK. L. REV. 755, 786-87 (2000-01)Google Scholar (arguing that “[e]mployers, insurers, and others may arrive at assumptions about an individual's genome from information regarding the genome of the individual's ethnic group” and that “[s]uch discrimination may be especially harmful when aimed at individuals belonging to groups that have historically been singled out for racist treatment on the basis of somatic characteristics”); Gostin, supra note 29, at 111 (claiming that the “fact that genetic diseases are sometimes closely associated with discrete ethnic or racial groups such as African Americans, Ashkenazi Jews or Armenians compounds the potential for invidious discrimination”).

46 For that reason, Ashkenazi Jews, for example, provide a fertile population for study. Dolgin, supra note 45, at 789-90.

47 Lemmens, supra note 5, at 374.

48 See, e.g., Lemmens, supra note 5, at 411 (arguing for some regulation of genetic discrimination in Canada on the grounds that “[t]here can be circumstances in which genetic discrimination has such a symbolic, stigmatizing character, that allowing it to be used for insurance purposes would be considered inappropriate per se” (emphasis added)). Lemmens’ treatment of symbolic as synonymous with stigmatizing implies that he is characterizing the idea of stigma as expressive harm. See id. This implication, however, is not clear.

49 347 U.S. 483 (1954).

50 Id. at 494.

51 Hellman, Expressive Dimension, supra note 9, at 10.

52 See infra notes 53-58 and accompanying text.

53 Wolf, supra note 7, at 350.

54 Id. at 350.

55 Id. (arguing for a “reinterpretation of ‘genetic discrimination’ as something bigger, the use of genetic notions to create and reinforce power relationships in which some dominate and others are subordinated”).

56 Id. at 347.

57 Ronald Dworkin offers this principle of equal concern as the moral principle underlying the Equal Protection Clause. Dworkin, Ronald, In Defense of Equality, 1 SOC. PHIL. & POL’Y 24, 24 (1983)CrossRefGoogle Scholar (positing that equal protection requires that “the interests of the members of the community matter, and matter equally”). I build on Dworkin's principle in my article on the expressive dimension of Equal Protection. Hellman, Expressive Dimension, supra note 9, at 7-8.

58 See generally AMARTYA SEN, INEQUALITY REEXAMINED (1992).

59 Cf. Hellman, Expressive Dimension, supra note 9.

60 Several commentators offer this argument in support of legislation prohibiting genetic discrimination. See, e.g., Gostin, supra note 29, at 113 (emphasizing that “if fear of discrimination deters people from genetic diagnosis and prognosis, renders them less willing to confide in physicians and genetic counselors, and makes them more concerned with the loss of a job or insurance than with care and treatment, the benefits of genetic data collection will not be fully achieved”); Greely, supra note 13, at 1501 (arguing that legislation is warranted in part because “people who are afraid of genetic discrimination are afraid to take genetic tests that offer the possibility of improving their health”).

61 Greely, supra note 13, at 1501 (stressing the fact that reducing people's fears of discrimination is important because “research in human genetics has enormous potential for alleviating human suffering”); Lemmens, supra note 5, at 364 (arguing that studies “have indicated that women at risk for breast cancer because of family history often refuse to undergo testing out of fear of the impact of testing on insurability”).

62 See infra notes 63-98 and accompanying text.

63 Whether individuals will in fact change their behavior in response to genetic information is uncertain. See Marteau, Theresa M. & Lerman, Caryn, Genetic Risk and Behavioural Change, 322 BRIT. MED. J. 1056, 1058 (2001)Google Scholar (finding that “current evidence suggests that providing people with DNA derived information about risks to their health does not increase motivation to change behaviour beyond that achieved with non-genetic information”).

64 See Lapham et al., supra note 36, at 622 (reporting that in a study surveying the experiences of people with family histories of genetic disease that “[t]he large majority (83%) of respondents said they would not want their insurers to know if they were tested and found to be at high risk for a genetic disorder”). In addition, Lapham and her co-authors found that “fear of genetic discrimination … resulted in 9% of the respondents or a family member refusing to be tested for a genetic condition.” Id.; but see Jacobson, P.B. et al., Decision-Making about Genetic Testing Among Women at Familial Risk for Breast Cancer, 59 PSYCHOSOMATIC MED. 459, 465 (1997)Google Scholar (finding that “the only disadvantages perceived by a majority of women were that learning their genetic carrier status would increase their concerns about developing breast cancer and cause them to worry more about other family members who could be carriers”). Interestingly, when people with a family medical history of a particular disease are considering genetic testing, genetic discrimination may not be of foremost concern because some information about genetic risk (albeit less precise) is already present in the form of that family medical history. Therefore, other issues take precedence in the decisionmaking.

