1 “We are living through one of the greatest scientific revolutions in history: the ‘information revolution’ in genetics.” Eric S. Lander, Scientific Commentary: The Scientific Foundations and Medical and Social Prospects of the Human Genome Project, 26 J.L. Med. & Ethics 184, 184 (1998).

2 James Watson & Francis Crick, Genetical Implications of the Structure of Deoxyribonucleic Acid, 171 Nature 964 (1953).

3 See infra notes 29-32 and accompanying text.

4 Maxwell J. Mehlman, Federal Entitlement Programs, in The Human Genome Project and The Future of Health Care 113, 114 (Thomas H. Murray et. al. eds., 1996).

5 Dorothy Nelkin & M. Susan Lindee, The DNA Mystique: The Gene as a Cultural Icon 2 (1995) (“Fundamental to identity, DNA seems to explain individual differences, moral order, and human fate.”).

Mark A. Rothstein, The Genetic Factor in Health Care Reform: Framing the Policy Debate, in The Human Genome Project and the Future of Health Care 224, 224 (Thomas H. Murray et. al. eds., 1996).

6 “As we enter this period of greater knowledge about genetics, we must recognize the considerable fear the public feels every time the words ‘genetic,’ [and] ‘DNA’ … appear. We need to ask ourselves what really is new about the [Human Genome Project] and what, exactly, we are so afraid of.” Dorothy C. Wertz, 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, 300 (1997). See also Smith, George P., II & Burns, Thaddeus J., Genetic Determinism or Genetic Discrimination, 11 J. Contemp. Health L. & Pol’y 23, 23-24 (1994)Google ScholarPubMed (“Commentators continue to view the significance of advances in [genetic technology] through the lens of [Aldous] Huxley’s totalitarian society, a genetic caste system made possible by genetic technology.”).

7 “Genetic discrimination” eludes deliberate definition. As discussed infra Part V.D, state statutes have defined it in a number of ways: narrowly to refer to genetic test results and broadly to refer to any hereditary information. One commonly cited definition is “discrimination against an individual or against members of that individual’s family solely because of real or perceived differences from the ‘normal’ genome in the genetic constitution of that individual.” Marvin R. Natowicz et al., Genetic Discrimination and the Law, 50 Am. J. Hum. Genetics 465, 466 (1992). No one definition is adopted in this paper precisely because the author argues that the term lacks any intrinsic meaning.

8 See Wertz, supra note 6, at 308 (noting that nearly 100% of international geneticists, U.S. primary care physicians, patients, and the general public in the United States believe that insurers should be prohibited from accessing an individual’s genetic information without the individual’s consent).

9 N.Y. State Task Force on Life & The Law, Genetic Testing and Screening in the Age of Genomic Medicine 97 (2000) [hereinafter NY Task Force Report].

10 Merriam-Webster’s Collegiate Dictionary 332 (1 Oth ed. 1993) (emphasis added).

11 See infra Part III.

12 Mary A. Bobinski, Genetics and Reproductive Decision Making, in The Human Genome Project and the Future of Health Care 79, 80 (Thomas H. Murray et al. eds., 1996).

13 Genetic tests include “many different laboratory assays used to diagnose or predict a genetic condition or the susceptibility to genetic disease.” Inst. of Med., Assessing Genetic Risks: Implications for Health and Social Policy 4 (Lori B. Andrews et al. eds., 1994) [hereinafter Assessing Genetic Risks].

14 Id. at 8-9.

15 Huntington’s Disease is one example. See Matt Ridley, Genome 56 (1999).

16 Unfortunately, scientists and the public have carelessly shorthanded the relationship between genetics and disease, as evidenced by a statement such as “Mary has the breast cancer gene.” Rather, all of us have a gene that when mutated may increase our risk of developing breast cancer. Labeling a mutation as a disease will become increasingly more difficult as human variation is better understood.

17 For a description of variations in gene expression, see NY Task Force Report, supra note 9, at 13-14.

18 See Rothstein, Laura F., Genetic Discrimination: Why Bragdon Does Not Ensure Protection, 3 J. Health Care L. & Pol’y 330 (2000)Google Scholar; infra Part V.

19 Deborah Stone, The Implications of the Human Genome Project for Access to Health Insurance, in Human Genome Project and The Future of Health Care 133, 140 (Thomas H. Murray et al. eds., 1996).

20 For instance, a comprehensive BRCA1-2 test conducted by Myriad Genetics costs $2,680. Email correspondence with Myriad’s on-line inquiry service on Mar. 26, 2001.

21 See infra Part V.

22 Assessing Genetic Risks, supra note 13, at 60. Examples of monogenetic disorders include Huntington’s Disease, hemochromatosis, and polycystic kidney disease. Id. at 87-92.

23 Asthma aptly demonstrates the complex interplay between genetics and the environment. See Ridley, supra note 15, at 66-75. An example of slight genetic contribution is intelligence. See id. at 76-90.

24 Assessing Genetic Risks, supra note 13, at 38.

25 Id. at 60. Examples of multifactorial disorders include coronary heart disease, hypertension, some forms of cancer, and diabetes. Id. at 94-98.

26 Michael J. Malinowski & Robin J.R. Blatt, Commercialization of Genetic Testing Services: The FDA, Market Forces, and Biological Tarot Cards, 71 Tul. L. Rev. 1211, 1219 n.25 (1997) (“[T]he penetrance of the genetic factor (genotype) is the probability that the related condition will appear in the physical make-up (phenotype) when the genetic factor is present.”).

27 Id. at 1226 n.50. There are currently at least 5,000 genetically associated conditions for which there is no cure. See Malinowski, Michael J. & O, Maureen A.’Rourke, A False Start? The Impact of Federal Policy on the Genotechnology Industry, 13 Yale J. on Reg. 163, 167 (1996)Google Scholar. There are currently 400 available genetic tests. NY Task Force Report, supra note 9 at 29.

28 Anny Huang, FDA Regulation of Genetic Testing: Institutional Reluctance and Public Guardianship, 53 Food & Drug L.J. 555, 558-59 (1998); Malinowski & Blatt, supra note 26, at 1227.

29 Nat’l Human Genome Research Inst., Div. Extramural Research, The Human Genome Project, at http://www.nhgri.nih.gov/HGP/ (last modified Feb. 9, 2000).

30 Id.

31 In 1998, Dr. Craig Venter announced that he would sequence the entire human genome in three years. Human Genome Program, U.S. Dept. Energy, Private-Sector Sequencing Planned, Human Genome News (July 1998), available at http://www.oml.gov/hgmis/pubIicat/hgn/v9n3/ 01venter.html.

32 Ridley, supra note 15, at 55.

33 CNN.COM, Genome Announcement “Technological Triumph” (June 26, 2000), at http:// www.cnn.com/2000/HEALTH/06/26/human. genome.04.

34 Genetic Alliance, inc., Remarks on the Completion of the First Survey of the Entire Human Genome Project (June 26, 2000), at http://www.geneticalliance.org/geneticissues/HGP remarks.html.

35 As Kenneth Ludmerer aptly observed in his study of the social meaning of genetics: “Perhaps no science in modern times has had so great a social impact and has been so enmeshed in diverse social issues as genetics.” Kenneth M. Ludmerer, Genetics and American Society: a Historical Appraisal 1 (1972).

36 “Indeed, for some, the eugenics movement still casts a shadow over the Human Genome Project.” Smith & Burns, supra note 6, at 24-25. See also Margaret Lock, Genetic Diversity and the Politics of Difference, 75 Chi.-Kent L.Rev. 83, 84 (1999)Google Scholar (“[DJiscussion about an evaluation of… genetic difference inevitably incites anxiety because, in the lived experience of so many people, assessment of biological difference, until now based almost exclusively on external morphological features, has been synonymous with discrimination and racism.”).

37 Charles Darwin himself, however, also grafted his observations of nature onto his understanding of weak and less desirable segments of the population. Darwin argued that “[b]oth sexes ought to refrain from marriage if [they are] in any marked degree inferior in body or mind.” 2 CHARLES Darwin, The Descent of Man and Selection in Relation to Sex 403 (London, John Murray, 1871). He also noted that civilization fought against nature by providing the means by which weaker elements—the insane, sick, maimed and poor—can be protected, which is “highly injurious to the race of man.” Id. at 186.

38 Mark H. Haller, Eugenics: Hereditarian Attitudes in American Thought, 3-4 (1963).

39 See id. at 8; Daniel J. Kevles, in The Name of Eugenics 3 (1985). Even prior to delineating eugenics theory, Galton sought to document “natural ability” in intelligence. Id.

40 Kevles, supra note 39, at ix.

41 Haller, supra note 38, at 9.

42 Id. at 9-20. Galton developed statistical models, then an infant science, to understand and predict heredity. These models were largely substantiated by the rediscovery in 1900 of Mendel’s paper on pea inheritance. See Kevles, supra note 39, at 13-15; Haller, supra note 38, at 12. Prior to this rediscovery, much of the scientific community believed that traits acquired by the individual during his lifetime could be passed onto offspring, a theory that Galton rejected outright. Id. at 11.

43 Kevles, supra note 39, at 4-5.

44 Galton believed that a man’s reputation for excellence was proof positive of hereditary excellence, and he believed that hereditary “talent was rarely impaired by social disadvantage.” Id. at 4.

45 See discussion infra Part I1I.C.

46 See generally The Jukes: A Study of Crime, Pauperism, Disease and Heredity (New York, G.P. Putman’s Sons 1891).

47 Haller, supra note 38, at 22.

48 Kevles, supra note 3 9, at 71.

49 Haller, supra note 38, at 22. Similarly, in 1912, Henry H. Goddard published The Kallikak Family: A Study in the Heredity of Feeble-Mindedness. This study traced all of the blood and marital relatives of his institutionalized patient, Deborah, and found that, in total, 1,146 people had been adversely affected by exposure to the degenerate heredity in the family line. Leila Zenderland, Measuring Minds 173 (1998). While the book did not evince the xenophobic and racist views demonstrated by similar studies (the Kallikaks were white Protestants who could be traced back to the American Revolution), Goddard was still alarmed by the repetition of immorality, slothfulness and imbecility. In this way, his book responded to traditional upper class Christian fears. Id. at 179. For a chronicle of family pedigree studies from 1877 until 1919, see White Trash: The Eugenic Family Studies, 1877-1919 (Nicole Hahn Rafter ed., 1988).

50 Haller, supra note 38, at 24.

51 For instance, Charles Davenport believed that “man was bound by heredity and could be little affected by religion, education, or reform.” and “assumed that nearly any trait of man that could be named could be traced directly to a gene” including “eye color, feeblemindedness, insanity, inadventuresomeness, unconversationableness, matter-of-factness, occupational interests and reading habits.” Haller, supra note 38, at 67.

52 Zenderland, supra note 49, at 151 (quoting Dr. Martin Barr, Some Studies in Heredity, J. Psycho-Asthenics, Sept. 1896, at 2).

53 Haller, supra note 38, at 24.

54 As psychology became more sophisticated, this type of undifferentiated inheritance would be discredited. Id. at 69. However, the belief that specific mental aberrations or mental illnesses were entirely inherited would persist. While eugenicists disagreed over the simplicity or complexity of the inherited trait, inheritance was largely accepted. Id. at 70-71. Additionally, eugenicists began to statistically tease out the relationships between different types of degeneracy, for instance, noting the overwhelming confluence of feeblemindedness and criminal behavior. Id. at 103. Eugenicists, however, explained this phenomenon as common inheritance, not perhaps, that individuals with little economic opportunity might resort to crime or prostitution, or that young girls with lower intelligence might be more easily taken advantage of. Id.

55 Kevles, supra note 39, at 43. While European and American thinkers did not accept Mendelian genetics completely, the reaction to his study of pea inheritance was largely favorable. See id. at 43-45. See also Ludmerer, supra note 35, at 14 (“The sentiment for a eugenics movement had already been present before 1900; the rise of genetics allowed this sentiment to be mobilized.”).

56 Due to the luck that often propels scientific discovery, the traits that Mendel observed were all simple traits. A gene for pea color, stalk height or seed-coat smoothness was like an on/off switch. Had the traits he observed been like the majority of genetic traits—more like a spectrum upon which the environment acts—he might not have been able to deduce his principles of inheritance. For a description of Mendel’s experiments, see KEVLES, supra note 39, at 42.

57 By the 1883 publication of Inquiries into Human Faculty, Galton had arrived at his scientific theory of eugenics, which he understood to be the refinement of humanity through engineered breeding. Haller, supra note 38, at 10. This theory is closely related to “social Darwinism,” a phrase coined by Herbert Spencer that means a belief that “biology was destiny … and that a broad spectrum of socially deleterious traits … resulted from heredity.” Kevles, supra note 39, at 20. For a lengthier description of social Darwinism, see Ludmerer, supra note 35, at 11-13. The seminal work on social Darwinism is Richard Hofstadter, Social Darwinism in American Thought (1954).

58 The use of such phrases as degenerate, imbecile, feebleminded, etc., are not meant to insult, but rather to incorporate the terminology of eugenics, and the perceptions and understandings that such language reflects. The term “degenerate” included three related conditions of being defective, dependent and delinquent. Degeneracy “could manifest itself not only in feeblemindedness, pauperism, or crime, but also in epilepsy, insanity, alcoholism, or sexual immorality.” Zenderland, supra note 49, at 187.

59 As one commentator described the transition from correction to castration:

Ludmerer, supra note 35, at 91.

60 F. William Inman, Biological Politics 3 (1935).

61 See, e.g., F.W. White, Posterity: In the Light of Science, Philanthropy, and Population 36 (1929):

62 Kevles, supra note 39, at 113 (quoting Albert Wiggam).

63 The American and British eugenics movements are distinguishable from Germany’s Final Solution in this important respect. See Kevles, supra note 39, at 251-52.

64 Haller, supra note 38, at 5.

65 Id.

66 Ludmerer, supra note 35, at 16.

67 For instance, Goddard believed he had moved away from blaming degenerates for their condition because he rejected depictions of the poor as lazy or cruel. Rather, in “adopting a new hereditarian determinism, he thought he was doing just the opposite. The real problem, he insisted repeatedly, was not that such persons would not behave, but that they could not.” Zenderland, supra note 49, at 198.

68 The public relations and educational materials of the eugenics movement for custodial care, for instance, stressed public safety (degenerates should not be let loose on the public) and pity. “It is the thing to do for the feebleminded - get them out of the big world where they have such a hard time because they are not like other folks.” Haller, supra note 38, at 126.

69 See infra note 133.

70 Zenderland, supra note 49, at 199-200.

71 Haller, supra note 38, at 77.

72 See, e.g., id. at 25-36. Goddard, who researched prostitutes much later, believed that low intelligence and prostitution were strongly correlated with pre-marital sex. Zenderland, supra note 49, at 207-10.

73 Goddard, who researched and wrote forty years after Richard Dugdale, determined that degenerates were apathetic toward their own condition, and lacked the desire to better their condition or to break out of the cycle of poverty. He contended that slums could not be improved “until we take care of those who make the slums what they are.” Renovations or reforms in the slums would have no effect because “we would still have slums in a week’s time, because we have these mentally defective people who can never be taught to live otherwise than as they have been living” and need to be “guided by intelligent people.” Zenderland, supra note 49, at 143, 148 & 198 (quoting Henry Herbert Goddard). See, e.g., Haller, supra note 38, at 25-36. Even theorists sympathetic to the idea that environment played a crucial role were increasingly discouraged with their efforts and began to question whether degenerates could be rehabilitated. Kevles, supra note 39, at 70-71. See also Zenderland, supra note 49, at 148 (“By the end of the century, both physicians and social scientists were losing faith in their abilities to counter defective inheritance by improving the environment.”).

74 Am. Eugenics Soc., American Eugenics TO DAY 7 (1939).

75 S.J. Holmes, Human Genetics and its social import 1 (1936). See also Albert Edward Wiggam, The Fruit of the Family Tree 330 (Garden City Publishing Co., 1925).

Id.

76 For instance, criminal anthropologists, who studied crime rates and prisoner pedigrees, believed that there was a physical basis for criminal behavior. Such a theory of crime, “in the name of science, would banish sentimental faith in reform and prescribe that those whose failures were inherited and incurable should be forbidden to propagate.” Haller, supra note 38, at 41. Once a criminal was understood as an incorrigible danger to society who could not be stopped, efforts to prevent such a person from passing on his poison intensified. In response, certain criminologists proposed segregation, castration, sterilization, segregation and even death. Id. at 42. There were, however, outspoken critics to criminal anthropology’s conclusions. For instance, Frederick H. Wines, secretary to the Illinois State Board of Charities and a deeply committed criminal reformer, testified that “I do not believe in inherited crime anymore than I believe in the imaginary criminal type. One may be bom with a physical and mental constitution which predisposes him to crime, [b]ut so much greater is the influence of the environment than that of heredity, in the formation of character, that proper training may and often does correct this predisposition.” Id. at 44.

77 “As soon as the science of genetics began, many individuals started speaking of its social import and potential applicability to social problems.” Ludmerer, supra note 35, at 7.

78 Holmes, supra note 75, at 359. See also J.H. Kellogg, The Eugenics Registry, in Second Nat’l Conference on Race Betterment 76 (Race Betterment Found. 1915):

79 Social commentators of the day looked to biological models to explore unrelated phenomenon. For instance, one commentator railed against conscientious objectors and pacifists by analogizing to the constant struggle between animals and between humans and disease observed in the natural world:

Inman, supra note 60, at 58.

80 Kevles, supra note 39, at 54.

81 Haller, supra note 38, at 64-65.

82 For a detailed description of Charles DavenpoTt, see Kevles, supra note 39, at 41-56.

83 See supra note 154.

84 See Kevles, supra note 39, at 55-56.

85 For a discussion of the spread of eugenics in the general middle class public, see Kevles, supra note 39, at 60-63.

86 Kevles, supra note 39, at 58.

87 Am. Eugenics Soc., Practical Eugenics: Aims and Methods of the American Eugenics Society 3 (1938) (“Eugenicists therefore believe that the good social order must provide such conditions and motivations that parents of sound heredity will of their own volition have more children than at present, whereas parents of inferior heredity will have fewer.”) This pamphlet includes recommendations of such “pro-family” policies such as cooperative nurseries, tax incentives, and decreasing medical costs for the middle class. Id. at 4-5. Interestingly, such efforts often met with resistance. Critics noted that any movement to breed the upper classes would have foreclosed the birth of Alexander Pope or Lord Byron, two individuals from degenerate stock, and that the consolidation or over-use of certain traits would “breed monstrosities” (similar to the emphasis on biodiversity today) because individuals would be born with a complete emphasis of one trait (i.e., intelligence) but no manifestation of other traits, such as strength or health. Haller, supra note 38, at 82.

88 Id. at 81. For instance, one eugenicist implored women to recognize a “deeper patriotism that sees motherhood once more as women’s noblest duty.” WlGGAM, supra note 75, at 310-11.

89 Mainstream eugenicists agreed that middle class women should stay at home to bear and raise children. Incentives that worked against such behavior, such as birth control and higher education for women, were to be discouraged. Kevles, supra note 39, at 88-89. Eugenicists proposed certain economic incentives to promote eugenical births, such as tax breaks, educational allowances and salary supplements. Kevles, supra note 39, at 91. See also J. Sanders, Measures to Encourage Fertility of Gifted, in A Decade of Progress in Eugenics: Scientific Papers of The Third International Congress of Eugenics 361 (1934)Google Scholar. Commentators have distinguished between positive eugenics— programs designed to increase the rate of desirable births—and negative eugenics—programs designed to abridge the procreative choices of undesirables such as sterilization, marriage restrictions and institutionalization. See, e.g., Ludmerer, supra note 35, at 7-8.

90 Kevles, supra note 39, at 74. A pamphlet published by the American Eugenics Society provided statistics “documenting” the chance of having a son listed in Who's Who by profession. For example, the Society estimated that only one in 48,000 unskilled laborers and only one in 680 farmers will have such a son; but one in eighty businessmen, one in forty-six teachers and one in twenty clergymen will have such a son. Am. Eugenics Soc., American Eugenics Catechism 3 (1934).

91 “The various dysgenic classes which are so rapidly increasingly in the United States constitute our vast ‘aristocracy of the unfit.’ … This increasing horde will ultimately overrun and destroy the diminishing posterity of the better classes unless a practical program of restrictive eugenics is adopted and effectively executed.” Lena K. Sadler, Is the Abnormal to Become Normal?, in A Decade of Progress in Eugenics: Scientific Papers of The Third International Congress of Eugenics 193 (1934).

92 One commentator described the problem as such:

Theodore Russell Robie, Selective Sterilization for Race Culture, in A Decade of Progress in Eugenics: Scientific Papers of The Third International Congress of Eugenics 206 (1934) (emphasis in original).

93 Haller, supra note 38, at 81.

94 Id. at 79.

95 Holmes, supra note 75, at 192.

96 See Paul A. Lombardo, Medicine, Eugenics, and the Supreme Court: From Coercive Sterilization to Reproductive Freedom, 13 J. Contemp. Health L. & Pol’y 1, 1 (1996) (“The most powerful vehicle of the eugenic ideology was the law.”).

97 Kevles, supra note 39, at 99.

98 Indiana marriage law was the most expansive, covering the mentally deficient, those having a transmissible disease and alcoholics. Kevles, supra note 39, at 100.

99 Haller, supra note 38, at 47-48. For a survey of major state laws, see Comm. of The Am. Neurological ass’n for the Investigation of Eugenical sterilization, eugenical Sterilization: a Reorientation of the Problem 8-21 (MacMillian Co. 1936).

100 See H.J. Muller, The Dominance of Economics over Eugenics, in A Decade of Progress in Eugenics: Scientific Papers of The Third International Congress of Eugenics 138 (William & Wilkins Co. 1934) (“That imbeciles should be sterilized is of course unquestionable … .”).

101 Haller, supra note 38, at 47-48. Because eugenicists recognized that laws limiting marriage would be grossly unpopular, “[t]hey left the promotion, instead, to local women’s clubs, churches, physicians, and charity groups.” Id. at 142. However, marriage laws that worked in tandem with eugenic principles were more successful. For example, some states required potential spouses to be tested for venereal disease, mental illness, contagious diseases and feeblemindedness before a marriage license would be granted. Thus, by the mid-1930s, forty-one states prohibited the insane and feebleminded to get married, seventeen prohibited epileptics from getting married and four states prohibited alcoholics from getting married. Id.

102 Haller, supra note 38, at 46. Additionally, men who had been castrated were often more passive and docile. Deprived of sexual desire, they would not make ill-informed or impetuous decisions based on their desire for a woman. Furthermore, men would so dread castration, that they would take all steps to curb their degenerate inclinations to avoid the procedure. See id.

103 Id. at 48.

104 Id.

105 Id. at 50.

106 Kevles, supra note 39, at 100. As early as 1911—just one year after Cold Harbor was established—six states had sterilization laws. Kevles, supra note 39, at 47. And by the late 1920s, twenty-four states had sterilization laws. Kevles, supra note 39, at 111.

107 Haller, supra note 38, at 136.

108 2 74 U.S. 200(1927).

109 Id. at 206.

110 Zenderland, supra note 49, at 324.

111 274 U.S. at 207.

112 Id. The Court stated:

Id.

113 “Racist” is used here as Kenneth Ludmerer has described it in his book, see supra note 35. Racists were “individuals [who] believed in the existence of racial stereotypes, accepted the myth that certain races possess a monopoly of desirable characteristics, and that racial differences are caused invariably by heredity … .” Id. at 5. Further, the term as used in this section connotes someone who actively sought to abridge the rights and physical safety of unpopular races. As Ludmerer notes, while some eugenicists espoused views suggesting that some groups were innately superior to other groups, the eugenicists here termed as racist had a different tenor to their views. Their statements evince a passionate hostility, an almost universal dislike for everyone who was not “Nordic” and a tendency to use dehumanizing language to discuss degenerates. See id. at 22-30. It is important, however, not to collapse eugenics and racism into a single category. While equally offensive, many eugenicists directed their efforts against the poor without attention to race. See Zenderland, supra note 49, at 264-65 (discussing Goddard’s famous study of the Kallikaks, a white Protestant family).

114 As one commentator noted, eugenics tended to place all human societies on a vertical pole with blacks at the bottom and Nordics at the top. Each ethnic community was endowed with predictable physical and behavioral characteristics (tracking the typical stereotypes of the day). See Ludmerer, supra note 35, at 22-23.

115 See Haller, supra note 38, at 51.

116 Part of their success was due to the scientific community’s silence. While by the 1920s many of the theories underpinning eugenics had begun to falter, no one spoke-up against the use of eugenics in justifying immigration policy. The public, not hearing a contradictory voice, believed eugenics to be well-founded, and most likely placed pressure on politicians to act accordingly. Ludmerer, supra note 35, at 101-04.

117 Haller, supra note 38, at 153. One eugenicist summarily announced that “At least three- fourths of the misery in the world is due to the simple fact that the wrong people get married. Marriage, where children are expected, should be a privilege bestowed by society solely upon the fit. Parentage is not a natural right, and it should be withheld from the unfit.” Wlggam, supra note 75, at 171.

118 Haller, supra note 38, at 154.

119 Id. at 156-57. During the 1920s, Harry Laughlin, a leading eugenicist, served as the “expert eugenics agent” on the House Committee on Immigration and Naturalization. He delivered speeches detailing how recent immigrant populations (notably non-Anglo-Saxon) presented more pronounced symptoms of poor hereditary and urged restrictive policies. Ludmerer, supra note 35, at 101.

120 Haller, supra note 38, at 156-57.

121 Ludmerer, supra note 35, at 26.

122 See id. at 102-13.

123 Haller, supra note 38, at 153-57.

124 For instance, a publication put out by the Committee of the American Neurological Association for the Investigation of Eugenical Sterilization in 1936 devoted a single sentence to the contention that degeneracy is on the rise and then spent considerable time undermining the validity of the statistics used in supporting sterilization. Comm, of the Am. Neurological Ass’n for the Investigation of Eugenical Sterilization, supra note 99, at 24-58.