65 Greely, supra note 13, at 1501.

66 Id. at 1504 (describing the scope of legislation forbidding genetic discrimination that he favors as “limited to employment questions and to health coverage (whether through traditional health insurance, HMOs, or a self-funded employee health benefit plan)”).

67 See Andrews, Lori B., A Conceptual Framework for Genetic Policy: Comparing the Medical, Public Health, and Fundamental Rights Models, 79 WASH. U. L. Q. 221, 245-49 (2001)Google Scholar (discussing data about the actual impact of genetic testing on relationships with spouses and potential spouses).

68 Id. at 250 (explaining that contrary to scientists’ initial expectation that many people at risk for Huntington's disease would choose to be tested, in reality “fewer than fifteen percent of at-risk individuals chose to undergo the testing”).

69 SOPHOCLES, OEDIPUS THE KING 28 (Anthony Burgess trans., Univ. Minn. Press 1972).

70 Hall, Mark A. & Rich, Stephen S., Genetic Privacy Laws and Patients’ Fear of Discrimination by Health Insurers: The View from Genetic Counselors, 28 J. L. MED. & ETHICS 245 (2000)Google Scholar.

71 Id. at 249.

72 Id.

73 Id. at 251.

74 Id. at 252-53.

75 Id. at 253.

76 Diver & Cohen, supra note 6, at 1469.

77 Chetan Gulati emphasizes this point. Gulati, Chetan, Genetic Antidiscrimination Laws in Health Insurance: A Misguided Solution, 4 QUINNIPIAC HEALTH L.J. 149, 168 (2001)Google Scholar (arguing that laws prohibiting genetic discrimination work to protect the health insurance structure from more systemic revision). Sonia Suter makes an interesting related observation by pointing out that the poor are disproportionately affected by non-genetic factors that affect health, like pollution and violence, and that therefore, special genetic legislation may exacerbate inequality. Suter, supra note 7, at 719.

78 Stiehm, Walter L., Poverty Law: Access to Healthcare and Barriers to the Poor, 4 QUINNIPIAC HEALTH L.J. 279, 285 (2001)Google Scholar.

79 Lemmens, supra note 5, at 380.

80 Soifer, Aviam & Wugmeister, Miriam, Mapping and Matching DNA: Several Legal Complications of “Accurate” Classifications, 22 HASTINGS CONST. L.Q. 1, 25 (1994)Google Scholar.

81 Andrews, Lori B., Past as Prologue: Sobering Thoughts on Genetic Enthusiasm, 27 SETON HALL L. REV. 893, 904 (1997)Google Scholar.

82 See Wolf, supra note 7 and accompanying text.

83 For a discussion of the relevance of the expressive dimension of action, see Symposium, The Expressive Dimension of Governmental Action: Philosophical and Legal Perspectives, 60 MD. L. REV. 465 (2001)Google Scholar.

84 For a similar discussion regarding flying the Confederate flag over the State House in South Carolina, see James Lindemann Nelson, The Meaning of the Act: Reflections on the Expressive Force of Reproductive Decision Making and Policies, IN PRENATAL TESTING, supra note 10, at 196.

85 See Lynch v. Donnelly, 465 U.S. 668, 692 (1984) (O’Connor, J., concurring) (arguing that “[w]hat is crucial is that a government practice not have the effect of communicating a message of government endorsement or disapproval of religion”); County of Allegheny v. ACLU, 492 U.S. 573, 573 (1989) (adopting the endorsement test of O’Connor's concurring opinion in Lynch when finding that a crèche in a city's holiday display violated the First Amendment's Establishment Clause while a menorah did not); see also Hellman, Expressive Dimension, supra note 9, at 24-26 (discussing Lynch and Allegheny and the scholarship they engendered).

86 See, e.g., Anderson, Elizabeth S. & Pildes, Richard H., Expressive Theories of Law: A General Restatement, 148 U. PA. L. REV. 1503 (2000)Google Scholar (offering a general defense of why the expressive dimension of state action matters); Hellman, Expressive Dimension, supra note 9 (arguing that the only way to determine whether classifications by state actors wrongly discriminate is to focus on the what the state action expresses); but see Adler, Matthew D., Expressive Theories of Law: A Skeptical Overview, 148 U. PA. L. REV. 1363 (2000)Google Scholar (challenging whether any of the so-called expressive theories really are theories which make the permissibility of law depend on its expressive dimension).