125 Comm, of the Am. Neurological Ass’n for the Investigation OF Eugenical Sterilization, supra note 99, at 58.

126 Haller, supra note 38, at 125-29.

127 See generally Kevles, supra note 39, at 165-75 (briefly discussing the anti-eugenics movement).

128 See generally Ludmerer, supra note 35, at 121-34 (detailing the repudiation of the eugenics movement in America following World War I).

129 These claims were bolstered by geneticists using simpler organisms, such as fruit flies, that began to demonstrate the extremely intricate interplay between heredity and the environment. Haller, supra note 38, at 167. While most geneticists focused on non-human heredity, a few studied humans. For instance, Herbert S. Jennings, then director of the zoological department at John Hopkins University, found that heredity in human beings was widely unpredictable and that environment was a key player. Id. at 168.

130 For instance, S.J. Holmes noted that if longevity is determined to run in a family between father and son, it may be due to heredity, or it may be that both parent and child “live in a measure under conditions which in some families tend to prolong life and in others tend to shorten it. A parent- offspring or a fraternal correlation, therefore, may at times be due to causes other than heredity, and we have to interpret the correlation in the light of the possible factors which may bear upon the problem.” Holmes, supra note 75, at 95.

131 Id. at 64.

132 See, e.g., Comm. of The.Am. Neurological Ass’n For The Investigation of Eugenical Sterilization, Eugenical Sterilization: a Reorientation of the Problem 97 (MacMillian Co. 1936) (In discussing so-called studies of heredity mental illness, the author notes that “the criticism that can be made of all this work is that there were no control studies, an elementary scientific need.”). Increasingly, reputable geneticists resigned from eugenics posts or refused to participate in eugenics scholarship. Kevles, supra note 39, at 123.

133 Haller, supra note 38, at 112. As early as 1915 at the annual meeting of the American Psychological Association, several psychologists spoke out against the application of the Binet test and the conclusions that Goddard and his associates drew from the results. See Zenderland, supra note 49, at 245. Eugenicists were quick to incorporate related scientific advances to support their cause. For instance, psychologists that worked with the mentally ill and the feebleminded seized upon Binet’s intelligence testing—testing still used today—to conduct longitudinal pedigree studies. At times, incorporating related scientific fields was difficult. Eugenics was based on a simplistic reinterpretation of Mendelian genetics that understood every trait to be a simple on/off switch, whereas other scientific models (i.e., intelligence testing) measured capability on a continuum. See id. at 157. Often, eugenicists ignored or modified other scientific principles to fit their agenda, distorting the measurement. See id. at 158.

134 Id. at 189.

135 See Haller, supra note 38, at 120-21.

136 See Ludmerer, supra note 35, at 122-23.

137 Id. at 123.

138 Haller, supra note 38, at 144-45.

139 Ludmerer, supra note 35, at 121-24. Geneticists opposed to the legislation were not necessarily opposed to all immigration quotas, however, they felt that the proposed legislation was unscientific and largely based on prejudice. For instance, S.J. Holmes advocated some immigration controls by “requiring high standards of admission from every country so that only those of sound physique and demonstrably good mentality and character are allowed to enter.” HOLMES, supra note 75, at 347. While their criticisms were too disorganized to prevent the legislation, their outspoken dissent did contribute to the eugenics movement’s ultimate disintegration. Ludmerer, supra note 35, at 123.

140 For example, S.J. Holmes lamented the influx of racism into eugenic thought and found the scientific underpinnings to be faulty. Ludmerer, supra note 35, at 122. In his 1936 textbook, Holmes devoted the first several chapters to a thorough explanation of genetics and cell structure and consistently indicated that the environment played a significant role in the expression of many inherited traits. See Holmes, supra note 75.

141 Haller, supra note 38, at 145. See LUDMERER, supra note 35, at 126 (noting that Boas rejected the traditional anthropological approach, which judges “the ideas and institutions on non- Westem cultures, particularly primitive peoples, by the standards of our own society,” and “the widely held assumption that every race or society represents some stage on a linear scale of progression from lower to higher.”); Elazar Barkan, The Retreat of Scientific racism 281 (1992) (“The single most active American scientist to combat racism in science was Franz Boas … .”).

142 Haller, supra note 38, at 146.

143 Kevles, supra note 39, at 169. Interestingly, eugenicists in this country endorsed Germany’s Eugenic Sterilization Law of 1933 (also known as the Hereditary Health Law), and had difficulty foreseeing the trajectory from that law to Kristelnacht to Buchenwald. Ludmerer, supra note 35, at 116-18. Nazi officials acknowledged the praise by crediting their law to American and British eugenic thought. Kevles, supra note 39, at 118. While some Americans did try to distinguish Nazi policies from American eugenics, “[s]uch a distinction between ‘eugenic’ and ‘Nazi’ goals was not made by many leading American eugenicists,” so that the taint of the latter infected the former. Ludmerer, supra note 35, at 117. For instance, L.C. Dunn, a leading geneticist at Columbia University, remarked that “[t]he business of finding out the characteristics of the German population goes on vigorously… . At close range, the situation is heart-breaking.” Id. at 128.

144 Kevles, supra note 39, at 164 (quoting Hermann J. Muller).

145 Comm. of The Am. Neurological Ass’n for the Investigation of Eugenical Sterilization, supra note 132, at 60.

146 See, e.g., Charles J. Russo, Unequal Educational Opportunities for Gifted Students: Robbing Peter to Pay Paul?, 29 Fordham Urb. L.J. 727, 744 (2001) (noting that some of the instruments employed by the genetics movement, such as IQ tests, are still used in the education system today). Pedigrees and family histories have been crucial in tracing the genetic origin of many diseases. See, e.g., Wis. Dep’t Health and Family Servs., Programs and Services, at http://www.dhfs.state.wi.us/ children/factsforfamilies/genetic.htm (last visited on Feb 27, 2002) (describing genetic services to include information gathered from a detailed family history, review of family records and interviews with family members are used to diagnose and trace disease histories in the family).

147 Kevles has called the leaders of the eugenic movement the “modem priesthood.” Indeed, the finest scientists and universities at one point or another linked themselves with the movement. Kevles, supra note 39, at 69.

148 Interestingly, it has been argued that it was the departure of mainstream geneticists that triggered less reputable and more racist individuals to speak for the movement. The exodus of geneticists is dated roughly at the end of World War I. Thus, it was the absence of science, perhaps not its presence, that led eugenics to utter its most incredible claims. Ludmerer, supra note 35, at 83-84.

149 Part of the eugenics movement’s success is surely attributable to the intoxication of its early followers by science. See, e.g., Ludmerer, supra note 35, at 37 (“Trusting no other form of knowledge as they did scientific fact, they developed an unshakable confidence in the capability of biology to serve as a tool of social analysis.”).

150 See infra note 456.

151 Nelkin & Llndee, supra note 5, at 4:

152 See infra Part VI.

153 Nelkin & Lindee, supra note 5, at 6.

154 A term coined by Sheldon Reed, then Director of the Dight Institute, in 1947. Interestingly, he used genetics, rather than the term eugenics, because the latter was so discredited. Kevles, supra note 39, at 253.

155 For instance, recognizing that some forms of lowered intelligence are due to congenital hypothyroidism destigmatizes the disorder and suggests possible medical treatment. See James E. Haddow et al., Maternal Thyroid Deficiency During Pregnancy and Subsequent Neuropsychological Development of the Child, 341 New Eng. J. Med. 549, 551-53 (1999) (suggesting that hypothyroidism can be treated during pregnancy with medication to increase the intelligence and the well-being of the child); see also Milton R Brown, et al, Central Hypothyroidism Reveals Compound Heterozygous Mutations in the Pit-1 Gene, 49 Hormone Research 98-102 (1998) (finding that some forms of hypothyroidism may be linked to a genetic mutation).

156 Haller, supra note 38, at 124.

157 See, e.g., Assessing Genetic Risks, supra note 13, at 185-201 (discussing the need for more public education about genetics).

158 Ludmerer, supra note 35, at 17, 83-84. For instance, Charles Davenport, an early eugenicist, believed that Jewish physical traits were recessive to Gentile physical traits such that 90% of Gentile-Jewish offspring would have Gentile physical traits. Kevles, supra note 39, at 74-76.

159 Ludmerer, supra note 35, at 128 (quoting L.C. Dunn in a letter to John Merriam, July 3, 1935).

160 Geneticists who disapproved of the blatant misuse of genetic information for cruel social programs were “the first group of scientists anywhere to raise the question of what constitutes the investigator’s social responsibility concerning the social applications of his discipline.” Ludmerer, supra note 35, at 3.

161 This is contrary to the early American eugenics movement when eugenical principles often evinced little understanding of the scientific subject, and to most followers “eugenics assumed the proportions not of a science, but of a social crusade.” Id. at 15.

162 Id. at 135-40, 146.

163 Id. at 145-46.

164 Id. at 147.

165 For a discussion of the law’s role in the eugenics agenda, see Lombardo, supra note 96.

166 NY Task Force Report, supra note 9, at 93-94.

167 42 C.F.R. § 50.201 (1999); Relf v. Weinberger 372 F. Supp. 1196, 1201 (1974) (holding that federal dollars could not be used for involuntary sterilizations).

168 See, e.g., Conservatorship of Valerie N., 40 Cal. 3d 143 (1985).

169 2 74 U.S. 200 (1927).

170 See, e.g., Me. Rev. Stat. Ann. tit. 34-B, § 7013(4) (West 1998) (requiring “clear and convincing evidence that sterilization is in the best interest of the person being considered for sterilization”); In re Wirsing, 573 N.W.2d 51 (Mich. 1998) (noting that sterilization can be court sanctioned when it is determined to be in the best interest of the person). Current policies can be contrasted with eugenic era policies that legitimized sterilization under the police power. Elizabeth S. Scott, Sterilization of Mentally Retarded Persons: Reproductive Rights and Family Privacy, 1986 Duke L.J. 806, 809-10 (1986).

171 See, e.g., In re Hillstrom, 363 N.W.2d 871 (Minn. Ct. App. 1985) (describing the conditions that must be met before sterilization is permissible).

172 426 A.2d 467 (N.J. 1981).

173 Id. at 482-84.

174 Id. at 469-70.

175 Id. at 471.

176 Id. at 472-73.

177 600 N.W.2d 670 (Mich. App., 1999).

178 Id. at 680 (citations omitted).

179 See id. at 684.

Id.

180 Id. at 688-91 (discussing the history of eugenics, the legal system’s complicity in this movement, and the Third Reich).

181 Wertz, supra note 6, at 308.

182 Id.

183 For a discussion of eugenics-era cases on modern jurisprudence, see Merritt, Gilbert S., From the Scopes Trial to the Human Genome Project: Where is Biology Taking the Law?, 67 U. Cln. L. Rev. 365 (1999)Google Scholar; see also Lombardo, supra note 96.

184 Marouf Hasian Jr., Legal Memories and Amnesias in America’s Rhetorical Culture 109 (2000).

185 Id. at 125.

186 NY Task Force Report, supra note 9, at 79.

187 “Yet, of all the issues that must be considered [related to the Human Genome Project], 1 am most concerned with the impact of the genetic information revolution on our conception of human nature. There is a risk that we will lapse into a naive biological determinism.” Lander, supra note 1 at 187-88.

Wertz, supra note 6, at 307. Unlike during the eugenics period, today it is the scientists who are hesitant about the meaning of their findings, because they understand that they do not have a magic looking glass that predicts the future.

188 The, reliability of genetic information and its appropriate incorporation into insurance will be discussed in greater detail in Part IV.

189 Marouf Arif Hasian, Jr., The Rhetoric of Eugenics in Anglo-AMerican Thought 3 (1996).

190 Put another way, modern day efforts to distance ourselves from eugenics “give the impression that it is only the misunderstanding of technological knowledge that creates social hazards” and that correct science will support just policies. Id. at 4.

191 See CNN.COM, supra note 33.

192 Malinowski & O’Rourke, supra note 27, at 168:

193 See Jon Beckwith & Alper, Joseph S., Reconsidering Genetic Antidiscrimination Legislation, 26 J. Law Med. & Ethics 205, 207Google Scholar.

194 See infra Part V.D.

195 The improper application of genetic information is commonly referred to as “genetic discrimination.” Genetic discrimination seems to have become a catch phrase for any adverse insurance coverage decisions based on someone’s genetic profile. Whether the insidious concept of discrimination can be so globally applied to all actuarial decisions is the subject of various subsequent sections. See infra Parts IV.B, V.B, VI and VII.

196 See infra Part V.D.

197 Notable exceptions include the genetic privacy regulations promulgated attendant to the Health Insurance Portability Act (HIPAA) in 2000, 45 C.F.R. §§ 160, 164 (2001), and current legislation stymied in Senate and House committees on the use of genetic information in insurance. See infra Part V.D.2.