87 See Hellman, Expressive Dimension, supra note 9, at 1-2 (discussing Washington v. Davis, 426 U.S. 229 (1976), as the case that marked the point at which the intent-based understanding of the Equal Protection Clause became the dominant understanding of the Supreme Court).

88 See Hellman, Expressive Dimension, supra note 9, at 1 (discussing the work of Kenneth L. Karst and Andrew Koppelman).

89 See Brown v. Bd. of Educ., 347 U.S. 481 (1954).

90 U.S. v. Virginia, 518 U.S. 515 (1996).

91 See, e.g., Personnel Adm’r v. Feeney, 442 U.S. 256 (1976) (citing the Court's explanation that “‘discriminatory purpose … implies more than intent as volition or intent as awareness of consequences, [i]t implies that the decisionmaker … selected or reaffirmed a particular course of action at least in part ‘because of,’ not merely ‘in spite of,’ its adverse effects” (footnotes and citation omitted)); see also Hellman, Expressive Dimension, supra note 9, at 30-34 (discussing the claim that subjective intent is what has mattered to the Court in assessing violations of Equal Protection in most of the case law); but see Edwin Baker, C., Outcome Equality or Equality of Respect: The Substantive Content of Equal Protection, 131 U. PA. L. REV. 933 (1983)Google Scholar (arguing that the Court's requirement of invidious intent is used and ought to be used to denote objective rather than subjective intent).

92 Hellman, Expressive Dimension, supra note 9, at 4 (footnotes omitted).

93 Id. at 5.

94 CATHERINE A. MACKINNON, SEXUAL HARASSMENT OF WORKING WOMEN 101-06 (1979). Contrasting two approaches to sex discrimination which MacKinnon terms the “difference approach” and the “inequality approach,” she emphasizes that

[w]hat the second approach grasps, and the first does not, is that it is not only lies and blindness that have kept women down. It is as much the social creation of differences, and the transformation of differences into social advantages and disadvantages, upon which inequality can rationally be predicated. Discrimination is often irrational. But under the inequality approach, that is not all, nor even primarily, what is unjust about it. What is unjust about sex discrimination is that it supports a system of second-class status for half of humanity.

Id. at 105.

95 See infra notes 96-98 and accompanying text.

96 Leon Kass finds this to be the meaning of our society's enthusiasm for genetic science. Kass, Leon R., Triumph or Tragedy? The Moral Meaning of Genetic Technology, 45 AM. J. JURIS. 1 (2000)Google Scholar; Murray, supra note 12, at 68 (finding that the concern with “genetic prophesy”—a phrase borrowed from Nancy Wexler—to be one of the central reasons that some commentators worry about genetic discrimination); Wertz, Dorothy C., Society and the Not-So-New Genetics: What Are We Afraid of? Some Future Predictions from a Social Scientist, 13 J. CONTEMP. HEALTH L. & POL’Y 299, 308 (1997)Google Scholar (arguing that a genetic essentialism has dominated our history except during a few periods, and that this view of genetics and its power shapes how we view issues related to genetics).

97 This conception of genetic discrimination seems implicit in the critiques that emphasize the importance of the history of America's eugenic practices. See Soifer & Wugmeister, supra note 80; Andrews, supra note 81.

98 Murray, supra note 12.

99 For a thorough discussion of the history of the eugenics movement of the United States and Great Britain, see DANIEL J. KEVLES, IN THE NAME OF EUGENICS: GENETICS AND THE USES OF HUMAN HEREDITY (1985).

100 Id. at 3-19 (detailing Francis Galton's work in the mid nineteenth century).

101 Id. at 63 (describing that in the early part of the twentieth century, genetics was popular with both radicals and conservatives in the United States and England).

102 Id. at 62.

103 Id. at 90.

104 Id. at 75.

105 Id at 83 (explaining that “[c]learly a variety of causes, including the cultural bias of the Army tests themselves and the poor education of many of the test takers, might have accounted for the results[,] … [y]et the supposedly objective test data further convinced eugenically minded Americans not only that mental deficiency was genetically determined but that so was intelligence”).

106 Wertz, supra note 96, at 306.

107 Id. (explaining that “[i]t is unlikely that there would have been such emphasis on nondirectiveness had genetics begun as a pediatric or adult specialty outside the context of reproduction”).

108 Diver & Cohen, supra note 6, at 1478.

109 Id.

110 Id.

111 RONALD DWORKIN, LAW's EMPIRE 228-38 (1986). Dworkin uses the example of a chain novel to explain what a judge does in deciding a case. The new decision is like the next chapter in an on-going novel. As such, this new chapter must fit reasonably well with what has come before. According to Dworkin, there will be several reasonable interpretations of prior law that make possible a range of ways the new case can be decided. The judge must then choose among them, according to Dworkin, guided by the principle that he or she should make our law “the best it can be.” Id. at 229.

112 See Powell, supra note 27, at 44-48 (discussing the history and current status of available prenatal testing).

113 Id. at 44-45.

114 It is more productive to view the routine practice of offering prenatal tests and selective abortions as expressing a problematic meaning rather than focusing on the expressive dimension of the individual woman's choice to abort a disabled fetus, as that decision is usually carried out privately. As Eva Feder Kittay notes, “A woman rarely says: ‘Listen up, world. I am having an abortion based on a diagnosis of fetal abnormality and I am about to tell you why I choose to abort a fetus with such an abnormality.’” Eva Feder Kittay & Leo Kittay, On the Expressivity and Ethics of Selective Abortion for Disability: Conversations With My Son, in PRENATAL TESTING, supra note 10, at 186.

115 See Bruce Jennings, Technology and the Genetic Imaginary: Prenatal Testing and the Construction of Disability, in PRENATAL TESTING, supra note 10, at 124; Marsha Saxton, Why Members of the Disability Community Oppose Prenatal Diagnosis and Selective Abortion, in PRENATAL TESTING, supra note 10, at 147; Kittay & Kittay, supra note 114, at 165 (Leo Kittay's contribution is particularly noteworthy); Adrienne Asch, Why I Haven't Changed My Mind About Prenatal Diagnosis: Reflections and Refinements, in PRENATAL TESTING, supra note 10, at 234.

116 Jennings, supra note 115, at 135.

117 Id. at 134.

118 Saxton, supra note 115, at 148.

119 Id. at 160.

120 Asch, supra note 115, at 240.

121 Erik Parens & Adrienne Asch, The Disability Rights Critique of Prenatal Genetic Testing: Reflections and Recommendations, in PRENATAL TESTING, supra note 10, at 3, 5.

122 Erik Parens & Adrienne Asch, Introduction to PRENATAL TESTING, supra note 10, at ix, x.

123 Id.

124 James Lindemann Nelson, The Meaning of the Act: Reflections on the Expressive Force of Reproductive Decision Making and Policies, in PRENATAL TESTING, supra note 10, at 196, 211.

125 Id. at 196-97.

126 See, e.g., Bonnie Steinbock, Disability, Prenatal Testing, and Selective Abortion, in PRENATAL TESTING, supra note 10, at 108, 120-21.

127 Kittay & Kittay, supra note 114, at 187.

128 Bonnie Steinbock, supra note 126, at 121.

129 I have avoided drawing distinctions among disabilities as disability activists who critque prenatal genetic testing avoid making these distinctions.

130 This failure of imagination especially applies to persons with Down's Syndrome. See Parens & Asche, supra note 121, at 7-8 (discussing the attitudes of obstetricians and genetic counselors to patients who have received a prenatal diagnosis of Down's Syndrome).

131 MICHAEL BÉRUBÉ, LIFE AS WE KNOW IT (1996).

132 STUART HAMPSHIRE, JUSTICE IS CONFLICT 37 (2000) (arguing that “the diversity and divisiveness of languages and of cultures and of local loyalties is not a superficial but an essential and deep feature of human nature—both unavoidable and desirable—and rooted in our divergent imaginations and memories”).

133 Id. at 4 (asserting that “fairness in procedures for resolving conflicts is the fundamental kind of fairness, and that it is acknowledged as a value in most cultures, places, and times: fairness in procedure is an invariable value, a constant in human nature”).

134 Id. at 8 (identifying a key feature of procedural fairness as “audi alteram pertem (‘hear the other side’)”).

135 Id. at 33-34.

136 Kittay & Kittay, supra note 114, at 187-92.

137 Greely, supra note 13, at 1494 (arguing that “[b]y telling people that their genetic variations are so important—are the equivalents of race, sex, religion, and other suspect classifications—we encourage them to believe that it is true, in ways that are both inaccurate and pernicious”); Murray, supra note 12, at 71; Suter, supra note 7, at 740 (concluding that by “responding to the public's fears with special protections for genetic information, genetics legislation may validate and fuel the flames of these fears as well as the underlying perspective that generates those fears”).

138 Murray, supra note 12, at 71.

139 See supra notes 137-138 and accompanying text.

140 See supra text accompanying notes 70-75.