198 Medical Device Amendments of 1976, Pub. L. No. 94-295, 90 Stat. 539 (1976). The MDA have subsequently been amended three times, once in 1990 (Pub. L. No. 101-629, 104 Stat. 4511), again in 1992 (Pub. L. No. 102-300, 106 Stat. 238), and finally, in 1997 (Pub. L. No. 105-115, 111 Stat. 2296). The FDA had jurisdiction over medical devices since 1938, but originally had extremely limited oversight power. Richard A. Merrill, The Architecture of Government Regulation of Medical Products, 82 Va. L. Rev. 1753, 1800 (1996).

199 21 U.S.C.A. § 321(h) (West 2001). The FDA is the only agency authorized to regulate medical devices. See 21 U.S.C.A. § 360k(a) (West 2001 ) (including an express preemption requirement that no state “may establish or continue in effect with respect to a device intended for human use any requirement … which is different from, or in addition to, any requirement under” the Act). For a thorough discussion of FDA oversight of medical devices, see FDA v. Williamson Tobacco Corp., 520 U.S. 120, 125-61 (2000) and Medtronic, Inc. v. Lohr, 518 U.S. 470, 471-503 (1996).

200 “In vitro diagnostic products are those reagents, instruments, and systems intended for use in the diagnosis of disease or other conditions …. Such products are intended for use in the collection, preparation, and examination of specimens taken from the body.” 21 C.F.R. 809.3(a) (2001).

201 21 U.S.C.A. § 360c(a)(l) (West 2001).

202 For a brief description of determining substantial equivalence, see Assessing Genetic Risks, supra note 13, at 128-29.

203 21 U.S.C.A. § 321(h) (West 2001). In vitro diagnostics, “are … devices as defined in section … 201(h) … of the Federal Food, Drug, and Cosmetic Act… , and may also be a biological product subject to section 351 of the Public Health Service Act” and therefore under the FDA’s regulatory authority. 21 C.F.R. §201.119(a) (2001).

204 Genetic tests have two distinct but related diagnostic capacities. First, genetic tests test for the patient’s genotype, which indicates the absence or presence of a certain genetic mutation. Second, genetic tests can be used for genomic purposes. Genomics is a developing form of genetic diagnostic medicine that predicts which drug therapies will work for which patients. Advances in genomics mandate that a patient’s genetic profile will become an integral part of any patient’s medical record and a source of indispensable information in plotting medical treatment. Malinowski & O’Rourke, supra note 27, at 177.

205 For a sample list of Class I and II genetic tests see, e.g., Assessing Genetic Risks, supra note 13, at 129. There is also some concern that pharmaceutical companies will successfully convince the FDA that a genetic test that would normally be classified as a Class III device should instead be classified as a Class II device based on its alleged substantial equivalence to non-cytogenetic tests. Id. This has led to the Institute of Medicine’s recommendation that all genetic tests be classified as Class III devices. Id. at 139.

206 Malinowksi & Blatt, supra note 26, at 1229 n.61; see also Malinowksi & O’Rourke, supra note 26, at 206. Commentators have also noted that the considerable “mental and societal risks accompanying” genetic tests warrant Class III status. Id. at 218.

207 See Malinowski & Blatt, supra note 26, at 1219 and accompanying text.

208 See Assessing Genetic Risks, supra note 13, at 8-9.

209 The positive predictive value for predispositional tests is the source of some concern. See Huang, supra note 28, at 556 & 565 n.71. As one commentator noted, the “clinical utility of a positive test in a healthy individual is often still unclear at the time the tests become commercially available.” Id. at 565.

210 This is not to suggest that we should continue this insurance scenario. As will be discussed supra Part VII, one proposal would be to eliminate risk-based insurance.

211 See infra notes 265 and 267.

212 For instance, in testimony before the House Subcommittee on Technology, the FDA Deputy Commissioner stated that “[t]o date, the FDA has minimal involvement with genetic testing.” Huang, supra note 28, at 556 n.5.

213 Commentators have attributed the FDA’s reluctance to monitor genetic diagnostics at least in part regulatory inexperience with genetics. See Malinowksi & O’Rourke, supra note 27, at 167-68 (“[T]he Food and Drug Administration … [has] begun only recently to adapt their processes in a meaningful way to account for the unique risks and potentials for profit of genotechnologies.”).

214 Commentators have noted that the commercial development of genetic tests, as opposed to tests developed under traditional academic or research regimes, is relatively new and uncharted. See, e.g., Huang, supra note 28, at 560.

215 For instance, the FDA indicated that while “[cjurrently, FDA is not regulating testing; the agency maintains that it has such authority but lacks the resources to review the technology or make and enforce new regulations for the field.” F-D-C Reports, Inc., OncorMed BRCAI Testing Service Commercialization Enters Second Phase Through New IRB Protocol, The Blue Sheet, Jan. 17, 1996, at 6, 7. See Malinowski & Blatt, supra note 26, at 1215 n.10.

216 “[T]he agency’s lack of enthusiasm may stem from the intuition that regulation of genetic testing is a thankless task.” Huang, supra note 28, at 572. This criticism extends to genetic diagnostics:

Malinowksi and O’Rourke, supra note 27, at 178 (citation omitted).

217 Furthermore, FDA oversight is arguably not being encouraged. For instance, in the 1997 report issued by the Task Force on Genetic Testing created by the NIH, the role of the FDA in regulating genetic tests was left “surprisingly murky.” Huang, supra note 28, at 555.

218 Malinowski & Blatt, supra note 26, at 1237 n.82.

219 See Medtronic, Inc. v. Lohr, 518 U.S. 470, 495-503 (1996) (discussing preemptive effect of FDA regulation); Merrell Dow Pharms. v. Thompson, 478 U.S. 804, 830-32 (1996) (Brennan, J. dissenting) (discussing FDA interstate seizure power); Heckler v. Chaney et al., 470 U.S. 821, 837-38 (1985) (discussing need for seizure power to ensure national safety standards); United States v. Apex Distrib., 148 F. Supp. 365 (D.R.I. 1957). The U.S. Constitution, art. I, sect. 8, cl. 3 states that Congress has the power to “regulate Commerce … among the several States.” This power extends to the “channels” of interstate commerce, the “instrumentalities” of interstate commerce and activities having a “substantial relation” to interstate commerce, see United Slates v. Lopez, 514 U.S. 549, 558 (1995) (discussing the scope of the commerce clause).

220 “FDA currently regulates the safety and effectiveness of diagnostic tests that are traditionally manufactured and commercially marketed as finished products. However, in-house developed tests have not been actively regulated by the Agency and the ingredients used in them generally are not produced under FDA assured manufacturing quality control.” 61 Fed. Reg. 10,484, 10,484 (Mar. 14, 1996).

221 Huang, supra note 28, at 587 (“Biotechnology companies who package the test as a kit to be distributed to laboratories and physicians are subject to FDA regulation.”).

222 See, e.g., Malinowski & Blatt, supra note 26, at 1230.

223 Huang, supra note 28, at 587 (“Companies and laboratories that deliver the testing as a service, sometimes by accepting samples through the mail, are not subject to any regulations to ensure safety and effectiveness [under the FDA]”.).

224 Id. at 556.

225 Id. at 585; see also Malinowski & O’Rourke, supra note 27, at 178-79.

226 Malinowski & Blatt, supra note 26, at 1230-31 (explaining that diagnostic tests can also be marked as for “research use only,” which means that the test has no established clinical utility and is only intended to be used to further scientific research).

227 Huang, supra note 28, at 557.

228 42 U.S.C. § 263(a) (1994). Under CLIA 88, “only the technical competence of a laboratory’s testing is regulated.” Huang, supra note 28, at 587. For additional state laboratory regulations, see Assessing Genetic Risks, supra note 13, at 118-24.

229 Malinowski & Blatt, supra note 26, at 1231. By one estimate, over 200,000 laboratories were being monitored by the mid-1990s. Assessing Genetic Risks, supra note 13, at 125.

230 Assessing Genetic Risks, supra note 13, at 125.

231 Id. at 126. In response, the Institute of Medicine recommends that all genetic tests be classified as highly complex to ensure proper training of those performing the tests as well as to trigger additional regulatory oversight. Id. at 138.

232 Huang, supra note 28, at 589.

233 Malinowski & Blatt, supra note 26, at 1231-32. Interestingly, CLIA 88 has been targeted as another possible source of additional oversight of genetic testing clinical validity by amending the statute. NY Task Force Report, supra note 9, at 320.

234 Malinowski & Blatt, supra note 26, at 1233.

235 See, e.g., Malinowksi & O’Rourke, supra note 27, at 239.

236 Malinowski & Blatt, supra note 26, at 1219. “There seems to be little disagreement that some authority should determine that genetic tests being offered as services have positive predictive value for the disorder being tested.” Huang, supra note 28, at 580. “Before individuals and society are asked to go ‘where angels fear to tread,’ however, it seems reasonable to ensure at least that the momentous consequences provoked will flow from information sufficient and reliable enough to make a basic scientific determination.” Id. at 570.

237 Indeed, the FDA seems to recognize that it has jurisdiction over laboratory testing services, but seems reluctant to engage in such regulation. See Malinowski & Blatt, supra note 26, at 1235; see also discussion supra note 219; infra note 248 and accompanying text.

238 As recently as 1996, there was cause for optimism that the FDA would begin to regulate genetic tests more aggressively, when indicated that it was proposing to regulate the “active ingredients” used home brew tests. While the FDA declined to propose a “comprehensive regulatory scheme” for the final tests, it did indicate that at a “future date, the agency may reevaluate whether additional controls over the in-house tests developed by [home brew] laboratories may be needed … Medical Devices; Classification/Reclassification; Restricted Devices; Analyte Specific Reagents, 61 Fed. Reg. 10484, 10,484 (Mar. 14, 1996). However, in a final rule published in 1997, the FDA announced it did not intend to regulate the tests. While the FDA did consider “designating as class III devices those ASRs that would be marketed independently for use in tests intended for use in overtly healthy people to identify a genetic predisposition to a dementing disease, or to fatal or potentially fatal medical disorders,” it ultimately determined that it lacked “identified criteria” to distinguish genetic tests requiring stricter review. More troubling is that the FDA indicated it had “determined that the special issues related to genetic testing … do not warrant establishing a more stringent degree of regulatory control … at this time.” Medical Devices; Classification/Reclassification; Restricted Devices; Analyte Specific Reagents, 61 Fed. Reg. 62,243, at 62,245-46 (Nov. 21, 1997) (codified at 21 C.F.R. §§ 809, 864). Despite this retreat, some tests are being more carefully regulated. Huang, supra note 28, at 558 n.21. For a general overview of the possible statutory and regulatory revisions that would assist the FDA in expanding its oversight, see Malinowksi & O’Rourke, supra note 27, at 217 23.

239 Malinowski & Blatt, supra note 26, at 1236.

240 21 C.F.R. § 809.30(b)(1), (3) (2001). There are also special allowances for Veterans Health Administration facilities. 21 C.F.R. § 809.30(b)(2) (2001).

241 21 C.F.R. §§ 809.10(e), 809.30, 864.4010-4020 (2001).

242 Assessing Genetic Risks, supra note 13, at 117-18.

243 Malinowski & Blatt, supra note 26, at 1235 n.79. See generally note 238 for a discussion on the FDA’s current reluctance of classify ASR’s used for genetic testing as Class III devices.

244 21 U.S.C. § 321(h)(2) (2000).

245 Courts have recognized jurisdiction similarly in the context of drugs and animal biologies. Huang, supra note 28, at 577-78.

246 See supra Part II; Malinowski & Blatt, supra note 26 and accompanying text. For a general discussion of medical device labeling, see Basile, Edward M. et al., Medical Device Labeling and Advertising: An Overview, 54 FOOD & DRUG L.J. 519 (1999)Google ScholarPubMed.

247 See, e.g., Huang, supra note 28, at 577.

248 See id. at 576.

249 Western Union Tel. Co. v. Foster, 247 U.S. 105 (1918).

250 Huang, supra note 28, at 579.

251 Pub. L. No. 101-336, 104 Stat. 327 (codified at 42 U.S.C. §§ 12101-12213).

252 42 U.S.C. § 12101(b) (1994).

253 42 U.S.C. §§ 12112(a)-(b) (1994):

254 See, e.g., Weyer v. Twentieth Century Fox Film Corp., 198 F.3d 1104, 1107 (9th Cir. 2000); EEOC v. Staten Island Sav. Bank, 207 F.3d 144, 145 (2d Cir. 2000).

255 A plaintiff must first demonstrate that she is disabled and then she must show that she “with or without reasonable accommodation can perform the essential functions” of her employment obligations. Weyer, 198 F.3d at 1107 (quoting 42 U.S.C. § 12111 (8) (2000)).

256 Jennifer S. Geetter, The Condition Dilemma: A New Approach to Insurance Coverage of Disabilities, 37 Harv. J. ON Legis. 521, 526 (2000).

257 Efforts to bring such suits on behalf of disability insurance have been complicated by a circuit split over whether a plaintiff has a colorable Title I claim if she was able to perform her job responsibilities when hired but later became increasingly disabled and unable to work.

258 42 U.S.C. §§ 12182(b)(2)(A)(i-v) (1994).

259 See 42 U.S.C. § 12183(a)(1) (1994) (requiring that public and commercial facilities are “readily accessible to and usable by individuals with disabilities”).

260 Geetter, supra note 256, at 528.

261 See, e.g., McNeil v. Times Ins. Co., 205 F.3d 179, 188 (5th Cir. 2000); Ford v. Schering- Plough, Corp., 145 F.3d 601, 612-13 (3d Cir. 1998); Parker v. Metro. Life Ins., 121 F.3d 1006, 1011 (6th Cir. 1997). For a lengthy discussion of why Title III should only apply to ingress and egress, see Sobota, Luke A., Note, Does Title III of the Americans with Disabilities Act Regulate Insurance?, 66 U. Chi. L. Rev. 243 (1999)CrossRefGoogle Scholar.

262 David Orentlicher, Rationing and the Americans with Disabilities Act, 271 JAMA 308, 309-10 (1994).

263 See, e.g., Doe v. Mutual of Omaha Ins. Co., 179 F.3d 557, 559 (7th Cir. 1999).

264 See, e.g., Pallozzi v. Allstate Life Ins. Co., 198 F.3d 28, 31 (2d Cir. 1999) (noting that insurance policies are the “most conspicuous ‘goods’ and ‘services’ provided by” an insurer); Karen M. Volkman, The Limits of Coverage: Do Insurance Policies Obtained Through an Employer and Administered by Insurance Companies Fall within the Scope of Title III of the Americans with Disabilities Act?, 43 ST. LOUIS U. L.J. 249, 261 (1999).

265 42 U.S.C. § 12201(c) (1994).

266 See, e.g., Doe, 179 F.3d at 562 (noting that it might be subterfuge to refuse to sell health insurance to a disabled person or to offer a policy designed with high premiums or low coverage benefits to deter a disabled person from purchasing the policy); Pallozzi v. Allstate Life Ins. Co., 198 F.3d 28, 34-35 (cautiously considering that the ADA does regulate underwriting in some circumstances); Carparts Distrib. Ctr., Inc. v. Automotive Wholesaler’s Ass’n of New Eng., Inc., 37 F.3d 12, 20 (1st Cir. 1994) (raising the issue of whether Title III governs the content of insurance policies without deciding).

267 See Jerry, Robert H., II, Health Insurers ’ Use of Genetic Information: A Missouri Perspective on a Changing Regulatory Landscape, 64 Mo. L. Rev. 759, 781 (1999)Google Scholar (“Absent further guidance from the regulators or Congress, this issue must await clarification by the courts.”).

268 See Rothstein, supra note 5, at 341-42. In a Senate hearing on the genetic discrimination legislation discussed in infra Part V.D, the EEOC suggested that although it is currently unclear, Title I of the ADA might cover genetic discrimination. Protecting Against Genetic Discrimination: The Limits of Existing Laws Before the Sen. Comm, on Health, Ed., Labor, and Pensions, 107th Cong. (Feb. 13, 2002), available at http://www.senate.gov/~labor/Hearings-2002/hearings-2002.htm (statement by Cari M. Dominguez, Chair of the EEOC). In 2001, the EEOC sought a preliminary injunction under the ADA against an employer that required genetic testing of employees who filed claims for work-related injuries based on carpal tunnel syndrome. The parties settled in April and the employer agreed not to require genetic tests of its employees. Press Release, U.S. Equal Employment Opportunity Comm., EEOC Settles ADA Suit Against BNSF for Genetic Bias (Apr. 18, 2001), available at http://www.eeoc.gov/press/4-18-01.html.

269 524 U.S. 624 (1998).

270 See id. at 631.

271 Id. at 637.

272 id. at 638-39.

273 id. at 638.

274 id. at 640-41.

275 The majority may have been relying less on strict doctrinal precedent and more on a common sense approach to the ADA, nicely quipped by Justice Ginsburg: “No rational legislator … would require nondiscrimination once symptoms become visible but permit discrimination when the disease, though present, is not yet visible.” Bragdon, 524 U.S. at 656 (Ginsburg, J., concurring). Attending to the “spirit” of the ADA rather than its specific statutory requirements may afford greater leeway for covering genetic conditions, but might not find sympathy in this less liberal Court. Cf. Rothstein, supra note 268, at 347 (“[T]his Court does not tend to rely on public health policy as the basis for its holdings.”). “[T]he very fact that the issues had to be decided by the Supreme Court and that only five justices joined the majority, shows the fragility of legal rights… [and] the wide gulf between the perspectives of public health and those of public law.” Wendy E. Parmet, The Supreme Court Confronts HIV: Reflections on Bragdon v. Abbott, 26 J.L. Med. & Ethics 225, 225 (1998).

276 Eugenia Liu, Bradgon v. Abbott: Extending the Americans with Disabilities Act to Asymptomatic Individuals, 3 J. Health Care L. & POL’Y 382, 389 (2000).

277 Christiana M. Ajalat, Is HIV Really A “Disability”?: The Scope of the Americans with Disabilities Act After Bradgon v. Abbott, 22 Harv. J.L. & Pub. Pol’y 751, 767-68 (1999).

278 See, e.g., id.’, Liu, supra note 276; Parmet, supra note 275; Rothstein, supra note 268.

279 Bragdon, 524 U.S. at 658 n.2. “Respondent’s argument, taken to its logical extreme, would render every individual with a genetic marker for some debilitating disease ‘disabled’ here and now because of some future effects.” Id. at 661 (Rehnquist, C.J., concurring in part and dissenting in part).

280 Albertson’s, Inc. v. Kirkingburg, 527 U.S. 555 (1999); Murphy v. United Parcel Serv., Inc., 527 U.S. 516 (1999); Sutton v. United Air Lines, Inc., 527 U.S. 471 (1999).

281 Sutton, 527 U.S. at 484-87.

282 “Bragdon does not clearly ensure that genetic discrimination is included within the analysis applying to HIV-positive status. The five-to-four opinion, when combined with the language in the dissent, indicates that the Supreme Court has already gone about as far as it is prepared to go on this issue.” Rothstein, supra note 268 at 347.

283 Liu, supra note 276, at 392-93.

284 For instance, a woman with a BRCA1 or BRCA2 gene (both of which are dominant) has a 50% chance of passing along an elevated risk for breast cancer to her female offspring. Liu, supra note 276, at 397. In order to succeed on her ADA claim, however, this plaintiff would further have to establish that cancer (once it developed) would constitute a disability under the ADA. This may be difficult. Rothstein, supra note 268, at 338-39. If the genetic condition requires two alleles, in other words it is a recessive condition, to create the predisposition, the rate of transmission will only be 25% because the other partner would also have to pass along the undesirable trait. See generally Holmes supra note 75, at 29-39.

285 Sutton, 527 U.S. at 482.

286 But see Liu, supra note 276, at 402-03.

287 Id. at 393-94.

288 Id. at 394.

289 At least one commentator has tried to escape this limitation by arguing that a genetic abnormality is a physical impairment because a “defect in a specific chromosome can be identified as the beginning of a genetic disease process in the same way as infection is identified as the beginning of a contagious disease process.” Lawrence 0. Gostin, Genetic Discrimination: The Use of Genetically Based Diagnostic and Prognostic Tests by Employers and Insurers, 17 Am. J.L. & Med. 109, 126 (1991). This approach, however, is unlikely to be effective given the Court’s emphasis on scientific evidence documenting the physical changes that take place immediately after HIV infection in Bragdon. Liu, supra, note 276, at 393 (citing Bragdon v. Abbott, 524 U.S. 624, 635 (1995)).

290 At least one circuit has extended protection for a physical impairment that “encompasses disorders and conditions ‘whose precise nature is not at present known’”. Cook v. Rhode Island, Dep’t. of Mental Health, Retardation, and Hosps., 10 F.3d 17, 22 (1st Cir. 1993) (quoting 45 C.F.R. § 84.3(j)(2)(iv)). Such fluidity in the definition of physical impairment might secure coverage for people with genetic abnormalities.

291 Interestingly, at least one commentator has argued that reproduction is more limited for genetic conditions than for HIV because at present assisted reproductive technologies might allow an HIV female to have a child without endangering her child or her partner. George J. Annas, Protecting Patients from Discrimination - The Americans with Disabilities Act and HIV Infection, 339 NEW Eng. J. Med. 1255, 1257 (1998).

292 Liu, supra note 276, at 403.

293 Id. at 404.

294 A similar concern was raised by gay advocates in response to the efforts of some scientists (and advocates) to find the “gay gene.” Advocates worried that “essentialist arguments of biological causation will work against constitutional rights and encourage ‘the development of anti-gay eugenics.’” NELKIN & LINDEE, supra note 5, at 122 (quoting Janet Hailey).

295 Id. at 174-78 (discussing the fear that genetic predispositions and prenatal testing stigmatize the disabled and categorize them as lives not worth living).

296 For a discussion of these concerns, see Mary Anne Bobinski, Genetics and Reproductive Decision Making, in The Human Genome Project and The Future of Health Care 79, 84-85 (Thomas H. Murray et al. eds., 1996). This is eerily reminiscent of eugenic optimism in preventing abnormal births: “In the future, as science is able to determine more exactly that certain normal persons are hereditary carriers of the defects, it will be equally reasonable to propose that their reproduction be limited in proportion to the scientific probability of their having defective children.” AM. EUGENICS Soc., American Eugenics Today 7 (1939).

297 Cook v. Rhode Island, Dep’t. of Mental Health, Retardation, and Hosps., 10 F.3d 17, 23 (1st Cir. 1993).

298 Liu, supra, note 276, at 404-05.

299 Rothstein, supra note 268, at 350.

300 Id. at 350.

301 According to the U.S. Census Bureau, 15.5% of the population lacked health insurance for the entire 1999 calendar year. This means that roughly 42,554,000 Americans lacked health insurance. U.S. Census Bureau, Health Insurance Coverage, Table 1, available at http://www.census.gov/ hhes/www/hlthinOO.html (last revised Dec. 6, 2001).

302 James C. Robinson, The Corporate Practice of Medicine: Competition and Innovation in Health Care 55 (1999).

303 According to the U.S. Census Bureau, 62.8% of covered individuals had employment based health insurance. U.S. Census Bureau, supra note 301, Table 1. This means that 85-90% of insured Americans receive health insurance through an employer group plan. NY Task Force Report, supra note 9, at 289.

304 According to the U.S. Census Bureau, 24.1% of insured individuals have government- sponsored insurance. A small portion of the govemmentally insured (3.1%) have military healthcare; the rest are insured through Medicare and Medicaid, programs primarily servicing the elderly, the poor and the disabled. U.S. Census Bureau, supra note 301, Table 1.

305 According to the U.S. Census Bureau, 8.2% of private insurance is not garnered through an employer, representing the number of self-insuring individuals. U.S. Census Bureau, supra note 301, Table 1. This means that roughly 10-15% of the insured population has individual insurance. NY Task Force Report, supra note 9, at 286.

306 p_or examples of state restrictions on medical underwriting, NY Task Force Report, supra note 9, at 286.

307 See infra Part V.B.

308 NY Task Force Report, supra note 9, at 289.

309 Id.

310 Stone, supra note 19, at 144.

311 According to one estimate, 36% of insured workers are employed by companies where individual underwriting is common. Id. at 144-45.

312 Id. at 145.

313 NY Task Force Report, supra note 9, at 289.

314 While under these plans an insurance company is allowed to raise an individual enrollee’s premium based on hazardous habits or an at-risk profile, “most types of health insurance are sold to groups; therefore, basing premiums on the individual’s health hazardous behavior is difficult.” Amy Darby, The Individual, Health Hazardous Lifestyles, Disease and Liability, 4 Depaul J. Health Care L. 787, 795 (1999); Assessing Genetic Risks, supra note 13, at 268 (noting that “medical underwriting is not generally done as part of large employer’s group policies”). But see Stone, supra note 19, at 144-45 (noting that estimates of the prevalence of medical underwriting are misleadingly low).

315 Stone, supra note 19, at 145 (citing the various ways that insurers can effectively limit the coverage they offer to high-risk individuals).

316 Id. at 146 (noting that a 1987 Office of Technology Assessment survey found that due to medical underwriting 8% of applicants were rejected, 13% had coverage exclusions, and 2% had higher premiums).

317 Assessing Genetic Risks, supra note 13, at 239.

318 Darby, supra note 314, at 794.

319 Id.

320 There is significant concern that employers may wish to begin genetically testing prospective employees before extending employment offers. NY Task Force Report, supra note 9, at 296.

321 See NY Task Force Report, supra note 9, at 286.

322 See infra Part V.D.

323 29 U.S.C. §§ 1001-1461 (1994).

324 FMC Corp. v. Holiday, 498 U.S. 52 (1990) (distinguishing self-insured health plans and holding them exempt from state regulation); Shaw v. Delta Airlines, 463 U.S. 85 (1983) (holding that ERISA preempts state regulations of employee benefits).

325 McGann v. H & H Music, 946 F.2d 401 (5th Cir. 1991) (upholding a self-insured plan under ERISA that refused to cover care for AIDS). For a discussion of McGann and its implications for insurance coverage under ERISA, see Sohlgren, Eric C., Group Health Benefits Discrimination Against AIDS Victims: Falling Through the Gaps of Federal Law-ERISA, the Rehabilitation Act and the Americans with Disabilities Act, 24 Loy. L.A. L. Rev. 1247 (1991)Google Scholar.

326 Darby, supra note 314, at 796 (also noting that between 1982 and 1986, there was a 20% increase in self-insured plans).

327 See Henry J. Aaron, Serious and Unstable Condition 34 (1991) (The Brookings Institution, 1991) (noting that the “average costs of large groups deviate less around the average for a community than do the costs of small groups”); see also text accompanying note 314.

328 Rothstein, supra note 5 at 233. See also Sohlgren, supra note 325.

329 Pub. L. No. 104-191, 110 Stat. 1936 (1996). HIPAA covers any “group health plan” which is defined as “an employee welfare benefit plan to the extent that the plan provides medical care … to employees or their dependents … directly or through insurance, reimbursement, or otherwise.” (29 U.S.C. § 1191b(a)(l) (1994)). A group health plan, here defined, refers to an ERISA-type plan, for instance a self-insured plan. Second, HIPAA covers “health insurance issuer(s) offering group health insurance coverage” (29 U.S.C. § 1181(a) (Supp. Ill 1997) which is defined as “an insurance company, insurance service, or insurance organization … which is licensed to engage in the business of insurance in a State and which is subject to State law which regulates insurance.” 26 U.S.C. § 9832(b)(2) (Supp. III 1997).

330 Jerry, supra note 267, at 773 (noting “HIPAA’s goal of increasing the portability of group health insurance plans by limiting the effectiveness of preexisting condition exclusions”).

331 A preexisting condition exclusion is defined as a “limitation or exclusion of benefits relating to a condition based on the fact that the condition was present before the date of enrollment for such coverage, whether or not any medical advice, diagnosis, care, or treatment was recommended or received before such date.” 26 U.S.C. § 9801(b)(1)(A) (2001).

332 “Many people worry about coverage for preexisting conditions, especially when they change jobs.” Health Ins. Ass’n of Am., Guide to Health insurance, at http://www.hiaa.org/consumer/guide hi.cfm (last visited Mar. 24, 1999).

333 HIPAA contains a complicated set of rules. Essentially, “insurers could impose only one 12- month waiting period for any preexisting condition treated or diagnosed in the previous six months. [One’s] prior health insurance coverage will be credited toward the preexisting condition exclusion period as long as [one has] maintained continuous coverage without a break of more than 62 days.” Furthermore, if one has “had group health coverage for two years, and … switchfes] jobs and go[es] to another plan, that new health plan cannot impose another preexisting condition exclusion period.” Id.

334 NY Task Force Report, supra note 9, at 286.

335 “Genetic information” is not defined in the statute, but as one commentator explains, the structure of HIPAA suggests that the term does not include medical history information “notwithstanding the irony that such a conclusion entails.” Jerry, supra note 267, at 776.

336 “[G]enetic information shall not be treated as a condition … in the absence of a diagnosis of the condition related to such information.” 26 U.S.C.S. § 9801(b)(1)(B) (2001). However, it is “unclear whether a diagnosis of a predisposition to a health condition related to the genetic information in circumstances where the person is asymptomatic at the time of the diagnosis falls within the exception.” Jerry, supra note 267, at 774.

337 26 U.S.C. § 9802(a)(1) (1994).

338 Jerry, supra note 267, at 778.

339 Id. at 778-79.

340 “[T]he term ‘discrimination’ misconstrues the method and use of genetic information by insurers. Insurance is essentially a system based on fair ‘discrimination’ and selection.” Meredith A. Jagutis, Insurer's Access to Genetic Information: The Call for Comprehensive Federal Legislation, 82 Marq. L. REV. 429, 435 (1999).

341 See, e.g., Merriam-Webster’s Collegiate Dictionary 12 (10th ed. 1998) (defining actuarial “relating] to statistical calculation especially] of life expectancy”).

342 Black’s Law Dictionary 36 (6th ed. 1990) (defining “actuarial table” as a “form of organized statistical data which indicates the life expectancy of a person …. Such tables are used by insurance companies in determining premiums”).

343 Assessing Genetic Risks, supra note 13, at 252. Mark A. Hall, Insurers’ Use of Genetic Information, 37 JURIMETRICS J. 13, 16-17 (1996) (Actuarial fairness is also defined by “accurate risk appraisal.” Under the concept of actuarial fairness, that an applicant is “not responsible for the [medical] misfortune” lacks any relevance; unfairness occurs when “the genetically advantaged” are charged higher premiums “in order to lower costs for the genetically disadvantaged.”).

344 Smith & Bums, supra note 36, at 27. See also Jagutis, supra note 340, at 432-33 (“Too much information may destroy the central function of insurance - spreading risk - because there is no risk if an individual knows his or her future to some degree of reasonable certainty.”). However, adverse selection is not considered to be as serious a problem in health insurance as it is presumed to be for life and disability insurance. Thomas H. Murray, The Genome and Access to Health Care: Two Key Ethical Issues, in THE Human Genome Project and The Future of Health Care 217 (Thomas H. Murray et al. eds., 1996).

345 Beckwith & Alper, supra note 193, at 206 (“Studies of genetic discrimination have shown that, in a significant number of cases, applications for insurance policies were rejected for reasons that reflect serious misunderstandings of genetic disease.”).

346 See supra Part IV.A.4-5.

347 See text accompanying supra note 284.

348 See supra note 20 and accompanying text.

349 For a description of Current Procedural Terminology (CPT) codes generally and specifically related to genetic testing, see NY Task Force Report, supra note 9, at 375-78. Forward-thinking insurers may also consult the recommendations of professional medical associations in deciding whether to cover genetic tests. For instance, Aetna has based its breast cancer genetic testing policy on the American College of Medical Genetics recommendations. See, e.g., AETNA, Coverage Policy Bulletins, no. 0227, BRCA Testing, Prophylactic Mastectomy, Tamoxifen, and Prophylactic Oophorectomy for Women at Risk for Breast and Ovarian Cancer (Mar. 05, 2002), at http://www.aetna.com/cpb/data/CPBA0227.html.

350 Genetic services are expected to raise healthcare expenditures. Mehlman, supra note 4, at 116. There is however, evidence that in the last five years insurers have increasingly begun to include reimbursement for genetic testing in coverage packages. NY Task Force Report, supra note 9, at 378-79.

351 Reuters, Genes and Discrimination, Gore Urges Laws Banning Bias in Hiring and Insurance, Newsday, Jan. 21, 1998 at A20.

352 See supra note 10.

353 See infra note 456 and accompanying text.

354 See Jagutis, supra note 340, at 435.

355 Mark A. Hall, Legal Rules and Industry Norms: The Impact of Laws Restricting Health Insurers’ Use of Genetic Information, 40 Jurimetrics J. 93, 98 (1999); Jerry, supra note 267, at 760; Wertz, supra note 6, at 310.

356 See, e.g., Beckwith & Alper, supra note 193, at 205 (noting that beginning a decade ago, “the results of some preliminary studies investigating genetic discrimination did exist… and posed a significant threat to the insurability of potentially millions of people”); Paul R. Billings et al., Discrimination as a Consequence of Genetic Testing 50 Am. J. Hum. Genetics 476, 476 (1992); E. Virginia Lapham et al., Genetic Discrimination: Perspectives of Consumers, 274 Science 621, 621 (1996); NY Task Force Report, supra note 9, at 72 (noting that while “[d]efinitive data are lacking and are difficult to document, … most practitioners and professional organizations acknowledge that such concerns are well founded”).

357 Beckwith & Alper, supra note 193, at 206 n.9.

358 Assessing Genetic Risks, supra note 13, at 235.

359 See id. (discussing consequences of seeking reimbursement for genetic testing and the costs associated, financially and otherwise, in order to restrict insurers from receiving test results).

360 NY Task Force Report, supra note 9, at 281-2.

Id. “The principle reason genetic tests are not used today is that they are not believed to be cost- effective. Once the price of tests drops, as seems certain, and the actuarial data on the tests’ predictive abilities accumulates, the tests will become cost-effective and therefore attractive to insurers.” Murray, supra note 344, at 219.

361 Stone, supra note 19, at 133.

362 The National Human Genome Research Institute web site lists state legislation regarding insurance discrimination enacted as of July 26, 2001, at http://www.nhgri.nih.gov/Policy_and_public_ affairs/Legislation/insure.htm (last visited Mar. 21, 2002). See Mulholland, William F., Genetic Privacy and Discrimination: A survey of State Legislation, 39 Jurimetrics J. 317, 317 (1999)Google ScholarPubMed (cataloguing state statutes). See also Gostin, Lawrence O. & Hodge, James G., Jr., Genetic Privacy and the Law: An End to Genetics Exceptionalism, 40 Jurimetrics J. 21, 23 (1999)Google Scholar.

363 John V. Jacobi, The Ends of Health Insurance, 30 U.C. DAVIS L. REV. 312, 335 (1997) (citation omitted).

364 For a superb overview of statutory proscriptions against the use of genetic information in health insurance, see Mulholland & Jaegar, supra note 362.

365 The federal government has also begun to consider genetic anti-discrimination statutes. See infra note 490. For instance, on July 15, 1999 the Senate passed the Patients’ Bill of Rights Plus Act, S. 1344. This bill parallels the variety of state statute protections described in this section and suffers from the same definitional and outcome infirmities discussed, infra Part Vl.A.

366 Gostin & Hodge, supra note 362, at 48-49. See also Patricia Roche et al., The Genetic Privacy Act: A Proposal for National Legislation, 37 Jurimetrics J. 1, 4-5 (1996) (describing proposed federal legislation with significant restrictions on collecting and retaining genetic information).

367 See Gostin & Hodge, supra note 362, at 49-51.

368 For an additional list of state statutes that narrowly define genetic information and genetic test, see Jerry, supra note 267; Mulholland & Jaegar, supra note 362 at 784 n.95 (citing Colo. Rev. State. Ann. § 58-3-125 (West 1999); Fla. Stat. Ann. § 627.4301 (West Supp. 1999); GA. Code Ann. § 33-54-2 (1996); Md. Code. Ann., Ins. § 27-909 (Supp. 1999); Minn. Stat. Ann. § 72A.139 (West 1999); Nev. Rev. Stat. § 689C.198 (1997)); Gostin & Hodge, supra note 362, at 51 nn.130-131 (citing Cal. Health & Safety Code § 124980j (West 1996); Ga. Code Ann. § 33-54-5 (1995); Tex Lab. Code Ann. § 21.401(2) (Vernon 1997)).

369 See, e.g., Jerry, supra note 267, at 785 n.96 (citing S.B. 1165, 44th Leg. 1st Sess. (Ariz. 1999)).

370 Cal. Ins. Code § 10123.3(d) (West Supp. 1999).

371 See, e.g., Colo. Rev. Stat. § 10-3-1104.7 (2001).

372 Mulholland & Jaegar, supra note 362, at 318 n.8 (citing Alaska Stat. § 21.54.100 (Michie 1998); Mont. Code. Ann. § 627.4301 (West 1998)).

373 Mulholland & Jaegar, supra note 362, at 318 n.9 (citing Conn. Gen. Stat. § 38a-816 (West Supp. 1998); Ala. Stat. Ann. § 627.4301 (West 1998)).

374 MO. Ann. Stat. § 375.1303 (West 2002).

375 Jerry, supra note 267, at 770 n.28 (citing also 410 Ill. Comp. Stat. Ann. 513/20 (West 1997); Ind. Code. Ann. § 27-8-26-9 (Michie 1994)).

376 Jerry, supra note 267, at 770-71 (noting that proverse selection can be understood as a corollary to adverse selection and defining it as the “tendency of low-risk insureds to depopulate the risk pools when given an opportunity to opt into classifications that offer more coverage or a reduced premium, or both”).

377 Mark A. Rothstein, Genetic Privacy and Confidentiality: Why They Are So Hard to Protect, 26 J. L. Med. & Ethics 198, 199 (1998).

378 S. 318, 107th Cong. (2002); H.R. 602, 107th Cong. (2002), available at http://thomas.loc.gov/bss/dl07/dl07bill.html. Currently, no Republicans are co-sponsoring the Senate bill, but twenty-six Democrats are listed as co-sponsors.

379 Id.

380 Genetic Nondiscrimination in Health Insurance and Employment Act, S.318, 107th Cong. § 102(b)(2) (2001).

381 id.

382 id. at § 101(a)(2)(A).

383 id. at § 201(5)(A).

384 Id. at § 201(6).

385 id. at § 101(f).

386 Genetic Information Nondiscrimination Act, S. 1995, 107th Cong. (2002).

387 Id. at §101.

388 Id.

389 Even the National Association of Health Underwriters (NAHU) applauded the Snowe Bill’s narrow definition of genetic tests. “Using too broad a definition could disrupt normal underwriting procedures, increasing costs and resulting in unaffordable health insurance for employers and consumers.” Press Release, Nat’l Assoc. Health Underwriters, NAHU Encourages Direction of (Mar. 13, 2002), available at http://www.nahu.org/news.

390 News Release, President Pleased with Health Insurance Bill (Mar. 6, 2002), at http://www.whitehouse.gov/news/releases/2002/03/. President Bush has said that genetic discrimination is unfair to workers and their families. However, he favors a cap on damages. Ed Timms, Genetic Discrimination Condemned, DALLAS Morning News, June 24, 2002, at 4A. Bush has also stated, "Just as our nation addressed discrimination based on race, we must now prevent discrimination based on genetic information.” News Release, President Bush Outlines Health Care Agenda (Feb.ll, 2002), at http://www.whitehouse.gov/news/releases/2002/03/.

391 The full text of statements made before the Senate Committee on Health, Education, Labor, and Pensions on Feb. 13, 2002, are available at http://www.senate.gov/~labor/Hearings-2002/hearings-2002.htm. Hearings were held in the House Subcommittee on Employer-Employee Relations on July 24, 2001 and Sept. 6, 2001. The statements made in the respective hearings are available at http://www.gpo.gov/congress/house/house06chl07.html.

392 Daschle Outlines a Post-Recess Agenda, Nat’l J.S Cong. Daily, Mar. 19, 2002.

393 Mark Hofmann, Panel Views Threat of Genetic Bias in Jobs, BUS. Ins., Feb. 2002, at 2. Cari Dominguez, Chair of EEOC, maintains that the legislation should be “consistent with existing discrimination statutes.” Protecting Against Genetic Discrimination: The Limits of Existing Laws Before. (Feb. 13, 2002), available at http://www.senate.gov/~labor/Hearings-2002/hearings-2002.htm (statement by Cari Dominquez). The Snowe bill, by contrast, limits remedies to those available under the civil Rights Act of 1964. Genetic Information Nondiscrimination Act at § 207.

394 See, e.g., Protecting Against Genetic Discrimination: The Limits of Existing Laws Before the Sen. Comm, on Health, Ed., Labor, and Pensions, 107th Cong. (Feb. 13, 2002) (statement by Joanne Hustead, Institute of Health Care Research and Policy).

395 45 C.F.R. §§ 160.101-160.312 (2000). The text of the final regulation is available at http://www.hhs.gov/ocr/hipaa/finalreg.html (last visited Mar. 21, 2002).

396 Protecting Against Genetic Discrimination: The Limits of Existing Laws Before the Sen. Comm, on Health, Ed., Labor, and Pensions, 107th Cong. (Feb. 13, 2002) (statement by Bobby Jindal, U.S. Dep’t of Health & Human Servs.).

397 See discussion infra Part VI.

398 See infra Part VI.D.

399 See supra Part V.D (discussing state plans); infra Part VI.A-C (discussing genetic exceptionalist policies).

400 See NY Task Force Report, supra note 9.

401 George J. Annas, Genetic Privacy: There Ought to be Law, 4 Tex. Rev. L. & POL. 9, 9-12 (1999); Ronald M. Green & A. Mathew Thomas, DNA: Five Distinguishing Features for Policy Analysis, 11 Harv. J.L. & TECH. 571, 572-76 (1998).

402 Green & Thomas, supra note 401, at 577-78.

403 Id. at 579-80.

404 Id. at 579-84; Annas, supra note 401, at 11-12; NY Task Force Report , supra note 9, at 243; Wertz, supra note 6, at 300 (“[W]e now can differentiate an individual’s genotype … from the phenotype … and we can make predictions about the health of other family members … .”).

405 See, e.g., Annas, supra note 401, at 12 (analogizing to eugenics); Green & Thomas, supra note 401, at 584-87.

406 NY Task Force Report, supra note 9, at 243.

407 Green & Thomas, supra note 401, at 572.

408 Annas, supra note 401, at 13-14 (discussing concerns with the generation and collection of genetic information).

409 Green & Thomas, supra note 401, at 574-75.

410 id. at 575.

411 Id. at 576.

412 Id. at 590 (“Risk classification schemes also neglect to account for the possibility of disease prevention through the early identification and treatment of a genetic disorder.”).

413 Smith & Bums, supra note 6, at 25.

414 Id.

415 Ronald M. Green, Genetic Medicine and the Conflict of Moral Principles, 17 Fam. Sys. & Health 63 (1999) (citing M. A. Mullen, The New Human Genetics: Ethical Issues and Implications for Public Policy, 96 Kan. Med. 55 (1995)).

416 NY Task Force Report, supra note 9, at 243.

417 See Green & Thomas, supra note 401 at 577.

418 See, e.g., Eleanor Mayfield, New Hope for People with Sickle Cell Anemia, FDA Consumer (May 1996), available at http://www.fda.gov/fdac/features/496_sick.html (finding that sickle cell anemia is most common in the African-American community); see also Kathleen Fergus & Jill Simonsen, Breast & Ovarian Cancer in the Ashkenazi Jewish Population, GeneticHealth, available at http://www.genetichealth.com/BROV_GEN_of_BROV_In_ASHJ.shtml (last modified Aug. 23, 2000) (finding that certain forms of breast cancer are more common in the Ashkenazi Jewish community than in members of the general population).

419 Green & Thomas, supra note 401, at 586.

420 Id. at 585.

421 Council for Responsible Genetics, A position Paper Presented by the Council for Responsible Genetics, at http://www.gene-watch.org/programs/geneticdisc/gd_pp.htrnl (last visited Apr. 6, 2001); NY Task Force Report, supra note 9, at 283.

422 Indeed, genetic essentialism has been “variously expressed as ‘good or bad blood,’ the Jukes and Kallikak families, Social Darwinism, or racial superiority/inferiority” and has pervaded American thought for the last century. Wertz, supra note 6, at 307. It is no wonder that yesterday’s eugenics distorts today’s genetics.

423 See Green & Thomas, supra note 401. “‘[G]enetic Essentialism’ is at the heart of people’s fears about the HGP, and explains in part why society has tried to set separate legal and ethical standards for the use of genetic information, different from those for other medical information.” Wertz, supra note 6, at 300-01.

424 See Huang, supra note 28, at 576.

425 Gostin & Hodge, supra note 362, at 36 (“Americans appear equally enamored with, and frightened by, the power of genetic information.”).

426 Beckwith & Alper, supra note 193, at 208; see Gostin & Hodge, supra note 362, at 31-36.

427 Nelkin & Lindee, supra note 5, at 40:

428 The relationship between genetics, genetic therapy and eugenics is thoughtfully teased out in Smith & Bums, supra note 6.

429 For instance, one advocacy group includes anecdotes of coverage denials. See, e.g., Council for Responsible Genetics, supra note 421.

430 See Wertz, supra note 6, at 309-10.

431 See generally David J. Rothman, Beginnings Count: The Technological Imperative in American Health Care (1997) (describing how early characterizations of technologies shaped their future meanings).

432 Wertz, supra note 6, at 300 (“Even though [the predictive and differentiating capabilities of genetics] may not be conceptually new, the HGP ultimately may provide greater accuracy.”).

433 That the information from DNA testing overlaps with information gleaned from other sources, such as blood tests, family histories and physical examinations, has compounded the difficulty of defining the term “genetic information” for the purposes of protective legislation. See, e.g., Mark A. Rothstein, Why Treating Genetic Information Separately is a Bad Idea, 4 Tex. Rev. L. & POL. 33, 33-34 (1999). This difficulty should suggest information from a prototypical DNA-test is not legally distinct from other types of medical information.

434 Jerry, supra note 267, at 768.

435 Id. at 769.

436 “Genetic exceptionalism discounts the ethical and legal need for affirmative protections for other, equally sensitive, personally identifiable health information … in a national health information infrastructure.” Gostin & Hodge, supra note 362, at 23.

437 “Genetic exceptionalism … is unfair to persons with non-genetic conditions by excluding them from protection of private interests which they would otherwise be entitled if their condition had a genetic origin.” Id. at 23-24.

438 This is essentially the strategy employed by various state statutes with broad definitions of genetic information. See, e.g., Jerry, supra note 267.

439 See, e.g., Assessing Genetic Risks, supra note 13, at 51-52 (discussing the appropriate age for testing for adult on-set disorders); Bobinski, supra note 296, at 80-86 (discussing when prenatal testing is appropriate); Mary Z. Pelias & Nathan J. Markward, The Human Genome Project and Public Perception: Truth and Consequences, 49 Emory L.J. 837, 845-50 (2000) (discussing professional organization recommendations).

440 “Genetic testing and screening are likely to become an important part of [medical records] as genetic information increasingly is linked to effective clinical diagnoses.” Gostin & Hodge, supra note 362, at 26.

441 Rothstein, supra note 433, at 33 (“[I]t is impossible to develop a working definition for what genetic information is.”). Rothstein also notes that separating out genetic information would be “economically infeasible” and a “logistical nightmare.” Id. at 34. See also Stone, supra note 19, at 150 (noting that “genetic information is too deeply embedded in the structure of general medical underwriting to be effectively] regulated separately” because genetic information is interwoven into every part of a person’s medical record).

442 Rothstein, supra note 433, at 34.

443 Stone, supra note 19, at 151.

444 Gostin & Hodge, supra note 362, at 31-32; NY Task Force Report, supra note 9, at 282 (citing a 1992 Office of Technology Assessment Survey which showed that a “family medical history was one of the two most important factors that health insurers use to determine insurability”); Wertz, supra note 6, at 311 (stating that the public seems “unaware of common threats to medical privacy” and that in light of this “overall lack of awareness … it seems somewhat ridiculous to single out DNA for special treatment under the law.”).

445 See Smith & Bums, supra note 413, at 25-26.

446 The right to privacy has been identified as a fundamental right by the Supreme Court. See, e.g., Griswold v. Connecticut, 381 U.S. 479, 485 (1965). In a case most analogous to genetic testing, Whalen v. Roe, 429 U.S. 589 (1977), the Supreme Court recognized that state record keeping of all of the names and addresses of people obtaining prescription drugs did fall within the constitutional privacy ambit, but that the scheme did not violate the Constitution. Id. at 602.

447 This is analogous to the long-standing right to preserve one’s bodily integrity and to ward off unwanted touching. Cruzan v. Director, Mo. Dep’t. of Health, 497 U.S. 261, 279 (1990).

448 See, e.g., Smith & Bums, supra note 6, at 43-46.

449 Id. Because immutable characteristics are more protected by courts, advocacy groups often try to reinvent what was a disease as an immutable characteristic. Thus, the “research constructing homosexuality as biological had a tactical advantage; it shifted responsibility from the person to the genes. … It would therefore be unjust for society to discrimination against them, for the Constitution, demanding equal protection, prohibits discrimination on the basis of immutable characteristics.” Nelkin & Lindee, supra note 5, at 121.

450 See supra notes 310-312.

451 Stone, supra note 19, at 146-47.

452 See Hall, supra note 343, at 16-17.

453 Assessing Genetic Risks, supra note 13, at 252 (quoting Norman Daniels, Insurability and the HIV Epidemic: Ethical Issues in Underwriting, 68 Mllbank Q. 497 (1990)).

454 See supra Part V.B. Genetic tests, however, do give an insurance company a powerful tool that may “vitiate the purpose of traditional private insurance as a risk-spreading mechanism” if insurers consistently have information about future health that, in the absence of genetics, they would not have. Smith & Bums, supra note 6 at 28. However, genetic tests also give insurance consumers powerful information that helps them assess their future risk. “Insurers, especially commercial insurers, see themselves engaged in a strategic game with consumers in which both sides are taking a gamble about expected future costs.” Stone, supra note 19, at 136.

455 Smith & Bums, supra note 6, at 28 (“The prospect of refusing to provide insurance to individuals because of a genetic trait is inequitable and contrary to public policy.”).

456 Id. In order for an individual to be found “responsible” for her ill health, she first “must be found culpable, which means that the ‘harm is in some way the product of some faulty aspect of the person or … her conduct.’ Second, the individual must be found liable, which means that ‘certain consequences do or ought to flow from this first judgment [of] culpability.’” Darby, supra note 314, at 790 (quoting Gerald Dworkin, Taking Risk, Assessing Responsibility, Hastings Ctr. Rep., Oct. 1981, at 28). Clearly, an individual is not culpable for her genetic make-up, therefore the liability question is not reached.

457 Mark A. Rothstein, Address at the Harvard Health Caucus on the Human Genome Project (Feb. 27, 2001).

458 See Jacobi, supra note 363, at 322.

459 Gostin & Hodge, supra note 362, at 33. See generally Samuel R. Bagenstos, Subordination, Stigma, and “Disability”, 86 Va. L. Rev. 101 (2000) (discussing the social stigma associated with disability).

460 Murray, supra note 344, at 218.

461 See Jacobi, supra note 363, at 337.

462 See Nelkin & Lindee, supra note 5, at 128 (quoting Marion Smiley):

463 Cf. Beckwith & Alper, supra note 193, at 208 (noting that the meritocracy objection to the use of genetic information in insurance “carr[ies] with it the invidious implication that we are responsible for our nongenetic diseases”); Darby, supra note 314, at 801-03 (discussing the difficulty of assessing whether certain at-risk behaviors are voluntary or involuntary in order to determine whether someone is “responsible” for their health or ill health).

464 See Beckwith & Alper, supra note 193, at 208; Gostin & Hodge, supra note 362, at 34-35; NY Task Force Report, supra note 9, at 288 (noting that in 1993 the National Institute of Health - U.S. Genome Research Task Force on Insurance stated that many diseases are in fact a combination of genetic and nongenetic factors).

465 Nelkin & Llndee, supra note 5, at 100 (noting that genetic essentialism is “a particularly striking theme in American society, where the very foundation of the democratic experiment was the belief in the improvability, indeed, the perfectibility of all human beings”).

466 See, e.g., Pelias & Markward, supra note 439, at 854-55 (discussing the lack of accurate public understanding about genetics).

467 Beckwith & Alper, supra note 193, at 207. See NY Task Force Report, supra note 9, at 72, 282-83.

468 Smith & Bums, supra note 6, at 31 (“The ‘heuristics of fear’ all too often blot out rational analysis of emerging genetic knowledge.”).

469 There are obviously situations in which specific rules need to be adopted for genetics, for instance, genetic cloning. In addition, there are numerous ethical problems beyond the insurance context. See, e.g., Malinowksi & O’Rourke, supra note 27, at 242-43 (discussing a host of ethical entanglements created by genetics). In some of these cases, genetic-specific legislation may be appropriate.

470 “Within this emerging [healthcare] system individuals, corporations, insurance companies, and hospitals are vying to shift the blame [for rising costs and poor health indicators] … Darby, supra note 314, at 788. See AARON, supra note 327, at 1-2 (outlining a triad of related concerns regarding dissatisfaction over health insurance: rapidly rising health care costs, persistent uninsured (and underinsured) despite spending and ungovemed use of medical technology).

471 See Genetic Alliance, Inc., supra note 34.

472 Rothstein, supra note 377, at 200:

473 Jagutis, supra note 340, at 434 (“Because genetic privacy is such a universal concern, federal regulation is entirely appropriate to strengthen the force of legislation.”).

474 See Beckwith & Alper, supra note 193, at 209 (“Genetic antidiscrimination legislation implicitly recognizes the importance of prohibiting discrimination based on all types of predictive medical information as opposed to prohibiting only that discrimination based on a person’s genotype.”).

475 Paul Starr, The Social Transformation of American Medicine 63 (1982) (noting that physicians were paid directly by the family either on a fee-for-service basis or on a fixed per annum basis).

476 See Robinson, supra note 302, at 20 (finding that as clinical techniques improved, hospitals changed from public and charitable institutions to privately owned institutions heavily dependent on the decisions of physicians). But cf. Starr supra note 475, at 71 (noting that productivity of physicians, measured by the number of services provided per day, increased in the beginning of the 20th century in a large part because of technological advances in other facets of daily living, including transportation improvements).

477 See generally STARR, supra note 475, at 145-62 (discussing the manner by which hospitals moved from the periphery to the center of medical practice).

478 Id. at 258 (noting that “[t]hough the broad objective of health insurance continues to be relieving the economic problems of sickness, the focus of reform shifted from stabilizing income and increasing efficiency to financing and expanding access to medical care”).

479 For a historical account of the rise of health insurance, see id. at 235-419.

480 Aaron, supra note 327, at 48 (“More than any other factor, the proliferation of medical technology explains the growth of health care spending.”); Rothstein, supra note 5, at 232 (noting that upwards of 50% of health cost increases can be attributed to technological advances); Press Release, health Ins. ass’n of am., timely Report finds Health care Costs Threaten Quality care (Mar. 7, 2001), available at http://www.hiaa.org/news/pressreleases.cfm. “The Center for Studying Health System Change (HSC) released a timely report that shows technological change, increased regulations on managed care plans, and increased consumer demand are driving up health care costs.” Id.

481 Aaron, supra note 327, at 77 (noting the negative health indicators for the uninsured); Beckwith & Alper, supra note 193, at 209 (noting that the public worries over the “loss of medical insurance in an era when the treatment costs can be astronomical”). But see, Victor R. Fuchs, Who Shall Live? Health, Economics, and Social Choice 198-99 (expanded ed. 1998) (noting the difficulty in determining the effect of a lack of health insurance on overall health).

482 Thus, while the “new genetics raise no new ethical problems in the sense of unique dilemmas not heretofore seen … [t]he new genetics … will magnify both the complexity and frequency” of existing problems, offering a powerful impetus for change. Smith & Bums, supra note 6, at 36.

483 The term “community-rating” includes a variety of insurance systems that in varying degrees preserve market stratification and limited traditional insurance practices. Mark A. Hall, The Competitive Impact of Small Group Health Insurance Reforms Laws, 32 U. Mlch. J.L. Ref. 685, 693 (1999) (describing types of community-rating).

484 Jacobi, supra note 363, at 312 (quoting William A. Glaser, Health Insurance in Practice: International Variations in Financing, Benefits, and problems 14 (1991)).

485 Id. at 333.

486 See, e.g., ROBINSON, supra note 302, at 5 (noting that beginning in the 1970s, “cost inflation drove premiums beyond the reach of low income workers and their families”); Darby, supra note 314, at 790-91 (noting that in the early 1970s fears of rising costs, insufficient access and medical inefficacy began to rapidly surface); President Clinton’s remarks during his State of the Union Address on Jan. 25, 1994;

President Bill Clinton, The State of the Union Address (Jan. 25, 1994), in Wash. Post, Jan. 26, 1994, at A12, reprinted in Lawrence O. Gostin, Securing Health or Just Health Care? The Effect of the Health Care System on the Health of America, 39 ST. LOUIS U. L.J. 7, 43 (1995).

487 Beckwith & Alper, supra note 193, at 208 (noting that while one alternative to genetic exceptionalist legislation would be single-payer universal coverage, “in the present political climate, the prospect of a universal health care system seems unlikely”).

488 U.S. CONST, art. I, § 8, cl. 3.

489 See CNN.COM, Health Insurance Lobbies to Merge (Nov. 30, 2000), at http://www.cnn.com/ 2000/HEALTH/l 1/30/insurance.lobby.ap (discussing the consolidation of two powerful health insurance lobbying organizations and their opposition to most health insurance reforms).

490 There are signs that such a mandate exists. By one count, as of Sept. 1999 there were in excess of twenty bills pending in the 106th Congress that could affect the use of genetic information by health insurers. Jerry, supra note 267, at 782 n.83.

491 Robinson, supra note 302, at 60-61 (noting that large companies can diversify risk, lower premiums and out-price smaller companies). Consolidation is already occurring. Hall, supra note 483, at 699-700.

492 Robinson, supra note 302, at 59.

493 This is partly attributable to the employer practice of screening out sick (or potentially sick) workers. See, e.g., NY Task Force Report, supra note 9, at 295.

494 The obvious exception to this argument are disabled Americans who are entitled to reasonable accommodation under the ADA to continue working.

495 See Aaron, supra note 327, at 77.

496 Stone, supra note 19, at 135.

497 A similar idea—the creation of “risk pools” by aggregating smaller companies and treating then like a single large group for the purpose of setting premiums—has gained attention. Aaron, supra note 327, at 111-12 (citing Randall R. Bovbjerg, Insuring the Uninsured through Private Action: Ideas and Initiatives, 23 Inquiry 403-18 (1986)); Hall, supra note 483, at 694 (outlining private purchasing cooperatives).

498 Hall, supra note 483, at 691-92 (discussing that “guarantee issue” means that insurers who offer plans in a specific area have to cover anyone who applies, but may not require a ceiling on premiums).

499 Rothstein, supra note 377, at 199.

500 Beckwith & Alper, supra note 193, at 207 (“The insurance industry fears that, as a result of … [adverse selection], high-risk individuals will buy a disproportionate amount of insurance, thereby distorting risk-adjustment pools and leading to higher premiums for all.”).

501 Rothstein, supra note 377, at 199-200.

502 Id. at 200.

503 Jerry, supra note 267, at 763-64.

504 Id. at 764.

505 Id. at 763.

506 Id.

507 id. at 764.

508 “[S]ystems which are neither compulsory nor universal must contend with the desire of individuals to organize in[to] … communities consisting of individuals with similar loss potential.” Id. at 766. Alternatively, public subsidies could be used to assist these communities when the “actual loss experience indicates abnormally high costs.” AARON, supra note 327, at 111.

509 For a description of state experiments with community-rating programs for individuals and small groups, see NY Task Force Report, supra note 9 at 286-87; Assessing Genetic Risks, supra note 13, at 271. Additionally, Blue Cross/Blue Shield (BC/BS) typically offered community-rated plans. BC/BS had difficulty maintaining these plans, however, because commercial insurers could enter the market and offer experience-rated plans with lower premiums for low-risk people, drawing customers away from BC/BS and leaving them with a large pool of high-risk individuals. Aaron, supra note 327, at 31-32. If community insurance were mandated, this dilemma would disappear.

510 Robinson, supra note 302, at 3 (“Most experiments [in the health care sector] fail, and system-wide innovation is a close cousin to chaos.”).

511 Id. at 21 (noting that traditionally the “sickest citizens were excluded from employment- based insurance since they were too ill to work”).

512 Darby, supra note 314, at 788 (noting that rising healthcare costs and a poor return on our expenditures raise “issues related to cost containment” and that “[a]venues for cost reductions are constantly being explored and modified”).

513 This, by the way, is not a foregone conclusion. As genetic tests offer considerable preventive health benefits and genomics can eliminate costly, but useless trial and error therapies, incorporating a person’s genome into everyday medical care could substantially decrease costs. Furthermore, moving people into reliable and adequate health insurance may provide the consistent primary care necessary for good preventative medicine and overall improvements in health. Both extensions of genetic tests might lower costs. See generally Assessing Genetic Risks, supra note 13, at 236-37 (noting that genetic screening may be treated like other currently reimbursed screening and preventative services, such as mammograms).

514 See generally Bagenstos, supra note 458, at 101; Gostin & Hodge, supra note 362; Jacobi, supra note 363.

515 Elizabeth Anderson, Value in Ethics and Economics 14,141 (1993) (“[P]eop1e value different goods in different ways” and “[ijdeals require people to care about goods in particular ways, by embedding them in appropriate relations of production, protection, distribution, and enjoyment.”). Thus, the appropriate or just means of valuing healthcare access may not be simply a reflection of its monetary costs.

516 See generally id.

517 U.S. Census Bureau, Health Insurance Detailed Table: 1999, available at http://www.census.gov/hhes/hlthins/hlthin99/dtablel.html (detailing that 15.5% of the population, or roughly 42,554,000 people, lacked health insurance for the entire 1999 calendar year).

518 See generally Aaron, supra note 327 (discussing the ongoing debate on healthcare reform); FUCHS, supra note 481, at 202 (stating in his view “the prospects for national health insurance in the short run are poor”); Jacobi, supra note 363, at 318 n.31 (noting a multitude of arguments for and against healthcare).

519 See id.

520 Fuchs, supra note 481, at 199-200.

521 Id. at 200-01.

522 Id. at 201 (finding that there is a diminished feeling of “mutual responsibility” as a result of the common discussion of American entitlements).

523 STARR, supra note 475, at 200 (noting that physician groups have a long standing “dislike” for “socialized medicine”).

524 See generally Fuchs, supra note 481, at 192 (discussing why universal health insurance has been unsuccessful in the past); ROBINSON, supra note 302, at 47-48 (discussing the various groups that aligned against the Clinton plan); W. John Thomas, The Clinton Health Care Reform Plan: A Failed Dramatic Presentation, 7 STAN. L. & POL’Y Rev. 83 (1996) (discussing the development and failure of Clinton’s universal healthcare proposal).

525 Aaron, supra note 327, at 109 (noting that one prerequisite for massive healthcare reform is “further deterioration in support for the current system, which rising costs, cost control efforts, and narrowing coverage make likely.”).

526 Id. at 75-77.

527 See Aaron, supra note 327, at 33-34, 76; Robinson, supra note 302, at 44 (noting that by 1990, most Americans unable to secure health insurance were employees in small firms or children of small firm employers that did not offer health insurance as an employee benefit).

528 Managed care includes a variety of insurance arrangements, but in general refers to reimbursement plans that “generally provide comprehensive health services to their members, and offer financial incentives for patients to use the providers who belong to the plan. In managed care plans, instead of paying separately for each service that you receive, your coverage is paid in advance.” See Health Ins. Ass’n Am., supra note 332; see also Robinson, supra note 302, at 8 (noting that, for the most part, prepaid group practice did not reach local communities until the 1990s).

529 Lock, supra note 36, at 84 (‘“The human DNA sequence will be a mosaic of some hypothetical average person corresponding to no one.’ We will all become, in effect, deviations from this abstracted norm.” (quoting Richard Lewontin)).

530 Murray, supra note 344, at 217.

531 Stone, supra note 19, at 138.

532 Id. at 134.

533 Jacobi, supra note 363, at 365-66 (noting that the trend of regulatory involvement in the market of health coverage has shifted toward a social pooling of risk to gradually and economically reach the goal of universal health coverage). See also Rothstein, supra note 5, at 224: